Exploring chronic disease
P.Bear (P.B) is a registered nurse who lives on the Ozark border in Missouri. Symptomatic since childhood, P.B. is feeling dramatically different after three years on Autoimmunity Research Foundation’s Marshall Protocol. He will now take your questions.
I was allergic to many things as a kid and would break out in a rash at the drop of a hat in response to many foods, additives, or topical exposures. I also suffered from many respiratory, sinus, and ear infections. I fell ill with an acute illness accompanied by a bulls-eye type rash in 1963 after playing in the woods along the coast of Connecticut. My doctor at one point suspected scarlet fever or rheumatic fever but eventually decided on mononucleosis. Because of my extraordinary fatigue, the illness ended up keeping me out of nearly a year of school. I almost fainted every time I stood up, had joint pain, and needed up to 18 hours of sleep on many days. A few days I felt so sick I thought I might die. Today this might have been diagnosed as acute stage “Lyme” (I did eventually test positive by one western blot to borrelia in 2002, with many positive bands on the other blot[Igenex]).
I soon found that I could not go down the detergent aisle in the grocery store because I was severely affected by the terrible chemical smells. I slowly recovered function over the years but could never keep up with the other kids in sports since I could never catch my breath or balance well. I became somewhat obese until 8th grade. I also suffered from childhood depression, which continued to plague me much of my life – to an extent I only realized when I felt it lift upon starting the Marshall Protocol.
I was fairly functional in my teen years and did well in school in spite of my need to sleep more than anyone I knew, and despite my inability to spell or have good handwriting. I continued to suffer from frequent sore throats, chronic sinus problems, and ear aches. At age 18, while attending a university, I was diagnosed with mononucleosis once again in association with a sinus infection. I suffered from extreme fatigue and chunks of my scalp hair started to come out. My tonsils and adenoids were removed and after that point I felt sick a little less often, although I remained fairly sensitive to tobacco smoke and many strong chemical scents like perfumes.
In my late 20s I developed Bells’ Palsy and could not move half my face or focus one eye for over a month. I also had an episode where my right hand became paralyzed for over a week. Around this time I also started having intense pain in my face along my trigeminal nerve. The pain would wax and wane. In the early 90′s I started having attacks of facial pain that were the worst pain imaginable and completely incapacitating.
In the late 80s, I started having problems with my prostate, and by the mid 90s, was diagnosed with chronic culture negative prostatitis with hypertrophy. The urologist recommended a microwave procedure to kill cells and reduce the size of the prostate but I declined. I’d suffered from some back pain since I my 20s, but in 1988 it became unbearable – at times and I could no longer run. On occasion I needed to use a cane to get around, and the problem became more frequent. I refused the option of spinal fusion. I also developed problems with my shoulder and the nerves coming out of my cervical and thoracic spine. My hands and feet started to become numb, and at times my feet felt as if they were burning.
I also started to become uncomfortably cold in my extremities; to the point that sometimes I could not sleep. For as long as I can remember I had occasional problems with night sweats. I also had occasional muscle twitching and strong ringing in my ears. I lost much of the hearing in my left ear.
I had frequent nasal and eye allergies and endless sinusitis which would develop into bronchitis and pneumonia every fall. Whenever I missed sleep I would get a sore throat. In 1988 I started to suffer from a type of motion sickness that got worse every year until I could barely even make it to work. I would have to get to work 30 minutes early just to recover from the trip. Eventually I needed so much sleep to recover from exertion that I could no longer maintain full time status as a registered nurse in a surgical intensive care unit. I also started to have daily trouble with blurry vision. My depression continued as it had during childhood.
Before I started the MP I was in pretty bad shape. I felt I had been “rode hard and put away wet.” I was forced to stop working. My spine was in bad shape and I was using a cane. I was suffering from terrible facial pain, and extreme light sensitivity. My fatigue was very strong and I was very depressed. My chemical sensitivities accompanied by a reactive upper airway were worse than ever before, and my blurry vision was occurring sooner every day. My fingers were so numb I would sometime cut them and not realize I was injured until I saw the blood. I would tear uncontrollably if exposed to certain perfumes or fabric softeners. My dizziness was as bad as ever.
After almost three years on the MP, I feel like I am ten years younger in many ways. My energy is returning. My dizziness with driving is now very much improved and my blurry vision is usually totally gone. I have absolutely no facial pain, and my spinal pain is so close to nil that I have been able to start running for the first time in 18 years! My shoulder pain is greatly improved and my range of motion in that arm has returned to normal.
My prostate is much better and I now have good urine flow. My brain seems to work so much better and my life long biologic depression has lifted. I am getting better sensation in my fingers and toes. My chemical sensitivities have improved to the point where I can go out in public and experience many fewer reactions. I have not had an upper airway reaction for a year.
I don’t get faint anymore except on rare occasions when I get too much sun. My eyes are much less sensitive to light now. My sinuses have been clear for three years and I have not had bronchitis or pneumonia for three years. I am amazed to be able to breathe through my nose all the time and not cough up mucus. I have not had a night sweat for over a year. This improvement persists although I am taking, and have taken, the maximum dose of every antibiotic combination used by the MP.
I have been able to stop the medication that my urologist prescribed in order to help urine flow. I have also been able to stop the painkillers Tramadol, Percocet, Toradol, and muscle relaxants for my spinal pain. I have stopped the Valium, Neurontin, and Klonopin that I used to take for my nerve problems and dizziness. I stopped my antidepressant and was also able to stop the Flonase – a steroid nasal spray for chronic sinusitis. I have also been able to stop my eye medications.
I had been reading the website SarcInfo.com (which was a precursor website toMarshall Protocol.com) on occasion for a year. I saw so many parallels between my symptoms of so called chronic “Lyme” and the symptoms generated by the bacterial die-off (called immunopathology or the Jarisch-Herxheimer reaction) described by patients who, at the time, were using the Marshall Protocol to treat sarcoidosis. I finally wondered if a dysregulated “vitamin” D metabolism also takes place in Borreliosis, and had my D panel done by the Quest laboratory out of curiosity.
Lo and behold my 1,25-D was elevated even though I had been religiously staying out of the sun for a few months. Soon after in November 2004, I was able to meet Dr. Marshall at a medical conference on emerging infectious diseases. At that point I decided that I wanted to start the MP myself. I was determined to find someone to prescribe the medications. After two months of begging my “Lyme” doctor for the scripts, I was finally able to start the treatment on February 5th, 2005. I was fortunate enough to be able to attend the Marshall Protocol conference held in Chicago of March 2005 and learned much.
My general practitioner is interested. My neurologist was impressed enough with my progress that he dropped me as a patient since my symptoms had largely resolved and I had successfully weaned off all of the medications he had prescribed. I stopped going to the urologist since my prostate recovered. I have not needed to return to my osteopath, chiropractor or ENT doctor. My allergist is intrigued.
My “Lyme” doctor, the person who finally wrote my scripts for Benicar, is pleased with my progress, but fails to appreciate the tremendous breakthrough that has been made by Dr Marshall in understanding how to actually cure post treatment “Lyme” disease syndrome (PTLDS). He continues to pursue other treatment courses with his other patients – the treatments that failed so miserably for me over the two-year period before I started the MP.
I think the only way he would become convinced of the fact that the MP is the only curative treatment for PTLS would be if he were to do the treatment himself. In that case, he would know what real immunopathology (sometimes called herx) is when compared to the wimpy non-MP herxes that his other patients can tolerate more easily due to the fact that the amount of pathogens that they are actually killing is so minimal.
Instead of understanding that bacteria can shift genetic material through horizontal transfer and hijack the very cells made to destroy them (they are certainly not stagnant forms!), he seems to be stuck on the idea that “Lyme” is a single entity with co-infections. He fails to understand the real importance of controlling exposure to vitamin D and sunlight since “The sun makes so many of his patients feel better” – a reality that is only due to the short-term immunosuppression.
I used to feel quite good in the sun, but over the years I felt the need to cover up more and more because I found that even though in the moment the sun made me feel good, during the day or two following exposure I would feel debilitated. I started to wear the darkest photo-gray sunglasses I could get when I was 18 because due to eye strain and headaches I could not tolerate bright sunlight. At the same time at work, I would always need more light than anyone else to be able to see well enough to do my job safely.
Upon starting the MP I became terribly light sensitive and had to use my darkest pair of NOIRS (a special brand of sunglasses) to watch TV or use the computer. I ended up having to purchase dark glacier glasses and had to wear the darkest NOIRs over them in order to go outside in daylight or to drive. It seemed as if I could see like an owl in very low light conditions – this after a lifetime of relative night blindness. I also found I was very sensitive to heat radiation, even if I was well covered up. If out too long, the heat would knock me down and the following day many of my symptoms were exacerbated.
My light and heat sensitivity have slowly improved and I can now drive on cloudy days with NOIR equivalent sunglasses that block less light, and if sunny, I can usually get by with less protection as well. I no longer find the need to wear a face mask in order to block sun, but I stick to a big hat and gloves with long sleeves and long pants.
The hardest part may have been coming to terms with the fact that it could take so long to kill off enough bugs to get better. I was very impatient to get better, but knew that because of the immunopathology response I could not take the antibiotics any faster than the rate at which I was proceeding. Progress on the MP is slow and gradual and the continuing immunopathology can really be hard on the psyche.
One of the hardest things was the fact that I had to lie down so often at the beginning because I would get very faint if I sat or stood up for too long. I did realize that the faintness was not due to the effects of Benicar but was simply a result of my immune system killing bacteria.
Some might think that having to spend so much time in the dark would be the main problem, but I got used to it and it ceased to seem “dark” since I could see so much more clearly. I was always able to cover up well enough to go out for a short walk every afternoon and at dusk, and kept a north window tinted and open to watch the bird feeders – so I never really felt trapped.
It could be pretty bad at times, but was at it’s worst during my first six months on the treatment. After a year, I felt I was on the upswing. I was extremely faint the first few months, and had to use extreme caution when getting up. During the first year, I was amazed by how just a few minutes of exposure to halogen lights at a store like Lowe’s would make me feel ready to pass out – it was such a profound reaction to bright lights, even with the strongest NOIRs on.
There were also times when I became very short of breath while on one antibiotic, where my body’s response to bacterial death temporarily lowered my red blood count. At times, my fatigue was overwhelming. The first year of the MP was the hardest thing I have done in my life, but it was the only way to get my life back. The traditional “Lyme” approaches had failed, as had the Shoemaker protocol. Mainstream medicine had no effective treatments for multiple chemical sensitivity, and as much as I like living in the woods far from town, I also like the idea of going to a movie or out to dinner.
I was usually able to control my level of immunopatholgy by carefully monitoring the rate at which I increased my antibiotics. I was also very strict about controlling sun and heat exposure and made sure to rest sufficiently.
If you are very symptomatic when you start the MP, you must be prepared for some hard times as you react to the bacterial die-off instigated by the antibiotics and the revival of the
immune system. The increase in symptoms reveals how sick most people are by the time they start the MP. Even if you ramp your antibiotics slowly you are apt to have some profound and perhaps unexpected bacterial die-off reactions. Consequently, you must realize that there is no easy way to proceed through the hardest parts of recovery – but the rewards are well worth it, and I believe most people can stick it out through the hard times.
In my case, when faced with the prospect of starting the MP I had two options – either experience a slow decline in health for the rest of my life, or tough it out but in the end actually reverse my lifelong accumulation of maladies, which before starting the MP had seemed completely unrelated. Who would have thought that so many forms of inflammation and dysfunction could be caused by the exact same pathogenesis – namely infection by L-form bacteria?
Since I seem to be getting younger now I am curious to find out how much of the normal aging process is really just due to the long term effects of chronic stealth bacterial infections. How many of the “normal” declines related to old age can be sidestepped? I will bravely go where no man (or woman) has gone before!
When this California librarian found out she had sarcoidosis, she felt as if a massive freight train was headed her way. Now, thanks to Autoimmunity Research Foundation’s Marshall Protocol not only is she leading a normal life, but her bloodwork has returned to normal and her bone density is headed in the right direction. Sherry Cook will now take your questions.
I became symptomatic little by little over many years. In my 20’s I was diagnosed with “Reynes Syndrome” but in 1988 a funny lump developed on my upper neck. After a biopsy I was diagnosed with Cat scratch fever – an infectious disease thought to involve the intracellular parasite Bartonella. My doctors told me not to worry, but I found it quite odd that I was not offered any treatment options. Insomnia and headaches grew more common, and the only way I could make myself feel good was by swimming outside on my lunch hour. If I didn’t swim, I was literally in a torpor of brain fog.
This string of symptoms increased and my energy level continued to decline. The fibroids in my uterus led to a partial hysterectomy in 2002, a very stressful event on the body. I experienced some Restless Leg Syndrome and chronic sinusitis. Finally, after numerous tests, the doctors performed a Gallium scan which showed that I had sarcoidosis. I recall his exact words: “I think we’re onto something: you have SARCOIDOSIS” as though I had won a prize. In truth, he was simply happy to have come up with a diagnosis and then referred me to yet another doctor (similar to what happened to MP patient Julia Greer). The doctor referrals are endless and very frustrating.
I’m a technical librarian, and I immediately started a literature search for sarcoidosis. Suddenly I realized there was a massive freight train coming towards me. Sarcoidosis is a deadly disease, and I was very alarmed. I went to Stanford University Medical Library looking for articles with sarcoidosis in the title. I found Dr. Trevor Marshall’s article “Sarcoidosis Succumbs to Antibiotics” but was so brain-fogged at the time that the information didn’t immediately sink in. But several days later – and I remember the exact day, January 4th 2005, I googled the words “sarcoidosis” and “cure.” The website sarcinfo.com, which was the predecessor website to what is now MarshallProtocol.com popped up. Eureka!
Once on sarcinfo.com I started to read, and read, and read. I read for two weeks straight. The science and information on the board dominated my thinking and also fascinated me. It was as if there was a neon light in my brain flashing Marshall Protocol! Marshall Protocol! The stories of other patients recovering were both gripping and fascinating. Many of them provided great hope, especially when I started to read that people’s blood work, laboratory tests and X-Rays were actually improving. I believe in the power of information. When information is backed up by openly published medical literature and human experience detailing remarkable case histories, my doubts are removed.
Luckily there was a general practitioner in my area who already had one patient on the MP and she was glad to take me on as a patient. I’m lucky – she’s supportive and open-minded.
It took a while before I experienced immunopathology – the temporary rise in symptoms that occurs when the body deals with the consequences of dying bacteria. This was probably because my level of 25-D was too high during that period of time. Since 25-D blocks the activity of the receptor that controls the ability of the innate immune system to function correctly, I couldn’t effectively kill bacteria until my level came down. Unfortunately, during that time, I was eating organic hot dogs and didn’t realize that the fat in the hot dogs was high in vitamin D. When I removed the hot dogs from my diet I finally started to react to the antibiotics.
One of the first signs that the antibiotics were kicking in was that I experienced a sneeze of massive proportions. It was such a violent explosion that I thought it might have injured my neck muscles. After that I started to have a runny nose, and the insomnia and other symptoms temporarily returned. However even after that point, my immunopathology was relatively tame and easy to handle.
My headaches diasapeared completely within days of starting Benicar. My insomnia and restless leg syndrome have essentially resolved; last night I slept a solid 7 hours. Starting at a young age I also had a tremor in my hands that had produced stress and shame for many years. I was told it was a “familial tremor” as my Grandfather suffered from the same ailment. But now, my hands are fairly steady. Just a few days ago my friend commented on the absence of the tremor. “You’re hands used to be a mess!” she said, “Now they’re not shaking anymore!”
I had an MRI done six months into the MP which, even at that early point, showed overall improvement in my lungs; and I emphasize those were the exact words of the reporting physician written on the X-Ray report. Since that time I have not had another MRI done, but I plan to soon, and expect my lungs to be quite healthy. Also encouraging is that my liver enzymes, which were out of range before the MP, have returned to normal.
I am also delighted with how the MP has affected my bone density. I’ve had three dexa scans done over the last seven years – in 2001, 2004, and 2007. All tests were done at the same facility, on the same machine. Between 2001-2004, my bone loss was significant. However between 2004-2007, during the time that I’ve been on the MP, the rate of bone loss slowed down significantly. I feel my bone loss will continue to slow and probably reverse. After all, it takes 10 years for the bones to completely rebuild, so this process is like turning around a 400 foot freighter: it takes some time and space, but with careful planning, it works!
I’m also able to exercise. Just last weekend I went on a 29-mile bike ride. Riding bicycles again is a great joy.
Yes. I had to put up heavy dark curtains in my house and I would wait until it became dark to go outside. But now I am much less light sensitive although I still cover up when I go outside.
My friends were not very open-minded about the treatment, and family expressed some doubts but were respectful. Some of them just express disbelief at the idea that the MP can work. It’s tough, especially when I realize that they also show signs of Th1 disease. Long ago they probably all concluded I’m eccentric, but I have hope for the future. Persistance is omnipotent!
Sit down and read the progress reports of patients who have symptoms similar to yours for at least a week or two. Then go with your gut, follow your instincts. If mainstream medicine hasn’t worked for you, there is very little risk in the MP. Recognize that the openly published research about the MP is also backed up by positive results obtained though experimentation.
My whole life has been given back to me, and I am excited about making our point to the “powers that be” in the medical establishment. Everything is going our way, and it’s only a matter of time until the NIH cannot ignore us. The power of the Internet to get the word out is tremendous. And it goes without saying that I am indeed very grateful to the board and staff of the Autoimmunity Research Foundation and of course Professor Marshall for giving me back my health.
While alone in a foreign country, this mom from Houston Texas began to suffer from an array of debilitating symptoms. Soon, she was diagnosed with sarcoidosis. Despite the fact that she had to care for three young children, she successfully started Autoimmunity Research Foundation’s Marshall Protocol and today, about two years later, is active once again. Meet Lisa Shanahan.
It all happened very suddenly. Before becoming symptomatic, I considered myself very healthy. I was even preparing to run my second half marathon after completing two full marathons. My husband and I had decided to adopt a baby from Guatemala. We went down to Guatemala to see our son for the very first time. The next morning I woke up and my face was swollen. I didn’t know what to make of it. At the same time, two large lumps appeared on my arm, at my inner elbow area. Upon returning to the US that next week, I saw two different doctors that informed me that I had allergies and not to worry, so I went on with my usual routine. They gave me a small steroid dose pack to decrease the swelling.
A few weeks later I returned to Guatemala in order to finish the process of adopting our son. Since the process takes time, I chose to go live in Guatemala with my twin daughters, who at the time were 3 1/2 years old, so we could have our son live with us instead of in foster care. During that time I was completely on my own. I started to become more symptomatic. My face began to swell again, especially around the area of the parotid gland (near the jowels). Then, I started to have problems with my eyes My vision became fuzzy and I saw what seemed like blind spots. The loss of my vision was very scary. “What is wrong with me?” I thought. I saw three different doctors in Guatemala, none of whom could give me an answer.
One day I walked right off the street into a doctor’s office and asked him to take a biopsy of one of the lumps on my arm. I got the results of the biopsy, but since they were in Spanish and my doctor was on vacation it could not be translated, so I just stuck the papers in my suitcase. When I finally signed the adoption papers I could barely see. By then, not only was my vision affected, but my eyes felt extremely painful, hot, and swollen. I went straight from the embassy where I signed the papers to an eye doctor in Guatemala City. He diagnosed me with uveitus and explained the disease. He gave me a steroid eye drop and sent me home. Soon after that my kids and I went back home to the US.
Immediately upon our return to the US I saw several doctors. The nurse at the first office translated the results of the biopsy that had been taken in Guatemala. The verdict: sarcoidosis. But my doctor refused to accept the results of a biopsy performed in Guatemala and insisted that the procedure be repeated. Two weeks later the results from the new biopsy came back with the same diagnosis. I was also re-diagnosed with the eye disease uveitis by another Opthamologist who explained that uveitis is common in sarcoidosis patients (I now realize that is because both diseases are the result of infection by L-form bacteria).
Sarcoidosis sounded like a death threat (and was, because it’s a deadly disease.) I couldn’t even read or spell the word sarcoidosis, yet I couldn’t look it up online because I still could barely see. My only source of“relief” was that the disease was not in my lungs. I was informed that the kind of sarcoidosis I had (called Heerfordt’s Syndrome) often doesn’t end up affecting the lungs, at least for a long time.
My doctors performed test after test. I went to over 50 doctor appointments that first year. Finally, they informed me that there was basically nothing I could do to get better, and that I would probably never recover. Maybe I would go into spontaneous remission (which I now realize does NOT happen), and even so, my parotid glands could be swollen for the rest of my life. They did put me on the corticosteroid medication prednisone, as well as the medication methotrexate, and more steroid eye drops. The temporary immune suppression from the steroid eye drops and the prednisone made my symptoms improve for short periods of time but the uveitis would always come back as I tried to wean off the eye drops. The only way I could make it go away again was to resume steroid eye drops – something that I really didn’t want to do.
A friend of mine knew about the MP and sent me an email about the treatment. Meg Mangin, one of the nurse moderators also knew my friend. So, through this grapevine I was able to get Meg’s number and talk to her on the phone about the MP. Her insights were very encouraging and she referred me to the MP website where I could read and learn more about the details of the treatment.
To be honest, when I sat down and read about exactly what the MP entailed, I literally started to cry. I had no idea how I would be able to manage my immunopathology and correctly adhere to the light restrictions when I had to take care of three young children. The MP guidelines also state that patients must stop taking all supplements but I was a heavy supplement user. In fact, it’s my livelihood – I am an independent distributor for a health and nutrition company. I really thought that if I started the MP I would never make it. But the only other option was to stay on steroids, and I knew that either the steroids or the illness would eventually kill me.
I pulled myself together and decided that I would just have to make the MP work, not only for me, but for my family. I figured that if I didn’t try it, I would never know whether or not it was possible to succeed. I stopped all my supplements and I also totally weaned off all my medications except for a few eye drops. Everything that the MP guidelines said to do, I did perfectly. My doctor wouldn’t put me on the MP so I said, “you’re fired!” and proceeded to find one who would.
I wrote a letter to all my family and friends basically telling them that I was entering a state of hybernation and quitting my activities. I was very serious about outlining how the antibiotics might affect me and cause my symptoms to flare. But I also included the best-case scenario for how taking these measure would help me – I would slowly come back to life and then become completely better.
At about 6 months into the treatment I realized that perhaps the hybernation wasn’t completely necessary and that I should try to re-enter life. I found that I could hold up just fine. Of course, there were occasional setbacks, especially if I got too much sun. One time a granuloma appeared on my eye, but I knew it was just a result of my immunopatholgy and, as expected, it went away.
One thing really surprised me – after starting the MP I never had signs of uveitis again. My inflammation went away, my vision cleared up immediately. I was able to wean off all my steroid eye drops. At the moment I only use up to one eye drop a day. But it’s not a steroid drop and I only need it on days that I am exposed to a lot of sun or bright lights.
About a 1 1/2 years into the treatment I was able to start wearing contact lenses again – something I had been unable to do since I developed my sarcoidosis symptoms. It was great! I was able to wear the smaller more stylish NoIRs (sunglasses).
After emerging from hybernation I decided that I was going to try to live as normal a life as possible while still on the MP. So I get a reasonable amount of sunlight which sometimes flares my symptoms. After all, I live in sunny Houston Texas. So it’s hard to tell exactly how recovered I am – probably around 80%? I lead a pretty normal life and know that I am on my way to a full recovery.
The face swelling and lumps have completely disappeared, and as I said the before, uveitis is no longer an issue. Mentally, I’m a totally different person than I was 3 ½ years ago. I joke that I’m the cheapest date ever because no matter what I do I have a blast. After conquering my illness, every other source of worry seems pretty trivial. If I’m running behind schedule I just think, “well, if I’m late, I’m late.”
I’m always running around and doing activities with my kids – I watch them play sports, I take them everywhere. All my kids celebrated birthdays in July and we had wonderful indoor roller-skating and ice-skating parties. During my first year on the MP, we actually had the kid’s birthday party at an outdoor Cowboy Ranch that had a nice covered riding area. Recently, I was taking a Spanish class twice a week since one of my life goals is to be fluent in Spanish and I had to put it on hold while I was sick. Most importantly we have started going back to church as a family and we have started going to Sunday school classes. I just wear a hat in church and ask them to dim the lights in the Sunday school class. I’ve also started to work more again, I work about 10 hours a week at home, right around my family!
We moved to a more wooded area to support my new lifestyle. With all the tree shade I am able to do almost EVERYTHING! I just bought new bikes for me and the whole family, so that we can bike through the forest near out house. I go on walk/runs every day alone or with the kids. I’ve also started doing yoga again which makes me feel good both physically and mentally. I’m even lifting light weights at the gym on a regular basis.
Looking back, I realize that all my life I’m been sensitive to sunlight. I was a heavy sunglass wearer. When I started the MP the light sensitivity increased, to the point where I even had to change the lighting throughout the house and in my garage by putting in lower watt bulbs. But it’s gotten better. At this point very bright fluorescent lights still bother me and when I’m in the bright sun I still wear sunglasses. As far as clothes go, in the sun I can get away with wearing longer pants, a light shirt over my t-shirts and a cute little hat. I go outside when it’s sunny as long as there is a covering or shelter that I can stand under. I think that the heat from the sun actually flares my symptoms more than the light itself (heat from the sun also causes vitamin D production in the skin).
As I stated before, we recently moved to a very wooded area so that it’s easier for me to go outside during the day. There are many shady wooded parks by our house where I can take the kids. In many ways, I am a different person during the winter and during the summer. During the winter, I don’t turn down any sort of activity. In the summer I am more careful about my plans because of the light.
My doctor is pleased about my progress. He believed the MP would work from the beginning! He lets me lead the way, as far as making changes in my meds or adding a bit of sun or trying something new, but gives tons of great advice when necessary. He is the person who most encourages me when I need it.
As mothers, we do so much for our children. We are essentially advocates for them – if something were to happen to them we would pursue the issue over and over again looking for a solution. But often, for some reason, we don’t act this same way when it comes to ourselves. But it’s important to realize that you can only be the best parent you can be if you are as healthy as possible. So you need to become an advocate for yourself. Do whatever you can to get better because you need to be there for your children. If doctors say they can’t help you then keep looking, don’t stop. If you can’t find an MP doctor in your area then drive a long distance to reach one or even fly to their office. Getting your health back is that important. I have to drive over an hour each way to visit my MP doctor but it’s worth it. As a matter of fact, I have put him in charge of the health of all three of my kids, so I am putting a lot of miles on the car to see him.
When it comes to the MP, you are in charge of your own health and you can make it work. When I started the MP, I paid one of the school teachers to drive my kids to school. I did not know her well, but had faith that it was the best decision. I went from being an overprotective Mom to someone who had to put faith in a person I didn’t know. I found the driver by calling our school, explaining my situation, and asking for help. And if I hadn’t been able to find someone to drive the kids, I would have pulled them out of school until I got well enough to drive them again. Staying on prednisone and wasting away was just not an option. Eventually I also hired a nanny to help out around the house.
Of course there were times when it was tough because I couldn’t participate in family activities. At first, I had to watch my husband take the kids to the zoo while I stayed at home. But then we got creative and thought up activities where I could participate. For example, we set up our tent in the backyard and went “camping.” We even made a big fire pit where we could roast marshmallows. It was fun! We did the best with whatever we had. There are lots of indoor things to do if you just look around and plan well.
I was honest. I said, “Mommy is sick, but she is going to get better.” It was easy. They accepted any changes that had to be made. They just wanted me to get better.
I wouldn’t say I was ever skeptical about the MP but sometimes I had doubts, – particularly about how long the treatment would take. When I attended the conference I met so many other people, many of them whom had been much sicker than me and were leading normal lives again. From that point on, I was confident that I could recover at the pace that I had mapped out when I started the treatment – basically seeing improvement every six months and feeling normal again around the 3-year mark. So far, I’m right on track.
I also attended the conference six months into the MP, right around the time when I was thinking about emerging from my state of hybernation. At the conference, I saw that many people experiencing immunopathology were still leading fairly normal lives. I saw that others were able to adapt the guidelines to suit their own lifestyles.
This helped me realize that it was ok to experiment. If I pushed myself too hard it wasn’t going to kill me. I needed to explore what level of activity I could tolerate while on the MP, not just assume that I couldn’t do anything. I realized that I was the only one who could figure out what I was capable of handling so it was ok to test myself.
Many people have asked me that. My answer is that I’ll never know. It’s possible that I am where I am today because I took such extreme measures at the start. But I tend to think that I probably didn’t have to be so hard on myself.
I want to run again, definitely 5K and 10K races, maybe one more marathon, but most importantly I want to run races with my children. I want to be physically fit with them. I’m already getting there. We just signed up for our first Jingle Bell Family Walk! It is 2 or 3 miles and since it is during a cooler time of year (December), I should be fine as long as I wear my hat, NoIRs, and long sleeves!
I’d also like to go on an annual beach vacation with my family and not have to worry about the sun. Not that I would seek the sun, but I look forward to reaching the point where I don’t have to cover up as much. I also want to raise my kids to realize what I have learned – that they are in charge of their own health and happiness and need to take action on their own if something happens. But when it comes down to it, I just want to lead a normal life with my family. Happily, I am almost there.
After being diagnosed with the deadly disease sarcoidosis, he felt as if his entire body was shutting down. But after several years on Autoimmunity Research Foundation’s Marshall Protocol this Australian geologist is feeling great and living life to the fullest. Meet Mirek Wozga.
In 2001, I woke up and went outside. For some reason I was extremely cold. Upon returning inside, I realized that I was running a low-grade fever. Several weeks later it was still there. Then, I started to have terrible night sweats, insomnia and severe gastrointestinal pain. I was exhausted and brain-fogged. Because my body was so burnt out, I began to lose weight – almost 15 kilos, dropping down to 65 kilos. Upon waking up every morning, I felt as if someone had beaten me up – literally, not a single muscle wasn’t aching. It was like I’d been to the gym the night before and completely pushed myself over the top. In reality, I lost the ability to exercise.
I saw many general practitioners, none of whom were able to give me a diagnosis. Finally, I saw an expert, who after a series of tests discovered that I had enlarged hilar lymph nodes. An MRI also revealed a substantial number of granulomas in my lungs. I was diagnosed with sarcoidosis.
I was not yet aware of the MP so my doctor started me on a six-month course of prednisone. It suppressed my immune system to the point where my lungs cleared and my granulomas went away. But six months after stopping prednisone, most of my symptoms returned with a vengeance. My lungs remained clear, however this time my fatigue, abdomen and gastrointestinal symptoms were worse than ever. I could barely tolerate food. It felt like my whole system was just shutting down. I tried prednisone again, but second time around it did nothing. Instead, I developed osteoporosis, which is one of the many side effects of the drug.
“Enough is enough!” I thought after my negative experience with prednisone. I turned to the Internet to learn about other treatment options. After scrolling through thousands of web pages about sarcoidosis, I stumbled upon two of Dr. Marshall’s papers. The arguments he put forth seemed extremely plausible. In fact, what I read seemed like common sense. Soon, I had the levels of my two vitamin D metabolites tested. Part of Dr. Marshall’s model includes the fact that people infected with L-form bacteria often have low levels of the precursor form of vitamin D (called 25-D), and high levels of the active form of vitamin D (called 1,25-D). Bloodwork revealed that my vitamin D levels were indeed dysregulated in exactly this fashion. It was then that my trust in Dr. Marshall’s work really took hold. I took the plunge and decided to start the MP. At that point, the treatment was very new and untested. Yet in my eyes, and those of my family, I had nothing to lose.
I started the MP in the early days, when many of the guidelines were still being developed. At the time, Benicar, the medication that patients on the MP use to activate the innate immune system, wasn’t available in Australia. So it was suggested that I substitute another medication from the same class of drugs (ARBs). So I tried taking the antibiotics with a different ARB called Irbesartan. Well, it didn’t work at all. Not surprisingly, today, Dr. Marshall’s molecular modeling research has confirmed that Benicar is the only ARB that will work for patients on the MP.
I started to look for a way to obtain Benicar, but in the meantime, I took the MP antibiotics on their own. The immunopathology from just 25 mg of minocycline hit me like a brick. I finally worked my way up to 100 mg but the immunopathology was still hard to tolerate. Luckily, at that point, I found a way to import Benicar to Australia from overseas. Once I started Benicar, the anti-inflammatory properties of the drug made my immunopathology much easier to tolerate, allowing me to ramp up my antibiotics in a smooth manner.
At the time I started the MP, the phase 2/3 guidelines had not yet been developed. When phase two was finally created (I was about six months into the treatment), a new antibiotic was introduced that really caused my immunopathology to kick in. It was almost like having a rocket under me! Since the reaction was such a positive reflection of the fact that I was killing bacteria, I began to see a light at the end of the tunnel.
It took me a while to get my level of 25-D down into the range in which maximum bacterial killing occurs (I should note that once the level did drop it was fairly easy to maintain.) I feel that the drop, which occurred about 12 months into the treatment, was a major turning point in my recovery. After that point, the exhaustion, nights sweats and gastrointestinal pain began to dissipate. Any doubts I had about the MP faded. I was confident I would recover.
Sometimes when I look back at comments I wrote in my early progress reports I think, “Gee, what was I on?” At the time I didn’t even realize how brain-fogged I was, but I remember the sensation of feeling completely phased out. One person talking was sometimes too much to handle, and I often didn’t comprehend or actually process what I was being told. This type of immunopathology came and went. Now it has completely resolved.
I feel very good! I would say 95-100% recovered. Some days I’m more tired than others, but I have a feeling the occasional tiredness is just a result of living a normal busy life. My abdominal/gastrointestinal symptoms are miniscule compared to 2001, and everything else – the night sweats, the fever, the insomnia, have all resolved completely. A recent lung function test showed that my lung quality is at 105% compared to others in my age group. I get regular x-rays taken, and all have revealed that there is no sign of any granulomas in my lungs. They are completely clear, and I strongly believe that the MP stopped any possible relapse. I’m exercising again – going on walks and spending time with the family. I have also returned to my pre-sarcoid weight.
Symptoms aside, I think the toughest part might have been watching my family deal with the effects of my illness. I have a young daughter and it was hard to watch her become accustomed to frequently seeing her Dad in bed. As a family, we were also fond of going to the beach. But we successfully worked around these issues. We still went to the beach, but I stayed in the shade and only ventured out at dusk. The beach is actually very beautiful at dusk. During the earlier stages of the treatment where I was quite sensitive to light, I was still able to travel, I just made sure to cover up with thick layers.
As a child and young adult I was very active and loved the beach. I never noticed any problems with the sun at that point. But as soon as I started to become symptomatic I found sun and bright lights difficult to tolerate. When I first started the MP the sun was taboo. I had to wear thick layers when outside. But over time, my sensitivity to light has improved a great deal. The sun doesn’t affect me anymore, although I still wear a hat and dark glasses when I go outside, just to be on the safe side. We have a pool and sometimes I’ll swim for several minutes in the sun with no adverse reaction. I’m sure I can tolerate much more sun than that – I just haven’t had the desire to test my limits.
Last March, I was feeling quite good so I decided to stop both the antibiotics and Benicar. However, in the weeks that followed, I still noticed some symptoms, possibly because I was no longer reaping the benefits of Benicar’s anti-inflammatory properties. I decided to re-start phase 3 and interestingly am experiencing some very minor immunopathology from antibiotic combinations that had previously stopped generating bacterial killing. Clearly, and in hindsight, it was wrong to stop the MP at that point, as I still had bacteria to kill. My experience goes to show that it may be helpful to do a second round of each antibiotic combination in order to fully eliminate the entire bacterial load.
Read all the information available about the treatment before seeing your doctor because you may need to help him/her understand the treatment. The MP is a long process, but be patient because the rewards are worth it. There’s also no point in trying to rush through the healing process. You’ll just put your body under too much stress, which could hurt your progress.
Well, I’ll get to watch my children grow up. Around 2001 when I was diagnosed with sarcoidosis I really didn’t know how much time I had left – it was very possible that I could have died. Now, there’s no looking back. I’m making up for lost time. One of the side effects of being sick for so long is that now I am driven to work harder than ever. I’m traveling a lot for work and pouring as much time as possible into my family and activities. I don’t have much spare time. But it’s all good – basically I’m just enjoying life.
This cyclist had to put away his bike in 2002 due to CFS. But today, this New York City resident, who has also conquered his depression, is psyched to be more active again thanks to Autoimmunity Research Foundation’s Marshall Protocol. Paul Albert will now take your questions.
Starting in college, I rowed crew. I was not much of a technical rower, but I got pretty good at pulling the oar hard. Crew was just what I needed at the stage in my life.
When I graduated from school, I went on to do triathlons, which include swimming, biking, and running. One of the last biathlons (which is just running and biking) I did, I went from 30th place or so after the run to third place after the bike. It occurred to me then that I could be pretty good on the bike.
In 2001, I blew out my knee a second time, and that kind of sealed it: I would race my bike exclusively. I started to train in earnest, putting in as many miles as I could. My favorite event was the time trial. I was pretty good at putting in a consistent effort and staying just below my red line for a long period of time. One time, I got a lactate tolerance test (LTT) and my coach, who is now my friend, said that my LTT was the highest he’d ever seen. Yup, I’m really good at suffering.
I also took great joy in training, the long rides through the leafy countryside, seeing a doe and a fawn on a misty morning, the flipping off of RV drivers trying to run me off the road. I also liked the camaraderie with teammates. At one point, I had hoped to go pro.
Even so, I kept on hitting an upper limit in my training volume. I would ramp up my miles slowly, but I just could not ride much more than 200 miles every week. That may sound like a lot, but many of my training partners were able to do that without a problem. I would hit 250 or 300 one week, and then I would just have to take the next week almost completely off.
Once I identified this as a problem, I went through a stage where I tried out dozens upon dozens of different supplements. Naturally, none of them helped, and in the process I wasted a lot of money. You’re welcome, pointless supplement companies!
Also, I noticed that if I got too much light– a few hours worth of summer sunshine– I would go for a couple days without sleep. Then I would inevitably crash. Light-induced insomnia, as was the case with my other symptoms, only became worse when I became seriously ill.
That’s true. In fact, a number of members of my family have. My grandma, for one, had electroconvulsive therapy and spent at least a couple years convalescing after bouts of serious depression. I’ve heard that she apologized to one of my cousins for passing on “her sickness.”
I was never quite so bad as my grandma, but I did have first-hand knowledge of all those lame cliches that come out of depressed people’s mouths: I feel disconnected from others; I feel like I lost something important but I don’t know what it is. Blah blah blah.
I would routinely cry for no real good reason. I vividly remember coming home on the 1/9 subway and just weeping. Why? I don’t know! The woman across the way asked, “Are you okay?” Yup, I’m just being pathetic, don’t mind me.
The sadness would come and go. Sometimes I could beat it back, if only for a while with heavy exercise, but most of the time it was just something I had to endure.
As a fairly proactive guy, I was always on the lookout for ways to beat my depression. Over the last dozen years, I’ve gone to two psychiatrists and two psychologists. Generally speaking, I had a lot of faith in medicine as well as psychology, and was sure modern medicine had solved depression. I just had to find what mistake in assumption I was making or what pill I needed to be taking. I came away dissatisfied. I learned that “mood brighteners” didn’t work and that the more I talked about sadness, the worse I felt. (I should say that, later on, after I started the MP, the ability to blow off steam with a licensed social worker who really seemed to “get” chronic disease was a great help.)
Maybe I would have been better off doing something else, but I decided I would approach this problem from as many possible angles as I could and began to read widely. In oversized notebooks, I wrote down notes from books on everything from food to Buddhism. I even defiled myself by reading a number of pop psychology books.
One thing I should make clear is that while the onset of the most severe CFS symptoms happened all at once, I had long been struggling with most of them including food sensitivities, depression, insomnia, etc. Especially depression.
It was the Fall of 2002, and the conclusion of a grueling multi-stage bike race. My body was completely wrecked. I felt like something awful had happened in my body, like I was completely and irreparably broken. Words cannot describe how hungry I was. I must have gobbled down 5,000 calories in three hours. That night and every night thereafter, my quality of sleep vanished, and much as I tried I was not able to go for any kind of ride without my body protesting. Also, I suddenly felt very ill whenever I ate fruits and vegetables. This sounds like a joke, but I would literally cry 2-3 hours after eating a vegetarian burrito (or some cherry tomatoes or a small piece of vitamin C, etc.) and then I would have to take a nap.
It didn’t take long before I began to eat lots and lots of cookies, muffins, and bagels, three to five a day. I simply could not eat enough sweets or other carbs. Also, I would eat sometimes up to five servings a day of Mac and Cheese. It was all I could tolerate during the two years or so before I learned about the MP.
My blood pressure was very low. 80/50 was a common result. Moving from a seated to a standing position was an undertaking. If I stood upright too fast my vision would go dim, and I would have to grab onto a wall and wait for the blood to return to my head.
My sleep was a train wreck. I just could not go to sleep until 4 or 5 am. If I did go to bed at say 11 pm, my eyes would invariably shoot open at 3 am, and I would spend the rest of the night trying to get back to sleep. When I first became ill, I worked at a public library and had to be to work at 9 am. That was rough. One time, I was simply so tired that I found an out of the way room and took a nap on the hardwood floor. I did find a better job: evening supervisor at a quiet academic library. Sometimes though, it was even a struggle to get up in time for my 2 pm shift.
It’s not like I had anything else going on. I didn’t go out. I didn’t have any friends. I didn’t do anything on the weekends. In fact, I had no desire for any of that. All I could do was survive. My free time was all spent at home, and the sum of my time at home was spent resting either on the couch or in bed.
The onset of CFS most certainly did not help my depression. I was sadder than ever. My pillowcase became completely salt-stained because of all the crying. Pathetic.
And here’s the worst part: I still did not know what I had.
It’s a common war story among Chronic Fatigue Syndrome patients. Most of us are just happy to get a diagnosis. It took me a year and visits to upwards of ten doctors. It’s amazing to me that some doctors refuse to acknowledge that CFS is a real somatic illness. I found that as a group, doctors are way too quick to say, “I can’t measure this illness, so you simply must be imagining this.” For about a year, I went from doctor to doctor until, finally, one doctor said, “You have CFS.”
Of course, once you do get that diagnosis, what becomes of it? I’ll say this: outside of the MP, what real treatments are there? I tried many and, naturally, none of them worked. It was very disheartening injecting myself with some kind of porcine liver extract or vitamin B12 or magnesium sulfate and knowing it wouldn’t work, but what else could I have done?
In July of 2004, the very day it was first published, I read an interview of Dr. Marshall’s on Immunesupport.com. That day, I called Dr. Marshall at his home and asked if he thought the MP would really work for CFS. His words still haunt me: “You should read the website.” The next day I made an appointment with my doctor and got my first MP scripts filled.
Honestly, I expected the MP not to work, and I was skeptical until near the end. I expected it to have the same effect as chiropractic, NAET, kutapressin, hepapressin, vitamin injections, Chinese medicine, and any number of other failed treatments– which is to say, none. On the other hand, I did rather like the fact that Dr. Marshall did his thesis and post-doctoral work in biomedicine and that his treatment was originally created to save his own skin. See, only a medical doctor would tell me, as I was told in 2003, that I was “trying too hard” and needed to take less bike rides. And only a medical doctor would tell me that my sensitivities to food were because I was depressed. The fact that some mainstream researchers found the whole notion of cell wall deficient bacteria to be dubious was a mark in the treatment’s favor.
I really had been on the lookout for crazy but plausible ideas. In the history of scientific breakthroughs, that has happened all the time. The father of genetics was a monk, and if you don’t mind the somewhat grand comparison, the theory of relativity came from a patent clerk.
Within 48 hours of first reading that interview, I was taking my first Benicar, and I felt amazing, a feeling I later learned was due to Benicar’s potent anti-inflammatory effect. The immunopathology — now that was a different matter.
Besides an aversion to fruits and vegetables, I lost a lot of weight, some 20+ pounds in my first year on the MP. It was really kind of shocking to one day stop being hungry. In retrospect though, I shouldn’t have been surprised given how anorexia and bulimia are themselves infections, just other types of illnesses caused by cell wall deficient bacteria. I also passed out a couple times.
I never thought my mind was not my own. It’s just that sometimes thinking poses certain challenges.
One day I was doing my laundry. I went down to our building’s laundry room to retrieve my clothes from the dryer. When it came time to put my clothes in my laundry basket and bring them up, I couldn’t find the laundry basket. Where was it? @#%#$%! Someone has stolen my laundry basket! Ooh, I was mad. I taped a note to the laundry door demanding the immediate return of my basket. A week later, in the corner of my bedroom sat my basket. I don’t know how a person can manage to bring a laundry basket back to his room (apparently, I brought it up after the wash cycle) only to forget about it– let alone not see it for half a week, but, congratulations to me. I don’t know what is the applicable awards ceremony, but that golden donkey is mine!
I had an argument with my sister over a game of Boggle. I thought that “it’s” wasn’t a word, which was ridiculous, because it’s is a contraction, which as everyone else knows, is a kind of word.
Weeks earlier, our library’s staff was moving microfilm from old to new cabinets, and I was put in charge. Given that we had thousands of reels, it was quite an ordeal. At any one time, up to four of us were involved, and I had to say which reels from which box went where. Just a bit of simple arithmetic really. Not once– but on four different occasions (!), I screwed it up each time on account of my once unassailable command of basic arithmetic.
As a rule, immunopathology entails revisiting some of your worst symptoms. For me, that was depression. I had some periods during the treatment where I was very, very sad and really struggled to think clearly. At regular intervals I would effectively freak out saying, “This treatment is not working. Why am I doing this?” Ironically, if you know anything about the MP, you know this isexactly how it works– your worst symptoms are brought into sharpest relief when you’re making the most progress. If I were the least bit objective, I would have seen that these thoughts were clearly a product of my immunopathology. My fellow MP patients and the moderators were very helpful in this regard. “You are experiencing immunopathology,” they said. “Just be patient.”
I ran into a brick wall trying to convince my weasely first insurance company to fund the full dose of Benicar. I can’t imagine an organization better conceived to deny me my right to get medical treatment. They would routinely lie, lose correspondence, and claim ignorance. Always the ignorance. I was fortunate in that I had enough money on hand to pay for the Benicar out of pocket, but it’s something that no supposedly fully insured patient should ever have to endure. Fortunately, I solved that problem when I changed jobs.
I’ll say this. I did my job and I did it well. I did everything I could to compensate for the fact that it was harder to think and even harder to be pleasant. Sometimes I would roll in, and my dear co-worker would take one look at me and say, “Oh boy, here we go. I know not to talk to you today!” I learned that sometimes it’s just not a good idea to speak.
I won’t lie though. Some days were pretty grisly: the weepiness, the clouded judgment, the inability to think of… words. It was during those days that I was just in survival mode. It helped to know that however bad I felt those bacteria were feeling worse, and by worse I mean dead.
Unlike some of my fellow patients, I didn’t have to restrict light quite so much. I wore glasses for a while at work. Honestly, I was a bit anxious about wearing glasses indoors, but, soon enough, it occurred to me that being on this cutting-edge treatment was something to be proud of. This past summer, I gave up my glasses and happily found that I could leave them off without experiencing light-induced insomnia.
In many respects, you’re talking to someone who is doing better than ever. I can’t say I don’t have any more sad thoughts. After all, life will always have its ups and down. But what is different about me now is that the negative thoughts and the negative observations have an all but negligible half-life. I never asked for perma-bliss. All I want is, for when bad things happen, to have a measured reaction, and that has happened. Thus far, I think that is the best part about my recovery.
These days, I eat a range of foods including fruits and vegetables with nary a side effect. You’d be amazed at how delectable peaches and nectarines, avocados and spinach can become after going years without. I continue to really limit my intake of pasta, cereal, and breads. No more three bowls of cereal a day!
The sleep has been really good. To bed at 11:30 and up at 8. I might wake up during the night once, just long enough to check the time before I fall back asleep.
Also, I have a great new job. I’m working on lots of fun projects. It is somewhat demanding, but I definitely have the energy for it. I play racquetball with my buddy on the weekends. I can spend lots of time in the sun. I’m more social at work and in general, I’m not put off by people. I have a wonderful girlfriend, who has an even more positive attitude than I do, which, actually, is the least bit annoying, but I can live with it.
I take it back. The best part about my recovery is the ability to once again ride the bike. I had actually thought about selling my two racing bikes, which would have been the saddest thing ever, but I didn’t. My Dad told me, “Don’t do it. You will get better.” That meant a lot to me.
It was about a month ago when it first occurred to me, “Hey I feel well enough to go for a bike ride.” Since then, I’ve gone for about a dozen rides (see figure) including a trip out to Nyack, a ride of nearly three hours and 40+ miles, my longest ride in five years. My heart rate was at 140 beats per minute for much of the ride. Even with all that work, I slept shockingly well, certainly well enough to go for 15 miles the next day.
My biology has conspired to deny me the ability to exercise, so it all feels a bit magical now. My goal is, as it always has been, to return to competitive cycling. Though I am still experiencing immunopathology from the Benicar and the antibiotics some 3+ years into the treatment, I am at the point now where I can really push my body and see what happens. I expect that in the coming year I’ll be able to ramp up to 200 or 300 miles per week or more.
Recently, I came across an old post-it note onto which I copied a quote from Abraham Lincoln. It had appeared in a magazine, and it was taken from a letter our sixteenth president wrote to a friend: “I am now the most miserable man living. If what I feel were equally distributed to the whole human family, there would not be one cheerful face on the earth. Whether I shall ever be better I can not tell; I awfully forebode I shall not. To remain as I am is impossible; I must die or be better, it appears to me.”
Something about that quote must have felt very familiar, at least enough to write it down, yet it seems so strange now. The day I realized that my current self would never copy that down was when I realized I was at the beginning of the end.
I’m different now. I would probably take a pass on inviting former me to a dinner party– and definitely reject my candidacy for leader of the pep squad.
Sometimes people make the mistake of conflating negative life events with a negative mood. One thing this whole experience has told me, now that I’ve effectively shed my illness, is that I am not my moods. I am now convinced that all of my worst moods, the very thing that made life such a struggle were the product of infection. I am 100% convinced of it. And that’s why I feel so comfortable talking about my depression, because it wasn’t who I truly was.
I occasionally think about how I might respond if something really bad happened to me. I’m guessing I would hold up just fine. My mood isn’t on the precipice.
I look back at my other self– the dour, ouchy person– and I can’t help but think, “What a poor bastard.” What could I do or say to get him to realize that things are most certainly not so bad? The problem is, he did realize this was the case, but he did not feel it. Feelings are stubborn schoolchildren, always resisting correction.
1. Get comfy. If you’re ill, the MP is going to take a couple years.
2. While knowledge is power, don’t pretend your bacteria-addled mind can really understand any of the finer points of the MP. In fact, if you admit you know nothing, you may have an easier time with the MP. Ohm.
3. Then again, you probably should know enough about the MP to know when you’re messing it up. For example, if on the MP you are supplementing your diet with megadoses of vitamin D, that is not good.
4. Educate your family and support network. The MP really is not that crazy. It’s based on a highly intricate well thought out treatment and pathology. Lots of people are getting better on it. They need to know that.
5. Once ensconced in your dark, friendless cave, surround yourself with positive influences. Is now really the best time to read The Stranger? I think not. Instead opt for lighter faire like Care Bear cartoons.
6. Have faith. There may come a point where there’s nothing anyone can say that will make you feel better about the treatment, so you just have to believe…. Actually, what am I talking about?! You don’t have to believe anything. The great thing about the MP is that it worked even when I was thinking, “This whole thing is a big fat joke. There’s no way I’m going to get well on this.”
7. Bet your doctor a year’s worth of insurance premiums you’ll get well on this treatment.
8. Rely on your fellow MP patients, and try to make “MP friends.” Find people who have your condition, call them up (email only goes so far), and converse until you’re blue in the face, and don’t feel bad about it. Most of us have done the same thing to someone else.
9. Sometimes, the MP is just hard. Accept that. There is no right way to suffer through chronic illness.
10. Try not to think too much. At some point you’re going to change your mind, and self-refutation is damaging to the psyche.
11. To the extent that time permits when you’re well and enjoying life once more, do try to give back. There are two huge needs for people who have succeeded on the treatment. One, your fellow chronically ill patients need to know about this treatment, and, two, new MP patients need your support. Do whatever you can.
Look, I am but one data point. As a rule, it would be presumptuous to think that whatever worked for me must necessarily work for all others. On the other hand, I never cease to be surprised by the near universality of response to this treatment among those who are ill. People like me with CFS have the same immunopathological reactions as those with Crohn’s as those with IBD: the light aversion, the spike in symptoms, the delayed response to antibiotics, etc. It’s all pretty incredible, so much so that one can’t help but think, what if, indeed, all chronic diseases are animals of the same stripe? What if a cure for any one of these disease was nothing more than low-dose antibiotics, an ARB, light restriction, and time? It’s not so far-fetched. Crazy but not.
I like to think I would have tried the MP even before I became seriously ill– but it’s probably the case that the only reason I did it, all but forcing my doctor’s hand to his prescribing pad, was that I was desperate. I simply refused to be ill. If I was able to treat my CFS early, maybe those years on the MP could have been spent riding my bike. It’s pretty clear to me that the future of the MP is as a prophylactic. At the first sign of illness– depression, chemical sensitivity, asthma, whatever– you do an abbreviated version of the MP, and in the process skip most of the suffering I had to go through.
Sometimes you hear patients complain about how hard the MP is, but it’s only difficult, because you are fighting a lifetime’s worth of unchecked infection. Cell wall deficient bacteria have multiplied in many bodies for decades. You think that eradicating them is a couple week’s worth of antibiotics?
One of the reasons why I help out with this Bacteriality website is because it’s so important doctors, researchers, and patients know about the MP. The MP is not just for those who are hell-bent on getting their lives back. Ideally and this is what the future portends, the MP is for people who aren’t sick yet, but will be if they fail to act. Through my efforts, the goal is that no one ever has to go through what I did.
My only other point here is that in the future the whole range of chronic disease from cardiovascular disease to CFS to bipolar will all be considered to be types of (treatable) infections. As a nod to this, this group of illnesses may one day be called, “Th1 spectrum disorder” or something like it. When you talk to patients who suffer from chronic disease, it’s pretty clear that there’s a lot of overlap, and that making distinctions between one condition and the next is somewhat pointless.
No, I did not.
Oh… you mean my current roommate?
It has been three years since my original interview went up. Since that time, a lot of current and prospective patients have asked me to share how I’m doing.
Those of you who know my history recall that I had four symptom complaints: food sensitivities, depression, unrefreshing sleep, and exercise intolerance.
My food sensitivities appear to be gone. Also, I continue to no longer crave sweets as I once did. Even before the onset of my CFS in 2002, it was always a battle not eating muffins and other sugary snacks. Now, I don’t feel that urge. My sleep is generally refreshing these days. I go to sleep without any sleeping medication and generally sleep deeply for 8-9 hours. Generally speaking, I remain a great deal more emotionally resilient than I once was, even prior to being ill.
However, one area which is not 100% resolved is exercise intolerance. Early on in the MP as I found symptoms resolving, I was hoping that my improvement would be progressive, to the point where 5 years into therapy I would feel so strong that I would have a competitive advantage in semi-professional cycling races. Unfortunately, this has not come to pass. I can still go out for one or two rides a week, but that seems to be my upper limit for training. If I bike more than that, some of my symptoms including crankiness and unrefreshing sleep (but not food sensitivities) return. I would maintain this increase in symptoms is in fact immunopathology. Exercise causes greater tissue perfusion and breakdown, allowing the body’s antimicrobials to target areas not typically as well perfused. This leads me to believe I still have some microbes to contend with. So, these days I use exercise to increase immunopathology in a way that patients in earlier stages of the treatment use antibiotics to do the same.
For this reason, I typically tell people who ask that I am at 85% recovery. Of course, if I simply discontinued serious exercise, that number would approach 100%, with some of my original symptoms beyond pre-illness levels.
At this point, I have discontinued all antibiotics, because they no longer affect me. But, I continue to take olmesartan three to four times daily. If it were truly important to me to race and ride on a high level, I would discontinue olmesartan. I may do that soon enough as I’m curious to see how my exercise intolerance might improve. But, these days I am more interested in seeing what happens if I remain on olmesartan.
I’m very happy with my progress and continue to work with Autoimmunity Research Foundation. I still maintain that the future of medicine will be the Marshall Protocol or something like it. One of my goals is to get researchers to build on the MP.
In 2003, this school teacher from Indiana was suffering from sarocoidosis, fibromyalgia, CFS, and myriad other symptoms. Today, thanks to Autoimmunity Research Foundation’s Marshall Protocol, she considers herself healthy and is traveling the world with her husband. Meet Carole Morgan.
Before I found the MP, I was actually undergoing tests for cancer. I had originally visited the emergency room in December 2003 because my legs had become so swollen and painful that I could hardly walk. An abnormal chest x-ray revealed extremely swollen lymph nodes. My physician referred me to a pulmonologist who ordered more tests, including a CT scan for my bloated and painful stomach. He then referred me to an oncologist, feeling that I probably had cancer. More scans and tests were performed because they just weren’t sure what form of cancer I might be suffering from. First they thought it was lymphoma, then bone cancer, then finally lung cancer. While they were pondering a diagnosis, I started to do my own research on the Internet. Since the second possibility listed from the CT and PET scan reports was sarcoidosis (a disease that I had never before heard of), I started to research sarcoidosis on the web and found sarcinfo.com—a website created by Autoimmunity Research Foundation that was the predecessor to MarshallProtocol.com.
The science behind the Marshall Protocol seemed to make so much sense. Also, I realized that I had nearly every symptom of sarcoidosis, as well as hypervitaminosis-D—a condition in which exposure to light flares a person’s disease symptoms. I could literally go down the list of symptoms and check each one off, such as swollen salivary glands or a metallic taste in my mouth. Since I was sensitive to light, it was another clue that I was on the right track. During the testing process, I shared this information with my family doctor, who luckily agreed to support me in the MP. Since I wanted to start the treatment immediately, he ordered the blood tests, prescribed the medicines, and began to follow my progress.
However, my oncologist was still adamant that I might have cancer, insisting that I have a mediastinoscopy—a surgical procedure to examine the inside of the upper chest between and in front of the lungs. I did not want to have the surgery done because I was convinced that I had sarcoidosis and could use the MP to treat my illness. Plus, at the time, I had extremely high blood pressure, which put me at greater risk for problems during surgery. Nevertheless, he insisted that I have the mediastinoscopy, so I went along with his wishes in order to prove that I was right.
Sure enough, when the procedure was over, the surgeon immediately turned to my husband and said, “She definitely has sarcoidosis.” So I had diagnosed myself correctly from the start. I then proceeded with the first antibiotic of the Marshall Protocol.
My health had been deteriorating for decades before my doctors started thinking that I might have cancer. When I was a young child, I had chronic inflammation involving my kidneys, tonsils, and sinuses. I also had prolonged pain behind my knees. In retrospect I realize that I was very light sensitive at an early age. In family photos I was always shielding or closing my eyes. By the time I had reached my late 20s, I had gone to numerous doctors looking for ways to treat what had developed into severe back pain. I was told that my x-rays resembled those of an 80-year-old woman. Later I was diagnosed with osteoarthritis and had back surgery in 1980.
Many breast lumpectomies were performed throughout the years, beginning in 1975. In 1982, I developed a pituitary tumor that was also removed by surgery. In 1992, my gallbladder was taken out, and a complete hysterectomy was performed in 1999. In the meantime, I was dealing with colon polyps and began to have serious thyroid issues as well as blurred vision. On occasion when I turned my head, my view became distorted and I had reduced peripheral vision. Sometimes it would seem as if the person I was looking at only had one eye. I also began to have excruciating migraines and often ended up in the emergency room because they were so painful and accompanied by non-stop vomiting. Then, I developed Temporo-Mandibular Joint (TMJ) Disorder, and my neck and back pain got worse. I also had big-time cardiovascular issues as detected by various EKGs.
Furthermore, I had a host of gastrointestinal symptoms and a history of recurring colon polyps. I had severe muscle and joint pain and was diagnosed with fibromyalgia. During the mid 1990s, I had a case of mononucleosis that never really went away. The flu-like feeling and the symptoms of fatigue persisted, and I was also diagnosed with CFS. I went through a spell where I felt that I was in respiratory distress, unable to naturally inhale or exhale. I was also plagued with unrelenting bladder infections and chronic bronchitis. My blood pressure was increasing, as were the PVCs and tachycardia, so I was put on a beta blocker. Eventually the high blood pressure caused the development of left ventricular hypertrophy which leads to heart failure.
My teeth also started to fracture, and my fingernails would break off at the level of the cuticle. My throat would tighten when I tried to eat, and I would often choke on food that would get stuck in my throat. My hair started to fall out. I lost all strength in my legs. When I was young I was a dancer, but later in life I had problems even bending without falling over. I also had inner ear problems in that when I would turn my head, I got extremely dizzy and on occasion would need help in order to walk straight. Because of my vision it was very difficult to work at the computer screen.
Finally, I was deteriorating mentally. I often wasn’t thinking clearly. Sometimes I couldn’t remember how to spell certain words. One time I was engaged in a normal conversation when the word “goat” just came out of my mouth. It was in no way relevant to the conversation. I also developed a buzzing and fluttering feeling in my brain.
When I first got onto sarcinfo.com, I read that I should stop taking any supplements (other than those needed to correct a recognized deficiency), and I did exactly that. I had been taking extra vitamin D because I was told that it would help my bones, as well as a multivitamin that also contained vitamin D. I had also sought out foods high in vitamin D because I incorrectly assumed that my bones might benefit from high amounts of the “vitamin.” Within just a few weeks of stopping the supplements, I started to feel better. Soon after I started Benicar, I could bend my knees to an improved angle. I was also used to my muscles feeling like mush – to the point where even my massage therapist didn’t think it was a good idea to massage them. But once on Benicar they started to feel different and more stable.
I felt symptoms of immunopathology as soon as I started taking minocycline. Since I’m pretty sure that every inch of my body had been infected with L-form bacteria, I did experience strong and diverse immune responses. At first, the immunopathology in the area behind my knees was the hardest to deal with. At one point I even contacted a surgeon to see if there was some way he could help the knee pain, but the board moderators told me to hang in there—that if I put in enough time, it would go away. And they were right. Now, over three years into the MP, I no longer have pain behind my knees.
Three months into the MP, a CT scan showed a slight decrease in lymph node size. I was encouraged. Then, three months later, another CT showed significant improvement, with resolution of infiltrates! At that point my doctor dropped any skepticism he might have had about the MP. He too was convinced that it was working. The sores in my nose went away, and my migraines improved tremendously. With each new CT scan, my results were better and better. At about a year to a year-and-a-half into the protocol, my CT scan was normal! My other blood markers also returned to normal. My last pulmonary function test showed that my lungs are working even better than what is considered normal.
No matter how much I was covered, when I got too much sun I experienced sensitivity with increased throat pressure or tightness, palpitations, a headache, nausea, or swelling. I did not become super sensitive visually until I had been on the MP for about six months.
I can do just about anything I want. I still don’t spend prolonged periods of time in the sun, but I can tolerate a good amount of light. This past summer I even got a small tan on my face, chest, and hands with no rise in symptoms.
My fatigue has been replaced with renewed energy. I have better balance and agility. I have strength and muscle tone in my legs again, and my back/neck issues are totally gone. I can now lift, twist, and engage in all kinds of movement. The pain and swelling in my stomach, legs, and feet are gone. My digestion and sleep patterns have normalized. My hair is growing back thickly again; and every time I go to the hair dresser, she says, “Ah! I’m so glad you’re beyond that!” For the most part, my headaches and blurriness are gone, although I may have a slight headache here and there, which is quickly dampened or eliminated with an extra Benicar.
My blood pressure readings are back to normal, and the chest pain and pressure have disappeared. The TMJ and teeth sensitivity have resolved. Until recently, if I tried to carry a shopping bag, the pressure on my joints would mess up my fingers for a very long time. Now, I can carry shopping bags without any resulting issues. Plus, my two trigger fingers have returned to normal. I have reduced my thyroid meds to a level that is less than half of what they used to be.
Really, all my symptoms are gone or greatly improved. Some of them were so bad that I feel like I’m 1000% better. There is no doubt in my mind that the MP has literally saved my life. But I still am experiencing immunopathology, which tells me that I still have bacteria to kill. I don’t mind staying on antibiotics for a few more years, because I feel I’ve already regained my health. Now I’m just tweaking my health until I am absolutely confident that I am 100% better. For example, the cyst on my liver is still there, although it might be a little smaller. Perhaps it will go away completely.
Oh, yes! Last spring the Dexa scan revealed that the MP is working toward suppressing my bone reabsorption. My T readings have improved and are reversing direction.
My family physician has been incredibly supportive since day one on the MP. He reads the information that I provide him about the treatment and writes whatever scripts are needed. He definitely vouches for my progress. He has told me on several occasions, “This treatment has worked for you!” He has also told me that he is very willing to treat other patients with the MP.
Hmmm…I can’t think of anything. Oh, well it was difficult to realize that during the times when I was sensitive to light I could no longer garden. I love to work in my flowerbeds. There is also a rather sunny beautification project that I helped to develop downtown that I could no longer tend to, so this made me a little disappointed. But I soon realized that the guidelines were there for a reason. At the start, even when I would go outside covered from head to toe, I would often still get a rise in symptoms from the sun. However, that reaction has gradually improved and is not a big issue anymore.
Not everyone has as severe sun sensitivity problems and many are able to use sunscreens that contain zinc oxide or use prescription ketoconazole cream, which allow them to have more sun exposure. See here.
Do your research. You must follow the guidelines diligently. Try to be patient because the MP is not a quick fix.
After 34 years of teaching, I am working as a substitute teacher almost every day. Just today, I spent four straight hours singing with primary children. I am now able to participate in outside recess duty, where I am often in the sun. I have also been traveling with my husband and actively enjoying our retirement together. In May, we visited the Middle East. I walked and climbed through the pyramids in Egypt, and later in July walked throughout the large cities in Italy. On an earlier trip, I hiked around 10,000 ft. of mountainous terrain. Despite the fact that I had not exercised much while on the MP, except for walking our dog, I fared very well. Since I was not “physically fit” as in prior times, I was assuming I would be sore from the exertion. To my surprise, I only had very minimal muscle soreness that went away quickly. Even after a fall, I was hardly sore. So basically I plan to continue enjoying life!
She used to alarm others with her wheezing and now she can run up the stairs of her house and not even think about her breathing. In fact, this Texan is literally singing about how good she feels thanks to Autoimmunity Research Foundation’sMarshall Protocol. Shirley J. will now take your questions.
I was diagnosed in 2004. It was very scary to be told I had a disease that other doctors believed has no cure. My doctors told me that few people die from sarcoidosis (which is incorrect), but right around that time football player Reggie White died from sarcoidosis. I was very alarmed.
I started researching sarcoidosis on the internet and found myself at a support site. Marshall Protocol nurse moderator Meg Mangin was also a member of the site. She emailed me an overview of the treatment and also warned me not to take prednisone because it is a steroid that suppresses the activity of the immune system and allows L-form bacteria to spread more easily. Then, Belinda Fenter, another MP moderator helped me find an MP doctor (we both live in Texas).
I started reading the information on Sarcinfo.com – a site created by Autoimmunity Research Foundation that was a predecessor to MarshallProtocol.com. As I started to read and understand the science behind the Marshall Protocol, I knew that Dr. Marshall was onto something. It makes so much sense that Th1 illnesses are not genetic but due to the spread of bacteria, and that pulsing the antibiotics gives the body the opportunity to fight these pathogens. I started the MP in January of 2005.
I started wheezing off and on and then it became constant. One day while working out I felt like I was going to pass out because my airway was so constricted. I used to be very self-conscious about my wheezing especially at work and talking on the phone. One day I was talking to my director at work and each time I would take a breath in, it sounded like crackling paper. I would cough really hard because my airway felt like it was stuffed with cotton. My director at work was very concerned about me starting this unknown treatment until I gave her the information on the MP. It wasn’t until she started to see my progress that she became confident that the protocol works. Prior to starting the MP, I had insomnia and experienced soaking night sweats. Due to lack of sleep, I suffered from cloudy thinking and brain fog.
When I started the MP I had steady immunopathology that was consistent with my disease symptoms. The flares in symptoms correlated with each dose of antibiotics so I knew that the symptoms were due to my body dealing with the consequences of dying bacteria. A week after starting Benicar my insomnia completely resolved. After that point, I never again had trouble sleeping through the night.
My brain fog went away four to five months into the treatment. Six months into the MP I began to notice a big difference in my level of wheezing and the “stuffed with cotton” feeling began to drop. I started to be able to expel air in a normal way. Before the MP it had felt as if there was a balloon blocking my airway, but at the six-month mark it seemed as if the balloon was shrinking and when I was in certain positions the airway would open up again.
19 months into the MP, I noticed that I wasn’t even wheezing every day. My husband was amazed at how much my breathing had improved. About two years into the MP I had to clear my airway at work and my director said, “Shirley I haven’t heard you do that in a long time”. I said, “I know, isn’t it wonderful?”
I feel almost normal again. My energy level is great. My airway feels a lot more open. When I yawn deeply I can fill my lungs up very well, and when I exhale, I don’t hear that wwwhhisstllle. I don’t feel my lymph nodes sticking together the way they used to. When I talk, I do not wheeze. When walking and talking I don’t feel air deprived. My last CT scan showed that my lung fields are clear and the lymph nodes are stable. When I mow the front yard I smile because I can mow like a pro. And no wheezing!!!!
The other day I was singing at my desk and my Director heard me holding a really long note. She came out of her office and said, “Shirley, I haven’t heard you sound like that in almost three years! You sound great!”. I didn’t even have to take a deep breath in order to hold the note. My voice sounds so much better. Much like when I used to sing for a living. It’s good to know that if I need to sing, I have my voice back and my lung capacity has returned.
These days, when I walk up high flights of stairs, I don’t even think about my breathing. Over a year ago, my husband and I moved into a new house. When we were first looking for a home, I still felt a little like cotton was stuck in my chest, and I would try to clear my chest all the time. Even when we first moved into our new home, I had a feeling of fullness in my chest, and was still wheezing. Now, it is wonderful. Sometimes I wheeze upon exertion but those occasions are few and far between.
I am exercising 5 days a weeks walking 2 miles in the morning. My husband and I walk our dog every Saturday morning for about two miles at a park near my home. The park is hilly, and let me tell you on the second time around the park my legs can feel the muscles working. My lungs do great!
Interestingly, my sense of smell has returned. It seems that I can smell things from a mile away. I can smell my neighbor’s cooking. I realize that my dog can smell stinky if he hasn’t had a bath! I am just amazed at how I can smell things now.
Most importantly, I no longer fear for my life and have great hope for my future.
I was part of the first group of patients to start the treatment so at first there was a bit of uncertainty in terms of whether or not I would completely recover. Now, of course, I have no more doubts along those lines! I also started the MP at a point where I was trying to move up in my career. During meetings at work I had to wear my Noir sunglasses while I was speaking with the leaders of the company. Sometimes it was hard to communicate and I felt self-conscious. They never asked why I was wearing dark glasses and consequently I never offered any sort of explanation.
I no longer need to wear my sunglasses indoors. I only wear them when I am outside in the sun. I also no longer have adverse symptoms when I get sun exposure, although I still wear long sleeves when I am outside.
Hang in there. It will take time to get better but you will get better.
About six months into the MP when I still had to avoid light, I went to get a blood test done. It was during the height of summer and the lab had huge open windows. I walked in with a long, dark, coat, a scarf, a hat, mittens and gloves. Everyone looked petrified. I thought to myself, “I should yell out ‘ALRIGHT EVERYBODY’ and then quietly say, ‘don’t be alarmed, I am just on the Marshall Protocol.’ But I didn’t say a word. I just walked in and took my hat, and gloves off and waited to be seen by the lab tech.
Life lies ahead. We really would like to have a family so we may look into adoption or who knows, maybe we can have a family on our own. The most important thing for me is that I am healthy and happy. I am back writing music again and writing jingles. I am working on one for the MP and I really look forward to the day when I will see advertisements for the MP on TV – much like the adds for other new treatments. I plan to spread the news about the MP in any way that I can.
By 2003 she had physically hit rock bottom and was completely unable to maintain her farm. Now, thanks to Autoimmunity Research Foundation’s Marshall Protocol, she has the energy she had in college. Sue Andorn will now take your questions.
I started my 4th year on the Marshall Protocol in June 2007.
When I was a child I was quite healthy. I walked four miles to get to school and had perfect attendance. My first sign of illness occurred in college when I got a polynidal cyst on my tailbone. It burst internally before it could be removed. I now know that it was probably filled with bacteria that subsequently drained throughout my body. I graduated from college with a degree in microbiology and proceeded to work at Sterling Drug Company, where our team began doing research on a measles vaccine. Because we were working with germs, I had to get an Asian Flu vaccine. Within minutes of receiving the injection I went into anaphalactic shock. Six months later I got extremely ill with the flu despite the vaccine. Knowing what I know now, it was a vaccine contaminated with L-form bacteria. I never really recovered. That was the start of a downhill slide that lasted 50 years.
Soon after, I began doing research in the poultry department at Cornell University along with a team who were studying multiple sclerosis in chickens. In the years that followed, I developed symptoms of multiple sclerosis myself. I had a host of neurological symptoms, especially symptoms that interfered with my vision. When driving, I had to put my left hand on my temple in order to force my eyes to see straight ahead.
As the years wore on, I had various infections that doctors treated with beta-lactam antibiotics, the type of antibiotics I now know actually encourage the formation of L-form bacteria. I also started to get horrendous headaches. I was living with so much pain but had no choice except to push on. I guzzled at least 9-12 aspirin a day, 3 at a time, but got little relief. Several years later, I got bitten by a deer tick and developed Rocky Mountain Spotted Fever.
I began to have panic attacks. Many nights I ended up in the emergency room and often my husband had to carry me down the stairs and out of the house. It felt as if the world was spinning and riding in vehicles made me dizzy and sick. Then, about 20 years ago, I was living on my farm (where I still live) and felt something itching on my leg. I looked down and there was a 1.5 inch bullseye 12 inches above my ankle – I had been bitten by another tick. I couldn’t walk ten feet without cramping. I started to take 18 aspirin a day.
My doctor barely knew what Lyme disease was, let alone how to treat it. In fact, he wouldn’t even give me a test for Lyme and was skeptical when I reported my symptoms. Finally my husband called the Lyme Foundation. I just couldn’t take one more ignorant doctor. At the time their treatment for Lyme was penicillin and prednisone. When I started prednisone I felt horrible. I was so wired – it felt as if I had stuck my finger in an electrical socket. Thankfully, I stopped the prednisone. I continued the penicillin, oblivious to the fact that I was taking yet another antibiotic that encourages the formation of L-form bacteria.
During this time, my husband was forced to take a job in France. I had to travel back and forth to visit him overseas despite the fact that I was so ill. But most of the time I was on my own. My weight skyrocketed. I gained about 50-60 pounds overnight. Friends and family accused me of having no willpower. Although I ate only small amounts of healthy food I was told I was eating the wrong stuff. In order to appease everyone, I was given an exercise bike. Despite my symptoms I forced myself to pedal for ten miles every night, just to communicate the idea that I was trying my best to manage my weight.
The fatigue was horrible. It can’t even be described as fatigue, it was utter collapse. I told my husband, “If the house catches on fire and you don’t want me around, don’t get me”, because I couldn’t make it quickly out of the house myself. I started to have horrible problems breathing. I swore I had pneumonia but my doctor told me I was crazy, my chest X-rays were fine. One night I had a breathing attack. I fell on the floor completely unable to breathe. I lost complete consiousness and saw bright lights in front of my eyes. It was a near-death experience.
I also had terrible pain in my muscles. The muscles in my shoulders were rock hard with tension. The doctor sent me to physical therapy where the therapists tried to break up the muscle fibers by drilling short sticks of wood into the muscle. It was so painful. At this time I had been sent to an infectious disease doctor as my family doctor had no idea how to correctly treat Lyme Disease. This doctor started me on IVs of the antibiotic Rocephin. I administered the IVs everyday at my shop before I opened. One day, a new package of Rocephin arrived by overnight air. It was a different color than usual and I could tell it hadn’t been refrigerated. The drug company told me to take it anyway. It made me incredibly sick. I called my doctor and told him that I refused to take Rocephin anymore.
During all this time I continued to run my yarn business. I clung to it because working and interacting with other people at the shop was the only thing that made me feel somewhat normal. Plus, I needed the money. I started to suffer from dyslexia and that made working even harder. I would mix up the numbers in the 1000s column of my checks and they would bounce. I had to go to the bank and explain that I had a problem. I also had three children. With each pregnancy I became progressively sicker.
By this time my blood pressure was out of control – it was extremely high. I was given blood pressure medication. One night when I took the medication I began to hallucinate. It scared me so much that I stopped the blood pressure pills as well. I went to the Mayo Clinic seeking help. They diagnosed me with osteoarthritis and rheumatoid arthritis but had few treatments to suggest. I developed a terrible rash on the left side of my face. It felt as if my left ear was on fire. My eyesight got worse. I saw flashing fireworks in the corner of my left eye and I was unable to focus my vision correctly. The headaches got worse. Large crusty scabs and sores developed in the creases of my eyes. I started to have suicidal thoughts, not because I was clinically depressed, but because I just wanted the pain to end.
I had tremendous incontinence. When I told my doctor he laughed at me. Although I felt like I wanted to sleep all day, I had complete insomnia. I took so many sleep medications that I thought they might kill me instead of put me to sleep. Then, I was bitten by a mosquito and developed West Nile virus and Babesia. I almost died again. After that there were always huge black circles under my eyes.
I was lurking at a website called Lymenet. I knew I had Lyme disease even though my current doctor had still refused to get me tested for Lyme. The site had a list of doctors that treated Lyme. I chose Dr. Fein, a physician who lived about three hours away. My husband went with me to see Dr Fein. When she asked me about my symptoms I was so sick and brainwashed that I couldn’t even list them. But my husband just rattled them off and they fit the definition of Lyme disease exactly. I was finally given a diagnosis. The diagnosis was later confirmed by spinal tap PCR. Dr. Fein started me on 24 hour pumping antibiotics at the cost of $7,000 a week. After each round of high-dose antibiotics I just got worse.
I continued to read articles on Lymenet. One day, they featured an article about the Marshall Protocol written by Dr. Scott Taylor. Thanks to my background in microbiology I easily understood the treatment. I screamed “Oh my God! It’s a cure! It’s not just another Band-Aid!” I immediately realized that Benicar was the key to recovery. I mean, the science behind the MP is just damn common sense!
I presented the Marshall Protocol to Dr. Fein and she agreed to let me try it. However she was a bit skeptical about high dose Benicar. So she wrote me a script for only one Benicar a day, despite the fact patients must take four Benicar each day if the treatment is to work correctly. For some reason, my pharmacy let me fill all six refills for my Benicar prescription in one month. I decided to take three Benicar a day even though I knew I would run out soon.
By that point, I was very scared of medications because of the terrible reactions to drugs I’d had in the past. The first night I took a Benicar I was very nervous. I swallowed it and said “Here goes!” When I woke up the next morning I could not believe how I felt. I felt better. It was working! Finally I ended up writing Dr. Fein an email confessing I had taken more Benicar than prescribed. I said “Please don’t shoot me, but I’m taking four a day and I feel so much better!” She didn’t get mad. Instead she called the pharmacy and changed my prescription to four a day.
Well, I have my brain back! It feels so good to get my brain back. My short-term memory, which I had completely lost, has been restored. I think that at the moment my brain functions even better than it did when I graduated from college 50 years ago. I’m 71 years old, but I’m even considering going back to college or buying DVDs of college courses. Now I have a great craving for knowledge and may even take some courses in calculus, a subject that was my Waterloo in college.
My fatigue is virtually gone. I have landscaped the entire yard on my farm, something I haven’t been able to do for the last 30 years. When I work in the yard I dig holes, I clear brush, and I push the lawnmower in order to cut the grass. Last year I buried a 300-pound sheep all by myself. I carry 40 pound bags of salt, and can dump 50 pound bags of grain into a wheelbarrow. I’ve never, in my entire life, had this kind of strength!
And then there’s my eyesight. My eyesight is only getting stronger. For the last 50 years I have worn prescription lenses for farsightedness. I had a script change in May, and my prescription was not nearly as strong as it used to be. In fact now, just a few months later, the new prescription is too strong. My eye doctor can’t believe it. He’s so impressed that he asked me for written permission to be able to tell his other customers about my progress on the MP. I anticipate that I may not be wearing any lenses at all down the road. The MP is going to change the paradigms on aging. I am just getting younger everyday.
About four months ago my blood pressure was normal for the first time in 40 years. I just couldn’t believe it. My tests for Lyme and Bartonella (which had been positive before) are now negative.
The extra weight is completely gone and during the Marshall Protocol I made no changes to my diet. The extra fat just went away gradually as I healed. I used to crave sugar, but not anymore. The other day I bought a cream doughnut and it seemed tasteless. Also, my body temperature is back to normal.
My headaches are virtually gone. I still have a small headache here and there but I think it’s partially because my glasses are too strong! I still have occasional insomnia but it’s pretty much all cleared up. I have very little grey hair and the new hair that is growing in is black rather than grey. My fungal toenail has grown out.
I have no more panic attacks and my anxiety level is drastically down. My dyslexia is gone. You wouldn’t believe how fast I can add up the sales slips at work! I’m no longer dizzy. And there are a whole bunch of other smaller improvements. For example, the big toe on my right foot used to be bent like an L. Every time I bought new shoes they became distorted. Now the joint is completely straight and it’s no longer red or inflamed.
Dr. Fein is a witness to the fact that I am getting better every day. She admits that I am recovering and is thrilled with my progress. She has started several other patients on the Marshall Protocol.
The herxing was heavy at first, but was never harder to deal with than the symptoms I had before the MP. Once on the MP I had a mental edge – I knew I was on the right track, so I was going to feel the pain to work the gain. The immunopathology never got so bad that I couldn’t get to work. At least I don’t think I missed more than 2 days in 3 years+. I had suffered so much over the previous 20 years and had somehow managed to keep going. So once on the MP I said, “I’m going to make it work”, and I did. The immunopathology-related insomnia was also hard to deal with, especially when I had to work. But since I ran my own business I could pace myself, like the actor that says, “The show must go on.” During the first years on the MP I also had a lot of muscle spasms. Sometimes they were through the roof. But they have virtually gone away now. I did continue to take aspirin because of the pain, despite the fact that the MP does not recommend its use. I also took hot baths, which allowed me to sweat and feel less toxic. Several times I would come home and lay down for an hour before I would have dinner, but that was after I had walked the dog and drove for 1/2 hr to get home. In other words, the MP was a piece of cake in comparison to what I endured before.
Bactrim was the only antibiotic that I had to back down on. That packed a huge wallop. I read and still read every single post on the MP board so I am well aware of what symptoms others experience. By reading the progress reports of those who had started the MP before I did, I understood what types of symptoms to anticipate and how to manage them. So I plunged on ahead, although I never let my symptoms reach an intolerable level. My attitude was I was on a killing spree and ridding my body of the enemy. I have never taken an antibiotic vacation, but again, I had put up with so much before the MP that being on the treatment paled in comparison to what I was used to enduring. Likewise I justknew I was getting better and it was worth the pain. Having to help customers at the yarn shop took the focus off myself. Instead, I tried to put my energy out to help others. The distraction really helped. I also took a lot of hot baths. They allowed me to sweat and feel less toxic.
The hardest symptoms to manage were probably all the brain fog and the dyslexia. I refused to use a calculator to add up sales slips. I made a slow and concerted effort to do all the adding in my head. Most of my customers knew my plight and were very patient. It paid off. The brain fog lifted first, then the dyslexia, and finally my level of motivation increased tremendously. I am so ambitious at the moment.
The changes occurred gradually. They were little ones, like one fingernail becoming smooth instead of having vertical rips and ridges. I knew that 50 years of a downhill slide wasn’t going to change overnight, so even the littlest changes were very welcome. After the first six months I turned a small corner, then another corner about a year later. The second Marshall Protocol Conference in Los Angeles was held right at the time that marked my completion of 2 years on the MP. While at the conference I thought back over the previous years and really took note of how much better I felt. I said, “Right now I feel gold, but I’m going for platinum!” As Dr. Marshall says, the MP is a voyage of discovery. The immunopathology of the last week just reminds you that there is still work to be done. The IP doesn’t really faze me because I am alive and getting better. Stress just doesn’t exist anymore.
I would have to say nothing was a surprise, as I feel my body didn’t have a cell that wasn’t infected. I did have cardiac symptoms during the first years, but I was prepared for them. The board staff warned me in advance that my heart was most likely infected because I was so ill. But for at least a year now, the cardiac symptoms have completely gone away.
For a while I also developed shingles, which I’d never had before. But it was probably the herpes virus resurfacing since I’d had chickenpox as a child. The pain was horrendous but it finally went away.
I am at the highest dose of the most potent combination of antibiotics used by the MP. I have tried all the different antibiotic combinations twice and this is the third time I’m on the strongest antibiotic combo. I had a small increase in IP symptoms about 8 months ago because the level of 25-D in my body dropped to a very low level and my immune system really kicked in. At about that time my blood pressure became normal for the first in 40 years.
Patients on the MP wear special sunglasses made by the company Noir Medical. I didn’t have the Noir sunglasses for the first 3 months on the MP. Instead I was forced to use glasses with photo gray lenses until the Noirs arrived via mail. When I started the MP I was photosensitive. Luckily it was fall, so there wasn’t as much sun. I have never been a sun worshipper, so it was easy to avoid. I did not block the windows in my house as I have two-foot thick stone walls and a huge walnut tree that shades the house. I did keep the lights very low. At the yarn shop it was a little more difficult to avoid light because of the east windows and the fluorescent lights, but I wore my Noirs and was able to manage. When people asked why I was wearing glasses, it gave me a good opportunity to bring up the MP. Stores with fluorescent lights were a problem so I avoided them as much as possible. About 15 months into the MP I found I no longer needed to wear Noirs when I was on the computer or working in the shop. Instead, my photo gray glasses did the job. In order to block sunlight I religiously apply ketaconazole cream to my face and arms. Ketaconazole cream blocks the production of vitamin 1,25-D in the skin. Occasionally I forget to apply it when working in the yard in bright sun and I may have an occasional sun flare. I will probably stop using the ketaconazole cream when the tube runs out in about two months.
I still have a ways to go on the MP. But the majority of my symptoms are only in my lower body. I have problems with the hamstring on my right leg and I have a torn meniscus that I have decided to let heal on its own. Just last week I had strong immunopathology in my legs. It brought back memories of 15 years ago when I first started to have symptoms in that area. But I just got out a knee brace, wrapped the legs up with some ace bandages and proceeded with my day. As of tonight, the pain is almost completely gone. Without the MP, I truly believe I would be six feet under. Now I am going for at least 100, more like 120, and I plan to be very active in the years to come. I have the energy that I had at 35, but I still have a long way to go. I know there are still a LOT of enemy (bacteria) hiding, but they will be found and will succumb! I’m also intent on spreading word about the MP. The MP is the only game in town. When customers come into my shop I give them a free copy of Dr. Marshall’s “Science” DVD. I have also realized that I am in control. Ultimately, I am in charge of my own health and I can actively participate in the decisions that will allow me to recover.
Two years ago he was bedridden with severe body and joint pain. Now he’s back at work and feels better than he has in years. Join Ival Meyer as he talks about his experience thus far on Autoimmunity Research Foundation’s Marshall Protocol.
As I got sick, the first symptoms I felt were confusion, fatigue, and a terrible flu-like feeling. After a while I thought that maybe I’d had a stroke. Of course my doctor told me to take Prozac. Well, I knew I wasn’t crazy and sure enough after about another year my joints started to hurt as well. That is when my doctor diagnosed me with rheumatoid arthritis. Next thing I knew, my rheumatoid arthritis pain started to get very bad. I had a great deal of pain in my hands and feet. The ligaments were so stiff that my toes started to turn and bend out of shape. My hands were getting very close to doing the same thing right when I found the MP. I’ve also had severe upper and lower back pain my whole life. When I was in high school I had to quit sports because of the back pain.
I used to work as a collision technician. When I started to get sick I had to quit my job. Before starting the Marshall Protocol, I wasn’t able to work for over a year, and I couldn’t work during the first 21 months that I was on the treatment.
The lower back pain has completely gone away. The pain in my hands is 100% gone. My toes are still curled up but they don’t hurt anymore. I think the ligaments are definitely loosening up. The flu-like feeling is gone. The fatigue is much better. I’ve been able to start working again. I work in the office of the collision shop but I’m starting to get back out to the cars.
Absolutely. I had gastrointestinal symptoms. Also, when I was in the second grade I started to suffer from dyslexia. As the years went by, I found it very difficult to read. Phonics didn’t make sense. I remember thinking, “I’m not stupid, but I can’t spell!”
When I started taking Benicar I was completely amazed to find that I could pick up words so much more easily, in a manner I’d never felt before. I had about ten books lying on my nightstand that I started reading! When I started the antibiotics, the dyslexia came back temporarily as my body started to kill bacteria. Symptoms waxed and waned depending on the type and dose of antibiotics. Now I can read and write much more easily. I feel very different and the symptoms are just a small nuisance. I’m sure they will go away completely in the coming years.
I feel as if I’ve revisited my childhood illnesses. When I was in my 20s my appendix was removed. At the beginning of phase two I started to have severe pain in that area where it used to be. When pain in that area flared, my joint pain went crazy as well. It’s so obvious that all these health issues are connected. Now the pain in the area where my appendix used to be has completely gone away. When I was young I also used to get a rash on the back of my heels. Sure enough, the rash came back during my time on the MP. But gradually the rash has disappeared and been replaced with new skin. I also had quite a bit of dandruff which has now totally gone away.
I think what surprised me the most was how infected I was with L-form bacteria. Once I started the Marshall Protocol, it became obvious that I was suffering from a systemic problem because the treatment has addressed every health issue that I have ever had. Also, a few months into the MP, I started to get dark skin blotches all over my body. They came out like crazy. They had never appeared before the MP but my Grandma has many of them. Now they’ve all peeled off and there is new skin underneath. I also had several moles that fell off and disappeared.
When I first got diagnosed with rheumatoid arthritis my doctor put me on prednisone. I felt better, but after six months I relapsed and my symptoms came back twice as badly as before. Nevertheless, my doctor told me to take more prednisone and had a nurse give it to me in the form of a shot. The day after the shot I started to go insane. I sat in bed all day screaming and freaking out. I remember telling my wife “I’m not sure what’s going on but just leave the house.” When she checked on me that afternoon I was starting to come back to reality. When I went back to the rheumatologist, all she said was “Oh, that happens sometimes,” with a smile. But that stupid shot scared me to death. I vowed I would never take prednisone again. So I went searching for another solution and found the Road Back book at the local bookstore. The Road Back is a rheumatoid arthritis treatment that uses minocycline. During the time that I was looking for another treatment, I still had a bottle of leftover prednisone. I knew the drug would hurt me but I was in so much pain. I actually slept with the bottle on my pillow in case I couldn’t stand the pain during the night. But I’m proud to say I never caved, I never took one pill.
No. Before I learned about the Marshall Protocol I tried two other treatments that use antibiotics to treat RA. The second treatment made me feel terrible and during that time I was essentially bedridden. When I started the MP I realized that taking Benicar makes a huge difference in being able to tolerate the immune response generated by taking antibiotics.
There was some talk about a new protocol on the RA and lyme boards that I used to frequent. I was so impressed with the Marshall Protocol web page when I found it that I don’t think I slept for a couple days because I was reading all the information. Luckily that was one month before the Chicago conference. I felt terrible but I knew I was going to attend the conference. When I got there, I was completely amazed by Dr. Marshall and the group of people at the conference. I thought it was going to be put on by a big major university or the NIH or some institution like that. Instead, I remember seeing Dr. Trevor Marshall and two board moderators, Meg Mangin and Belinda Fenter, sitting at a table in the hotel restaurant. I walked up to them and asked, “Exactly who is putting on this conference?” They just smiled, looked at each other, and said “We are.” I couldn’t fathom the idea that those three people knew so much about chronic disease that most of the world wasn’t aware of yet.
Yes. I couldn’t go get the mail, even when I was wearing a thick jacket to block sunlight. During the first four months everything seemed so bright. But the light sensitivity gradually decreased. Now it’s pretty much gone. I still wear sunglasses outside but frequently find myself pushing them up off my eyes and onto my head.
It takes so long to heal on the Marshall Protocol. When I couldn’t work because of my symptoms, my wife had to work double hours. Meanwhile, I was lying in bed doing nothing. I knew I was getting well but I felt really bad that I couldn’t help out around the house. Also, some mental symptoms flared as well. I went though a period where I just couldn’t make decisions.
I’m convinced that I will live longer because I’m doing the Marshall Protocol. Clearly these bacteria are what bring the elderly down. But I’m not going to have any! It’s a good feeling to know that you’re going to age with, let’s say, dignity and grace. When someone asks me “Now how old are you?” I say, “45. I would’ve been 48 but I was sick for three years.” That reflects how much younger I feel.
Study the website as much as you possibly can so that you can understand what you are doing and what will happen when you start the treatment. The more information you soak up, the better prepared you will be to handle any difficulties that might arise. Fully understand the Marshall Protocol model. Then accept the fact that the healing on the MP is going to take a very long time. Don’t ramp your antibiotics too quickly. If people quit, it’s often because they panic and take their meds too fast or because they set a time frame that is too short for full recovery. You have to put everything on the table. Also set small goals during your recovery.
I still have some pain in my upper back. But I am confident I will recover completely and probably feel better than I’ve ever felt before. I think the future will bring just living a normal healthy life, something that just three years ago I thought was impossible. A better question might be “What lies ahead for humanity?” We are definitely in the early stages of the biggest breakthrough in medicine. It’s going to be very exciting to watch this unfold and become the normal treatment for so many different diseases, not just the so called autoimmune diseases. In my opinion the “autoimmune” diseases are just the tip of the iceberg. This is going to be huge.
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.
Amy has spoken at several international conferences and authored several peer-reviewed papers on the intersection of bacteria and chronic disease.
If you have questions about the MP, please visit CureMyTh1.org where volunteer patient advocates will answer your questions. Another good resource is the MP Knowledge Base, which is scheduled to be completed within the next year.