Why did you start the Marshall Protocol? How did you hear about the treatment?

In 1997 I was working as an engineering manager for an automotive equipment supplier in the Detroit area. At 56, I was in the best shape of my life and was age group competing in distance running (ran two marathons), biathlon/duathlons (run-bike-run), and state sponsored track and field events. What I was soon to realize was that you can be in excellent physical shape and still not be healthy.

I hadn’t suffered from a cold or flu for years. However, that changed in October when everyone in the office, including myself, became ill with what seemed to be a bad chest cold. It ran its course after about two weeks for everyone except me. I continued to suffer from a bad cough and fatigue. Finally, I went to see a doctor. A chest x-ray showed that I had non-caseating granulomas in the lymph nodes. The presence of the granulomas was later confirmed via mediastinoscopy biopsy and I was officially diagnosed with sarcoidosis. It was a good news/bad news situation. The good news was: “You don’t have cancer”; the bad news was: “You have an idiopathic disease that has no known cause and thus no treatment or cure.” In retrospect, I realize the office flu was just a precipitating event that weakened my immune system to the point where my sarcoidosis finally became apparent.

The standard medical position for treating sarcoidosis was/is to simply wait for two years in order to see if the disease might go into remission – something I now know simply doesn’t happen. After my two years of discomfort, during which I experienced a wide array of symptoms in various body parts, my doctor decided that I should take the corticosteroid medication prednisone to palliate my symptoms. Within a week my symptoms improved.

Looking back, I realize that the relief I obtained from prednisone was only a short-term consequence of the fact that the steroidal drug slows the activity of the innate immune system. This leads to a decrease in the painful inflammation generated as chronic bacteria are killed. But since the immune response is weakened, the pathogens that cause any number of inflammatory diseases (in my case sarcoidosis) are able to spread with relative ease.

During my time on prednisone my sarcoidosis actually worsened. I was treated with prednisone on and off for five years before fully understanding that it was a bad idea with serious side effects. Thankfully, I stopped the drug in April 2005.

In the meantime, I had taken early retirement for health reasons and had decided to spend as much time as possible researching sarcoidosis on my own. Thanks to the Internet, I found the Marshall Protocol (MP) study site and began reading the extensive information it offered. The idea that sarcoidosis and, in fact, all chronic inflammatory diseases are caused by chronic intracellular and biofilm-like bacteria just flat made sense!

The more I read on the MP study site, the more interested I became. It was obvious that the MP was counterintuitive to mainstream dogma in many ways. The fact that acceptance of the MP requires one to embrace numerous alternate hypotheses means that the treatment has yet to be fully discovered or accepted by many mainstream researchers and doctors. But in my eyes, one of the most compelling aspects of the MP is that it works to re-establish the immune system itself as the agent for eradicating the pathogens that cause chronic disease. What can be bad about a healthy immune system??!!

I found a doctor who was willing to prescribe the necessary MP medications and had my vitamin D-metabolites tested. My 25-D was 41 ng/ml, which, as expected, confirmed that I had recently, and unfortunately, been supplementing with vitamin D. My 1,25-D was 50 pg/ml. When I posted the levels on the study site, the nurse moderators quickly explained that my 1,25-D level was 2.2 sigma high and that 98.6% of the population would be expected to have lower levels of the hormone/secosteroid.

Encouraged by the fact that my D tests were indicative of inflammatory disease, I became even more convinced that the MP would effectively treat my sarcoidosis. I started the Protocol on December 1st, 2005.

Then what happened?

Another point that speaks well of the MP is that it is predictable. The science behind the Protocol dictated that I would experience immunopathology or a “herx” reaction as my immune system started to recover and regain the ability to destroy infected cells. The release of toxins into the blood as the infected cells are destroyed exacerbates the disease symptoms. In the first week, on Benicar alone, I recognized this effect in my hands as the arthritic joint pain intensified and then completely resolved in less than two weeks. Recognizing this first herx gave me additional confidence in the MP.

Another disease symptom that developed after I started the MP was low blood pressure, so I had to be careful not to get up too quickly. I was about five months into the MP when I first noticed this. One day, forgetting to be cautious, I quickly got out of bed and after a couple steps fainted for a few seconds. I fell and landed on my left hip. The fall jarred my whole body and naturally I was quite sore for a couple days. Soon after the fall, I started to pass blood for the next couple of voids. But because the bleeding quickly cleared up, I didn’t make an effort to determine its cause. But later on, when I finally did see a doctor and completed a cystoscopy, it was determined that the blood noticed after the fall was caused by a bladder tumor.

Do you think the MP contributed to the development of your tumor?

No. The type and size of the tumor strongly suggested that it was already in place when I started the MP.

Was the tumor indicative of cancer?

I tried to ignore the first sign of blood hoping it would just go away, but you know how that usually goes. Toward the end of November 2006, I started to see blood again so I couldn’t ignore it any longer.

A CT scan was unremarkable for kidney stones or other possible causes of the bleeding. So my doctors proceeded to perform a cystoscopy of the bladder – a procedure that involves inserting a scope into the bladder via the urethra….ugggg!

Thanks to the video images generated by the scope, I was able to see the inside of my bladder landscape on the monitor, along with the technician. There it was! A tumor about 3 cm (a little over an inch) attached to the bladder wall. When the technician irrigated it, it produced blood.

Gene and his granddaughter

We had found the source of the bleeding. The tumor was pale pink in color and looked very much like coral. It moved easily when the irrigation caused it to flow back and forth. The vision of the small, pale tumor wavering on a screen will stay with me forever. A later assay of the bladder wash confirmed abnormal cells and malignancy (indicating cancer) was expected.

After seeing the tumor, I immediately assumed I was facing the worst case scenario – a cystectomy, which is a surgical procedure that removes the urinary bladder. Fortunately this worst case concern didn’t end up becoming necessary. But until I got more information about my situation from my doctor, my imagination cost me a couple nights sleep.

Seems like nothing is ever simple! I have also had benign prostatic hyperplasia (BPH) for several years. This caused a prostate bulge into the bladder and it turned out that to do the transurethral resection (TUR) of the tumor, a significant amount of the obstructing prostate would need to be removed.

My TUR was scheduled and the necessary surgery was done to trim away the prostate and then remove the tumor. It was not easy as my doc said there was a significant amount of blood from the prostate surgery that made it difficult to see the tumor plus the high loss of blood was a concern.

Standard procedure following a TUR for tumor resection is to wash the bladder with a chemotherapy medication such as Mitomycin C in order to destroy any cancer cells that may have dislodged from the tumor and remain in the bladder. However, in my case, this wasn’t possible because of the open wound from the prostate surgery.

Before the surgery, I had many helpful discussions with the MP nurse moderators in regard to special measures that must be taken when one has surgery while taking the MP medications. I decided to keep taking the MP meds during my surgery, which naturally resulted in discussions with both my anesthesiologist and my surgeon. Antibiotics were selected to be compatible with those used by the MP so that I was successfully able to stay on the MP during and after the surgery.

Biopsy of the tumor gave definition to the problem. It was described as “High Grade Noninvasive Papillary Transitional Cell Carcinoma.” In other words, using the WHO ranking system of bladder wall penetration and cell progression, my tumor was rated as “Ta” for cell wall invasion and as a “grade 3” for progression. The fact that my tumor was “Ta” suggested that it had been confined to the inner lining of my bladder. This was seen as a good thing. But “grade 3″ indicated that the cells of the tumor had been proliferating and dividing rapidly, suggesting that the tumor had a high rate of progression. This was seen as a bad thing.

Based on my own research, I learned that the higher the grade of the diagnosis, the higher the incidence of death from the disease within two years. It was a sobering thought! Approximately 67,000 bladder cancer diagnoses are made each year. The degree of severity and ultimate outcome varies depending on the ranking of the cancer. For example, a Ta grade 1 being the best prognosis and a Tcis grade 3, not so good.

What different treatment options did your doctor consider in order to treat the cancer?

There are two intravesical drug therapy treatments commonly used after a malignant bladder TUR, either BCG or chemotherapy such as Mitomycin C.

Intravesical therapy consists of drugs placed into the bladder in an attempt to prevent tumor reoccurrence. Bacille Calmette-Guerin (BCG) is an immunotherapeutic agent derived from live tuberculosis bacteria. Mitomycin C is one of several chemotherapy medications used for the same purpose. My doctor wanted to prescribe BCG because of the aggressive grade 3 nature of the tumor. It would have required a weekly two hour intravesical treatment for duration of 6 to 8 weeks.

After the proposed BCG treatment, he also prescribed follow up cystoscopy inspections of the bladder every three months for the next two years.

Did you follow his treatment regime or did you decide to deviate from it?

I explained to my doctor that I was following the MP to treat my sarcoidosis. I also explained that sarcoidosis and other inflammatory diseases are the result of chronic bacterial infection. Since I was trying to kill a high load of chronic pathogens with the MP, and BCG is made from live tuberculosis bacteria, it just didn’t make sense to add more bacteria to the mix I was trying to eliminate.

This was especially true considering the fact that, like other inflammatory diseases, bladder cancer might also have a bacterial pathogenesis. Several cancers, including gastric cancer, have already been tied to bacteria and that list is growing. Also, since BCG is immunomodulatory, it was counterintuitive to take the medication when I was working to strengthen my immune function with the MP.

Patients on the Marshall Protocol take the medication Benicar 3-4 times a day. Benicar activates the Vitamin D Receptor – a fundamental receptor of the body that not only controls the innate immune system response but also the transcription of hundreds of genes. So besides working to strengthen my immune system, Benicar also allows my body to more effectively transcribe important genes, several of which are involved in cancer. For example, a functioning VDR is needed to transcribe the “Metastasis Suppressing Protein” MTSS1 – a protein that prevents cancerous cells from dividing.

By this time, I had used the internet to a great extent in order to research bladder cancer, my specific cancer diagnosis, and the possible treatments after a TUR. My best source of information was the MP web site and Dr Marshall’s (and the nurse moderators’) direct feedback concerning my situation.

I wrote a post on the Board asking whether BCG could prove helpful in fighting my cancer. I got an immediate response from Dr. Marshall that went something like this: “HELL NO!!!” After he calmed down a bit, he started to explain that there is documented evidence that BCG has been implicated in actually causing sarcoidosis and that neither BCG nor chemotherapy treatments are perceived as means to bring about true recovery. Rather, they are only measures designed to prolong life. While my doctor argued that the BCG would be contained inside my bladder and thus wouldn’t negatively affect my other organs, Dr. Marshall wasn’t convinced.

Dr. Marshall believes that BCG probably ‘works’ by diverting the innate immune response away from targeting the Th1 pathogens. The innate immune system is forced to mount a response to any pathogen that enters the body. So when BCG is introduced, a patient’s immune system may very well stop targeting the Th1 pathogens that cause sarcoidosis, cancer, and other chronic inflammatory diseases and instead focus on dealing with the large amounts of live bacteria introduced by the drug.

Of course, it is when the Th1 pathogens die that the immune system mounts an inflammatory reaction to their death. So if BCG does divert the immune system from killing the Th1 pathogens, a patient will experience a temporary drop in inflammation. And since high levels of inflammation put the body under increased stress, the drug may indeed tack a few extra years onto the lifespan. But diversion of the immune system is not a curative therapy and quality of life can be expected to drop as the years wear on. Furthermore, since fewer of the Th1 pathogens are likely killed while a patient is administered BCG, they are actually able to spread with greater ease, causing much more trouble in the long-term. So while taking BCG might have added a few years to my life, had I actually taken the medication, my sarcoidosis, cancer, and possibly other related inflammatory diseases would have likely progressed, and returned in greater force later down the road.

The fact that BCG might be capable of diverting the immune system from killing the Th1 pathogens is also a red flag that bladder cancer has a bacterial pathogenesis. Whenever diverting the immune system (as BCG probably does in the bladder) results in decreased inflammation, one can hypothesize that the drop simply reflects a decrease in Th1 bacterial death.

Now that Gene has substantially recovered his health, he mas much more time to spend with his grandchildren.

Statistics on the effectiveness of BCG or chemotherapy support Dr. Marshall’s views on BCG. When I looked for statistics on the effectiveness of BCG on the Internet, it was my impression that, even without taking into consideration the negative long-term consequences of treatment side effects, it was hard to find convincing statistical evidence that patients who were administered BCG or chemo treatments achieved a significantly long-term better prognosis than doing nothing. Appreciating the bleak reality of such statistics marked a turning point in my approach to recovery from cancer.

I realized that if chronic bacterial infection very likely drives the inflammatory pathogenesis of cancer, then the best way to defeat the disease was not to divert my immune system from killing the pathogens making me ill, but to keep it focused on killing them. The Marshall Protocol was allowing me to do just that. While I realized that activating my innate immune response with the treatment would temporarily increase bacterial death and subsequently inflammation, ultimately, when the pathogens were eliminated, I would end up actually cured from both my sarcoidosis and cancer. I would not just achieve remission or a slightly longer life before the diseases reoccurred.

So while deciding whether or not to treat my cancer conventionally, I began to get the feeling of deja vu. Just as prednisone is an immmunosuppressant used to treat sarcoidosis, BCG is an immunomodulatory agent used to treat cancer. While it had taken me a while to understand that taking prednisone was a mistake, I was quickly able to realize that BCG was a mistake as well. I have become my own health advocate and, if it doesn’t make sense, I don’t do it.

For example, a quick look at some of the side effects for BCG made me cringe. To name a few: bladder infection, bladder irritation, burning, frequent need to void, pain while voiding, bladder scarring, general infection… There was also this grisly recommendation: “Pour bleach into the toilet after urinating to kill any leftover bacteria.”

Why is the possibility of infection so prevalent among those taking BCG? Probably because the drug diverts the immune system from effectively killing pathogens other than those introduced by the treatment.

Intravesical chemotherapy treatment, other than the bladder wash conducted at the end of the surgery, was simply never a viable option. Even my doctor indicated that the documented improvements in response to such therapy were not impressive. Again, documented improvements were measured on the treatment achieving a longer survival time and not a cure.

So I assume you opted not to take BCG. How did your doctor react to your decision?

I give my doctor credit. He was interested in the MP and asked if he could speak with Dr. Marshall, which he did. He called me after their conversation and one of the points I remember him making was that he realized I was dealing with two illnesses – cancer and sarcoidosis. Dr. Marshall confirmed having a lengthy conversation with my doctor and I believe he came away convinced of my doctor’s sincere concern for my health.

After that, my doctor was willing to let me continue the MP while not using BCG or chemotherapy. He continued to require cystoscopy inspections every three months in order to monitor the state of my cancer. He kept asking how long it would take the MP to cure my sarcoidosis so that he could start BCG treatment for my cancer. It hadn’t yet occurred to him that the MP was very likely eliminating bacteria involved in both diseases.

Then I hit a bump in the road. My first follow-up cystoscopy showed two additional tumors similar to the first one, but of course much smaller. Surgery again was required to remove them but this time doc was able to use Mitomycin C as a chemotherapy wash of the bladder to be sure to kill any tumor debris that might have escaped the resection. The prostate wound from the previous surgery had healed nicely.

It was a big disappointment to discover the new tumors! But by that time I had been on the MP for 17 months and I continued to experience immunopathology for my sarciodosis symptoms. I was progressing as fast as possible through the various MP antibiotics, yet still maintaining tolerable levels of symptoms. I knew I was reactivating my innate immune response via the VDR and providing the gene transcriptions necessary to allow my body to naturally combat my cancer and prevent metastasis.

The logic was there to stay the course. Plus, I really didn’t have any other reasonable options, at least in my opinion. I also had the support of my family and doctor which helped a lot, despite the fact that I could see his skepticism building. At that point I think doc was just waiting for the next surgery. Well, it didn’t happen. Three months later my next cystoscopy was negative for tumors and the bladder wash did not indicate any abnormal cells.

What is your cancer status like today? Would you still qualify as having bladder cancer or are you considered to be recovered?

It is too early to say my cancer is a thing of the past. I have only been cancer free for the past year. My doctor insists that we continue the bladder scopes every three months over the next 2 years and then every 6 months during the three years that follow. My grade 3 progression rating is a big concern for him, and of course for me.

In December 2007 my doctor prescribed a FISH assay of the bladder wash (FISH is an acronym for “florescence in situ hybridization,” a method that allows for the detection of cancerous cells by chromosomal study). I tested negative which is very encouraging. The negative test result also indicates that other components of my urinary system such as the prostate, kidneys and the plumbing are probably also cancer free.

My bladder wash was again negative for cancer cells tested after my May 2008 bladder scope. That marks a full year without any sign on the cancer returning. I am very encouraged but again, time will tell.

Bladder cancer can be deadly. Has that concern affected the dosing and timing of your MP antibiotics?

At the time of my May 2008 cystoscopy, I had been on the MP for two and a half years and many of my sarciodosis symptoms had either resolved or improved. I really didn’t have to make any changes to the MP in order to use it as a means to fight my cancer. I didn’t experience any noticeable immunopathology associated with the bladder. My main objective was simply to get my innate immune system back to a place where it was working as effectively as possible so that it could combat the intracellular and biofilm bacteria driving my sarcoidosis and probably my cancer as well. I suspect my five years of prednisone had compromised my immune system enough to allow my bacteria to spread to a fairly large degree.

What advice do you have for other people who might want to use the MP as an anti-cancer treatment?

By the time one is diagnosed with cancer, the immune system has probably already been greatly compromised by the chronic bacteria that almost certainly drive at least part of the disease pathogenesis. For all we know, tumors may just be clumps of severely infected cells.

It takes time for the Marshall Protocol to kill chronic bacteria and full restoration of the innate immune response with Benicar takes months and, in most cases, years. So starting the MP after a cancer diagnosis is not the ideal scenario. Under such circumstances, tumors are already formed and the disease process is largely in place. The MP can only do so much to help patients dig themselves out of a hole and gradually turn things around.

Granted, I had started the MP slightly before my tumor was detected, but because I had not been on the treatment for a long period of time, I still developed two subsequent tumors down the road. It’s only after being on the MP for a good two years that I believe I have been able to lower my bacterial load and restore my immune function to the point where now I seem to be keeping my cancer at bay. Unfortunately, though, some people with cancer don’t have two years.

So the bleak reality that most of us are destined to get cancer, or some other inflammatory disease connected to the presence of chronic bacterial infection, means that the MP can be used as a very effective preventative measure against getting cancer in the first place. If I had started the MP several years earlier, before the onset of my inflammatory symptoms, it’s quite likely that the treatment could have heightened my innate immune response to the point where the bacteria that likely cause cancer and sarcoidosis might not have spread in the first place.

Such thinking is backed up by statistics from the MP study site which show that among a high risk population (hundreds of generally elderly people at a high-risk for cancer) there are no instances of active metastasis (spread of infected cancerous cells). Clearly, the MP is working to prevent the progression of cancer in the first place. As Dr. Marshall has stated, “Benicar reactivates the VDR. One of the genes transcribed by the VDR is MTSS1, the Metastasis Suppressor number one. Old tumors might hang around, but I have seen no evidence of cancers spreading while folk are on the MP. Metastasis is apparently suppressed. Funny about that… Remember that you read it here first.”

However, in my opinion, even those patients not using the MP as a preventative therapy should start it ASAP after a cancer diagnosis. They certainly have more hope of truly recovering from their disease if they use a treatment that improves immune function and gene transcription, than using treatments like BCG that might actually interfere with the immune response. I had not been on the MP very long before my cancer diagnosis and I am confident that the reason I am cancer free today is because I used the treatment to gradually endow my immune system with the power to fight my disease. From now on, I am convinced that my immune response will only get stronger, making my prognosis a positive one.

Can you describe the progression of your disease?

I first started to feel symptoms of illness when I was in high school. I suffered from fatigue, weakness and joint pain. Yet, the symptoms were rather vague and only flared periodically.

In fact, they stabilized for the most part until I had my first child when I was 23. At that point, the same symptoms returned, but this time they were stronger. They were also accompanied by new central nervous symptoms such as blurry vision and dull headaches. An EEG test showed that my brainwave function was off balance.

But in a few months, the symptoms started to wane again in an on/off fashion. They would either flare or not be much of a problem. During the times when my symptoms weren’t flaring, I would try to push the idea of disease from my mind and considered myself healthy. Yet by the time I reached my late 30s, the pain and symptoms started to become more prominent and started to become constant. The fatigue and weakness were severe.

At that point I had just stopped attending nursing school. During one of my nursing clinicals, I had treated a woman with lupus. As her caretaker, I was required to do a case study about the disease. As I researched lupus, I was struck by how many of my own symptoms resembled those of my patient. I was also flabbergasted by the fact that her disease history was very similar to mine.

I had started seeing several doctors in an effort to understand why I was feeling so ill. I mentioned the fact that I might have lupus to my doctor and it turned out that he had also been considering that possibility. He ran an ANA (anti-nuclear antibody) test. Positive results to the test strongly suggest a patient is suffering from lupus. My test results were positive, and since I also displayed essentially all the symptoms of the disease, I was officially diagnosed with lupus.

Around the same time, I saw an eye doctor. I had gone to see him partly because my eyes and mouth were incredibly dry. It turns out that dry mouth and dry eyes are classic symptoms of Primary Sjogren’s Syndrome. Thus, I was also diagnosed with Sjogren’s.

My doctors insisted that corticosteroid medications could help my conditions. I started a month of heavy high-dose IVs containing the steroid medication medrol. At the same time, I was also put on another steroid medication called methodextrate. After a month of intensive IV therapy with medrol I began to take it orally, and did so, along with methodextrate, for the next 12 years. I now understand that while these steroids may have temporarily lowered the inflammation generated by the bacteria causing my symptoms, the fact that they slowed by immune system allowed the same pathogens to spread with much greater ease, making me much sicker over the long-term.

Bonnie along with her daughter (center) and her mother (left)

So as time wore on I got worse, and in the process, became increasingly cognitively impaired. I suffered from a high level of brain fog. I started to have trouble coming up with the correct word when writing or speaking, and also had problems reading because words didn’t seem to register anymore. This meant I could no longer enjoy reading, which was difficult. I also suffered from short-term memory loss.

Despite extreme difficulty, I continued to work as a teacher. But during the early 90s I started teaching under very stressful conditions. I began to suffer from extra fatigue and joint pain. I also started to have TIAs or “mini” strokes that can sometimes be followed by an actual stroke. Finally, all my symptoms flared so badly that I had to quit my job and go on disability. The symptoms hit me all at once and harder than ever. I felt really terrible.

How did you find the Marshall Protocol?

At the time I was seeing a doctor in Texas who was really knowledgeable about cutting-edge medical treatments for lupus. For a while he had me on an antibiotic therapy called the RoadBack Protocol. Like the MP, the treatment uses pulsed, low-dose minocycline. But without the help of Benicar and the other bacteriostatic antibiotics used by the MP, I was unable to fully target my bacterial load.

Then, one day, my physician informed me that he had learned about the Marshall Protocol. He was really excited about it and had come across the treatment in an effort to treat scleroderma – a skin condition that he suffered from. He planned to start the Marshall Protocol himself and also prescribed me the medications necessary to begin. I started the MP about 2 1/2 years ago.

After some time, I was forced to switch physicians, in part because I wanted to see a doctor who practiced closer to Oklahoma, where my husband and I currently live. I found another MP doctor in Oklahoma through the MP study site and he has proven to be extremely helpful and knowledgeable.

Since I had been taking corticosteroid medications for 12 years, and the medications were slowing the activity of my immune system, I needed to stop them before starting the MP. I was surprised that a few ups and downs aside, I was able to wean off them without too much anguish. I definitely felt an increase in my disease symptoms as I weaned off the steroids, but it was livable and I was able to “hang in there.” I have a strong feeling that the reason I was able to wean off the steroids with such success was that I took Benicar as per the MP guidelines during the weaning process. The anti-inflammatory effects of the medication surely made it easier for me to tolerate the heightened level of symptoms that resulted when my immune system started to “wake up” again and begin to combat the bacteria making me ill. After the weaning process was complete, I spent several months stabilizing on Benicar alone before starting the MP antibiotics.

Within six months of starting the antibiotics, I felt a bit better in the sense that my fatigue and weakness were not as bad as before. My sense of overall wellness also improved at that point. My immunopathology (bacterial die-off reactions) fluctuated as expected, depending on my antibiotic dose and the combination of antibiotics I was taking at any given period of time.

How do you feel today?

I’m on Phase 3 of the MP and almost feel like a completely normal person again. I have resiliency and energy for the first time in years.

Bonnie is now able to spend much more time with her grandchildren

For as long as I can remember, I’ve had a housekeeper come to my house to do the cleaning for me. Now, I have started to do all the cleaning on my own again. I do all my own shopping again too. There are many other little things I’m able to do now that I haven’t been able to do for a very long time. I’m able to travel much more easily. I go on more vacations and have been able to visit my children frequently.

The results of my ANA tests have been negative the last few times when it was checked, strongly suggesting I no longer have lupus. Of course, before I started the MP the test results were positive. My eyes and mouth feel more moist and I doubt that I’d qualify for a Sjogren’s diagnosis anymore either.

I also feel much more alert and I certainly don’t have the degree of brain fog that I had when I started the MP. Any central nervous system symptoms are minimal if present at all. I can finally enjoy reading again and can spend more time on the computer.

Tell me about your your ability to tolerate light.

I was already light-sensitive for years before starting the MP. When I started the MP, I continued to stay out of sunlight and bright lights. It’s hard to judge how much my light sensitivity has improved because I’m still cautious about not getting too much light, but it doesn’t seem that light bothers me as much anymore. There have been several times when I’ve been exposed to sunlight, yet failed to react with the increase in symptoms that I would have expected before the MP. We just got a new puppy. I’ve been taking him on more walks outside during the day and have not been bothered by the light at all.

How does you doctor feel about your progress?

Two appointments ago he told me that all my lab work indicates that I’m recovering. He said that the MP is clearly helping me.

What advice do you have for other patients interested in the MP?

The MP seems daunting at first, especially because of the dietary and sunlight restrictions. But it’s so worth hanging in there! Right now I can function better than I have in years, better than I could when I was younger! Oh, it’s so worth it! I know the hard part is behind me and I’m enjoying life again.

What lies ahead?

I see no limits to my ability to recover and hope to become increasingly active. I also hope to share the story of my success on the MP with as many people as possible since I firmly believe the Marshall Protocol is the answer for illnesses such as lupus, Sjogren’s and other inflammatory diseases.

Can you describe the progression of your disease?

It’s difficult to tell when I first started to feel sick, since it developed so slowly. Even as a teenager I wondered how people could run long distances, breathing through their nose! – I couldn’t, I was already a mouth-breather.

In my early twenties I had a bout of glandular fever (Epstein-Barr virus) from which I took a long time to recover. In the late 1970s I constantly had small scabby sores in my nose.

I first began to think that I might be chronically ill about 25 years ago and my symptoms kept on increasing gradually.

In the early 80s, when I was around 35 years old, I started to suffer from very severe sore throats and an array of flu-like symptoms including a high level of fatigue. I became very sensitive to light. My eyes had a hard time adjusting to sunlight, so I was forced to squint and wear dark sunglasses whenever I was outside during the day.

I also started to suffer from rhinitis – a disease that involves irritation and inflammation of internal areas of the nose. My nose was running all the time. Some doctors called it allergies or hay fever. The name didn’t really matter. One allergist tried to treat the symptoms with a technique called desensitization, which involved injections of dilute solutions of the things I was supposed to be sensitive to.

I began to get progressively sicker, both physically and cognitively. I couldn’t think! Before becoming ill, I had easily acquired two degrees with double majors: one major was in Pure Mathematics. But by the early 90s, I could no longer add up a column of five figures. I would literally have to count on my fingers. Eventually, the only way I could add numbers was to put them into a spreadsheet. The “flu” and fatigue was now constant. I coped by resting or sleeping as much as possible – to the extent of falling asleep when I was supposed to pick my daughter up from a school dance.

My general practitioner got to the stage where he finally said, “I just don’t know what’s wrong with you – I think you’d better see a psychiatrist.” So I was neatly blamed for his inability to diagnose or treat me.

At that point (early 90s), I went to work in a new building, and began to suspect that the air quality in the building was affecting me. I persuaded management to test the formaldehyde concentrations, which were found to be high. The amount of natural ventilation was increased, until the building’s managers realized that this was driving up the cooling/heating costs….

I went to see a few “alternative” doctors and other health practitioners, such as naturopaths. Depending on their areas of interest, they diagnosed me with different things.

I went to one doctor who specialized in environmental medicine. He finally diagnosed me with Chronic Fatigue Syndrome. Later, the Australian Medical Association suspended him from practicing, simply because he was trying to figure out what might be wrong with his CFS patients and referring them for non-standard tests by pathology laboratories. The Association saw this as a doctor conducting research on patients, which is prohibited.

Another doctor diagnosed me with reactive hypoglycemia, a condition in which blood sugar goes up and down like a yo-yo, causing dizziness, irritability and even fainting.

I saw about four doctors who claimed to specialize in CFS, who ordered more allergy and pathology tests and prescribed a variety of supplements.

A naturopath came closest to the truth, diagnosing a chronic low-grade bacterial infection using some device (I don’t remember the name).

Elimination diets, homoeopathy, Chinese medicine and herbs, acupuncture, more allergy tests (one of which showed that I was allergic to some obscure Kenyan grass I could not possibly ever have been in contact with: it just showed that my immune system had no idea what it was supposed to be attacking) – I tried them all. I won’t bore you with a list of supplements that I tried – it might be better to give you a short list of what I didn’t try. Everything helped to some extent, for a while, but I was still on a downward path.

The environmental doctor referred me to a gastroenterologist colleague. That physician’s patients had reported that their fatigue had decreased after a particular procedure I underwent what is referred to as a bowel flora transplant. Strong antibiotics are used to kill existing bacteria in the bowel, then new flora (bacteria isolated from a healthy donor’s feces) are introduced (don’t ask how!). The procedure bought me about 3-4 years of feeling somewhat less symptomatic – possibly the high-dose antibiotics strongly suppressed my immune function, to the point where I temporarily experienced less of a bacterial die-off reaction.

Nevertheless I was still pretty crook (Australian for feeling bad). When I went to see my naturopath, I had to walk about 200 meters from the train to her office and then 200 meters back to the train after the appointment. After even that minimal amount of exertion I would have to rest for at least three hours.

All I could do was try to cope. I went to work, and when there, could barely perform. As soon as I left work, I went home and slept. On the weekends, all I did was rest and sleep. I consistently took all the sick days and leave that I could. I had severe muscle pain and severe joint pain – I could hardly lift my right arm. I would drive to and from work in a complete fog: I still don’t know how I didn’t have a serious accident.

A few years later (mid 90s – I was now pushing 50) I was unfortunately assigned to a job that forced me to work in another building. This one had been built during the Energy Crisis, and was even tighter than the previous one. It was also being refurbished. It was filled with formaldehyde, printing ink, outgassing from plastics, furniture and carpets and fumes from paint. The resulting chemical load in the building made me extremely ill. I suffered from a continual headache. I couldn’t think straight.

It was then that I realized just how sensitive I was to volatile organic compounds. If I had to fill the car with fuel the scent of the petrol (gasoline) knocked me out for a day. Oh, and printing ink would just send me off the deep end! If I got a flyer in my mailbox that had been freshly printed I couldn’t go near it.

Some physical signs were now becoming visible to my colleagues. They remarked that, as soon as I walked in the building my neck and ears would turn red, and they could see me becoming more and more fatigued over the day.

I tried to get medical retirement. But it wasn’t until a conference in 1997 that I was finally taken seriously. At the conference, I had to give a presentation in front of a group of people including my boss. I had rested all weekend in preparation for the event but nevertheless, when I got on stage, my boss could see me going gray. Because my cognitive problems had become so severe, the wrong words came out of my mouth. At that point my boss said, “Go home and don’t come back!” I went on medical leave, worked a little from home and went to see more doctors. I was finally given a diagnosis of Multiple Chemical Sensitivity which was sufficient to allow me, a year later, to retire on medical grounds.

During the next two years I sat at home wearing an activated carbon respirator. I rarely went out. I was put on a few courses of tetracyclines for months at a time. I started to feel a little better. I started working from home, where I began a career in technical writing. However, trying to work was very stressful. I began to work part-time in a storeroom where I could still wear an activated carbon mask.

I was diagnosed with various inflammatory diseases. I had severe cases of irritable bowel syndrome (bloating, flatulence, diarrhea) helped somewhat by diet and supplements. I also suffered from plantar fasciitis, which caused tremendous sharp pains in my feet (advice: wear absorbent innersoles, rest feet). My back would also go out. It would knot up hard and all of a sudden, bam!, I would be unable to straighten my back (it would take 3-4 days of massages to bring it back into shape). I was also diagnosed with benign prostatitis (the urologist’s only advice on how to treat the condition was to avoid coffee and other “irritants”).

I also suffered from depression. I went through a stage where the thought of killing myself didn’t seem like such a bad option. But when I entertained such thoughts I would also think, “This isn’t me. This is my illness.”

Before getting sick, I had felt extremely competent. But after the onset of my CFS, I felt completely incompetent and hardly had the motivation to do anything. I would continually start jobs and then not finish them. The situation drove my wife crazy.

How did you find the Marshall Protocol?

Around the time I was given medical leave, I came across the Marshall Protocol while doing an Internet search. But my level of cognitive dysfunction was so high that I simply couldn’t comprehend the basics of the treatment.

After the courses of tetracyclines offered me a bit of palliative relief, I looked at the Marshall Protocol again. When I read the information for the second time, I finally had enough sense to realize that it was going to work.

At that time I was also desperate. I didn’t care if I had to endure difficult immunopathology (bacterial die-off) reactions on the MP. So I plunged full force into the MP. Benicar alone made me feel worse, probably because it activated my immune system so well that my body didn’t even need antibiotics in order to begin to killing the bacteria at the heart of my illnesses.

When I started the MP antibiotics, I was like a bull at a gate. I ramped up their levels extremely quickly because I was so eager to get well. The MP study site moderators warned me against ramping my antibiotics in this fashion and they were right. I ended up dealing with a few periods where my immunopathology became very strong and difficult to tolerate because I was trying to take too many antibiotics too quickly.

Because I was so cognitively impaired, I also had trouble following the moderators’ advice about how to reduce my level of immunopathology. Looking back, everything they said made so much sense, but at the time, I was confused. But I basically took everything that the nurse moderators said on faith and their guidance was correct. I wasn’t long before I reached a point where I started to feel better.

So what are your symptoms like these days?

I could talk for hours about how much better I feel. It’s a truly remarkable feeling to be this healthy again.

I barely think about my symptoms despite the fact that I am taking the highest doses of the MP antibiotics. The constant, unrelenting “flu”, fatigue, aches and pains and inflammatory problems are largely gone. I breathe through my nose!

My chemical sensitivities went away during my first months on the MP.

I also have my brain back. I’ve been able to take my technical writing job to a new level. Right now I have 200 different documents to write and have already completed 160 of them with ease. I can once again remember and understand relationships – how things hang together and exactly why things are placed in certain locations.

My mathematical abilities have returned as well. Just the other day, I helped one of the MP board moderators with a statistics problem.

My physical improvements are also tremendous. During the 1990s my doctor was able to gauge my metabolism by looking at my blood fatty acid content and the levels of some of my urinary metabolites. I was essentially told that my body was catabolic, that I was literally eating my own muscles. Now, I realize that the bacteria making me ill were taking all the good stuff and leaving me with nothing.

I was so weak that my strength and endurance was comparable to that of an 80-year-old. If I had to stand up, I was forced to push myself up with two hands. It was simply impossible to get up on my own.

But during my time on the MP, my muscle tone has returned. I can now see muscle definition in my arms and legs, despite the fact that I don’t do much exercise (for so many years, exercise made me feel so much worse).

These days, I can walk as far as I want to. I just went on a road trip to visit several of my children. My wife and I drove 450 km up the Australian coast, then 330 km inland, then 850 km over to Hervey Bay.

There’s a pier at Hervey Bay that’s 900 meters long. We decided to walk to the end of the pier and I didn’t even think about symptoms or fatigue. Then, just as we reached the end of the pier, it started to rain. So we power-walked rapidly all the way back. When I got back to the hotel I felt just fine. My first thought was, “All right, what do we want to do next?”

Before the MP when I went to the supermarket, it took a huge effort to drag myself from one end of the store to the other. Now, I walk with a spring in my step and am actually two inches taller because my renewed energy keeps me from slouching.

Two and one-half years ago, if I dropped a dollar coin, it was too much trouble to bend over and pick it up because my body would creak and groan under the effort. But just the other day I dropped a five-cent coin and simply bent down and picked it up. I didn’t feel any symptoms at all.

I should also add that during the 1980s, I suffered from constant earaches. If I had to fly on an airplane, when landing the pressure change in the cabin would just about kill me. Now the earaches are a thing of the past. I can fly anywhere and my ears don’t even pop!

My feet don’t hurt. My back doesn’t go out of whack. I no longer have benign prostatitis and the swelling there has gone down. I could almost feel the healing taking place in my prostate as I progressed through the MP. After taking my antibiotics, I would often feel a warm itchy sensation in the area – that type of itch that can’t be scratched. I would feel occasional pains in the area depending on where I was in my antibiotics cycle. Then, gradually these reactions faded and the problem resolved.

Before the MP I seemed to have everything in the world wrong with me. It makes sense that the bacteria that cause inflammatory disease will lodge just about anywhere they can. Now, nearly all my old health problems, both minor and major have resolved.

I still find that on certain days of my antibiotics cycle I feel a little bit of pain in the glands in my neck (those glands are still visibly swollen). Sometimes I feel flickers of joint or muscle pain but it’s nothing like it was before.

The antibiotics affect my vision as well. Depending on where I am in my antibiotics cycle, the focal length of my eye changes. I think that on some days there is more bacterial die-off and the resulting inflammation causes pressure on the eyeball, which affects its focal length. So I actually have two pairs of contacts with different strengths that I wear depending on my level of immunopathology. I’m sure that this fluctuation in my eyes will eventually stop as all the bacteria in the area are killed, and at that point my vision might actually improve, the way it has for others on the MP.

My symptoms of depression have improved tremendously. Today I feel competent, ambitious, and I complete my projects without a problem.

However during the early months on the MP, particularly when I was taking one of the phase 3 antibiotics, my depression was high as a result of immunopathology. At those points I would sometimes think, “I shouldn’t be here, why am I doing this?” But later I would realize it was the medication talking, not me.

To some extent, symptoms of depression still come and go with my immunopathology, although they are much milder than before.

What was the average time scale of your recovery?

At around five months into the MP, I started to recognize that on average, I was feeling better than before I started the treatment. Before that point, I felt worse. But because I knew that feeling worse was a sign of bacterial die-off, I welcomed the exacerbation in symptoms. In fact, I actually rejoiced about the fact that my die-off symptoms were strong, which explains why I ramped my antibiotics so quickly.

Once I started feeling better at about the five-month mark, I was able to think more sanely about the way I was dosing my antibiotics and was able to proceed with the treatment at a more reasonable pace.

Did you keep working during your time on the MP?

Yes. I wore a cap and sunglasses inside my office building so light was not a big issue. It didn’t take long before I started to feel better on the Marshall Protocol. So the thought of how much worse I had felt before the MP caused me to feel grateful about the fact that I was improving and helped me get through difficult days.

I’m still working, mainly from home, but not concerned when I have to go to the office for meetings.

Tell me about your ability to tolerate light when you started the Marshall Protocol and how much light you can tolerate today.

When I first started the MP, I became extremely sensitive to light. I started out wearing very dark 2% Noir sunglasses when I began taking Benicar and I went outside. During the first few days wearing the glasses felt like being in a solar eclipse.

But a week later I was wearing 10% Noirs inside (and 40% Noirs if the blinds and curtains were drawn, or it was dark) and I was avoiding going out during the day. I realized that if I took the glasses off, I had a strong rise in symptoms.

Today I don’t even wear the 2% Noir glasses anymore. I wear my 10% Noirs (which have a lighter lens), and only when driving. Indoor lighting or light from the computer no longer bothers me.

I can tolerate normal sun exposure as long as I wear zinc oxide sunscreen. The sun certainly didn’t bother me much on my last vacation. If I want to wash the car I just throw on a hat, long sleeves, and away I go…

The sun used to cause my eyes to become sore and swollen. This posed a problem since I wear hard contacts. But about nine months ago, this sun-induced swelling resolved. So I can now wear my contacts comfortably despite sun exposure.

On occasion I notice an increase in depression or some inflammation in my hips when I’m in the sun for a long time, but it now resolves quickly.

What was the hardest part about doing the MP?

It was very difficult to get my doctor “on my side,” so that he would continue to prescribe the necessary MP medications. When I first started the MP my doctor was skeptical of the treatment, largely because he really didn’t understand it.

At first, I had to put a great emotional investment into persuading him to prescribe the medications. I had to write him a letter explaining why I wanted to do the treatment, which also clarified that I would not hold him responsible if anything went wrong. It was very draining.

Once my doctor realized that I was really improving thanks to the MP, and thus became much more accommodating about giving me my medicines, the feelings of insecurity about whether I could continue the treatment faded and I felt better emotionally.

Nevertheless, emotional symptoms were still difficult to manage during the early stages of the MP. Before the MP I often felt very emotionally labile and suffered from frequent mood swings. I had a very hard time dealing with any sort of crisis situation. Even if the situation wasn’t life threatening, my adrenaline would go up and down and my body would feel as if it was. These emotional symptoms returned with my immunopathology, which was difficult. But like my others symptoms, they eventually faded to the point where I am now much more emotionally stable.

I also have regrets about not starting the MP earlier. These regrets are compounded by the fact that the rest of my family are also clearly affected with Th1 diseases that can also be cured by the MP. Yet at this point they seem unable to see what a difference the treatment will make in their lives. So I have to sit back and watch them get diagnosed with more and more things that are just nonsense.

What advice do you have for people starting the Marshall Protocol?

Take it easy. Don’t go at it too fast the way I did. If you ramp your antibiotics too quickly, you may reach a stage where you will become so physically or cognitively affected that you’ll give up, and you really don’t want to do that! So go easy and be patient. Make sure to keep in touch with people on the board so that they can help you manage your reactions during the first stages of treatment, because you may not be able to make sound decisions on your own.

What lies ahead?

I intend to stay on the MP for as long as I continue to feel better: I think there’s still considerable room for improvement, but I don’t really know what a completely healthy 60+ year old should feel like!

My focus will be to regain the things the disease took from me: not only health but also financial security, good family and social relationships, emotional wellbeing.

I’ve already been on a few trips overseas: I think that in the next ten years there will be many more. And I’ve still got all those unfinished jobs around the house….

Please note– clicking on the “x” shape in the bottom right corner of the video, just to the left of the word “vimeo” will give you a full-screen version of the presentation. (Nice, right?)

Want to give some or all of this presentation to researchers, doctors, or patients? Be my guest! I should say this presentation was made in a program called Keynote. The Keynote presentation is available upon request. I’ve made the PDF version of this presentation as well.

Can you describe the progression of your disease?

When I first started to suffer from symptoms of Post Treatment Lyme Disease Syndrome (PTLDS) I was living in South America. 2001 was the beginning of a gradual downhill slide. My feet started to become very sore, I became increasingly forgetful, and my balance was impaired. But it wasn’t until May 1st of that year that I was suddenly struck with incredibly severe symptoms. That day, when I went into the office, I felt terrible. I told my co-worker “Something is very wrong with me”, and he proceeded to take me to the hospital. My symptoms were terrifying . I had a crawling sensation that started in my hands and feet and crept up the back of my legs, until it finally reached my arms and the back of my head.

I saw an internist who thought I had Guillain-Barre Syndrome, an extremely debilitating disease that occurs when the nerves outside the brain become demyelinated. I was told I would have to spend three months on a respirator and that I would lose the ability to move my body at all for up to three months. Naturally I was terrified. The doctor told me that if I agreed to take large amounts of human immunoglobulin then I might be able to thwart development of the disease. Apparently this had curbed the onset of the illness for some of his patients in the past, although he had absolutely no idea why or how it worked.

So I was given $20,000 worth of IV immunoglobulin which, in the end, had absolutely no effect on my symptoms. I kept tingling and twitching. Later, to my utmost dismay, I learned that immunoglobulin is collected from the blood of thousands of people, and contains their antibodies. In hindsight, this seems to indicate that Guillain-Barre is an infection. At any rate, it made no difference in my treatment and I now realize that the immunoglobulin was probably contaminated with a great deal of L-form bacteria, bacteria that each of those thousands of people most likely harbored.

Although it had nothing to do with the immunoglobulin treatment, five days later my symptoms became slightly more subdued and I was allowed to leave the hospital. I flew back to Canada where I saw a series of doctors. The second doctor I saw told me I did not have Guillain-Barre, and was unable to explain my symptoms, yet I was still incredibly sick. I was so tired I could hardly move. I had developed fibromyalgia-like pain and joint pain. I also experienced massive body tremors. My short-term memory rapidly deteriorated and my emotions started to flare out of control. It was clear that my nervous system had become dysregulated and that my ability to process sensory input was all messed up. My gait was unsteady and I couldn’t walk straight.

My wife was very shocked at my condition and didn’t know what to make of it. The husband she once knew now seemed insane and was essentially bound to a wheelchair. But despite the physical torture that I was enduring, I had no visible symptoms. It didn’t look as if there was anything wrong with me. I entered the hardest period of my life. I discovered that I could no longer tolerate bright lights or loud noise. Consequently, all I could do was lie alone, in the dark, inside a quiet room. It felt as if my entire body was on fire. I was extremely lonely and extremely scared. One time my calves spasmed so much (it looked as if worms were crawling under my skin) that my wife was able to recognize the symptom and gasped in horror. Yet she still failed for some time to understand the severity of my symptoms.

On some occasions I tried to force myself to accompany my wife on short excursions. One day we were at a store. I was leaning on a shopping cart for support when suddenly it felt as if somebody had kicked the back of my legs out. My knees buckled. I told my wife, “I need to get out of here…fast.”

I went to see yet another doctor and was told I might have MS. His staff collected vial after vial of blood and spinal fluid until they literally ran out of tests to perform. Meanwhile, the crawling sensation, the twitching, the clonus (jerking back and forth), the pain, and my short term memory loss were worse than ever. My emotions were completely out of control. What I said no longer made any sense and I literally felt insane.

Eventually I was told that I didn’t have MS. Nevertheless, I had already started investigating MS on the Internet and had gone to an MS Society meeting. Despite the fact that I was not officially diagnosed with MS, the people at the meeting had pretty much the same symptoms as I. I was horrified by the prognosis given to people with MS. We were told that for the rest of my life, I would have possible good days, bad days, and inevitably suffer from relapse after relapse.

I attended a lecture on MS and was appalled to find that the lady sitting next to me acted as if she had lost her mind, like she had cognitively flown off the radar. I tried to tell myself that I hadn’t reached such a state, but when I left the meeting I realized that I couldn’t remember where I was. I couldn’t remember what city I was in. I couldn’t remember if I lived in the city or not. Where was my home? Did I have a car? If so, where was it?

When I finally made it home, I began to look for information on the Internet with increased fervor. I was sure I had only weeks to live. Using the computer required all the energy I could muster. I staggered over to the machine and my hands would shake violently as I tried to use the mouse. Yet it was during those periods on the computer that I learned more about the disease that is often dubbed the “great imitator” – Post Treatment Lyme Disease Syndrome (PTLDS). It’s called the “great imitator” because so many symptoms of PTLDS resemble those of other inflammatory diseases such as MS. Now that I understand the science behind the Marshall Protocol, the fact that PTLDS, MS, and many other inflammatory diseases have overlapping symptoms comes as no surprise. I understand that these diseases are all bacterial illnesses and that people with different diagnoses often share many of the same bacterial species. So I’m sure I did harbor many of the bacterial species that cause MS.

But as I read more information on PTLDS, I remembered with increasing clarity an event that had occurred nine years before, during a hike through the West Coast Trail on Vancouver Island. After the hiking trip, I had noticed an itchy rash on my stomach. I proceeded to pull a black “poppyseed” out of my belly button – what I now realize was the remnants of a tick. At the time I had dismissed the rash and moved on, yet two weeks later my knees had become very sore. It was also the beginning of symptoms of depression that would haunt me for the next nine years.

In the months that followed, the soreness in my knees got worse and my emotions became more unstable. My knee pain was so bad that I lost the ability to jog. Yet I tried to ignore the symptoms and push on with life as normally as possible. My girlfriend at the time worked for a supplement manufacturer and was selling one supplement that contained the herb sarsaparilla. I realize now that it’s an anti-Lyme agent originally used to treat syphilis (another type of spirochete) and when I took it, it might actually have killed a small number of the bacteria making me ill. That’s because after taking the supplement, I woke up one morning feeling as if I’d been hit by a truck. It could have been my first immunopathological or bacterial die-off reaction. In retrospect, I realize that feeling temporarily worse after taking the supplement might have actually been a sign of bacterial death. This is one of the invaluable lessons I have learned by understand the science behind the Marshall Protocol. Now I understand that “If you aint herxing, you ain’t healing.” In other words, experiencing immunopathology is a sign of healing.

Returning to the time nine years after the tick bite – the time when I was starting to learn more about PTLDS over the Internet – I realized that I once again had the same soreness in my knees and even the stomach rash that had started nine years earlier, after the tick bite. It assured me that the tick bite and my current symptoms were connected. The Canadian government claims that only about 20 cases of Lyme disease occur yearly in Canada and that ticks that carry the borrelia spirochete or L-form bacteria are few and far between. Yet my wife hiked the West Coast Trail almost one year after I did and also proceeded to develop PTLDS (she may also have picked up some of the L-form bacteria that I harbored after I got sick). Then, my son, his friend, another friend, his niece, and about half the people I know who hiked that Trail have since developed PTLDS. So I’d say the Canadian government’s claims about the number of insects that carry L-form bacteria here in Canada is incredibly off.

Eventually I diagnosed myself with PTLDS disease, and in the process saved my life as the diagnosis was what eventually led me to find the MP.

I went to see a neurologist who refused to accept that I might have PTLDS because I didn’t test positive for the bacterium Borrelia. I tried to tell him that the tests were no good because I had all the symptoms of the disease but he wouldn’t listen. That experience was the beginning of the end of my relationship with the mainstream medical community. My next doctor again refused to treat me for PTLDS because of my negative test results but I was too weak and confused to fight back.

I soon learned that the average person with PTLDS goes to 21 doctors before getting treated. If that would have happened to me, I’d almost certainly have died. I was lucky enough that the 9th doctor I saw agreed to put me on high-dose antibiotics. I took a 12 hour road trip to see him in the USA. When I reached the hotel, my body was vibrating so badly from the exertion of the trip that my wife, who still wasn’t convinced that I was truly ill, became alarmed again.

I had had to stop working and was on one year disability. We decided to move to the West where the weather was warmer and the taxes not as high. During that time, I started to develop symptoms of CFS as well. I slept for over 20 hours a day. It took us six months to move because I would literally pack one box of books, carry it up the stairs and into the garage, then need to go back to sleep for 24 hours.

Under the care of one of the few treating doctors in Canada, I did six more years of high-dose antibiotics. I did experience immunopathology (the herxheimer reaction) in response to taking many of them, but my symptoms never came close to resolving. Sometimes I would seem to reach a plateau, but then I would inevitably relapse. It seemed like the antibiotics were helping me somewhat, but taking them at high doses was like taking three steps forward and two steps backwards. When I had IV rocephin for three months, I started to feel like I was making no progress at all – it was three steps forward, three steps backwards. I think this pattern might have gone on forever if I hadn’t found the Marshall Protocol. I learned from the MP site that beta-lactams will drive spirochetes into the stealthy L-form. This accounted for much of my backsliding.

How did you find the Marshall Protocol?

I started to get involved in the Lyme community and became friends with some other local Lymies. I met many of them through the Canadian Lyme Disease Foundation (canlyme) which is a very helpful group. Sometimes we would go out to dinner and talk. During one dinner, I began to talk to a man who was on the Marshall Protocol. He was quite happy with his recovery thus far. After that point, every time we would see each other he would urge me to try the MP.

For a while I kept the MP in the back of my mind, but after realizing that my doctor was going to retire, I knew I had to plan for the future. I looked into the MP in greater detail and became very interested in what I learned. I decided it was definitely worth a try and found another doctor in my area who was already working with MP patients and was more than willing to put me – and my wife – on the treatment.

I should also mention that a year before starting the MP I suffered from angina that led to a pre-heart attack. Six months later I had open-heart surgery and triple bypass surgery. I was only 52. Now that Dr. Marshall’s research has made it clear that cardiovascular disease is also an inflammatory disease that results from infection with L-form and biofilm bacteria, I’m not surprised that pathogens had also spread and infected my cardiovascular system. My blood pressure on the MP has dropped by over 30 points! I take no other medications.

A year before starting the MP, I inadvertently went on it in a modified form. I was given AltACE for my blood pressure. AltACE suppresses Angiotensin Converting Enzyme, which is the precursor to angiotensin. Since the MP’s Benicar is an angitotensin receptor blocker, they are both involved in the angiotensin creation process. By happy coincidence I was also on a high dosage of one of the antibiotics used in the MP. My herx was spectacular and had me almost bedridden for four days. When I finally learned about the action of Benicar and recalled this incident, I needed little convincing that the MP was the way to go. I was searching for a new GP at this time and, when I mentioned that I had become very “sick” on AltACE and would no longer take it, he dismissed me immediately saying he would not treat a patient who would not take his meds.

Interestingly, two of the high-dose antibiotics that I had responded ro most positively in the previous six years were both held in high regard by the MP. This assured me that I would also respond well to the MP. I started the treatment at a pretty low point – I was still dealing with heart symptoms, PTLDS symptoms, and was very tired. My joint and fibro symptoms were also flaring quite a bit.

After starting Benicar and the MP antibiotics, I didn’t notice much of an immunopathological reaction for the first two months. But I stuck with the treatment, and during month three, it seemed like the doors opened and a truck came though to flatten me. My immunopathology was strong and constant. As symptoms returned as a result of bacterial death, I once again became mentally unstable and quite anxiety-ridden. Because my immunopathology elevated my symptoms of anxiety, I had regular crises of faith about the MP – times when I would get nervous and doubt that the treatment was working. I would wonder, “Is this immunopathology, or am I just getting sicker?” In the end, I always realized I was on the right track, but the mental immunopathology did make accepting that reality difficult at times.

The heavy immunopathology continued for four months, but then one day I woke to find that about 80% of my symptoms had dissipated. The next day about 90% of my symptoms were gone. It was the most beautiful, wonderful experience of all time. From that point on, I have felt incredibly healthy and have not relapsed or gone backwards in any major way. My level of pain is minimal. I still get some minor immunopathology in my joints, teeth, and some fibro tender spots, but I would say I have 90+% of my life back. It’s just unbelievable.

In August, during the time when I first I started to feel so much better, I read my first book just for pleasure in years. It was the Ascent of Man. I was able to remember everything in the book, toy with the topics in my mind, even dream about the book and remember minor details. When I finished the book, I cried. I never ever thought that my mind would feel and function this way again. All I can say is that my mind is BACK! My cognitive improvement is absolutely fantastic. It has almost completely allowed me to return to a different quality of life. My memory and cognitive function are almost back to 100%. This is such a change from the times when I would “wake up” in the middle of a sentence, wondering who was talking!

These days I only sleep about 8 hours a day with an occasional nap in the afternoon – the severe exhaustion is completely gone. I still have some fasciculations on my calves but it is quite rare. I am no longer sensitive to light or sound – I can turn up the radio on my truck and enjoy the music. In fact, my hearing itself has improved and my tinnitus is about three-quarters resolved.

My wife, who developed PTLDS a year after me, is also on the MP and experiencing many of the same improvements I am. We are also very happy with her progress.

In terms of your recovery, how do you feel about the high dose antibiotics you took for six years versus the Marshall Protocol?

I feel that the high-dose antibiotics did cause an immunopathological reaction at many points, yet I doubt they were consistently targeting any of my L-form bacteria or other stealth bacteria that are able to change form. I would never have fully recovered if I hadn’t used the MP to target and kill these forms of bacteria which were definitely at the heart of my illness and running rampant while I was taking the high-dose antibiotics. Now that I understand the MP, the high-dose antibiotic approach also seems extremely unscientific. For example, the use of beta-lactam antibiotics seems quite obviously wrong, yet IV ceftriaxone (a beta-lactam antibiotic) is considered to be the Holy Grail of high-doise treatment.

The high-dose regimen seems to basically involve throwing antibiotics at a person and hoping they might have a positive effect – just hit or miss. In contrast, the science that forms the backbone of the MP is spot-on in my experience. Marshall’s molecular modeling research confirms exactly how each of the pulsed, low-dose antibiotics used by the Treatment binds and blocks certain bacterial ribosomes. There is no question in my mind that the antibiotics are working. I also believe that the the MP antibiotic regimen is able to target L-form and biofilm bacteria in a way that high-dose antibiotics cannot.

Since I did experience immunopathology on the high-dose antibiotics, I think they did help me lower my bacterial load, but it was only by switching to the MP that I was able to consistently and thoroughly clean out the tremendous amount of L-form bacteria I harbored. All in all, my progress was very unsteady on the high-dose antibiotics and if I had to do everything again, I would definitely start the MP from the get-go.

What advice do you have for patients starting the MP?

Be patient during your immunopathology (herxes). Sometimes you may doubt the fact that your symptoms are the result of immunopathology, but as someone who battled those same doubts and has now largely recovered, I assure you that once you become symptomatic on the MP, your symptoms are almost certainly the result of your body killing bacteria. Have faith and ride through your herxes, but stay in touch with your doctor. It’s sad, because some people drop out at the start of the MP because they can’t get their minds around the idea that feeling bad after starting the treatment is not a sign that their disease is progressing but a sign that they are killing bacteria as expected. Sometimes people feel very bad after starting the MP but, since the rise in symptoms is due to immunopathology, it’s actually a sign that the treatment is working TOO well (too many bacteria are being killed) rather than not working.

What lies ahead?

Now that I’m getting my life back, I feel like a kid in a candy store. I’ve just become a Grandpa and I feel confident that I will live to see my grandchildren graduate from high school and college – something I would never have dreamed possible before the MP. The lost opportunities in my career and the high-dose antibiotic therapy that I did for six years has cost me well over $100,000, so I’m ramping up my career again in order to become more financially stable. But I’m basically a life hog – I have the freedom to enjoy the rest of my life. I cry at sunsets, I’m gentler with people, and I’m also an activist. I want to do everything in my power to promote the Marshall Protocol and to help doctors understand the treatment and recommend it to their patients.

My son calls me the “Lyme Crusader.” I’ll literally stand in line at the grocery store and ask people if they know of anyone with inflammatory disease. Then I’ll hand them a flyer with information about the MP. The treatment has worked so well for me that I can’t just stand around and watch other people with chronic disease suffer when I know the MP can give them their lives back.

I am eternally grateful for Dr. Marshall and the others who have made such a difference in defeating these diseases.

Interested in doing the Marshall Protocol yourself? Visit curemyth1.org and your questions will be answered free of charge by experienced patient advocates that volunteer for the non-profit organization that runs the treatment. (Th1 is a name currently given to diseases caused by L-form bacteria, hence the name cure my Th1)

Can you describe the progression of Brendon’s illness? Was he born sick or did it take time for his illness to develop?

Brendon exhibited the subtle signs of autism at a very young age. I didn’t realize it at the time, but looking back, even as an infant he was socially indifferent–- he did express emotion, but only if we went out of our way to over-emphasize cues. A photographer waving around stuffed animals and talking loudly and actively in order to elicit a smile would get him wildly laughing. Otherwise, he really didn’t ever giggle or grin. He did not actively explore faces and was uninterested in taking his turn sitting on my lap at reading time. Whereas the other children in my daycare clambered to hear favorite books over and over and especially enjoyed the “audience participation” pieces they knew were coming up, he did not have the patience to sit through a book if he had already heard it.

As a toddler, he started to develop allergies. He couldn’t and still can’t tolerate gum thickeners. I remember taking him to Dairy Queen, which thickens all their ice cream products with xanthan or guar gum. Afterwards he felt terrible and had his first clear-cut display of diet-triggered disordered behavior. Soon after, we found that he was also allergic to beet sugar, any food coloring, aspartame, corn, wheat and dairy. A great deal of trouble was avoided when we were successful at removing them from his diet. I used to reassure his teachers by joking that there were no dangerous side effects to his allergy, but should they make a mistake… don’t call me!

By this time, he had been tentatively diagnosed with ADHD, and the removal of food allergens went a long way towards removing the hyperactivity piece. Dust allergies kept us busy, but constant cleaning offered a bonus of decreased aggression, which is indeed often linked to dust allergy in children. The allergies were also the first indication that there was something wrong with his immune system. After a while, they became less of a problem and he was able to eat a more extensive diet again, although he still can’t fully tolerate dairy and wheat or gums.

But we didn’t reap the benefits of having overcome this serious health problem for long. Like playing Whack-a-mole, other problems constantly cropped up, with escalating seriousness and intensity, to consume a great deal of parental sleep and stomach acid. We spent a year on vision therapy. Patches of severely dry skin on his wrists turned out to be a symptom of hypothyroidism. Extreme morning fatigue was found to be related to adrenal insufficiency. He had to be treated frequently for Candida overgrowth.

In the middle of all this, we actually had a “normal”, semi-critical medical problem. A sudden bout of urine incontinence led us, thankfully, to surgical repair of a dangerous stage IV ureteral reflux, in which urine backs up into the kidneys, through damaged valves. The surgery removed the risk of life-threatening acute blood infection, but failed to save the kidney, which had been damaged by the years of backflow.

The problem of hyperactivity was gradually replaced with insidious fatigue. And his weight continued to steadily climb, despite all of our efforts. It went up, and up, and up. We did all we could to keep track of what he ate and make sure he ate a very healthy diet, but even so, his weight seemed to increase irrespective of our efforts.

Meanwhile, his behavior problems were escalating. He suffered from frustration intolerance and had episodes of explosive rage. He was diagnosed with depression and severe anxiety. Yet as his mother I was frequently told that he was fine; that I was just anxious and should try to calm down. But my husband and I could tell just how depressed, anxious and stressed he was. When he’d come home from school, we could tell he was using everything in his power just to hold himself together. He would come home in tears, desperately exhausted and just crash.

Another lingering and difficult problem finally brought us to the right practitioners and a definitive diagnosis of autism. Brendon suffered from severe constipation and bouts of intestinal pain that could not be relieved, with gradually escalating encopresis, or leakage from the bowel. Obviously this problem made going to school a terrible experience.

Our pediatrician didn’t know how to help. At one point he suggested Miralax – a powerful laxative that would force his intestines to eliminate their contents at specific times. But the drug created dependency, as it destroys muscle tone and is only properly used as a final recourse. I realized that if he started it, he would probably be taking it for his whole life. I turned it down.

We saw an integrative health doctor who immediately suspected that Brendon had dyspiosis – a condition in which the intestines do not have the proper composition of bacteria. And he said a curious thing: people on the autistic spectrum often suffer from encopresis. Autistic spectrum? I had never heard such a term.

The doctor ran a nutrition panel on Brendon and found elevation of a marker for brain inflammation and toxins produced by bacteria in the bowel. In addition, his triglycerides were extremely high. High triglycerides are a clear marker of inflammation, which, in turn, can be caused by bacterial infection. We used an herbal remedy to reduce bacteria in Brendon’s intestines, which thankfully eliminated the embarrassing and socially isolating encopresis. The markers also returned to normal. Today we realize that he was also infected with a great number of the L-form bacteria that cause chronic inflammatory disease.

A trip to a local clinic specializing in children’s behavioral health confirmed the diagnosis of autism. At the clinic he was diagnosed with Aspergers syndrome and PPD – Pervasive Development Disorder. He definitely was several years behind in development – he was eleven years old but had the maturity of an eight year old and the social skills of a five year old.

At this point in time, Brendon still had a tremendous heap of problems but it was becoming clear that they were all related to a central issue and that we might just have some power of management over them. Later, with the Marshall Protocol, we would set out with the hope to actually clear up this central problem, but for now we attempted to create some breathing room for Brendon so that he could grow up happy and independent. Vitamin B6 and glycine, identified as deficient in the nutrition panel, helped with his explosive episodes. Lots of autistic kids find relief from heavy metal chelation, but that therapy did very little for Brendon. He did, however, respond dramatically to weekly glutathione IVs. The purpose of this therapy is to reduce levels of toxins and metabolic waste built up in the body. Even from the first couple of IVs it was like turning on the light for Brendon. In hindsight and in comparison to today’s IP symptoms, I would say that the glutathione substantially reduced the brain fog piece.

There were some setbacks initially as we attempted to respond to the autism and ADHD diagnoses from the Alexander Center. Strattera, used to treat ADD, seemed at first to be very beneficial. But then four months later he came to me saying that something felt wrong when he took his pills. Soon after, he became completely emotionally destabilized. He was agitated, angry, weepy, and had explosive mood swings. His depression was terrible. He couldn’t stand to be around other people. It took us a long time to bring his symptoms back to a level where they were somewhat under control.

In the meantime, I continued to learn more about autism. Patients with autism suffer from a deficit of the neurological pathways that link the frontal cortex and the limbic system. So Brendon was able to experience normal emotions and was able to develop intellectually, but he could simply not connect the two systems. Where there should have been a superhighway to connect his two systems, it seemed as if there was nothing there.

For example, Brendon could go to school and learn about grammar in English class. But if his teacher asked him to write an essay on a moment when he felt proud, it would seem like an impossibly difficult task because autistic children fail to lay down episodic memory. He had surely felt proud at times, but his brain had failed to connect the feeling to an actual event. For example, Brendon could remember spending time with others but had no memory of whether, when they were together, he had a good time or not.

I read work by an autism specialist named Dr. Gutstein who believes that the brain is more flexible than we give it credit for and that it is possible to re-teach children with autism some of the cues they missed in childhood. He believes that the neural pathways can be strengthened and reinforced.

So we started a therapy based on Dr. Gutstein’s Relationship Development Intervention. The therapy is based on research of typical babies, identifying over 2,000 developmental steps that allow them to progress to normal adulthood. The first step is just playing a game in order to get an autistic child to enjoy looking at his mother’s face. Gutstein believes that by over-exaggerating these cues to autistic children, even later in life, they can not only pick up some of the cues they missed, but find the joy in human relationships. We tried this with Brendon and saw further gains in his behavior.

So what led you to the Marshall Protocol?

Although Brendon was making some gains based on the interventions we had in place, we knew we had to be open for other solutions. If anything, his CFS or his obesity was going to take him down soon anyway.

We actually learned about the Marshall Protocol in our search to resolve a crisis for another member of the family. Brendon’s older sister Lauren was dealing with an extremely severe case of CFS. She had crashed big after her junior year of high school and had been completely bedridden ever since. My first exposure to the Marshall Protocol came in reading an interview with Dr. Marshall on the website ImmuneSupport.com. The science made of lot of sense; my daughter had hit a low point anyway and after a year of I finally thought, “What do we have to lose, let’s give it a try!”

I was a little bit terrified, but I was used to being different – I was used to seeking out different solutions for health, looking for doctors with alternative viewpoints or novel treatment ideas.

I was worried that our doctor, who had now been working with us for several years, would not be willing to put Lauren on the MP. But when I asked him about the treatment, he told me he already had 12 other MP patients. I was overjoyed. In fact, he told me that he thought the MP would be good for our entire family, as my husband suffers from fibromyalgia and psoriasis and I have chest pain and fatigue that was finally diagnosed as CFS.

All four of us got our vitamin D metabolites tested and, as expected, all of us had levels of the active form of vitamin D (1,25-D) that were above normal range. High 1,25-D is a sign of inflammation and the presence of L-form bacteria, so this was an indication that the treatment should work for all of us.

Lauren was the most acutely ill among us so she started the treatment first and experienced immunopathology right away. Soon after my husband started the MP. Brendon began the MP a few months later, and I was the last to start. I think it was very important that we phased each person in gradually over a one year time period. With each new family member that started the MP, we became increasingly skilled at starting and understanding the treatment. In my opinion, the first bit of the treatment is the hardest – each person must learn how sensitive they are to light, how strong their bacterial die-off reaction will be, and subsequently how much they will have to adjust their lifestyle in order to get well.

So you are able to manage as a family when all four of you are on the MP at the same time?

Well, the house isn’t always perfectly clean because we’re all dealing with immunopathology, but we’re all on our way to getting our health back together. We figured, “As long as we’re covering the windows and blocking light in the house, we might as well all do this at the same time.”

What happened when Brendon started the MP?

Brendon had symptoms of immunopathology even before we started Benicar, when we removed Vitamin D from his diet in anticipation of starting the MP. He was nauseated, tired and out sick a lot. We actually had to feed him eggs deliberately, just to get through the end of the school year! Once Benicar was begun, those symptoms smoothed out and he began to follow the diet in earnest.

Although he did not experience photosensitivity at first, by the end of the summer on phase 1, with minocycline only, Brendon was experiencing intermittent distressing symptoms. He felt a whole-body flush, with increased heart rate after taking his mino. One night he stood up too fast and woke up several seconds later with his face in the carpet and a sore nose.

He was moved to a modified phase 1 just before the start of school and began to thrive. He became more social and he was less stressed. He really mellowed out. He had been too fatigued and overwhelmed to attend afterschool activities for the past two years, including Boy Scouts, but late in the summer he declared a goal to finish his Eagle Scout rank. This involved working out in the community to find and carry out a project, with interactions and activity with others which he handled fine. He demonstrated self-motivation and confidence in his Eagle work while maintaining B+ level work at school. It seemed as if his brain had a lot more energy to engage with people; as if it wasn’t so oppressed. This was his first “plateau.”

But all good things come to an end and so did this. The first few weeks of school he didn’t wear his hat and glasses. He didn’t need to. But then the expected symptom of photosensitivity finally kicked in. At first he felt bad, and was still trying to make it to school. Unfortunately, our local school has large windows. Each teacher turned off the bank of lights over his part of the room. He wore sunscreen and dark glasses, which made it hard to see to work all the time. Brendon began to feel sick even with glasses and long sleeve sun-blocking shirts. He told us that he could feel the lights and noise at school pressing down on him. At home he would shut the lights off completely. He managed a few more weeks at school, then fell apart.

We decided that he should no longer attend school. It was a good decision, because over the next four months, as his body started to kill the bacteria, he felt quite ill and he was very light sensitive. He could barely think. We dialed back the levels of antibiotics substantially and increased his Benicar to every 4 hours in order to get back to a tolerable position. Brendon slept well over 12 hours every day during this period.

Then, after this period of difficult immunopathology, he hit a second plateau. It started with some interesting symptoms – his heart started racing and his pulse went up. This eventually stabilized but he remained energetic! He couldn’t settle down. He was alert and awake in the morning, the way a healthy adolescent should be. This improvement has persisted and we feel that his body has finally been able to reset his natural circadian rhythm. He used to be extremely sluggish in the morning – probably due to the fact that his cortisol was dysregulated and didn’t peak as it should in the early hours of the day.

His ability to engage with other people has improved once again as it did when he was at the first plateau. Whereas before he used to move directly from his bed to his computer without talking to the rest of us, now he’ll stop to talk to the rest of us, actually engaging and initiating conversation. The other day, he even went over to his Dad and gave him a big hug – initiating the contact himself.

This second plateau lasted two weeks or so, and I noticed some other improvements during this time. Brendon asked to drive on his permit a few times. He explained that he no longer felt impulsive and out of control. He told me that these feelings were the reason he had been refusing to practice driving over the past year. Just the fact that he could express such self-examination is an improvement! He drove well, and with calm confidence.

Brendon is also able to handle multiple demands or instructions better. Early in life he would climb under a desk or, as he grew older, put his hands over his ears and say “Oh, go away! You’re confusing me!” But during these weeks I could remind him to take his pills AND to bring down his lunch dishes in the same breath.

I was overjoyed when he came up to me and asked if he could go with me to attend a political caucus. He said, “Mom, I want to go with you!” For any 18 year old to say that, let alone a child who used to avoid new situations, and especially new and social situations, I was really amazed at his initiative. Once we got to the caucus he cast his vote like everyone else. I was proud.

Brendon is a member of some groups that get together to play computer and card games, etc. He seldom, if ever, initiated conversation unrelated to the activity at hand. But now he is more engaged and he approaches other kids to start conversations, showing interest in people and not just the activity they are doing together. He wants to talk. I cannot tell you what a HUGE difference this is from the way he was before starting the MP. He even has a girlfriend!

We know that he has to move forward and use many other combinations of antibiotics before he fully recovers. We are fully aware that these antibiotics will probably cause immunopathology that will temporarily bring back many of his symptoms again. But we are already extremely impressed by the gains he has made so far, at just a little over six months into the MP. We are also optimistic about his ability to increase his antibiotics. At first he had trouble tolerating a second antibiotic, but after some tough immunopathology, it was as if he had made it over a huge mountain. Since that time he has been able to increase his antibiotics at a regular rate and still reap the improvements mentioned above.

What advice would you give to parents who plan to put children with behavioral disorders on the MP?

I would pass on advice that I received from a counselor at Brendon’s school. She told me that it’s perfectly okay to put school on hold in order to address health issues. No matter what other people say, parents need to stand firm in allowing their child to have their physical health and emotional needs met as a priority before addressing educational needs. Furthermore, as they start to recover, it’s essential that we focus on allowing them to have a social life before forcing them to deal with the stress of school. Essentially social life comes first and school second. If a child is in the process of recovering from an illness, it’s not fair to say, “Oh, well if you found the energy to go out with friends then you should be able to make it school.” They need to form social ties and make friends. They can always catch up math and reading later in life.

Could I speak to Brendon directly?

Sure. I’ll put him on the phone.

Hi Brendon, how are you feeling these days?

Brendon: I feel a lot more stable, a lot more social. I can’t really recognize my autistic tendencies but I’m told they’re better. Benicar has been a big help.

I also had a migraine so today my back hurts. But it’s an illness where the location of my pain changes on a regular basis. So every day it’s like rolling the fortune wheel of torture.

What’s it like to be part of a family who are all on the MP?

Well, when you are grumpy or not feeling well, nobody asks, “Hey! What’s eating you?”

Do you feel you are going to completely recover thanks to the MP?

Yes, I’m pretty positive and I keep up hope. Sometimes when the immunopathology is strong, I lose sight of where I’m headed and I have to remind myself that that this will work, that ironically pain is a good thing because it means bacteria are dying.

Back on the phone with Doreen…

Geez, Brendon seems more social and rational than half of the healthy guys I know!

I know, we are so happy, he’s really made huge progress. It’s great!

How are the rest of you doing?

Our whole family has just hit the one year MP mark, since Lauren officially started the treatment in February, 2007, and we all phased in after her. Dad continues to work, including extensive travel. It’s a struggle, but he is progressing in spite of the increased symptoms. Everyone in the family had to move to a modified phase 2 for cardiac and/or breathing symptoms, but we are now beginning to phase each of us into phase 2, starting with mom, next week!

Lauren has shown the most significant advances in health…in one year she has gone from 1 hour/day out of bed, with no energy for school or people, to 6-7 hours of sustained activity, including making her own meals, light housework, and 9 credit hours of online classes through the local college. She will graduate from high school this spring, just shy of her 21st birthday, and we are planning a trip to London to celebrate!

Interested in doing the Marshall Protocol yourself? Visit curemyth1.org and your questions will be answered free of charge by experienced patient advocates that volunteer for the non-profit organization that runs the treatment. (Th1 is a name currently given to diseases caused by L-form bacteria, hence the name cure my Th1)

Jane and her cat Muffy

When did you start to get sick?

During my teenage years but it took another twenty years or so before I was to become chronically ill and debilitated.

Describe the progression of your disease

While I was at high school I had odd bouts of ill health including chronic tonsillitis and sinusitis. In 1979, while at university, I suffered an episode of sudden fatigue and paralysis in both legs which disabled me for about three weeks. I was not seen by a specialist and it was concluded that I was suffering from “hysteria.”

I was generally healthy until the early 90s when for no apparent reason I began to suffer periods of intermittent fatigue, difficulty in articulating myself, and a collection of seemingly unconnected and disparate symptoms like mild asthma, abdominal pain, weight loss, amenorrhea, malaise, and dizziness. I had an absorbing and challenging professional job, but found it increasingly difficult to perform my work. During my first pregnancy most of my symptoms surprisingly resolved and I thought I had recovered. After a severe chest infection in 1993 the intermittent fatigue became unrelenting. I resigned from my job and did part-time pro-bono work while awaiting the birth of my second child. To my dismay, I had to give even that work up when I found myself completely out of breath just walking to the station.

My symptoms improved somewhat again during my second pregnancy but I began to feel very ill indeed post partum. I developed a host of new symptoms – severe photosensitivity, compression-like headaches, tinnitus, changes in proprioreception, blackouts, hair loss, mild fever, night sweats, anxiety, edema, abdominal pain and discomfort, and, swollen lymph nodes in the neck. In 1997, I decided to consult a general hospital and an ultrasound scan revealed enlarged abdominal lymph nodes. Sarcoidosis was diagnosed on the basis of a cervical lymph node biopsy and confirmed via chest X-ray, BAL (Bronchoalveolar lavage), lung biopsies and a thoracic CT scan. Because my Angiotensin Converting Enzyme assay (commonly used as a marker of Sarcoid inflammation) was only slightly above “normal” and I did not have overt organ damage, the pulmonologist whose care I was under decided to take a “wait and see” approach.

Determined to try and preserve as much function as possible, I walked everywhere but over the next couple of years became increasingly short of breath, the fatigue grew even more profound, and swollen lymph nodes and inflamed joints kept me in chronic low grade pain. Sitting crippled by fatigue in an armchair late in the afternoon while my infant children ran riot around me, I would often wonder why I was not out sailing the world single-handed or climbing mountains like the anecdotal super-patients of the sarcoidosis specialist’s home pages.

During 1999 my headache became more prominent; I developed problems with my sense of balance and position and experienced loss of motor function and peripheral sensation in my arms and legs. I first noticed this in my hands which became very weak and clumsy. I dropped and broke many things. Eventually my fingers became too weak to even operate an ATM key pad. I lost my opposable thumbs so could not do simple things like get change out of my purse.

My legs became leaden and clumsy and I began to trip over my feet. Myasthenia and spasticity obliged me to use elbow crutches or a cane to walk most of the time. To explain how this feels to someone who has not experienced it, imagine having both legs in plaster casts to the thighs with one’s knees cast at 140 degrees. Life and my legs were a drag.

Top: The effects of ptosis and facial palsy – Jane at her worst.
Bottom: What Jane looked like without the palsy. She gets some palsy symptoms when very tired. Rings under her eyes come back when she takes one of the phase III antibiotics, although the rings are getting lighter as time goes by.

Later in 1999 I was admitted to hospital with severe muscular weakness and spasticity in all four limbs barely able to move from the neck down. MR imaging failed to reveal any gross pathology but a diagnosis of sarcoid inflammation of the spinal cord was made via clinical examination. I spent a total of five weeks in hospital, but worse still was being separated from my children for nearly three months as they had to be sent back to New Zealand. I declined methylprednisolone pulse therapy. After a poor response to 10mg/day, I agreed to 50mg/day of the oral corticosteroid prednisolone. After discharge I was kept on varying dosages of prednisolone for 3 years. Prognosis for Sarcoidosis of spinal cord at the time was that 70% patients “deteriorated”. I made arrangements with my lawyers in anticipation that I too would deteriorate, lose cognitive function, and be unlikely to live to see my children go to high school.

Short term memory problems and language difficulties, particularly with Japanese – which is a language I acquired as an adult – made life unbearable. I struggled to make myself understood at the most elementary level and would be misunderstood or treated like a child because I was unable to articulate my thoughts or feelings spontaneously. This was so humiliating that I began to consciously avoid interacting with people. I was completely overwhelmed trying to look after two young children and constantly anxious and very short tempered. Varying doses of the oral steroids left me disconnected and confused. I would do things like turn up at the supermarket counter with insufficient money in my purse, make terrible mistakes in ordering things and was forever losing important documents. Opportune infections caused a continuum of relapses that I never fully recovered from. I lived one day at a time not knowing whether when I got out of bed in the morning I would be able to walk or use my arms.

It was impossible to commit to anything more than a few hours ahead. Central Tokyo, with its aggressive traffic and poor infrastructure, was a nightmare for a disabled person. I spent most of the day asleep but no matter how much I slept it never relieved the fatigue. As my deterioration was slow and subtle those around me didn’t really notice it. It was only when I went back to New Zealand and my mother gasped when she met me at the airport that I realized how much I had changed.

Spasticity in Jane’s hand. Jane’s comment: “At a glance my hand looks normal, but if you try to actually mimick the position and angles of my fingers you will find yourself with a very distorted hand, Now that my muscles are only slightly hyper-reflexive I am no longer able to recreate the observed distortion. My feet were very spastic too at times, but I don’t have a photograph.”

For three years I half lived through a nightmare roller coaster of exacerbations and short lived partial remissions. Every step I made was a conscious effort and it seemed that all my concentration and energy went into fighting intransigent muscles. The side effects of prednisolone were horrible but every attempt to wean from it failed. I was hirsute, bloated, disconnected, and somewhere between ornery and psychotic most of the time. Ever more crippled by fatigue and cognitive dysfunction I withdrew completely and seldom left the house. The toll on my family was immense. It was as if I became the insect of Kafka’s metamorphosis.

What are your symptoms like now?

I seldom think about them.

My spinal cord inflammation has resolved to the extent that I can take tennis coaching twice a week. I have residual spasticity but it is barely discernable except to the trained eye. This is good evidence I believe, of the ability of the CNS to heal. Despite being less supple I feel as if I can run and hit the ball way better and stronger than I did fifteen years ago. I concede though that this may be related in part to having replaced my wooden racquet with a state-of-the art carbon fibre one! The aerobic exercise seems to improve my energy levels and rather than causing me to become fatigued upon exertion; I feel better for it – something that would have been unimaginable even a couple of years ago. Recently I was also quite astonished when someone remarked on the muscle tone in my arms.

Last February I took my open water scuba divers license again after a gap of 20 years and this past New Year’s Day had the time of my life sailing a Laser.

I have rejoined the world cognitively and socially. I am able to read and write again. Once a month I attend a group to read Shakespeare which has been a lot of fun. Last year I surprised a professional association of which I had been an inaugural member in the early 1990s by rejoining after 12 years. Although I did post graduate legal studies in Japanese, disuse of the language during my illness completely eroded my confidence in using it. Recently, I gained the courage to go back to language school for a stringent refresher course. This has enabled me to begin writing in Japanese and feel comfortable about interacting with people again.

I need to be a little careful about conserving my energy as I still get a little tired after taking my medication. Sometimes a recrudescence of symptoms in response to treatment will make me feel unwell for a day or so but these are nothing like the massive IP episodes of the early days. I am hopeful that they will soon resolve and I shall be able to take on professional commitments again.

Jane has now resumed her tennis lessons.

What percent recovered would you say you are?

That is a difficult question. Like everybody else my age, I would like to be a 20 year old again. As there are few precedents for a full recovery from chronic inflammatory disease, I am really having to define my own clinical endpoints. My symptoms fluctuate between 75% and 95% of normal (as compared to between 25% and 75% for the preceding 9 years). My neurological deficits are minimal and it is over a year since I have needed to use a walking aid for any reason. That is a huge milestone for me. I can run to tennis in the mornings, do a solid hour and half coaching then walk back. My bloodwork is very good now barring a couple of anomalies that indicate residual but resolving infection. ACE is down to 15.5 U/l from a peak of 35.6 U/l. Chest x-ray is normal. Lung function tests are completely normal (% predicted: VC140%; FVC141%; FEV1.0 124%;DLCO 108%) with room for further improvement. ECG which showed an ST depression prior to ARB therapy is now normal other than a slight shortening of the PR interval; I no longer suffer from heat failure symptoms (orthopnea, syncope, lightheadedness, exercise intolerance) or arrhythmia. Myasthenia as evidenced by a muscle waning decrement of 30% under Repetitive Nerve Stimulation has resolved. Lateral L2-L4 BMD (bone mineral density) has gone up from a T score of -2.47 (09/00) to -1.09 (04/07) and Z score from -2.11(09/00) to -0.23 (04/07) which I think is pretty good given that the 2007 tests were done before I began high impact sports again. For the first time in my life, I no longer have any nasal congestion and an irritating nasal polyp I had for 15 years has disappeared. Headaches are a thing of the past. I still get the odd bout of fatigue but it is seldom for long. I am generally able to articulate myself in both English and Japanese, I enjoy reading and my short term memory has improved significantly. Most fascinatingly and delightfully I am gradually regaining the memories of people and events from the ten or so years prior to CNS involvement that appeared to have been lost.

In time, I hope to be able to proclaim of sarcoidosis, as did fellow New Zealander, the late Sir Edmund Hillary after conquering Mt. Everest… that I have “knocked the bastard off!”

ACE (Angiotensin Converting Enzyme) is a marker that reflects the severity of inflammatory diseases such as sarcoidosis. In Jane’s case, you can see her ACE was high when starting the treatment and also flared during bacterial killing, but in the end has fallen and continues to fall.

What was your immunopathology like? Was it very strong or easy to control? How did you manage it?

My immunopathology (bacterial die-off reaction) was severe at times and hard to manage psychologically. It typically involved sudden severe weakness and loss of motor function, sometimes in a single limb (I once had to finish a bowl of noodles using chopsticks in my left hand!), in opposing limbs and occasionally in all four limbs rendering me bed-bound until it subsided.

This was particularly so while the MP antibiotic regimen was being developed. There were no set dosages then and the necessity for maintaining sub-inhibitory concentrations on a pulsed schedule was not yet fully understood. I moreover did not have the benefit of Olmesartan in the early stages (it was not yet available in Japan) so had a very difficult time managing the immunopathology (IP). However, after I began suffering from symptoms indicating cardiac inflammation, I was prescribed an ARB called Valsartan. To my amazement, around five days after starting it, the symptoms all but resolved. Not quite believing that Valsartan could have had such an effect, I decided to take a self-appointed “holiday” from the drug a couple of weeks later. Ten hours after missing my dose, the symptoms returned in full force. I resumed the Valsartan and to my relief the symptoms began to resolve some hours later. This convinced me of the phenomenal power of ARBs to alleviate inflammation and without any side effects. I never looked back. Soon after, I was finally able to switch from Valsartan to Benicar. I noticed even more improvement once on Benicar and what are now the standard MP antibiotics.

Top: After taking a break from the MP in May of 2004, Jane developed edema (swelling) in her foot. Her eyes, face, belly, and hands all swelled at the time.
Bottom: The edema went away six days after she resumed taking Benicar.

For the first year and a half on the MP however, I had quite a rocky time. I experienced an endless and incoherent parade of old and new symptoms and what seemed like no real change. A small increase in inflammation in the central nervous system is capable of deranging the function in very different areas of the body so even when transient it can be quite disconcerting. But about nine months into MP Phase II, I suddenly began to notice slight improvements in function and from there on my IP became more stable and my gains sustained.

To date however, no matter how severe my IP, I have been able to manage it by adjusting the timing, amount or constitution of my antibiotic therapy and by increasing my Benicar dosing. This has necessitated some very detailed and timely advice from the MP staff and a huge dose of courage at times but it has invariably worked.

What was the hardest part about doing the MP?

Believing that I was getting better. I had never really thought of myself as “sick,” just a normally healthy person with some irritating problems that I needed to get rid of and quickly. I wanted a magic bullet which the MP is not. It takes time and you have to persevere.

How did you learn about the MP?

In 2002 I had a three-month remission following a course of an antibiotic prescribed for an opportune infection. As this was the second time I had noticed an improvement in my condition after a short course of an antibiotic, I decided to investigate whether there was any connection between my perceived remission and the etiology of sarcoidosis. I typed in “Sarcoidosis” and “remission” and found Sarcinfo.com – the precursor website to what is now the Marshall Protocol study site.

What made you decide to do the treatment?

When I received the diagnosis of sarcoidosis, my father who is a pathologist, had remarked to me that tuberculosis, leprosy, and other granulomatous diseases looked quite similar to sarcoidosis under the microscope so, it was quite conceivable that Sarcoidosis also had an infectious etiology. That insight remained my guiding light. I had already observed two brief remissions after taking antibiotics for opportune infections and was sure that there was a correlation. The role of the vitamin D receptor in chronic inflammation was a great revelation however. While in hospital, I had begun to think that the inexplicable and sometimes severe fluctuations in my symptoms might be hormonal. I even bought a monograph about hormones, however Vitamin D was mentioned only in relation to its role in calcium metabolism so I didn’t make the connection. Later, when I read the Marshalls’ “Angiotensin Hypothesis,” it was like finding the missing piece to a 1000-piece jigsaw puzzle.

I had my 1-25-D/25-D ratio measured and it came out at 4:1 (normally the ratio should be around 1:1.1). Not only did I have an excess of this chemical in my body, it was a steroid hormone that was interfering with the activity of my immune system. Finally I had found a plausible explanation for many of my bizarre and often transient symptoms. My doctor was also persuaded on the basis of my D metabolite test results to prescribe the MP prototype antibiotic therapy on the condition that I persevere with any antibiotic chosen for a minimum of three months.

What was it like to be one of the first people to start the MP?

I felt like an intrepid explorer. I was strongly convinced of the science behind the MP and always kept in mind Pasteur’s dilemma when he decided to treat Joseph Meister for rabies. I had two young children who needed a mother. There was a small chance that the medications might adversely affect me, however the alternative was a half of a life on steroids and a cornucopia of toxic palliative drugs that would do nothing to alter the course of the disease.

Although I had little or no access to information in Japan, the support I received through Sarcinfo and the extraordinary generosity and vision of the American people in making the website PubMed freely available online enabled me to become the arbiter of my own destiny. I was able to make informed choices and to participate in an international clinical trial through the Marshall Protocol study site that I would never otherwise have been considered for. I was more than happy to participate in this experiment, if, as a result, even one person could be spared the misery I had endured.

As the protocol developed and positive responses to the therapy filtered in however, the magnitude of Trevor Marshall’s vision became apparent. Not just a few sarcoidosis patients but many, many patients suffering from a wide range of chronic diseases stood to benefit from the therapy. The feeling was one of exhilaration.

Describe your experience with light. Were you very sensitive at first? How much light can you tolerate now?

During my early days on the MP, I was extremely sensitive to light and had frequent transient black-outs while working under the fluorescent lighting of my kitchen bench. When the blackouts began to occur while I was driving, I stopped driving. Flickering light from any source would make me anxious and irritable and I always wore sunglasses outside because I found looking into sunlight so painful.

Interestingly, I always felt very peaceful when wearing goggles while skiing and it wasn’t until I first bought a pair of NoIR glasses that I understood why. The relief they provided, and still provide is immense. I have largely lost my photosensitivity but still wear the glasses outside as a matter of habit and precaution. Today patients on the MP are required to block light with NoIR glasses until photosensitivity subsides.

How does your doctor feel about your progress?

My physicians have been very supportive. The prognosis for sarcoidosis of the central nervous system is not very good so I would say that my progress has been greeted with “cautious optimism.” One has to remember that neurologists are not particularly used to seeing patients go from crutches to the tennis court.

What advice do you have for new patients on the MP or current patients?

Think Big!

Be knowledgeable and courageous about beginning the MP. My life would have been very different had the MP been available ten years ago. I “lost” what should have been the best ten years of my life.

Read. Understand your clinical condition and the science underpinning the MP as best you can so that you can understand how a temporary exacerbation of symptoms appearing as IP might affect you. Keep good records. I keep two Excel databases:

1. a daily “Drugs vs Symptoms daily monitor”

2. blood test results which I graph to show trends

I keep copies of all diagnostic tests undergone and (no matter how unpleasant this may seem) get people to take digital photographs and occasionally videos of my symptoms.

What lies ahead?

To return to my professional work very soon I hope.

To be able to follow my dreams again – “Last seen sailing an RS800”?

Not to need another doctor’s appointment for the next 35 years.

Interested in doing the Marshall Protocol yourself? Visit curemyth1.org and your questions will be answered free of charge by experienced patient advocates that volunteer for the non-profit organization that runs the treatment. (Th1 is a name currently given to diseases caused by L-form bacteria, hence the name cure my Th1)

During this time, it’s easy to become confused about some of the concepts that Dr. Marshall has put forth, or even just about how the medications work and affect the body. Happily, before starting the Marshall Protocol, patients can post questions at the website www.curemyTh1.org (Th1 refers to disease caused by L-form bacteria, hence the name Cure My Th1) where their questions are answered free of charge by patient advocates. They are also required to read a range of helpful information on the Marshall Protocol study site.

Nevertheless, I’ve found that some people develop concerns about the treatment, many of which are not quite warranted. This piece is an attempt to address the most common misconceptions about the Marshall Protocol – misconceptions that I have heard people express on various message boards, over email, on this site, and elsewhere. Hopefully, armed with the following information, patients can approach the treatment with greater ease and confidence.

Note: Much of the information in this piece came from the Marshall Protocol study site, where it was collected by Meg Mangin RN and Belinda Fenter. A special thanks for their work.

Misconception #1:  If my blood pressure drops after starting the MP it’s because of Benicar.

Benicar acts as a blood pressure lowering medication only up to a dose of 40mg per day, or the amount contained in one pill. Beyond that, its effects on blood pressure are minimal. This means that taking Benicar more than once a day will not continue to lower blood pressure or deplete sodium.

Based on studies conducted by Sankyo, the pharmaceutical company that makes Benicar, you could take 10 or 20 doses of the medication in a day and still find that your blood pressure would not drop more than it did after the initial dose.

Furthermore, those people who take even one pill of Benicar a day are unlikely to find that their blood pressure drops very much since the drug is a very weak anti-hypertensive agent. Do you know anyone taking Benicar for blood pressure reasons? Probably not, since its effects are so minimal that doctors don’t use it very often.

In fact, a significant number of people in the test groups for the initial FDA Benicar trials exhibited an increase, rather than a decrease, in blood pressure. Dr. Marshall’s work has shown that this is because Benicar binds the nuclear receptors (receptors not involved in blood pressure) more strongly than the angiotensin receptors – the receptors the drug is intended to target which, in any case, have never been shown to directly control blood pressure.

Consequently, most MP patients see little change in their blood pressure while taking the dose of Benicar used by the MP, or four pills a day. Others note a drop in blood pressure, but the drop is almost always due to another reason – immunopathology, or the immune system’s response to bacterial death. The immune system secretes cytokines in response to L-form bacterial death, which along with toxins secreted by the bacteria as they die, cause a temporary rise in symptoms in the area in which bacteria are being killed.

Thus, as people progress through the MP, they find that all their disease symptoms return during the time their bodies are killing the bacteria responsible for causing the symptoms in the first place.

Because many people have experienced symptoms of low blood pressure prior to starting the MP, there is simply no doubt that these symptoms will return as immunopathology. The worse a person’s low blood pressure symptoms were before the MP, the more likely they are to find that after starting the treatment, their blood pressure will drop.

Since Benicar also binds receptors that allow it to palliate this inflammatory response to bacterial death, many patients who start the MP find that Benicar actually helps their blood pressure stabilize rather than drop.

For example, when Kas S. started the MP her blood pressure dropped due to immunopathology. But her doctor incorrectly thought Benicar might be to blame. “So one day, I took less Benicar,” states Kas “but I felt worse, and my blood pressure (BP) was even lower than it was on the correct MP dosage!” Today, after about a year on the MP, her blood pressure is still sometimes low, but during these occasions her symptoms are never affected. Furthermore, at her last doctor visit, while still on Benicar, her BP was 100/70. “If I feel bad during my working day, I take an extra 20 mg of Benicar and my BP actually goes UP, states Kas. “I feel heaps better.”

After 9 months on the MP, Claudia G. experienced a significant rise in immunopathology. In order to mitigate the reaction, she started taking a higher dose of Benicar. After that point, her blood work showed that her blood pressure started to stabilize. “Having increased my Benicar frequency to 6-hourly my blood pressure rose to a respectable 94/57,” states Claudia. “This is remarkable, as it had stabilized at 80/40 before that point.”

I once received a frantic email from a woman who had just started the MP and was concerned that Benicar had significantly lowered her blood pressure. “I am particularly worried,” she wrote, “because before starting the Marshall Protocol I already had extremely low blood pressure to begin with.”

I pointed her to information on the MP board, which explained that Benicar was not the culprit behind her low blood pressure. Since this woman said she had already suffered from low blood pressure before the MP, immunopathology that would “bring back” her symptoms of low blood pressure was inevitable. Patients on the MP have to “face” all of their diseases symptoms as they kill the bacteria making them ill, and unfortunately low blood pressure is one of them.

The fact that immunopathology, rather than Benicar, is to blame for most MP-related drops in blood pressure is supported by the fact that those people who struggle with very low blood pressure at the start of the treatment almost always find that after a year or so, their blood pressure begins to stabilize. After a doctor’s visit they are happy to learn that their blood pressure has returned to a normal range despite the fact that they are taking the exact same amount of Benicar as when they started the MP.

“Your BP will stabilize back towards ‘healthy normal’ as the MP progresses, and the disease is removed. The symptoms thought to be due to low blood pressure will resolve even if the low blood pressure persists,” states Marshall.

“Taking Benicar more than once a day will not continue to lower blood pressure or deplete sodium.”For example, Grace P. suffered from POTS (Postural Orthostatic Tachycardia Syndrome) before starting the MP. “When standing, or getting out of a chair within seconds my blood pressure would go from 120/90 to 80/40 and pulse 80 to 120. I would feel very faint, and my heart would pound” states Grace. But rather than exacerbate her blood pressure condition, Grace found that after taking Benicar along with the other MP medications, her POTS disappeared and rarely returns with immunopathology. “My resting heart rate was before MP 100 and now in the 80s and my BP now can be 90/70 or 120/80 but mostly I don’t feel the difference,” states Grace.

Other patients don’t have a blood pressure monitor but assume their blood pressure drops after starting the MP because they feel dizzy. Again, this dizziness is almost always the result of immunopathology. As described on the Marshall Protocol study site, “The endotoxins released when the MP antibiotics kill bacteria totally upset the body’s hormonal balances and the readjustment process can cause symptoms such as vertigo and dizziness. These symptoms indicate a temporary return of disease symptoms and not a lower blood pressure.”

Furthermore, if immunopathology induces low blood pressure after a patient starts the MP, there is not reason to be overly concerned. In 2004, the NIH issued new blood pressure guidelines for clinical practice. These guidelines state that only blood pressures below 120/80 are considered to be normal. In fact, people who are able to function while maintaining a low blood pressure have been shown to have lower rates of cardiovascular events than people with normal blood pressures.

The NIH has created no medical standards that define low blood pressure, or a range in which low blood pressure is considered dangerous. “Nor is there any proof that the values normally used to indicate low blood pressure in healthy patients have any relevance to patients with Th1 inflammatory disease,” states Marshall. “Marshall Protocol patients with extremely low blood pressure (85/55 or lower) have been able to continue taking Benicar.”

Note: When blood pressure is low, it can help to make sure one is adequately hydrated, so be sure to drink enough fluid. For some patients, additional salt can be helpful.

Misconception #2:  If I feel bad after starting the MP I am suffering from side effects of Benicar.

Benicar is one of the safest drugs on the market. It’s a fact. Nevertheless, some patients still worry that the drug could cause side effects.

These worries are unwarranted. Although they do so for many other drugs, the FDA has set no unsafe upper limit for Benicar. The FDA bases its safety data on ‘post-marketing experience’ – how many adverse events have been linked to the drug – and for Benicar, they are negligible. There has been no dose detected that results in an adverse event.

In fact, the FDA guidelines for Benicar, state that:

• The guidelines allow a dosage of “40 mg Q6hr” (the dose used by patients on the MP)
• Benicar dosing must be individualized.
• The overall frequency of adverse events is not dose-related.”

A recent study published in the Journal of of Pharmacology found Benicar to be safe and well tolerated at doses of up to 160 mg/day. Animal studies in mice, with Benicar doses up to 480 times the human dose of 40 mg per day (relative to body weight), showed that Benicar is not carcinogenic.

The label for Benicar states that the drug is well-tolerated. Adverse events were similar to those experienced by the placebo group – a group of patients who were not given the drug at all. Adverse events were generally “mild, transient and not related to dose.” The frequency of adverse events also had no relationship to the dose of Benicar.

In placebo-controlled trials, the only side effect that occurred in more than 1 percent of Benicar-treated patients vs. placebo-treated patients was dizziness (3 percent vs. 1 percent). The label does state that Benicar should not be used during pregnancy or breast-feeding, but since pregnant women are not allowed to do the Marshall Protocol, the warning is of little concern for those using the medicine to recover from Th1 disease.

“Adverse events were generally ‘mild, transient and not related to dose.’”According to the report, “In the dose-finding study, 792 patients were randomized to Benicar (2.5-80 mg) or placebo once daily… The results of the clinical studies in >3000 patients receiving Benicar showed that the frequency and profile of adverse events with Benicar were generally similar to those with placebo; the frequency of adverse events was not dose related. Benicar, with or without hydrochlorothiazide, was well tolerated over 2 years of treatment.”

In April 2007, the staff of Autoimmunity Research Foundation had a high-level meeting at the FDA in Maryland. One of the topics on the agenda was how we put an end to concerns physicians express about the safety of Benicar.

Those present included the head of the cardiovascular division at the FDA at the time when Benicar was officially approved. “He is expert on the drug’s behavior and is currently the medical director at the Food and Drug Administration division that evaluates drugs,” states Marshall.

“He made it clear that the hypotensive effect of Benicar is already in full effect at a low dose (less than 40 mg) and there is a graph in the package insert showing that beyond that 40mg the dose really doesn’t affect BP any more. Second, he pointed out that the FDA has set no toxic level for Benicar, because its safety is not in question, and certainly not at the levels we are using.”

Furthermore, since the anti-inflammatory actions of Benicar actually protect organs, and reduce damage to the body from immunopathology, any assessment of “safety” should take that into account.

As noted in The Townsend Letter for Doctors and Patients, examples of some of the documented protective effects of ARBs include the ability to:

• prevent migraines
• inhibit liver fibrosis and aid liver healing
• protect the kidneys in diabetic nephropathy
• reduce insulin resistance
• protect the heart from damage from inflammation in myocarditis
• protect the mitochondria from age-associated damage from oxidation

Here are more articles on the general safety of Benicar, which is called Olmesartan in countries besides the United States:

The most common reason that patients who begin the Marshall Protocol incorrectly assume that they are suffering from side effects of Benicar is that they mistakenly attribute the hormonal adjustments that accompany the onset of a Benicar blockade to side effects of the drug. These hormonal changes occur because in most patients with Th1 disease, the body has become accustomed to a higher than normal level of the hormone 1,25-D, which rises as part of the immune system’s reaction to bacteria.

But the Benicar blockade quickly and dramatically lowers 1,25-D – by as much as half in just two weeks. Since 1,25-D is a powerful hormone that affects nearly every cell in the body, and interacts with all the body’s major hormones, myriad other hormones are forced to adjust their levels according to the new lower level of 1,25-D. This often causes temporary neurological-type symptoms such as (but not limited to) fatigue, dizziness, headache, photosensitivity, irritability, sleep disturbances, brain fog, etc. As the body adjusts to this hormonal shift these symptoms dissipate, usually in a week or two.

The relationship between 1,25-D and the body’s other hormones can be observed in this chart created by Marshall.

Last, but not least, patients should not confuse the rise in symptoms that occurs due to immunopathology with side effects of Benicar. “The ability to accept and tolerate a certain level of immunopathology is a requisite of continuing with the Marshall Protocol and is not always predictable,” states the study site. “Usually symptoms wax and wane, but they can also be constant for varying periods of time. Immnopathology-generated symptoms often mimic a patient’s disease symptoms but they can also be surprisingly new, pointing to areas of previously undetected inflammation.”

Benicar is designed to reduce the impact on the tissues of the inflammatory substances released by the immune system as part of the immunopathological reaction. Also, taking the antibiotics as directed, in a controlled fashion, should minimize the risk of any permanent tissue damage.

“There is no guarantee that immunopathology won’t cause some permanent tissue damage, but we believe that you can control your therapy to avoid that,” state the MP board staff. “On the other hand, it is a given that not treating the underlying cause of your inflammation guarantees further permanent tissue damage and possibly even death.”

Note: Only plain Benicar, without hydochlorothiazide diuretic (HCT), should be used in the MP. Hydrochlorothiazide (HCT) is too hard on the kidneys and liver – organs where people with Th1 disease may have undetected problems. Also, hawthorne, lithium, and extra potassium supplements have the potential to negatively interact with Benicar. The label warns that in rare instances drugs that block the renin-angiontensin system have resulted in kidney failure in patients with severe congestive heart failure. However this problem has yet to be observed among patients taking Benicar.

Misconception # 3:  Long-term antibiotic therapy is dangerous and I will develop antibiotic-resistant bacteria.

For decades, doctors have prescribed minocycline for conditions such as acne at doses much higher than those used by the Marshall Protocol. In fact, minocycline was actually over-prescribed for teenage acne when it was released in 1968. Yet, in the 40 years since the drug’s release, no significant species have been shown to be resistant to it.

Recently, a multi-center double-blind placebo-controlled trial concluded that minocycline is safe and effective in patients with mild to moderate rheumatoid arthritis and supported its use (alone or as adjunctive therapy) in rheumatic diseases. Tetracyclines, of which minocycline is an example, have been also used effectively in urogenital, gastrointestinal, and lower respiratory tract infections. Minocycline is also one of the few antibiotics that remains active against the bacterial species Methicillin-resistant Staphylococcus aureus (MRSA), despite the fact that it has been prescribed for decades.

Of course, people starting the MP are already infected with bacteria that have developed without cell walls in order to resist the standard antibiotics. So people may start the MP with bacteria that are already resistant to minocycline. But when minocycline is taken in combination with the other phase 2/3 antibiotics, according to Marshall, the statistical chance that bacteria will evolve that cannot be killed when these antibiotics are used in tandem is so close to zero it is inconsequential. That is why using all combinations of each carefully chosen MP antibiotic is important in order to assure complete recovery.

“The MP is being used against antibiotic-resistant bacteria already in your immune system,” states Marshall. “The antibiotics have been chosen so as to minimize (essentially eliminate) the likelihood that any additional resistant strains will be formed (that is, any more strains in addition to the resistant strains you are fighting with the MP).”

“ The antibiotics have been chosen so as to minimize (essentially eliminate) the likelihood that any additional resistant strains will be formed.”The low doses at which phase two and three antibiotics are used also keep to an absolute minimum the chance of bacterial resistance. For example, the highest dose of minocycline used by the MP is only 100 mg every other day, and one of the phase 2/3 antibiotics is only taken every ten days. By way of comparison, when it’s prescribed for acne minocycline is taken 200-400mg daily. One of the phase 2/3 antibiotics is another case in point. On the MP, it is taken once every 10 days whereas for a number of other treatments, it is sometimes taken in doses twice as high and every day over the course of a week. Because they are taken at such low doses, the antibiotics seldom cause yeast infections.

According to the Physicians Protocol for Using Antibiotics in Rheumatic Disease, “Minocycline tends not to cause yeast infections. Some infectious disease experts even believe that it has a mild anti-yeast activity. Women can be on this medication for several years and not have any vaginal yeast infections.

Besides, L-form and other bacteria create substances that can bind and block the Vitamin D Receptor (VDR), a receptor that controls the production of many of the body’s antimicrobial peptides. The antimicrobial peptides are antibiotics naturally created by the body that kill bacteria by a variety of mechanisms including disrupting membranes, interfering with metabolism, and targeting components of the machinery inside the cell.

By killing L-form bacteria and restoring the activity of the VDR, the MP antibiotics allow these natural antibiotics to be produced in greater amounts – to the point where in later stages of the treatment, the antimicrobial peptides allow the body to kill bacteria even if the MP antibiotics are stopped.

If you or your doctor are still worried about long-term antibiotic use, you may want to consider the “side effects” of not doing a potentially curative treatment. The symptoms of multiple sclerosis are devastating disability and death. The symptoms of Chronic Fatigue Syndrome and fibromyalgia are minimally functional existence, loss of cognitive function, and unrelenting pain. The symptoms of rheumatoid arthritis are continual pain and encroaching disability and dysfunction. The symptoms of Alzheimer’s Disease are… well, you get the picture.

Misconception #4:  I’ve been told I’m allergic to one of the MP antibiotics, so I can’t do the treatment.

Most people who become symptomatic after taking a particular antibiotic used by the MP ultimately realize that they are not allergic to the antibiotic but are instead experiencing immunopathology.

When the MP antibiotics kill bacteria, it is inevitable that a patient will experience immunopathology (also called the Jarisch-Herxheimer Reaction), or, as described above, a temporary rise in symptoms caused by bacterial death. This means that after each antibiotic dose, a patient’s disease symptoms return for a period of time.

“ Once you understand the immunopathology resulting from killing these Th1 pathogens, all these so-called side-effects are shown up for what they are – immunopathology – and they disappear as you get rid of the pathogens.”Although Benicar plays a critical role in activating the immune system so that immunopathology can take place, before starting the MP, many people’s immune systems are still active enough to mount an immunopathological response. This means that even before the MP, a pill of minocycline can result in symptoms that doctors incorrectly label as an allergy reaction. In reality, these reactions are just a sign that the antibiotic is killing bacteria, as it will continue to do if the patient starts the MP.

“Immunopathology [in response to an antibiotic] is to be expected and should not be interpreted as a side effect, adverse reaction or intolerance,” states the Marshall Protocol study stie.

The paper “Observations of Jarisch-Herxheimer Reaction (JHR) in Sarcoidosis Patients” (which applies to all Th1 illnesses) states that the JHR reaction is sometimes mistaken for a “hypersensitivity reaction” or even the cause of a related, (probably pre-existing) disease such as lupus. Similarly, Pruritus, hives and rash induced by the JHR reaction can be misdiagnosed as an allergic (Th2) reaction to the antibiotic.

Indeed, most MP patients who were once told they had an “allergy” to antibiotics now acknowledge that they were just experiencing a normal immune system reaction.

“Once you understand the immunopathology resulting from killing these Th1 pathogens, all these so-called side-effects are shown up for what they are – immunopathology – and they disappear as you get rid of the pathogens,” states Marshall.

Because of its potent anti-inflammatory effects, Benicar goes a long way in helping patients manage immunopathology because of its ability to reduce inflammation and prevent further tissue injury. Consequently, those people who have reported previous “allergic” reactions to an MP antibiotic have, once on Benicar, generally been able to tolerate it successfully as long as they use caution while ramping up the level of their antibiotics.

If it turns out that a person has a problem tolerating a particular MP antibiotic at one point in the protocol, for whatever reason, they can use another MP antibiotic in its place. Then later in the MP, when their bacterial load has dropped, they can generally tolerate the first antibiotic without a problem.

Misconception #5:  Dr. Marshall is not a medical doctor so his research can’t be trusted.

Several days ago, I attended a presentation by Dr. Leroy Hood , MD, PhD, president of the Institute for Systems Biology in Seattle, Washington. The first person to pioneer several cutting edge technologies for DNA analysis, Hood boasts a list of awards, achievements, and credentials that would impress anyone. Here is a man who has published in excess of 600 peer-reviewed papers, received 14 patents, and co-authored textbooks in biochemistry, immunology, molecular biology, and genetics. One of the many biotech companies he co-founded, Amgen, had a 2006 revenue in excess of 14 billion dollars. Smart guy.

Dr. Hood began his presentation “Systems Biology and Systems Medicine: Towards Predictive, Preventive, and Personalized and Participatory Medicine,” by describing how most currently active research teams study proteins and molecules in isolation, one at a time.

According to Hood, medical research has stagnated for wont of systems thinking, the kind of inquiry which is the hallmark of… engineers. To paraphrase one of the titles of his slides, Hood asked rhetorically, “What would an engineer’s approach be to medicine?” Dr. Hood told the audience “Biology is an information science. Systems thinking is a response to biological complexity.”

Throughout his presentation, Hood made the point, among others, that the pioneering researchers and doctors of tomorrow will have to be trained in engineering and computer science in order to understand the body’s “circuits” and feedback pathways.

“ According to Hood, medical research has stagnated for wont of systems thinking, the kind of inquiry which is the hallmark of… engineers.”According to his promotional website, “Dr. Hood has been driven by the conviction that the needs of frontier biology should drive the selection of technologies to be developed, and once a new technology has been developed, these technologies can revolutionize biology and medicine.” These technologies include a variety of molecular modeling programs.

To be sure, Dr. Marshall’s background in electrical engineering is somewhat unconventional, but that should not disqualify the man from researching medical phenomena. In fact, if you asked Dr. Leroy Hood and any number of other forward-thinking researchers, this background is very much an asset. He may even be exactly the type of researcher Hood envisions as a medical leader.

Marshall received his PhD in Electrical Engineering from the University of Western Australia in 1984 and also possesses an undergraduate and a masters (1978) degree in Electrical Engineering.

But rather than becoming an electrical engineer, Marshall successfully took his mastery of electronics and applied it to medicine and biotechnology. When Marshall moved to the University of Western Australia in 1978, he commenced his PhD thesis research while studying patients suffering from diabetes and infertility at the Charles Gairdner Hospital. This research allowed him to discover a novel way of using pulsatile LHRH for treating cryptorchidism, along with both male and female infertility.

In 1982, Marshall moved to California. He continued his PhD thesis research while becoming a “Visiting Scientist” in the Department of Surgery at the Hospital for Sick Children in Toronto, which at the time was a leader in pediatric diabetes research. This partnership led to his thesis “Modelling and simulation in diabetes care” and a paper on insulin infuser technologies. Shortly after, Marshall became interested in sarcoidosis and pursued a degree in biomedicine in order to further understand the disease.

Marshall has had plenty of experience in a medical setting in which he has worked successfully with researchers, doctors and patients. And his background in engineering has allowed him to pursue biological issues with a novel, systems approach.

Despite not having a medical degree, Marshall is still frequently invited to lecture on medical issues. Over the past two years he has given presentations to the FDA, the American Academy of Environmental Medicine, the Days of Molecular Medicine conference, and will be chairing a session about vitamin D and the VDR at the upcoming Conference on Autoimmunity in Portugal.

In 2007, Marshall was appointed Adjunct Professor in the School of Biological Sciences and Biotechnology at Murdoch University in Australia. He has also recently been cleared by a Continuing Medical Education committee as being competent to provide CME training for physicians.

The fact that Marshall has backed his findings with molecular modeling data is seen as a plus by those who understand the programs he uses. In a recent phone interview, Dr. Adam Godzik, Director of the Joint System for Molecular Modeling Institute at the University of California, San Diego, told me that molecular modeling can be quite accurate if the correct biological question is matched with the correct molecular modeling tool – an art at which Marshall has proven himself to be adept.

Of course, results obtained using molecular modeling software cannot be confirmed as 100% correct, but then again, as Godzik commented, experimental trials are never 100% accurate either. Godzik was quick to emphasize that molecular modeling and experimental medicine are overlapping fields – the best results are generally obtained when a clinical trial is preceded by molecular modeling research.

Let’s say a scientist wants to know which of 8,000 drugs will best bind a receptor in order to elicit a certain effect. By determining how the shape of each drug molecule fits with the receptor in question, molecular modeling software allows for the quick elimination of several thousands of the drug candidates, eventually leaving about 5 or so possibilities that can be further tested in a clinical setting. The above process saves countless hours of work and millions of dollars that would otherwise be spent on a multitude of clinical trials, most of them headed in the wrong direction.

When Marshall developed a disease model for sarcoidosis (a model that now holds true for nearly all inflammatory diseases) his decision to model how the drugs used by the MP interact with many of the body’s receptors was a logical move that allowed him to conserve accuracy while saving time – allowing him to put the MP treatment guidelines up on the web as quickly as possible under conditions where millions of lives are at stake.

Today, the Marshall Protocol study site serves as a trial in which hundreds or even thousands of patients with the aid of their physicians are testing Marshall’s model in a clinical setting. The drug interactions he predicted using modeling software have definitely held up in this clinical setting. The proof is in the pudding – patients are recovering from a wide array of previously incurable diseases.

Even absent a certain MD credential, Dr. Marshall’s experience in engineering and eclectic background may very well be the prototype of pioneering researchers to come. If we are to take Drs. Wood and Godzik at their word, we can expect to see many more researchers like Marshall in the future. In the meantime, just because medical schools have yet to integrate molecular modeling into their curriculum, and just because the average doctor is not used to making decisions based on molecular data, does not mean Dr. Marshall’s work should be not be viewed on par with that of any other knowledgeable research scientist.

On a personal note, as someone who has been repeatedly misdiagnosed and given treatments that have made me sicker by various board-certified physicians over the years— I genuinely welcomed Dr. Marshall’s somewhat novel perspective and experience set. I’m now convinced that a non-traditional perspective is exactly what was needed to rethink curative treatment options for inflammatory disease.

Misconception #6:  If my blood work (particularly that which pertains to kidney function) goes out of range after starting the MP, that’s a bad sign.

The result of any blood test must be considered in its clinical context. For patients on the Marshall Protocol, measurements that fall outside of established ranges are almost always a result of the chemical and immunological fluctuations that accompany immunopathology. This means after a patient starts the MP, changes in blood work are to be expected, and are actually a sign that the treatment is working to kill L-form bacteria.

For example, MP patients often find that percent lymphocytes drops. This is because some of the cytokines released by the immune system in response to bacteria cause down-regulation of lymphocytes, causing them to leave areas of high inflammatory action and migrate to the periphery. The down-regulation also reduces the number of lymphocytes being generated from stem cells.

“Lymphocytes are downstream bystanders,” states Marshall. “Their level of expression is dependent on the nuclear receptors, which is dependent on the bugs. As you get rid of the bugs everything else comes back to normal.”

“You can all expect your White Blood Cell (WBC) and differential, the balance of neutrophils, monocyctes, % lymphocytes, NK cells, and etc, to change a lot as the Th1 bacteria are killed. It is best not to get fixated on any expectation of ‘bad figures’ and ‘good figures.’ If Doc gets too concerned about the numbers then, IMO, you should back off your antibiotic dose and take the therapy a bit slower,” he continues. For more information see the thread “What do my lab tests mean? on the study site.

“C-Reactive Protein is an inflammatory marker which, if elevated [upon beginning the MP], returns to baseline along with Triglycerides, Alkaline Phosphatase and 1,25-D as the MP does its job,” states Marshall. These markers typically start to drop after about 6-12 months.
SED rate (another measure of inflammation) will (hopefully) go way up in the early stages of the Marshall Protocol indicating that bacteria are being killed, and the body’s immune system is dealing with them. Later on (at 12 months or so) the SED rate will remain closer to normal, as fewer organisms are being killed. Eventually it returns to baseline.”

There is a tendency for doctors and patients to become particularly alarmed about fluctuations in markers of kidney or liver function after a patient has started the MP. However, for the vast majority of patients these test results are again an expected part of the healing process.

“ For the vast majority of patients these test results are again an expected part of the healing process.”Patients who start the MP are often unaware of the fact that their kidneys or liver are infected until blood work comes back out of range. This is due to the fact that inflammation in these organs tends to be “silent.” Before the MP, the kidneys are inflamed because they are infected with L-form bacteria. But the patient is largely unaware of the problem because their immune system, which has been weakened by L-form bacteria, doesn’t kill enough of the pathogens to cause a rise in bacterial byproducts that would be picked up on a blood test.

But once patients activate the innate immune system with Benicar, and begin rapidly killing L-form bacteria thanks to the MP antibiotics, the resulting immunopathology causes a rise in bacterial death, the effects of which are finally high enough to show up on lab tests.

“Because most kidney inflammation/disease is ‘silent’, it is not uncommon for subclinical kidney inflammation to be exacerbated due to unavoidable immunopathology as part of the recovery process with the Marshall Protocol,” states the study site.

Thus, people on the MP should not be surprised to learn their kidneys are infected. Patients with Th1 disease have a high risk of kidney inflammation, and many doctors are unaware of the problem because they have no idea how sick their Th1 patients really are. Kidneys are also one of the organs that suffer significant fibrosis (collagen deposition and scarring) from the Th1 disease process.

“The kidneys of Th1 patients are almost always weak, some of them extremely weak. But none have ‘failed’, because weak kidneys start to reveal themselves as part of the healing process, and they are protected by the ARB (Benicar), and the reactivated innate immune system,” states Marshall.

So it is not unreasonable for the levels of BUN – a measure of the amount of nitrogen in the blood that comes from urea, a substance removed by the kidneys – to come back elevated, as bacterial endotoxins cause nitric oxide and subsequently more nitrogen to be generated in the inflamed tissues. Levels of creatinine – a breakdown product of phosphate that is filtered by the kidneys – may also become elevated after people start the MP. This is not unusual, as most short courses of antibiotics aimed at killing classical bacteria also cause spikes in BUN and creatinine. According to the study site, maintaining a level of creatinine 10-20% higher than normal indicates the kidneys are functioning adequately while the MP is inducing immunopathology to resolve kidney inflammation.

The important thing to keep in mind is that these markers fall back into range as the disease resolves and L-form bacteria are eradicated. Remaining on Benicar despite fluctuations in markers of kidney and liver function is a necessary part of the healing process.

In Journal of Nephrology Dialysis Transplantation, Biff Palmer of the Division of Nephrology at the University of Texas Southwestern, agrees that a rise in creatinine levels should not discourage doctors from keeping their patients on an ARB medication such as Benicar. “In the patient with an increase in serum creatinine concentration, decreasing the dose of [the ARB]… will cause the serum creatinine concentration to return to the original baseline,” states Palmer. “Unfortunately, such an approach is not optimal for the long-term preservation of renal function and should be discouraged.”

Researchers at Boston University in Massachusetts agree, stating that “High-dose ARB treatment in patients with chronic renal disease is not associated with any clinically significant long-term negative effects on serum creatinine or potassium and is thus an important therapeutic modality with which to achieve further reductions in urinary protein excretion.”

Instead, MP patients with kidney inflammation and their doctors should be extremely comforted by the fact that the patient is taking Benicar. This is due to the great number of studies, which have found that Benicar and other ARBs protect the kidneys from the effects of inflammation and cytokine damage.

The benefits of Benicar on patients with kidney inflammation include:

• decreased insulin resistance, fewer symptoms of the metabolic syndrome, and decreased inflammation in patients with chronic kidney disease.
• the ability to ameliorate renal injury and fibrosis in rats when taken at ultrahigh doses.
• decreased (intra)renal vascular resistance, increased renal perfusion, and significantly reduced oxidative stress in patients with type 2 diabetes.

…and the affects of ARBs in general on people with kidney inflammation include:

• improved patient prognosis in non-diabetic chronic kidney diseases with mild-to-moderate renal dysfunction.
• effectiveness in controlling UAE [urinary albumin excretion] in cases in which blood pressure is not well controlled, implying that ARBs have renoprotective actions independent of changes in blood pressure.
• Ability to actively control proteinuria and stabilize kidney function in children, providing an alternative to more toxic therapies, especially corticosteroids, in children with glomerular disorders such as those associated with obesity.
• The formation of a dosage-dependent, anti-inflammatory effect on the kidneys that is mediated by suppression of NF-kappaB activation and chemokine expression.
• Ability to retard the progression of advanced renal insufficiency.
• Effectively slow the progression of chronic allograft nephropathy (CAN)
• Ability to affect the local renin-angiontensin sytem (RAS) and thus improve renal injury and function in a rat model of potentially progressive glomerulosclerosis.

…among others.

Misconception #7:  The MP needs to be described by a peer-reviewed double blind placebo-controlled trial before I can take it seriously.

First, Dr. Marshall’s work has been peer-reviewed. His most recent paper, “Vitamin D discovery outpaces FDA decision making,” was by invitation and appeared February 1st in BioEssays – a prominent peer-reviewed journal. A total of four of his papers have been published in print journals and can be found in PubMed.

That said, peer review has a poor record for furthering medical knowledge, at least when it comes to game-changing and disruptive ideas. “The evidence against peer review keeps getting stronger,” says Richard Smith, former editor of the British Medical Journal, “while the evidence on the upside is weak.” Yet peer review is a sacred cow, largely because passing peer review confers great prestige – and often tenure.

Andrew Grove, the founder of Intel, is an outspoken critic of the way medical research is done. He has likened peer review to a “Middle Ages guild, where you have to sing a particular way to get grants, promotions and tenure.”

What provision is there for research that undercuts current dogma? For example, how would any researcher make a case in the medical literature that pathogens cause sarcoidosis? The answer is that publication would be prohibitively difficult– not because of weaknesses in methodology or shortcomings in data– but because the top posts for the defining journals in the field are occupied by pulmonogists who will never accept publication of a paper which points to pathogens as the cause of the disease. This doesn’t make the job of Trevor Marshall and research team impossible—just more difficult.

“The problem is that one does not publish in ‘a prestigious journal’ to help gain acceptance of the treatment protocol and the theory in general,” states Marshall. “It just doesn’t work that way. It works exactly the other way around, in fact. The way that the medical publishing process works is that one has to get general acceptance by the folk who will be chosen to peer review the paper before submitting it to a prestigious journal.”

One promising alternative to peer review is open peer review. Because he adopted the process of open peer review several years ago, all of Marshall’s work, including his presentations, has been reviewed at length by others in his field. “Our work has been peer-reviewed extensively, and been gone over with a fine-tooth-comb,” states Marshall. “Our Journal of Independent Medical Research (JOIMR) papers, for example, use open peer review, where the reviewers shed their anonymity to ensure the integrity of their reviews.” For example, take a look at the list of peer-reviewers at the end of this JOIMR paper.

Another common question among people familiar with the MP is “When will a standard randomized, double-blind, placebo-controlled study be done to ‘prove’ the efficacy of the Marshall Protocol?” While there is the promise of a cohort or case-control study at some point, there will probably never be a double-blind or placebo-controlled study.

The Marshall Protocol is unique because researchers conducting standard blinded study trials currently base their conclusions on data that reveals only a small (usually 5-20%) difference in statistical significance between those patients given treatment and those to receive a placebo. But the response rate of those patients taking part in the current phase II trial of the Marshall Protocol is essentially 100% – not to mention the fact that the treatment is also based on a very solid scientific model.

To date, the positive response of patients to the treatment is so definitive that to blind a separate study on the MP raises an ethical dilemma. For one, because the Marshall Protocol takes so many years to complete, it just isn’t ethical to give sick, suffering patients a placebo for multiple years—not when so many people die from these diseases every day.

This is supported by FDA guidance regulation ICH E-10, which states, “Where an available treatment is known to prevent serious harm, such as death or irreversible morbidity in the study population, it is generally inappropriate to use a placebo control.”

“For one, because the Marshall Protocol takes so many years to complete, it just isn’t ethical to give sick, suffering patients a placebo for multiple years—not when so many people die from these diseases every day.”This is not a novel argument. Paul Glasziou writes in his 2007 BMJ article “When are randomized trials unnecessary? Detecting signals from noise” that “Although randomised trials are widely accepted as the ideal way of obtaining unbiased estimates of treatment effects, some treatments have dramatic effects that are highly unlikely to reflect inadequately controlled biases.”

Glasziou goes on to invoke any number of historical examples, which illustrate cases, such as the MP, where the size of the treatment effect (signal) relative to the prognosis (noise) is so great as to make randomized trials completely unnecessary. These examples include insulin for diabetes, defibrillation for ventricular fibrillation, and blood transfusion for severe haemorrhagic shock.

Significantly, most major medical discoveries have not required double-blind placebo controlled trials in order to demonstrate their ability to impact disease. As MP patient advocate George Howell describes, “Alexander Fleming’s discovery of the bacteria killing power of penicillin was never put to a controlled double-blind study, nor a peer-review in some journal. It worked! It was used! It saved countless lives.” (Fleming did his work prior to the invention of double-blind studies, but never mind that!)

Another reason the placebos would be difficult or almost impossible to use, is that patients would know within days what group they were assigned. The relief and hormonal fluctuations brought on by the Benicar, the immunopathology caused by the antibiotics are undeniably strong and would undermine the blinding in short order.

Clearly, the MP will have to be tested in a manner that does not require a blinded study. “Please understand that we have spent the last three years working with NIH and FDA to define what a successful and rigorous trial will look like,” states Marshall. “When we conduct that trial it will be unlike anything that has ever gone before – because it will have an end-point of success – of ‘cure.’”

In order to start this process, Autoimmunity Research Foundation has achieved FDA designation for two of the MP antibiotics in sarcoidosis. But they need to spend another few years getting the same paperwork in place for CFS, RA, Lupus, Parkinsons, Diabetes, and, well, the list goes on and on. “In the meantime the alternative is to do what we have done, and what we are now doing. There is no other way,” states Marshall.

Indeed, under the circumstances, the staff of ARF have already initiated an alternate study design that is allowing them to successfully compile data. As mentioned above, this is the Marshall Protocol study site itself – an open based, phase II clinical study in which a large cohort of Marshall Protocol patients, with a variety of Th1 inflammatory diseases and supervised by their personal physicians, are reporting, via the Internet, dramatic improvement in their health. This is an unorthodox method of conducting a trial of a novel treatment protocol, but it has successfully allowed solid molecular science to be confirmed by a comprehensive proof-of-concept clinical trial.

Few would argue with Marshall’s choice to use this type of trial in the face of the urgency surrounding his discoveries. There are now thousands of people on the Marshall Protocol, most of whom are reporting improvement and recovery. Should Marshall have waited until he could conduct a more “standard” trial on the MP, these patients would have lost the opportunity to recover and some may have died—to say nothing of suffering that has been alleviated through the treatment. With the stakes this high, it is senseless to think that Marshall should sit on his discoveries until a standardized trial can be set up several years down the road.

Misconception #8:  If I do the MP, I will have to become a permanent cave dweller.

Light sensitivity is common among people who start the MP. But a patients’ ability to tolerate light is highly individualized and unique to their disease state.

The exact mechanisms behind why people on the MP become sensitive to light are largely unknown. One thing is certain – light sensitivity is not a side effect of the Marshall Protocol medications, except in the sense that some patients report that increasing their level of antibiotics, and thus their immunopathology, causes their light sensitivity to increase. This suggests that there may be a connection between bacterial load, more intense bacterial killing, and light sensitivity.

There is, however, no doubt about the fact that once L-form bacteria dysregulate a person’s vitamin D metabolism, light in the eyes, through mechanisms not yet fully understood, can generate symptoms in many other areas of the body. In patients with inflammatory disease, light in the eyes can also stimulate a portion of the brain called the amygdala that in turn generates an increase in neurological symptoms.

Similarly, exposure to sunlight and heat from the sun – which further dysregulates the body’s level of 1,25-D – can lead to neurological as well as physical reactions that are poorly understood.

Since in many cases light sensitivity does seem to correlate with bacterial load, patients who start the Marshall Protocol are required to buy special sunglasses that block a greater spectrum of the sun’s rays than normal sunglasses. When first starting the treatment, they are also highly encouraged to avoid sunlight by wearing thick dark clothing and closing the shades on windows that get direct light.

These precautions must be taken because MP patients often have no idea as to the extent of their infection until they see how strongly they react to the MP antibiotics. Immunopathology and bacterial load may turn out to be greater then expected, so a patient can never assume that they will not become sensitive to light and become symptomatic after light exposure.

Once immunopathology has begun, patients get a better idea of the nature of their bacterial load and their ability to tolerate light. Some (generally more ill) patients find that they can hardly tolerate the rise in symptoms generated by light exposure during the first phases of the treatment. and are forced to shut out all natural light, while using only a few low-watt bulbs inside the house.To protect their eyes from excess light, they block natural light and reduce artificial lighting to 30 lux, which is similar to the romantic mood lighting in a nice restaurant not a dark ‘cave’. These people learn to adapt their lifestyle, if needed, to accomplish necessary outdoor tasks and enjoy social outings after sunset.

Other patients find that they have trouble seeing when wearing their sunglasses and that when they take them off, or are exposed to moderate amounts of sunlight, they don’t feel a rise in symptoms. If this proves to be the case, the patient is not required to keep wearing the glasses.

Similarly, if a patient is willing to tolerate a rise in symptoms in order not to wear sunglasses, then they are not required to wear them. In most cases, this occurs when a person needs to continue working a job at which they simply cannot block light adequately. It is currently believed that exposure to sunlight, even though it raises the level of 1,25-D (and may raise the level of 25-D), does not cause a significant retardation of bacterial killing or inhibit overall long-term healing, as long as the patient’s level of 25-D is maintained below 20 ng/ml.

People who are forced to work in an environment where they must tolerate some symptoms of light exposure should be encouraged by the fact that patients have succeeded on the MP under these conditions. “There have been members on the MP who’ve had considerable sun exposure and still made progress,” states Meg Mangin of Autoimmunity Research Foundation. “Some have tolerated significant sun exposure symptoms, yet persisted.”

Thus, blocking light and wearing sunglasses is not something that is forced blindly on every person on the MP. Rather, patients block sunlight and light in their eyes due to necessity. They block light because they simply cannot tolerate the rise in symptoms that occurs if they are exposed to the sun or take off their glasses. Since patients are already dealing with symptoms of immunopathology, most are eager to block light in order to keep the total amount of symptoms they must deal with on a regular basis to a minimum.

“ Thus, blocking light and wearing sunglasses is not something that is forced blindly on every person on the MP.”Happily, while the majority of sunscreens are ineffective in blocking vitamin D production, sunscreens with zinc oxide, especially those with the highest percentage of the compound, have been shown to inhibit the production of both 25-D and 1,25-D. Their effect is still not strong enough to fully block sun flare symptoms (patients must still wear thick, dark clothing), but they can, in some cases, lower the severity of a light reaction.

Nevertheless, the goal of every MP patient is to reach a state where they will once again be able to tolerate a normal amount of light. As bacterial load decreases and dysregulated vitamin D metabolism is corrected, light sensitivity also subsides. Thus, as patients forge ahead and kill bacteria, they are gradually able to tolerate more and more light.

In order to take note of gains in light sensitivity, patients must often experiment by exposing themselves to a little more sun or light and assessing their reaction. “The only way to find out [if light sensitivity has decreased] is to try a few ‘baby-steps’ and see,” states Marshall. “I usually say it takes 18-24 months to get back to any sort of ‘normal’ sensitivities though. But as you begin to feel better, you will venture out more. Through a process of trial and error you will discover how much sunlight exposure you can tolerate. It’s a very individual thing. I would, however, advise erring on the side of caution when experimenting with sunlight tolerance.”

Although it will take some people much longer than others, patients who stick with the MP and eliminate the bacteria causing their illness end up as completely normal people who can once again tolerate the same amount of light as a healthy person. “As you recover you will get to the point where you can’t see anything through those dark glasses any more,” states Marshall. “As one progresses through Phase 2, the risk of setback from occasional exposures becomes less and less. Eventually the risk disappears (although you will probably never want to sunbathe again). So relax, and start to enjoy life again.”

In other words, no, you will not have to wear those big glasses five years from now.

Misconception #9: It’s okay if my doctor modifies the MP.

It is important that patients who begin the Marshall Protocol take their antibiotics exactly as directed. Taking the antibiotics when not using Benicar, dosing the antibiotics at higher levels than directed, or not pulsing them, will significantly decrease or completely stop immunopathology from occurring. Patients may feel better temporarily, but they are no longer killing bacteria.

“Please understand that the Marshall Protocol may seem simple, but it has a lifetime of my own research behind it. Anything you change will likely get you into trouble,” says Marshall.

Marshall argues, “We have to remember that there are many species we are fighting against. Second, the immune system is so finely balanced between not killing them, and killing them that small changes to our lifestyle, or to our food, or caused by other drugs we are taking, might stop the immune system from killing the bacteria. If there is no killing the patient will generally feel better.”

The substitution of one MP antibiotic for another could lead to serious problems. For example, since the tetracyclines are all different at the molecular level, doxycycline is very different from minocycline (which is used by the MP).

Why does the MP use minocycline over doxycycline? One reason is that doxycycline doesn’t kill as wide a range of bacteria as minocycline. The other is that doxycycline has an effect on the brain beyond its anti-bacterial effects. “This is easy to verify,” states Marshall “if, when you are in phase 3, you try a couple of 200mg pulses of doxycycline. The feeling you get is nothing like the immunopathology you have endured for so long. And that feeling is addictive. There is a HUGE difference. I have seen people die on doxycycline, while they recover on minocycline and demeclocycline.”

Short-term (non MP) use of doxycycline (a month or so) will do no serious harm, but in the long term the species that are resistant to the antibiotic will continue to proliferate and exacerbate the chronic disease.

It is also extremely important that MP patients do not take alternative medications or supplements along with the MP medications.

“Once a patient starts Benicar, the body usually works well enough so that a person can get through the initial stages of the MP with a good balanced diet, and no specific supplementation, or, in the case of vitamins, supplementation at a fraction of the RDA levels,” states the study site

“ The reality is that the body works by setting up a delicate balance between the receptors and molecules that control numerous complex feedback pathways, many of which are intertwined.”Supplements can be over-the-counter (OTC) or prescription medications. Just because something is available OTC doesn’t make it safe or innocuous. The reality is that the body works by setting up a delicate balance between the receptors and molecules that control numerous complex feedback pathways, many of which are intertwined. Any substance, whether or not it is listed as a drug, can bind the receptors that control these feedback pathways. In the absence of research that tells us what receptors a supplement or drug affects, we have absolutely no idea what pathways it may be altering if it enters the body. It could bind a receptor that interferes with immune function, or dysregulate a pathway that regulates important hormones.

The study site concurs. “While a person may think that there is no problem with a particular supplement, they simply can’t know that there is no problem with it.”

“Most of the body’s healing processes work better if they are left alone while you are on the MP. The concept that we should intervene in these diseases with supplements or therapies has not worked, and I deprecate it,” states Marshall. “I have seen this happen so often before…trying to Band-Aid the metabolite shifts (with supplements) will not help recovery, and will often make the disease worse. They are almost always counter-productive.”

As Marshall describes on the MP study site, it’s important to understand that the body does not work by having specific “levels” of any particular substance. Instead, as described above it works by setting up a balance between all the various metabolites. So it is generally useless to try and force the body to have a particular level of any one metabolite when the body’s own homeostasis is working to lower it for some reason – a reason that is often associated with the disease process itself. All metabolites should come back into balance as the MP medicines kill off the pathogens making patients sick.

“Just because a particular metabolite is a certain level in ‘healthy’ individuals doesn’t mean to say that any good will be achieved by supplementation in sick folks,” states Marshall. Vitamin D is a prime example. Now that the low vitamin D levels often observed in patients with chronic disease have been shown to be a result rather than a cause of the disease process, giving a person with low vitamin D levels more of the substance only causes a rise in the immunosuppression that results when the secosteroid begins to block the VDR.

With regard to vitamin D, it has been found that even when supplements do not include vitamin D on the label, they may still contain the substance. This is because vitamin D is naturally found in some plant and animal products and the FDA does not require labeling of naturally occurring vitamin D found in foods, herbs, or supplements.

Herbal supplements are a problem because “natural” herbs, oils, etc., have an effect on the body because they contain chemicals. The problem is, nobody knows exactly what chemicals they contain, because there is no requirement to have them tested or quality-controlled, or even listed on the label. The FDA controls only pharmaceutical drugs. The truth is, very few herbs are “natural.” The natural products have been dried, crushed, compounded, and concentrated by a manufacturing process. These compounds have the potential to negatively affect the body’s feedback pathways in the same manner as drugs and supplements.

Take, for example, rosemary and sage, which have high levels of carnosic acid – a compound that binds and deactivates the VDR. Just tens of milligrams of the substance can negatively affect the immune system.

It’s okay to enjoy small amounts of carnosic acid in foods seasoned with rosemary and sage, but if the substance is part of an over the counter supplement, it could seriously affect progress on the MP.

It’s also important to understand that supplements that make people with Th1 disease feel good are rarely improving their health. If people with L-form bacteria feel better after taking a supplement it’s almost always because the substance is affecting a pathway that allows it to slow the activity of the immune system. By palliating the immune response, it temporarily decreases the inflammation generated in response to L-form bacteria, causing a feeling of “wellness.” Yet, as in the case of vitamin D, this situation in which the immune system is depressed simply allows L-form bacteria to spread with greater ease.

There are instances where it’s OK for MP patients to take supplements. If a supplement is providing a patient with needed palliative relief of intolerable symptoms, then they may continue its use. For example, if a patient has abdominal pain that is relieved by milk thistle, or if a supplement helps them to get much-needed sleep, then its use is permitted. Similarly, if a patient cannot get the RDA of a necessary nutrient, such as calcium, from diet alone, sometimes a supplement may be appropriate (of course this does not apply to vitamin D).

Since at this point no physician has been trained and certified to administer the MP, it is the patient’s responsibility to see that the prescribing doctor understands the effectiveness of the MP, and the dangers inherent in deviating from the guidelines.

“Under no circumstances should you assume your physician will understand the MP, no matter how many patients he/she may be caring for. The amount of time needed to understand the intricacies of the Th1 disease process is beyond the capabilities of most physicians to provide,” states Marshall.

Consequently, it is important that MP patients work closely with the moderators on the study site, in partnership with their physician, to navigate through the multiple paradigm shifts that are needed to induce recovery from chronic disease.

Patients should encourage their doctor to join the Private Section for Health Professionals where he/she can communicate with other medical professionals using the Marshall Protocol. If the doctor has any questions, he/she may contact Dr. Marshall via email or phone.

Patients must follow the MP as written and as counseled because safety is at stake. If a patient is committed to succeeding with the MP and his/her doctor insists on altering the treatment, then patients are strongly encouraged to find a doctor who has a better understanding of the MP or who is willing to learn.

Misconception #10:  If my D ratio isn’t correct the MP won’t work for me.

It is recommended, but not required, that patients who decide to start the MP test the levels of their D metabolites. This process consists of two tests – one for the active form of vitamin D called
1,25–D, and the other for 25– D, the precursor form of vitamin D obtained from supplements and high levels of sunlight. Armed with an understanding of the latest model of vitamin D metabolism, the MP moderators can infer some information about a patient’s disease state based on this data.

Dr. Marshall’s most recent research has revealed that low levels of 25-D are common in patients with Th1 disease because of the fact that high levels of 1,25-D inhibit the conversion of a substance called pre-vitamin D into 25-D. In essence, high levels of 1,25-D naturally downregulate levels of 25-D. So a low 25-D level is a good indicator of Th1 disease.

However, if a person has been supplementing with large amounts of vitamin D before the 25-D test, or has had excessive sun exposure, their 25-D level will almost certainly be artificially skewed upwards. This information is important because patients starting the MP must work to get their level of 25-D down into a range under 20 ng/ml so that the VDR, and subsequently the innate immune system, can function up to par.

Similarly, because it rises as part of the inflammatory response, levels of 1,25-D above 30 pg/ml suggest systemic inflammation. If 1,25-D levels exceed the Merck maximum of 45 pg/ml, the patient is generally at risk of bone loss due to osteoclast (bone cell) stimulation by 1,25-D. Levels above 60 pg/ml indicate well-perfused inflammation, where the inflamed tissue is close to the bloodstream. Usually that indicates lung or heart involvement. Anybody with a 1,25-D over 80pg/ml is generally at greater risk for cardiac immunopathology.

So a low level of 25-D and a high level of 1,25-D is a good indication that a person is indeed suffering from Th1 disease. Yet, due to the number of variables that can affect the D test results, D levels that do not reflect Th1 inflammation should absolutely not rule out the possibility that a patient is suffering from D-mediated inflammatory disease.

It was previously thought that a low 25-D indicated a rapid conversion of the metabolite into 1,25-D. However with Marshall’s latest research showing that low 25-D levels are actually a result of the disease process, the D ratio (ratio of 25-D to 1,25-D) is no longer a sufficient indicator of vitamin D dysregulation, especially when 25-D levels rise above 15 ng/ml.

“Now that we know more about the molecular activity of vitamin D metabolism, the D ratio carries less significance,” states the Marshall Protocol study site. Also, since Benicar works to correct vitamin D dysregulation, the D ratio has no value after the MP has begun.

“ It’s extremely important that even if the D tests prove inconclusive, people considering the MP do what is referred to as a therapeutic probe.”One pitfall of the D tests is that the labs sometimes mishandle the 1,25-D sample. The sample is very sensitive and must be sent to the lab frozen where it must remain frozen until the time of the test. It helps to remind the technician at the drawing (satellite) lab to freeze the sample for shipping, but if patients show symptoms of Th1 disease and their 1,25-D results come back with levels that don’t indicate Th1 inflammation, they should not discount the possibility that the sample wasn’t correctly frozen.

The MP site warns that 1,25-D results from Labcorp have proven unreliable even when the sample was shipped to them frozen. This may be due to a policy of allowing the frozen sample to thaw in the refrigerator before they run the test. This lab should be avoided if possible.

Also, you should know that several medicines are able to interfere with the levels of the vitamin D metabolites. If patients are taking these medications at the time of the test, they will receive incorrect results. For one, the antifungal medication Diflucan directly inhibits the enzyme CYP27B1, which is needed for the macrophages (white blood cells) to energetically convert 25-D to 1,25-D. Thus, patients taking this medication at the time of their D tests will obtain a false low level of 1,25-D. Use of immunosuppressants such as prednisone lowers 1,25-D by 25-40%.

One small 1982 study found that serum concentrations of 1,25-D fluctuate with the menstrual cycle. Levels of 1,25-D were shown to be dramatically higher near ovulation in women not on the pill, suggesting that 1,25D may be higher near ovulation and during the latter half of the menstrual cycle.

For all these reasons, it’s extremely important that even if the D tests prove inconclusive, people considering the MP do what is referred to as a therapeutic probe. A therapeutic probe is simply a way of saying that a patient should start the Marshall Protocol medications. If they are infected with L-form bacteria, Benicar will likely cause expected neurological-type adjustment symptoms and minocycline will almost always provoke an immunopathological response within the first month or two of treatment.

These reactions are proof positive that the patient is infected with L-form bacteria and thus should be given priority over the D tests to decide if a person should start the MP. This is particularly true if the person is displaying obvious symptoms of Th1 disease or has been diagnosed with one of the illnesses that the MP has been shown to successfully treat.

However, it is important to note that for patients who have been consuming high levels of vitamin D prior to the probe, their immune system (via the VDR) may be blocked from successfully killing their bacteria, even with the help of antibiotics, and the probe would fail. In this case, the level of 25-D should be checked, and if high, the protocol could be started– even in the absence of a response to minocycline– as long as the patient works to diligently remove vitamin D from his/her diet.

“Luckily, the time-honored therapeutic probe is an effective ‘acid-test’ in these Th1 diseases,” states Marshall. “The ultimate therapeutic probe is the Marshall Protocol itself – anything else will have both false positives and false negatives. If the patient starts the MP, and experiences immunopathology for themselves, then not only is it confirmation that the problem was/is occult bacteria, but also proof-positive to the patient that they are on the correct track. That is why we tend to suggest the MP even when the D data is uncertain. Your physician makes a risk-benefit analysis – evaluating the risk of the ARB and antibiotics (effectively zero to healthy individuals) with the degree of disability you are experiencing from your illness, and his/her expectation of whether the illness will get worse or better if left alone.”

Misconception #11:  Anyone who disagrees with Dr. Marshall is banned.

It’s true, a handful of people have been banned from the Marshall Protocol study site, but the banning of an individual is certainly not a common occurrence.

The relatively small number of people who have been banned from MarshallProtocol.com have failed to understand the purpose of the study site. The study site is not an “anything goes” discussion board, nor is it a site where members come to seek emotional support or engage in protracted debates. Rather, it has a single mission: to help guide patients who have educated themselves about the Marshall Protocol (by reading the information on the site) progress as successfully as possible on the treatment.

When asked about the Marshall Protocol in a phone interview, Belinda Fenter of Autoimmunity Research Foundation stated, “So, our website [the MP study site] was different from most that discuss disease. For the most part, other medical forums are places where free-for-all discussions take place, sites where people chime in about anything that comes to mind. Some boards serve as arenas where chronically ill people seek support and discuss the difficulties of coping with disease. We never wanted our website to follow either of these models. The aim was to create a study site that was focused on helping people understand the basics of disease and how to get better. We set a high bar for discussion topics – questions have to be directly related to disease or the treatment. Some people have a hard time adjusting to the fact that certain discussion topics are not appropriate. But we are intent on maintaining a level of accuracy and focusing on the science.”

“We encourage the exchange of information but posts which are merely speculative; challenge the authenticity of our scientific research; are skeptical or taunting in nature; are inaccurate, misleading or disrespectful of the moderators will not be tolerated and will be edited or deleted,” state the board staff.

“Keeping the information on the board accurate is critical.”Let’s say you have found that frog eye extract has helped your symptoms in the past. You come to the MP study site detailing the benefits of frog eye extract and repeatedly question the moderators on why frog eye extract is not a part of the Marshall Protocol. If you persist with these comments your posts will be deleted, and if you simply cannot drop the subject or you begin to insult the moderators and others on the board, you might be banned. Most patients on the MP site have a single focus and that is to get well.

The MP board staff are all volunteers who work long hours for no pay. With more and more people starting the MP every day, they only have the resources to deal with questions that pertain directly to the MP. This is particularly true because the moderators read every post on the board in order to ensure its accuracy. Keeping the information on the board accurate is critical. If a member accidentally writes something incorrect in his/her progress report or elsewhere on the site, other members could read the post and become confused. The incorrect advice might hinder fellow patients’ progress or even endanger their health.

Nevertheless, the moderators do try to discuss a range of scientific issues with members when they can find the time. To this end, Dr. Marshall has set up a forum called “Dr Marshall’s Perspective – a place to discuss the science underlying chronic disease.” The forum contains over 60 threads in which Dr. Marshall talks one-on-one with members, helping them understand the latest scientific breakthroughs (not just his own!). Members are also able to start their own topics where all kinds of studies are openly discussed, and people are free to comment about a range of topics. In this forum and elsewhere if you challenge Dr. Marshall politely and with respect, he will often try to address your concern and you will not get banned. If his response is a bit feisty, it’s only because it’s not easy to be a scientist who must constantly defend his discoveries to a medical community that is deeply embedded in the quagmire of incorrect consensus thinking.

Misconception #12:  The MP does not take care of viral or fungal co-infections.

Co-infections – such as Candida, Mycoplasma, Rickettsia, Mycobacteria, Bartonela, Babesia, HHV-6, the Eptein Barr virus, the Herpes virus – are commonly detected in people with Th1 disease. However, these pathogens are not driving the disease process. They simply “come along for the ride”, generating extra symptoms in people with inflammatory disease, because of the fact that people infected with L-form bacteria are, for the most part, severely immunocompromised.

The Th1 pathogens that underly the disease create ligands which are able to bind and block the Vitamin D Receptor – a fundamental receptor of the body that controls the activity of the innate immune system and the production of the antimicrobial peptides, proteins that kill bacteria, viruses, and fungae by a variety of mechanisms including disrupting membranes, interfering with metabolism, and targeting components of the machinery inside the cell. Thus, as more and more L-form bacteria accumulate, the body is left without tools to fight other pathogens that enter the body.

“The fact is, when the VDR is not functioning properly, and the innate immune system is overwhelmed by Th1 pathogens, then it cannot properly deal with co -infections which would otherwise be trivial for it to manage,” states the MP study site. “When the body is weakened by these Th1 diseases, co-infections are very common, as the immune system is ‘busy’ dealing with the pathogens which have parasitized the phagocytes (white blood cells) and can’t deal as effectively with the opportunistic infections.”

It’s analogous to “being seen at the scene of the crime but not actually committing it,” states Marshall. “The viruses, etc. are only co-infections, because the body’s immune system has been weakened by the Th1 pathogens, and is unable to fight the infection.”

But as people reach the later stages of the MP, they have killed off most of the bacteria that were previously creating VDR-blocking ligands. Because they have been avoiding vitamin D, 25-D is also no longer blocking the VDR. This means that their immune systems regain strength – vigor that allows their bodies to tackle co-infections that are unable to survive in the face of a functional immune system. The antimicrobial peptides (the body’s natural antibiotics) are produced again, making it even harder for co-infections to persist.

“Once the immune system is no longer under challenge, it will be able to cope with opportunistic infections,” states Marshall. “The MP is designed to allow your immune system to function and eventually kill all chronic infections, no matter what label has been put on any suspected infection. Once the Th1 bacterial pathogens are killed off, the immune system deals with the viruses it couldn’t clear while the bacteria were present. That’s why folks lose warts and other things as they recover on the MP.”

“Wait and see!” he continues. “A healing immune system is no longer ‘out of sync’ with the world, but copes normally with the various things life throws at it, instead of over-reacting.”

“ Once the immune system is no longer under challenge, it will be able to cope with opportunistic infections.”Mainstream medicine emphasizes the role of co-infections rather than the Th1 pathogens in chronic disease because while the pathogens that cause co-infections show up on laboratory tests, L-form bacteria do not. Thus, unaware of the tremendous amount of L-form and biofilm bacteria that their patients harbor, most doctors and researchers fail to understand the role these pathogens play in the disease process and incorrectly attribute all symptoms to co-infection instead.

“The issue is that the infections which can be easily detected in Th1 patients are co-infections, and not the cause of their illness,” states Marshall. “The Th1 pathogens hide so well that no antibodies are generated, and even molecular tools have difficulty detecting the traces of DNA from host-phagocyte apoptosis (bacterial death). The most dangerous and successful pathogens are the ones which are intra-cellular, and therefore do not show up on routine testing. These co-infections are not going to make you as ill as the Th1 pathogens.”

It helps to understand that viruses simply cannot cause Th1 disease because of the fact that their genomes generally don’t have a ribosome – or a protein that would allow them to translate their DNA. This means they are forced to rely on the host or upon bacteria to turn their DNA into proteins that can cause symptoms in the host.

“The viruses can’t create these proteins on their own so they just hang around as co-infections because the weakened immune system in Th1 patients can no longer kill them,” states Marshall. “The viruses are part of the pathogenesis, but only after the phagocytes have become parasitized by the bacteria that drive the primary disease process.”

“Everybody with a serious Th1 infection has HHV-6 and EBV (well, nearly everyone),” he continues. “The really nasty viral co-infections are things like active HIV and Hepatitis. There is usually no point in sweating the typical viral titers. They do not cause illness, despite what you read.”

Indeed, patients on the MP do find that co-infections resolve as they wear away at their L-form bacteria.

“I originally thought of myself as having a viral onset because I really began getting fatigued and started my downhill course after what seemed like a bad flu-like illness that was never identified,” states MP patient Joyce R. “I’m not sure what role the ‘virus’ played but I know that I have been responding well to the MP, just as predicted for a Th1 disease caused by bacteria blocking the VDR.”

Misconception #13:  If people who reach a state of remission thanks to the MP don’t stop taking antibiotics and Benicar it’s because they can’t.

Those new to the MP often express suspicion when hearing that many patients who have reached remission are still taking a combination of antibiotics and Benicar. Are MP patients deluding themselves by continuing to be on a treatment that is ultimately ineffective?

“If they stop the antibiotics will their symptoms come back?” skeptics ask. To that, the answer is no. People who reach the later stages of the MP have killed the vast majority of the bacteria that once caused their symptoms. They are dead – gone forever. Patients in remission who stay on the MP meds are well aware of the fact that if they stopped their antibiotics and Benicar they’d feel just fine.

Why then would a patient stay on the MP when their disease symptoms are gone?

People stay on the MP medications even after reaching a state of remission out of curiosity and a desire to be something of a pioneer – to discover what might happen if they are able to kill bacteria not necessarily associated with their old disease symptoms.

This is because even after a person on the MP is no longer symptomatic they may still have bacteria left to kill. The question is, “What role do these bacteria play in the body?” There is speculation that some persistent bacteria may be associated with the aging process, especially since diseases and symptoms of aging from cancer and cardiovascular disease to aches and pains– basically everything that makes getting older such a drag– are at their essence, inflammatory conditions. Because bacteria cause the immune system to mount a constant inflammatory response, the presence of L-form or other Th1 pathogens may very well be responsible for aging skin, wrinkles, and the wear and tear on organs.

People who haven’t completed the MP consider it inevitable that as they age, they will need to stock up on any number of medications including thyroid medications, cardiac meds, statins, NSAIDS, B/P meds, etc. But people who have reached the later stages of the MP see no reason why they cannot take their level of healing to a maximum – to a point where they will never need these medications and may experience great health during their elder years.

“ Why wouldn’t a patient want to explore what ‘better than ever’ means?”The desire to stretch the MP to its limits is compounded by the fact that for many people on the MP, it’s not enough to feel like one’s “old self.” Meg Mangin, an MP moderator who has chosen to stay on her MP meds despite reaching a state of health has commented that “she is determined to kill everyone of those little bugs” Why wouldn’t a patient want to explore what “better than ever” means?

What does it mean to be healthy? For most patients on the MP, “feeling healthy” before the treatment was not actually a real state of wellness. Essentially, since they were born or grew up with some of the symptoms of their disease, they assumed these symptoms to be part of a “normal” existence. How would they know otherwise? So as symptoms resolve, patients on the MP increasingly report reaching a state of health that they never knew was possible.

“Patients may continue to be surprised at the state of ‘normalcy’ they achieve. They eventually reach a higher level of functioning and reliable health than before treatment,” states the study site. “It is not just a simple ‘return to health’, it is a return to a state of good health we have never known, or certainly one that we can’t remember,” states Marshall. At this point few people consider stopping their antibiotics and Benicar. What if they can feel even better? How do you define better?

“I don’t know any of those who have reached the stage of ‘cure’ that feel otherwise,” states Marshall. “We have personally experienced that many of the so-called “diseases of the aging” are really bacterial diseases. And that is a very profound observation….”

The following is taken from my interview with Dr. Greg Blaney, another MPer to stay on his meds despite symptoms resolution.

“My own health has recovered to a point where I see signs of age reversal. My eyesight has improved, my hearing has improved, and my cognitive function is better than ever. After I exercise I feel invigorated – the way I used to feel when I was young, rather than drained. There is no doubt that the MP can have a significant effect on a patient’s longevity. Experts in the field of immunology are increasingly pointing to the fact that the aging of the immune system is a main factor influencing longevity. As people grow older, their immune systems are forced to deal with higher bacterial loads, which in turn means they have to manage a greater inflammatory response. The MP downregulates this inflammatory response, restoring the agility of the immune system, which significantly affects the aging process.

That means that I’m going to be greedy about staying on antibiotics until I’ve reaped every possible benefit of the MP. Come this Christmas I will have been on the MP for three years. All my symptoms are gone and I feel completely healthy. Except for one small issue. I still have occasional tinnitus. Some days it’s completely gone, but other days it’s still at about 20% of where it used to be. I’m staying on antibiotics until this issue is completely gone. I can see myself staying on antibiotics for at least another six months, maybe even a year. I have no concerns about staying on them for a longer period of time.

Some of the symptoms that I suffered from before the MP started when I was only 5-6 years old, so I had been sick for over 50 years. I have no intellectual concerns about spending 4-5 years on medications in order to reverse disease symptoms that had manifested over such a longer period of time, especially since I know how slowly L-form bacteria grow and how they can become dormant for periods of time. I also feel there are simply no adverse reactions or negative side effects that I need to worry about while taking the MP medications. It’s an extremely safe approach.”

That being said, people not interested in testing the boundaries of the MP can stop their antibiotics as soon as they feel that the symptoms of their disease have dissipated and they are no longer experiencing immunopathology. Obviously they can stop the meds before that if they want to – and settle for a state of lesser health.

“It is entirely an individual choice whether to go for total elimination of the pathogen, or stabilize at some lesser point and slow down the antibiotic dosing progression,” states Marshall.

Of course, once they have stopped the MP, people can once again pick up L-form bacteria. But they can eliminate the pathogens on a regular basis by doing “clean-ups” – or temporarily taking the MP meds at repeated intervals for a short periods of time. These clean ups could be done every year, or every five years etc – it’s up to the patient. One thing is for sure – if people who have completed the MP do regular clean-ups they will never again develop a load of L-form bacteria capable of causing a Th1 illness.

Furthermore, since people to complete the MP end up with innate immune systems that are in enviable shape, their bodies have the strength to naturally kill many of the L-form bacteria they may encounter. “The immune system seems to be able to do the cleanup job on its own, once folk have fully recovered. In my opinion, there is no harm in doing an annual cleanup though – but it no longer seems that it will be necessary to maintain good health,” states Marshall.

Misconception #14:  If I don’t do the Marshall Protocol, my illness might go away on its own.

The chronic inflammatory diseases treated by the MP never go away on their own. If you have been told that your illness has the possibility to go into “spontaneous remission,” then the person making such a claim fails to understand the actual definition of the word “cure.”

It’s not that patients with Th1 disease can’t and won’t go through periods where they might feel better. Unfortunately, these periods are usually a sign that the immune system has become severely compromised. Whether temporary “remission” is driven by immunosuppressive drugs, a high intake of vitamin D, excessive sun exposure, or simply the accumulation of a bacterial load that is so high that the VDR is almost completely shut down by bacterial ligands– these periods are times when L-form bacteria are alive and well, spreading, and surely infecting other tissues. This causes illnesses such as arthritis, heart disease, decreasing kidney function, diabetes, cancer and even diseases of aging to develop later in life. But because the immune system is no longer able to kill the pathogens, the inflammatory response to their death subsides, causing the patient to feel a sense of temporary relief that is often mistaken for “wellness.”

“ In reality, remission is accompanied by recurrence and relapses.”It comes as little surprise then, that members of the medical community who believe in spontaneous remission tend to base their information on studies that are notoriously poor at following subjects for long periods of time – periods of time that would allow researchers to take note of the declines that occur after bacteria have spread and any temporary periods of palliation have subsided. These studies would have to last for at least 5-10 years, with endpoints assessing systemic illness. Such studies would surely find that disease symptoms persist even in those people who had once experienced temporary periods of relief.

“There has somehow been a misconception that remission could last a lifetime,” states Marshall. “In reality, remission is accompanied by recurrence and relapses. Take, for example, sarcoidosis – which has the same basic pathogenesis as all other Th1 diseases. Researchers at Jefferson Medical Center in Philadelphia found a 74% relapse rate in sarcoidosis patients with treatment-induced remission, while only 60% of patients identified as having a favorable prognosis actually sustained remission over 130 months.

Many argue that the most accurate study of sarcoidosis to date is the 2003 NIH ACESSS study, which followed 215 sarcoidosis patients for two years – a period during which it is sometimes mistakenly thought that the disease can go into remission. The study found that measures of sarcoidosis severity remained unchanged over the two-year period, despite the fact that many patients were using corticosteroids and other drugs.

In fact, in the NIH ACCESS study there were no documented cases of spontaneous remission. Even in the positive-sounding “improved” category for clinical markers, the percentages described were at best “improved”, not “better” and certainly not “cured.” The study also concluded that most patients with persistent sarcoidosis at two years were “unlikely to have resolution of the illness” and that “end-stage pulmonary sarcoidosis usually develops over one or two decades.”

In simple terms, the study found that not one patient recovered over a two year period, and that any patient to remain ill with sarcoidosis for two years is likely to die from the disease over the following ten to twenty years.

It has also been argued that there is a gap between how patients themselves and members of the medical community perceive success and improvement, as well as their concept of cure. The medical community has a tendency to be satisfied by results that show a patient has stabilized thanks to a particular medication, without taking into account systemic effects of disease, such as fatigue and pain, which are often excluded as endpoints.

A 2005 Dow Jones Newswires article on gene therapy described patients who had undergone treatment as “basically cured” – even though three had developed leukemia and one died.

The above example is a misuse of the word “cure.” For one thing, an actual cure results from a treatment that allows all participants to become well, no side effects or long-term harm included. Did the above study check in with its subjects a decade down the road in order to access their health years later? Probably not. But if they did, the subjects were probably symptomatic again, as gene therapy has not yet been adopted as an effective way to treat disease.
The public often isn’t satisfied with the medical community’s perception of a “cure,” which is why so many patients have left mainstream medicine – searching for solutions among doctors that practice alternative medicine or even among psychotherapists.

Unfortunately, for chronically ill patients, commercial culture and the media have combined to progressively define down what “better” means—so much so that assessing the significance of any new “breakthrough” becomes a tall order.

Television and the Internet abound with reports of products you can buy, supplements you can take to erase all the vestiges of illness. Promises, promises.

When I first fell ill with CFS I went to see a doctor, who was, and is, considered an expert on CFS. His website, which has since been changed, stated at the time that well over half (if memory serves, it was 79%) of his patients recovered.

At my first appointment I was prescribed a multitude of prescription drugs – drugs for ADD, seven sleeping medications, drugs for blood pressure, the adrenal glands, and on and on…. Then I was instructed to buy around 25 different supplements. Several months later I wrote an article in Fibromyalgia Aware magazine describing the utter horror expressed by my landlord when, while fixing the stove, he stumbled upon my drug cabinet and saw the amount of medication I was taking.

At my next appointment I asked my doctor – when do I get cured? When do I stop these meds? His answer was that I would need to take most of my medicines for the rest of my life in order to mask my symptoms. That was his definition of cure. At that point I realized that the cure I envisioned – the ability to run marathons, the ability to travel and to make plans without hesitation, the ability to pursue a challenging career – is not the “cure” offered by specialists like my former doctor.

The MP is different. It addresses the root cause of Th1 disease – the bacteria causing symptoms in the first place. And unless these bacteria are targeted and killed, Th1 diseases do not go away. If they went away on their own, why would there be hundreds of forums on the Internet where people with chronic disease discuss what it’s like to live a life full of relapses and pain? If they went away on their own, then why are “experts” like my former doctor still in business? If they went away on their own, then why would so many people who have tried myriad other treatments for their disease make a long-term commitment to the Marshall Protocol?

When did you first start to become ill? Describe the progression of your disease.

I was exposed to L-form bacteria at an early age. During the 1970s, I was a practicing Registered Nurse in Connecticut, first at Yale University, then at Middletown Memorial. At the time, a number of young boys were admitted to our hospital with strange muscular, arthritic complaints, swollen joints, and fever of unknown origin. After being given high doses of antibiotics, one boy even developed a heart block. I was in the ICCU and assisted with the temporary pacemaker before he was transferred to Yale Medical for diagnosis. We were following the prognosis of these young men with interest at the time. Most of the cases were originating around the town of Old Lyme, Connecticut. Later, scientists at Yale would group the symptoms these boys presented under the label of “Lyme disease” – inspired, of course, by the name of the town in which the boys first became sick.

Today, based on biomedical researcher Trevor Marshall’s work, we understand that these boys, who were working in close contact, were passing around a tremendous amount of cell wall deficient pathogens known as L-form bacteria. The fact that L-form bacteria interfere with immune function made it easy for them to acquire the bacterial species Borellia as a co-infection. These boys almost certainly passed some of their L-form bacteria to me.

Before that time, during the year after graduating from Florida State nursing school, I contracted hepatitis B after being exposed by an incident in Beth Israel hospital in Boston. This was a severe case and prevented me from working for one year. It also seemed to bring on problems with my blood sugar regulation, as I suffered from hypoglycemia. It also increased my symptoms of Reynaud’s syndrome where my fingers would get numb and blanched when cold or stressed.

Starting during childhood, I also had bouts of IBS when under stress. This escalated after the bout of hepatitis and I was hospitalized twice in Yale New Haven during the 70s, and was told my entire GI tract was inflamed. At 30 years old, having worked in the ICCU for 5 years, I left the high-stress life. I moved back to Florida where I married and began spending much time in the tropical sun living on a sailboat. I had my daughter in 1979, delivered by C-section. In 1985 we moved to Spain, although I would return to the United States at regular intervals.

While in Spain, I contracted Paratyphoid B, a typhoid-like illness caused by a strain of Salmonella. During travels through Morocco and other countries, I suffered from a variety of other infections. My two dogs even had a parasitic disease called Leishmaniasis, which I treated with a weekly injection. After being exposed to so many germs, I was certainly a prime candidate for Dr. Marshall’s model of chronic disease in which people accumulate a “toxigenic pea soup” of pathogens, all of which contribute to chronic symptoms down the road.

Then, in the mid 90s, I was bitten by a tick while vacationing at the Jersey Shore. I had one week of flu-like symptoms that cleared, but I was never totally symptom-free from that time forward. Slowly I started to have back problems, muscle spasms, and bouts of malaise that would cycle off and on. This did not stop me from riding my horse and even trying to run in a Club. But I was called the “snail” because I never had enough stamina to keep up with the pack. In 1999 we had a very virulent attack of ticks and fleas on our animals. None of the normal products seemed to kill them. It was like a plague and I am sorry to say that I handled many of the ticks and fleas because I was constantly picking them off the animals without gloves. I remember entering the dog kennel one day only to find that my legs were black with the fleas. I was literally pouring buckets of chemicals on them at that point. Later my dog died from an array of symptoms, all surely caused by L-form bacteria.

Shortly thereafter, I became very ill with abdominal cramping, nausea, and a low-grade fever, malaise, profound weakness, headache, photosensitivity, congested eyes, muscular stiffness, and pain similar to that of fibromyalgia. I began to lose cognitive function and started to stutter. I became irritable and had mood swings and terrible insomnia. The worst was extreme back pain. The Spanish doctors did a number of tests and could not find out the cause, as nothing was abnormal in my blood work. An X-ray showed that the discs in my back had become swollen, and I was diagnosed as having radiculitis, this being inflammation of the nerve roots. I’ve had a baby, and this pain was worse than the pain I experienced during childbirth. I was unable to sit or stand and no medication seemed to help.

At the very same time my nephew and my cousin back in NJ were having similar symptoms and were diagnosed as having Lyme Disease. So the Spanish doctor did an Eliza score that was elevated and started me on 100 mg of the antibiotic doxycycline 4 times a day. The symptoms immediately began to subside, and I was treated for 6 weeks.

I improved only to begin a phase where I started to cycle in and out of rounds and rounds of feeling fairly OK followed by periods of feeling terrible and taking more doxycycline. I also began to develop strange muscle spasms. It felt as if there was a live animal inside me, moving the muscles inside my body. The feeling was similar to that of pregnancy contractions in the sense that they really shook me up but weren’t painful. I started to experience tics and twitching in my fingers and toes. I developed a left sided earache and a painful cheek. I started to do research about Lyme on the internet. I wanted to avoid IV antibiotics at all costs because I remembered how the boy from Old Lyme, Connecticut had developed a heart block after being given high-dose antibiotics, which I now know was a severe reaction.

By 2000 I was a chronic mess. I started to have what felt like panic attacks in my chest – as if all the energy was leaving my heart area. I was seeing a therapist for the emotional instability. Every time my symptoms returned in full force, I could feel my muscle strength disappearing at an ever-greater rate. I finally returned to the States determined to find help. I also had to return because I was so debilitated that I needed my family to help me cope. I was scared to death.

Back in the US in 2001, I continued to take doxycyline, continued to herx, and continued to deteriorate. After finishing one nine-month course of the antibiotic, my perception was so skewed that I was convinced I had multiple sclerosis. The muscles in my legs were so heavy that it seemed as if I was wearing cement boots. I didn’t even have the strength to roll over in bed. During this time, and even during the year before, I was unable to tolerate going to the grocery store. The trip to the back of the store to get meat was a nightmare. I really thought I was nuts, as every time I would get dizzy, nauseous and faint.

As I continued to get sicker and sicker, I contacted 15 different specialists, each of whom refused to see me or take me on as a patient. After getting the door slammed in my face I was desperate, but today I think the fact that I never ended up seeing a “specialist” is one of the best things that’s ever happened to me. Instead of seeing a specialist, I eventually ended up becoming the patient of a general practitioner in my area. At that point I started taking alternative treatments – colloidal silver and flaxseed oil extract (which is high in vitamin D). Not surprisingly, several months later, I had a severe relapse. I was out in the sun trying to do a small amount of gardening when I just collapsed. After that point, I began to suffer from palsy-like shaking of my left arm and dark purple staining of the skin on the back of my hand. I had been doing lots of searching on the internet looking for help from Lyme. It seemed that the people who had done strong IV drugs were just as bad off as those who had taken oral antibiotics.

Finally, one of my Google searches led me to Sarcoinfo.com – the precursor website to the Marshall Protocol study site. The treatment made sense and the science seemed solid. I asked my doctor if I could start the Marshall Protocol medications and he said “NO” but he would be willing to follow me with routine blood tests under my insurance. I persevered and finally found another elderly open-minded alternative type doctor who agreed to let me try the MP. He had been using minocycline on his rheumatoid arthritis patients with some success. I began the treatment in August of 2004.

I was also driven to pursue the MP because some of its major tenets resonated with the theories of a Japanese doctor I had worked with and respected while in Spain. He had explained to me that what we call the symptoms of an illness – a runny nose, diarrhea, coughing – are actually just the body’s response to getting rid of byproducts and toxins, which in most cases are created by an infectious agent. The body will stay healthy if the immune system is in balance. This helped me understand that once on the MP a rise in symptoms was a good sign, an indication that my body was killing the bacteria, making me feel “worse but better” by getting rid of the debris they left behind.

How did you react to the MP medications?

I started to feel better as soon as I started taking Benicar. I experienced strong immunopathology (the immune system’s response to bacterial death) at points but the symptoms never reached the level of the worst symptoms I had experienced before starting the MP. In fact, immunopathology was always manageable and I was able to continue to have a life while doing the treatment. Sometimes immunopathology occurred in tissues of the body that I hadn’t even realized were infected before starting the MP. For example, a strange immunopathological reaction developed where I would wake up in the middle of the night, cough, and choke. Obviously I had bacteria in my throat and sinuses that I had not realized were there pre-MP. As expected, the reaction gradually went away as the bacteria were killed.

The old irritable bowel syndrome and colitis symptoms came back and were quite intense, with bouts of diarrhea. In fact, different parts of my body reacted with more intense symptoms followed by relief of symptoms. Usually worse before better. Other symptoms that flared but then went away were a burning feeling in my tongue and also an increase in discomfort in my jawbone around my teeth.

At times the immunopathology made me feel weak and fragile, and during those periods sometimes I did wonder, “Will I ever get over this?” Worse than dealing with the pain was the fact that when I felt weak, I hated to view myself as an old, chronically ill lady. But as I killed enough of the bacteria causing my symptoms I got my drive back. I turned a corner and now those images of weakness and disease have dissipated.

What are your symptoms like now?

When I first started the MP, I had a good deal of immunopathology in the lower L4 and L5 disks of my spine. However, these symptoms gradually waned, and are now minimal. I can walk quite a bit – so much more than I ever could before. This year, I was finally able to return to Spain, and it was the first time in five years that I could walk without any pain. Pre-MP an MRI had confirmed that the L4 and L5 disks were swollen. Since I no longer have symptoms associated with the swelling it’s on my agenda to have that test repeated to prove they are healed. Whereas before I couldn’t bend over to put on my shoes or even my pants, today I can easily touch my toes and the flexibility in my spine has increased tremendously.

I wasn’t prepared for my legs to swell due to immunopathology, but while bacteria in my legs were being killed, my knees and ankles became red and swollen. However, these issues also resolved as I wore away at my bacterial load. My muscle spasms have significantly diminished. No more stepping off a curb the wrong way and getting a terrible spasm in my rear end or neck.

I used to have terrible headaches that are no longer a problem. Because of the headaches, I used to take up to six Tylenol a day. Now I hardly ever take a Tylenol. The same goes for Valium and Xanax which I used to take in order to keep my muscle spasms and my nervous system under control. Now I only take those meds on rare occasions when I think I may be subjected to a lot of stress.

Before the MP, I had also had symptoms in my chest. They were hard to describe – it felt as if all the energy in my chest was wrong, as if there was not enough energy going to my heart. I was always concerned about pain and weakness in this area. During the treatment I did have increase in these symptoms – to the point of having chest pain, but these feelings have gone away. I have had heart tests done which show I have an anatomically healthy heart.

My colitis and IBS symptoms have improved immensely. I can’t even think of the last time I had diarrhea or colitis-like symptoms.

Although for a while my immunopathology brought back periods where I was very emotional or paranoid, those feelings have now subsided and I feel very level headed. My thyroid levels, which at one point during treatment became unstable, have now bounced back into range.

And I can once again drink alcohol! I used to have terrible reactions to alcohol. One drink would make me hungover for days. But this past Christmas, I actually took shots of whiskey, held up fine, and enjoyed the taste. My nails are looking better and although I’ve had dandruff all my life, I go through periods now where it completely goes away. Whereas I used to have a twitching in my fingers (particularly the thumbs), I haven’t noticed it for months.

At one point, I suffered from painful and swollen eyes (they just killed me!). It felt as if there were hairs inside my eyeballs trying to get out. These symptoms have largely subsided. I still get some cycles of eye irritation as I continue to heal – these symptoms are exacerbated if I get extra light in my eyes from spending too much time on the computer.

During the 1990s I had an earache, combined with the feeling that I had water stuck in my left ear and discomfort in my cheekbone. This caused me to continually rub under my cheekbone for years. My ears were so uncomfortable that I had to hold them closed when I was in the shower. Now these issues are completely gone. I am even taking water aerobics classes where my head is totally submerged under water.

My writing skills are still somewhat affected, although my ability to spell and write has gotten much better. I no longer find composing even short emails or letters to be a daunting task.

Although I still struggle with occasional insomnia, mild muscle fatigue, and muscle discomfort after exercise, for the most part I bounce around walking and talking every day without thinking about my symptoms at all. I wake up in the morning and stretch my muscles and am surprised to find that I don’t have spasms or pain. I still feel my neurological system isn’t 100% healed as I do get an overwhelmed feeling sometimes and occasionally wake up on the wrong side of the bed, have extra gas, get a stuffy head, and feel some body stiffness. These symptoms are worse if I wear myself out (get over-tired).

In terms of total recovery, I’d say I’m about an 8 on a 10-point scale. If I continue to improve at this pace I think I will be able to ride a horse again in about a year.

Has your light sensitivity improved?

At the start of the MP I was very sensitive to light. Consequently, I was strict about avoiding light and wore my NoIR sunglasses regularly. But recently, I volunteered for three weeks on Wednesday afternoons at a nature preserve. I worked inside, but there were periods of time where I joined other volunteers out on the deck in the sun. Although I expected to get a rise in symptoms due to the sun exposure, afterwards I felt just a bit tired from the new experience of working and being on my feet for hours, but this probably had very little, if anything, to do with the sun. I find that heat from the sun can still flare my symptoms occasionally – so heat from the sun is more of a problem than the light itself.

Now I only wear my sunglasses when I am going on a long distance car ride in the sun, or when it’s very sunny outside. I don’t need to wear them in the supermarket or at the mall anymore where, happily, I find that I can tolerate the light without a problem.

What advice would you give to others about the MP?

…..Do it! It will change your life and it’s the only cure that exists for your chronic disease. Don’t try too hard to analyze what exact bugs you have. We are all “pea soup” and in the end it’s not important. Bottom line is that your immune system is out of balance and at war with something. When you start the treatment, don’t push yourself too hard and try to raise your dose of antibiotics too quickly. Because I had just re-married when I started the MP, I took occasional breaks and ramped my antibiotics slowly. But at the end of the day I still got better. Keeping your immunopathology reaction manageable, so that you can still have a life while on the treatment, is important. Also, I think it’s important to give your body time to recover from the release of toxins that accompanies immunopathology. Use the website and try to read as much as you can. Reach out and email someone for support if you get confused. Don’t expect it to be predictable. The waxing and waning of symptoms is confusing so try to look towards the bigger picture.

What lies ahead?

I plan to enjoy life and travel again, do sports, maybe even ride a horse. I plan to continue to do the MP and recover fully. It might take a year, it might take longer, and I don’t worry anymore about the length of time. I view the process so differently now. Actually, since L-form bacteria have been linked to aging, I feel lucky that I am getting a chance to kill any aging-related L-form pathogens or “CWDs” in the bud. So maybe I’m even slowing down the overall aging process in my body.

Yesterday, by no accident I’m sure, I was talking to someone (turned out to be a scientist) while volunteering at the preserve and found out his young wife is very ill with chronic fatigue, etc. They have visited many doctors without hope or diagnosis. This morning I sent her all the Marshall Protocol research materials and I won’t be surprised when she joins the growing group of those who are healing, thanks to the MP.

Individually we can share our personal stories with people we meet. Do the MP and be an example of healing through the MP. Example is the best form of teaching. I think that we are in the pioneering stage of learning about chronic immune disorders and disease processes thanks to Dr Marshall and all those doing research in this area. It’s a grassroots movement but it’s growing.

Thank you, Dr Marshall, and thanks to all the dedicated Protocol Moderators and Staff for their years of support. Thank you, Amy, for giving us a forum to share our hope.

Interested in doing the Marshall Protocol yourself? Visit curemyth1.org and your questions will be answered free of charge by experienced patient advocates that volunteer for the non-profit organization that runs the treatment. (Th1 is a name currently given to diseases caused by L-form bacteria, hence the name cure my Th1)