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Interview with Roy P. – sarcoidosis, rheumatoid arthritis
Posted By Amy Proal On June 3, 2008 @ 10:03 pm In interview (patient) | Comments Disabled
In 2005, this father of seven could hardly breathe and suffered from intense joint pain. Exhausted and sore, he found it extremely difficult to walk up the stairs. Now, after about 2 1/2 years on Autoimmunity Research Foundation’s Marshall Protocol he’s essentially pain and symptom free and is back to digging trenches in his garden. Roy P. will now take your questions.
Everything started around Christmas of 2000. I was at work when my legs started to swell down in the area by my ankles. I was also in pain, couldn’t walk, and had a very difficult time breathing. A co-worker called my wife who took me home. We saw a doctor and I was diagnosed with rheumatoid arthritis. However the doctor still wasn’t able to explain why my legs were swollen, or why I was suffering from other severe symptoms. Personally, I thought I was having a heart attack. At that point I asked, “Do you think any of this is related to the lumps I have under the bicep of my right arm?” He paused, and said, “What lumps? Show me.” After examining my arm he said “Wait a minute, I know what else you might have….sarcoidosis!” I proceeded to have a series of lung X-rays done which confirmed that I did indeed have the disease.
My doctor told me that one of two things would happen to me. Either the disease would fizzle out on its own (something I now realize does not happen) or I would die. His only solution at that point was to put me on prednisone, a corticosteroid medication that works by slowing the activity of the immune system. While this causes short-term palliation by slowing the number of toxins released by the bacteria that cause sarcoidosis, I now realize that the drug actually allowed the bacteria at the heart of the disease to spread.
Because of its immunosuppressive effects, when I first started prednisone, I felt like a million bucks. But then, not surprisingly, I started to gradually feel worse again. More symptoms appeared and I started to suffer from severe fatigue. I had such a hard time breathing that I literally couldn’t do anything – any form of mild exertion caused my breathing to go totally out of control. My energy level was at a minimum.
At that point I started to use the Internet in order to research sarcoidosis on my own. I found sarcinfo.com- the precursor website to the Marshall Protocol study site. I learned that Marshall’s molecular modeling research had allowed him to create a new pathogenesis for chronic disease which implicated bacteria as the cause of the illness. The moderators on the site also explained how prednisone was negatively affecting my immune function and based on their advice, and my doctor’s subsequent permission, I stopped taking the medication.
Three months later, I saw a pulmonologist who tried to convince me that there was no connection between vitamin D and sarcoidosis, and that sarcoidosis has no known cause. He was functioning from the older body of medical knowledge and refused to even review Dr. Marshall’s new discoveries. But at least he didn’t force me to go back on prednisone.
Over the next few months I continued to feel worse. New body aches appeared and I started to develop headaches after exposure to bright light. I also started to suffer from increasing amounts of brain fog and short-term memory loss.
It was so bad that at this point I can’t remember very much to tell you about my symptoms at that time….or what my brain fog was like! All I know is that it was bad and I started to have an ever increasingly hard time at work.
Well, due to a takeover of my company, I stopped working and decided to go back to school instead. I managed OK because the department chair and secretary knew about my illness and were very accommodating. Some days though, it was extremely hard to get out of bed and go to class. Luckily, I only had classes 2-3 days a week. I did well in spite of my symptoms, but today I have to admit that I don’t remember a single thing I was taught.
After I graduated from school, I went back and took another look at sarcinfo.com. This time, the moderators on the site sent me over to marshallprotocol.com which had evolved into the main study site. After reading even more about the treatment I decided to finally give it a try. I started in September 14th of 2005 when I received my NOIR’s (sunglasses that block UV rays).
It was tough because around the same time I started the MP I had to go back to work. I worked contract jobs. I had to take a few days off because my immunopathology (bacterial-die off reaction) was very strong, but I managed. One time I accidentally took too high a dose of one of my antibiotics and felt terrible. After that experience, I was extremely careful to make sure I took my antibiotics correctly.
In fact, my advice to anyone who has to work while on the MP is to very careful and deliberate about taking your antibiotics and Benicar. Write everything down, such as when you need to take a dose of medication and keep track of your antibiotic levels on paper. I keep a weekly pillbox loaded with all the Benicar and antibiotics that I will need and put the drugs into the pillbox during a time when I can work slowly in order to make sure the pills are correct.
I have a Palm Pilot alarm that alerts me when I need to take a new dose of Benicar. It also alerts me as to where I am in my antibiotic cycle so that I am always on schedule and never forget to take the meds. I’ve found that if my immunopathological reaction is too strong, I can use extra Benicar to tone it down, so I keep extra Benicar handy. I also carry around a big bottle of ibuprofen (which is not an MP medication) because I find that it can help control my swelling (inflammation) in an emergency.
One of the hardest parts about working while on the MP was the fact that I needed to block light while my co-workers did not. Everybody else wanted the bright lights on, and it was hard to come off as a weird batman type that would prefer them off. But I made sure to communicate my need for light restriction to my boss who did allow me to switch off the lights over the row where I sit. So that’s been a help.
I was so sensitive that even when I was indoors wearing sunglasses and all the lights were off except one tiny light, I felt as if I could see everything perfectly. At night when driving, I could wear sunglasses and see every detail on the road. It was almost as if I had developed night vision. Today my light sensitivity has improved tremendously to the point where I can’t see anything in the dark if I’m wearing sunglasses. I only need to wear sunglasses when I’m outside in the bright sunshine. Sometimes I garden all day while wearing only long sleeves, a special cap, and gloves and get no sun-related symptoms.
I’m feeling so much better. I’ve been able to ramp my way up through the highest level of each antibiotic combination on the MP and still manage the immunopathology. Even while on high doses of the antibiotics, I find that my breathing is dramatically better.
I need to walk up fifteen stairs to reach my bedroom. Before the MP, I couldn’t walk up all the stairs. I would have to stop halfway up, rest, and then continue. Now I go up and down the stairs many times a day without even thinking about it. Sometimes my breathing still gets a little heavy, but it’s nothing like it was before.
My fatigue is largely gone; literally it is nothing like it was pre-MP. Occasionally I feel mild fatigue but it is always correlated to a difficult time in my cycle of antibiotics. Now, I am always busy. I’m always working and doing something, whether it’s working in the office or working out in the yard. Before the MP I couldn’t garden at all. Now I can dig trenches and put in sprinkler lines.
My arthritis/joint pain is much, much better. I guess I still might feel it now and then but I’m hardly conscious of it. My brain fog and memory has improved tremendously, although one of the MP antibiotics is still able to elicit occasional moments where I experience episodes of blurry vision. But I know the symptoms are just a result of my body killing bacteria and I’m confident the blurry vision will go away completely in the coming years.
Overall my quality of life is just so much better. My whole attitude is better. I am more emotionally stable and I can handle much more stress. Things don’t bother me the way they used to – overall, I’m a much calmer person.
Unless I have a bad day of immunopathology, I am almost pain and ache free. If I do have pain, it’s generally fleeting. Before the MP all I could think about was my pain. That, and what to do about my life and how to support my family. Now I hardly ever think about my symptoms at all.
I have seven kids, and I’m once again able to be a very active parent.
My children have actually been a source of help during my time on the treatment. In the beginning it took them a while to get used to the fact that I was very sensitive to light. They would accidentally flick on a bright light and then say, “Oh whoops! Sorry Dad!” But then I actually enlisted their help. The little ones would go around turning lights off. We changed the bulbs in the house to 40-watt bulbs to cut down on brightness.
Oh yes, my wife and I sat them down and explained what the treatment entailed. We explained that I would feel worse before I would feel better, and that I would need to avoid bright lights. They were very understanding and accepting of my circumstances.
Oh yes. I love to read. Mostly non-fiction; math, science, religion, the founding fathers are some of my favorite topics.
I look forward to getting back to the outdoors and going camping, fishing and hunting again. Those were all activities that fell by the wayside when I got sick but I think I can start to enjoy them again now.
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