Exploring chronic disease
28 Dec 2007
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!
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.