Exploring chronic disease
18 Jul 2008
In 1997, this engineer from the Detroit area was diagnosed with sarcoidosis and began Autoimmunity Research Foundation’s Marshall Protocol in order to kill the chronic bacteria causing the disease. But suddenly things took a turn for the worse. A rapidly growing tumor was detected in his bladder and a cancer diagnosis was made. Armed with the knowledge that his bladder cancer was an inflammatory disease likely also caused by chronic bacteria, he decided to use the Marshall Protocol to treat his cancer as well. This allowed him to avoid several standard cancer therapies that may actually harm the immune response. Today his sarcoidosis has largely resolved and he’s been cancer free for over a year. Meet Gene Johnson.
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.
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.
No. The type and size of the tumor strongly suggested that it was already in place when I started the MP.
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.
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.
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.
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.
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.
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.
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.
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.
Amy Proal graduated from Georgetown University in 2005 with a degree in biology. While at Georgetown, she wrote her senior thesis on Chronic Fatigue Syndrome and the Marshall Protocol.