Exploring chronic disease
19 Jun 2008
Sick ever since childhood, this resident of New Jersey finally hit rock bottom after developing diabetes and becoming blind in one eye. Not to mention the fact that by the mid 80s his bowels were seriously affected and sarcoidosis had spread throughout much of his body. Yet, after several years on Autoimmunity Research Foundation’s Marshall Protocol, this grandfather has largely recovered from each of his diseases, to the point where he is barely conscious of symptoms and has extra time for work and play. Meet Chris Eastlund.
Things first started to go wrong when I was around 8-10 years old. I spent an entire summer just sleeping on my grandmother’s couch. I’m told I was only awake for about four hours a day. I now realize that such fatigue is one of the symptoms of pediatric Lyme, but when I was taken to the Mayo Clinic I was told nothing was wrong with me.
I pushed on, but could never play endurance sports. I could never run for even 1/4 of a mile before having to stop. At first I thought I could join the cross country team and train my body to handle more exercise. While running I would feel better, but then a few hours later, I would suffer from feelings of fatigue and soreness – what is often referred to as post-exertional malaise.
The first severe incident I experienced, which made it clear that something was drastically wrong with me, occurred during the summer of ’83. I was driving home when my neck completely locked up. I couldn’t turn my head at all to look at the traffic coming at me from other directions. However, the issue resolved somewhat over the weekend so I decided to dismiss it as a summer flu.
But a month or two later, I was forced to go to the doctor because I was running a 103 degree fever. The doctor did a few tests and said, “I’ll meet you across the street at the hospital.” When I got there, the fever had risen to 105 degrees. I was in isolation for about a week, until they figured it wasn’t contagious because I hadn’t died yet.
During that week, and over the next couple of weeks, the fever often bounced back up close to 105, with the peaks slowly decreasing. To control the fever, the nurses gave me large quantities of aspirin. The aspirin decreased the fever, but only after generating an hour or two of cold sweats, which left me drenched. When the aspirin wore off a few hours later, the fever would soar again. I would begin to shudder uncontrollably from the chills for another hour or so. I was miserable and the experience was extremely exhausting, since I was continually alternating between chills and bed-soaking cold sweats.
After about three weeks in the hospital, the fever seemed to be tapering a bit, and the doctors didn’t know what to do with me, so I was sent home. Nevertheless, I didn’t experience a fever-free day for the next six months. Even after that point, the fever would come back about monthly, although not as intensely. In retrospect, it seemed very similar to a tick-bourne relapsing fever. I was living in Minnesota before the fever incident, and doing a bit of canoeing in the boundary waters. So I could have definitely acquired a wide variety of bug bites during that time.
I went again to the Mayo Clinic, where the doctors again could find nothing wrong with me. All I could do was try to push on. Soon, my family moved to New Jersey where I began a new job. One day I ate a very nice, fatty, Reuben sandwich and realized that the meal caused my fever to return. After that, I continually noted that my symptoms would flare after eating fatty foods. Any fatty food would trigger both fever and bowel troubles.
Soon, I developed a serious case of irritable bowel syndrome and was officially diagnosed with the disease. It got worse and worse, to the point where there was bleeding in my stools, and daily painful cramping. The fevers kept returning, and the hospital trips got more frequent. I got used to things like celebrating my birthday in the hospital.
Then, during Thanksgiving dinner of 1988 (or thereabouts), I tried to stand and realized I couldn’t get up. When I stretched my leg out, I realized I had a large lump on my calf that was about the size of a robin’s egg. My doctors thought it might be cancer so they cut it out. It turned out to be a huge granuloma. My doctors had never seen anything like it and I was later informed that my case was the featured discussion in the Monday physicians’ meeting.
A sarcoidosis “expert” weighed in on the issue and said the granuloma was too “strange” to be caused by sarcoidosis,” and a negative Kveim test (a skin test used to diagnose sarcoidosis) seemed to support his view. So I was left without an explanation. During the years that followed, I was paranoid that a similar granuloma could grow on my heart and simply kill me. That’s why I sometimes have to calm myself down when I talk to people with inflammatory disease. My own experiences have made it clear that these diseases can be deadly.
The fevers began to occur again and I desperately wanted to get admitted to the hospital in order to get more testing done. But my fevers only last about 4 days. Since it took several days to consult a doctor in order to get admitted, I could never maintain the fever long enough to get in. So I scratched my head and thought, “I’ll make myself so sick that they will be sure to find something wrong and admit me to the hospital.” I proceeded to drink and eat as much fat as possible. I downed whole milk and every fatty food in site. It worked. I was royally sick. At that point I didn’t even care about making myself feel bad. I was so used to pain and symptoms that extra symptoms almost didn’t even matter anymore. When they finally got around to doing a bone marrow biopsy, I’m not even sure they needed anesthetic. It was painful but I didn’t care.
The biopsy revealed more granulomas and this time my doctors enthusiastically told me that I did indeed have sarcoidosis. It felt good to have a diagnosis because for the previous 7-8 years I had just been drastically ill and scared out of my wits with no explanation. In 1991, I was put on the corticosteroid medication prednisone.
The short-term palliation made me feel a little better, so in ’96 I decided to try going on a church ski group outing with my son. I was careful not to overdo the physical activity. After skiing I walked away tired and not hurting. But then two days later, I started to feel much worse. I got so ill that I could barely walk and could only manage a slow trudge. I tried controlling my symptoms with Motrin, but when I stopped the medication, I realized that my body was in severe pain. My legs were also covered in thumb-print sized red spots.
My wife had to borrow a wheelchair to take me to the hospital. Another biopsy was performed. This time it revealed sarcoidosis in the blood vessels of my leg. At that point I realized that once a person is infected with the Th1 pathogens, any repair attempt by the immune system simply introduces more of the bacteria.
I depended on the palliative effects of prednisone to function. Often I had to raise my dose all the way up to 60 mg. I knew the drug was compromising my immune system and had a plethora of side effects but I needed some sort of a life. I stayed on the prednisone and decided to plan a trip where my son, my cousin, and I could simply float down a Wisconsin river on a raft. We specifically chose a quiet river, so that the trip downstream would require little exertion. Nevertheless, a day and a half into the trip, I became symptomatic once again. The malaise was intolerable and I suffered from aches and pains in my muscles. I had no energy whatsoever – certainly not enough to cope with any mistakes on the water. I also couldn’t think straight, and thus became a liability to the group. We had to bug out and thumb a ride back to the cars.
After returning home and doing nothing but resting, I felt somewhat better. The next time I tried to do any form of physical activity was in 2003. After my brother’s funeral, some of us went out in 30 below weather to shoot clay pigeons. My symptoms immediately flared again.
It was then that I realized exactly how little it took to put me over the edge. I was so ill that even the most mild forms of exertion could make my symptoms intolerable. Anything I did seemed to put me in danger. Around that time, I was also diagnosed with diabetes. I felt dizzy and extra fatigued. A lot of things seem to be failing. I developed retinopathy, a condition in which the eye leaks fluid, and will cause blindness if uncontrolled. My eyes were so affected that I started going blind in one eye. My cholesterol and triglycerides levels had also soared and my PSA, which measures prostate function, was out of range.
At that point, I took inventory and realized just how ill I was. A year or so before, I had come across the website Sarcinfo.com, the precursor website to what is now the Marshall Protocol study site. The science on the site had caught my attention. But at the time, one of our sons was still living with us and I thought I should wait to start the treatment until he had finished his final year at school. But once the blindness and the retionopathy began, I realized that I was not looking at very much fun for the rest of my life, or necessarily a very long one. I took the plunge and started the Marshall Protocol. My family and friends teased me but I stuck with it. My kids were sure I’d gone off the deep end and had joined a cult.
It took me six months to get through phase 1. I was basically miserable the whole time but tried to work for the first three or four months. That didn’t go so well, so I combined vacation and holidays and took the last two months of 2004 off. I spent nearly the whole time on the couch. When I first ramped my minocycline up to 50 mg, I spent a couple hours every other day shaking as a result of the bacterial die-off reaction. But I pushed ahead because I had the feeling that if I could get through phase one, the other phases would be easier to manage.
This proved to be partly true. I did feel better during phase II, but I still had to take days off work, and wasn’t that productive. I finally managed to talk my company into giving me a few months of disability which allowed me to rest more and better manage my immunopathology. One of the phase three antibiotics threw me for a loop for a period of time, particularly by inducing bacterial die-off in the brain. But I was always aware of the fact that I was killing the pathogens making me ill, and with each year on the treatment, particularly after year three, the die-off became easier and easier to tolerate.
One of the phase three antibiotics also temporarily brought back symptoms of depression. I had seen a doctor for depression during the time when I was suffering from my severe fevers, but thought that my depression was just a result of coping with extreme illness. But I now realize that at least part of my depression related to the presence of bacteria, as symptoms of depression did return with my immunopathology. Once on the MP, I went through a long period where I had great problems making decisions. Sometimes I would wake up feeling paranoid. Now those symptoms are gone. So I don’t have to take Valium anymore (I used to take it in order to manage the mental symptoms). The fact that my performance reports from work are coming back with higher scores definitely shows I’m making better decisions.
I have completely recovered from diabetes. I used to have a meter that allowed me to measure blood sugar and I gave it away to my brother. I also have no more retinopathy, though some permanent damage remains. My blood sugar is normal and I have no problems when consuming carbohydrates. No more fuzziness or dizziness. In fact, I have almost lost my taste for sugar. If I eat too much sugar it actually seems overly sweet.
I never have a fever anymore. My irritable bowel syndrome has resolved to the point where I feel only occasional mild exacerbation of symptoms if I take one of the phase three antibiotic combinations. I haven’t had a test to confirm that I no longer have sarcoidosis, but my inflammatory markers have come back into the normal range. My SED rate has dropped and my IGG levels have started to come back up.
My fatigue has vastly improved and my energy level is up. Pre-MP I started to get poor ratings on progress reports from my boss. Now, the ratings have gone up due to the fact that I once again have energy to dedicate to my job. Before the MP I would be exhausted at work before 5:00 pm and have to rest on my desk just to have the energy to make it home. Now, on many nights, I have the energy to work late in order to complete extra projects.
Before starting the Masrhall Protocol I was constantly plagued by my symptoms and always fighting through them. Now, unless I get too much sun, I barely think about them. If I do feel a little tired, an extra Benicar allows me to bounce back.
Several years ago I was forced to miss my son’s graduation because I was so sick, but now I can look ahead at upcoming events and have no doubt that I will be able to attend them. I was just at a wedding that I thoroughly enjoyed. When I get back from work these days I still have some energy, and I can play outside with our grandchild as long as I wear a hat, zinc-oxide sunscreen, and gloves. My endurance isn’t up to wilderness travel yet, but I’m pretty sure I’ll work up to it.
I forgot to mention before that in my 20s, during college, I started to have back problems. My back would go out and I would feel like an old man. I tried to get into bowling (a relatively mild sport), but couldn’t stick with it because my back or arm would go out, leaving me suffering for at least three weeks. Although I still haven’t gotten back to bowling regularly, now when I bowl, I walk away without pain. I should mention that both shoulders froze up at different times during the MP. However, the physical therapist was surprised at how quickly and completely the problem resolved.
When it comes to exercise, I feel much more resilient but I don’t push myself. Since I never really was able to exercise before in my life, I don’t have any form of exercise to return to, but hope to do more camping and outdoor activities in the future.
I’m essentially reversing 50 years of illness, so I occasionally kill new colonies of bacteria that appear when my strengthened immune system wears away at fibrotic tissue. For example, a week ago I was going up the stairs when I had to stop because my ankle felt funny. For two nights it felt as if it had been twisted. I was probably killing pathogens that had been embedded in the fibrotic tissue of the ankle. So although all my symptoms have largely resolved, I still have bacteria left to kill.
Before starting the MP, I was already very sensitive to light. In 1987, I took a trip to the Virginia coast with some friends. I already knew I was sensitive to the sun so I brought a beach tent. I didn’t get sunburned, but nevertheless, that night I developed the chills, shakes, and a mild fever. I proceeded to shake for the entire day that followed. It was the first time I realized that sun exposure can really flare the symptoms of Th1 disease.
Once I started the MP, I still had to be careful about avoiding sunlight and also wore sunglasses indoors when the lighting was bright or when I was on the computer. After witnessing the fact that I would start to physically shake after meetings in a sun-filled room, my boss was nice enough to move our group meetings into a room with no windows. My management was also OK with the fact that I wore sunglasses at work.
Today my light sensitivity has improved tremendously. I no longer wear sunglasses around the house or when on the computer. I used to wear a desert hat that wrapped around my face in order to avoid sun. On my last trip, I didn’t take it with me and held up just fine. If I drive off without the 2% NoIR glasses, I can get by with the 10%, though I haven’t done that enough to not be anxious about possible light flares.
It was extremely difficult to gather the will to ask a doctor to put me on the Marshall Protocol at a time when I was so beaten down by both my symptoms and the medical community. I had to go against everyone’s advice and say, “I don’t care what you think, this is what I know I have to do!” After all, once into the MP, I had periods of very difficult immunopathology, but I could tell the treatment was working. So it was that time – when I was at such a low point in life, yet had to step up to the plate and get a doctor to prescribe the MP medications – that was the hardest.
The second hardest part about the treatment was experiencing periods where my bacterial die-off reaction was constant. When I went through such periods, it was sometimes hard not to panic, and those around me would also start to panic just from watching me. Convincing them, and myself, that I was still doing the right thing would have been impossible without the help of the board moderators on the Marshall Protocol study site.
Do the treatment the way it is spelled out. Any time I tried to do anything that varied from the treatment guidelines I got burned. Also, don’t push yourself too hard, there is no need to experience intolerable immunopathology. I also encourage people to start the Marshall Protocol as soon as possible, at the very first sign of disease symptoms. I wish I had done the treatment earlier. It’s important for people to realize that the sooner one starts the MP, the easier it is to do and the shorter the recovery period becomes.
It’s frustrating, because I’ve tried to talk my kids into doing the Marshall Protocol but they seem to be waiting until they hit rock bottom to start it. Happily, my wife has started the treatment. She was recently diagnosed with Lyme and arthritis, and her vitamin D ratio is worse than mine was. She’s 18 months into the MP and seeing decent progress. But one of my sons has Lyme disease and has decided not to do the MP. I am disappointed in his choice.
Sometimes people want to know why the MP takes so long. I ask them, “How long does it take to treat tuberculosis?” It can take decades to treat TB, so treating disease symptoms that have plagued me during my entire life is not going to happen quickly.
Well, my wife and I finally have the energy to get our kitchen redone – a project which will require quite a lot of lifting and moving boxes of stuff. It feels good to be investing in our future, something I barely thought about before the MP. I have more gumption and I am enjoying just living as a healthy person. I plan to try adding more activity to my life. We have our second grandchild on the way, and I look forward to spending time with the new child.
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.