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Interview with Bonnie B – lupus, Sjogren’s Syndrome
Posted By Amy Proal On July 2, 2008 @ 1:50 pm In interview (patient),marshall protocol | Comments Disabled
Several years ago, this grandmother from Oklahoma was forced to quit her job due to debilitating symptoms including chronic pain, fatigue, and extreme dryness in her eyes and mouth. But today, after 2 1/2 years on Autoimmunity Research Foundation’s Marshall Protocol, she feels like a completely normal person again and is spending much more time with family and friends. Meet Bonnie B.
I first started to feel symptoms of illness when I was in high school. I suffered from fatigue, weakness and joint pain. Yet, the symptoms were rather vague and only flared periodically.
In fact, they stabilized for the most part until I had my first child when I was 23. At that point, the same symptoms returned, but this time they were stronger. They were also accompanied by new central nervous symptoms such as blurry vision and dull headaches. An EEG test showed that my brainwave function was off balance.
But in a few months, the symptoms started to wane again in an on/off fashion. They would either flare or not be much of a problem. During the times when my symptoms weren’t flaring, I would try to push the idea of disease from my mind and considered myself healthy. Yet by the time I reached my late 30s, the pain and symptoms started to become more prominent and started to become constant. The fatigue and weakness were severe.
At that point I had just stopped attending nursing school. During one of my nursing clinicals, I had treated a woman with lupus. As her caretaker, I was required to do a case study about the disease. As I researched lupus, I was struck by how many of my own symptoms resembled those of my patient. I was also flabbergasted by the fact that her disease history was very similar to mine.
I had started seeing several doctors in an effort to understand why I was feeling so ill. I mentioned the fact that I might have lupus to my doctor and it turned out that he had also been considering that possibility. He ran an ANA (anti-nuclear antibody) test. Positive results to the test strongly suggest a patient is suffering from lupus. My test results were positive, and since I also displayed essentially all the symptoms of the disease, I was officially diagnosed with lupus.
Around the same time, I saw an eye doctor. I had gone to see him partly because my eyes and mouth were incredibly dry. It turns out that dry mouth and dry eyes are classic symptoms of Primary Sjogren’s Syndrome. Thus, I was also diagnosed with Sjogren’s.
My doctors insisted that corticosteroid medications could help my conditions. I started a month of heavy high-dose IVs containing the steroid medication medrol. At the same time, I was also put on another steroid medication called methodextrate. After a month of intensive IV therapy with medrol I began to take it orally, and did so, along with methodextrate, for the next 12 years. I now understand that while these steroids may have temporarily lowered the inflammation generated by the bacteria causing my symptoms, the fact that they slowed by immune system allowed the same pathogens to spread with much greater ease, making me much sicker over the long-term.
So as time wore on I got worse, and in the process, became increasingly cognitively impaired. I suffered from a high level of brain fog. I started to have trouble coming up with the correct word when writing or speaking, and also had problems reading because words didn’t seem to register anymore. This meant I could no longer enjoy reading, which was difficult. I also suffered from short-term memory loss.
Despite extreme difficulty, I continued to work as a teacher. But during the early 90s I started teaching under very stressful conditions. I began to suffer from extra fatigue and joint pain. I also started to have TIAs or “mini” strokes that can sometimes be followed by an actual stroke. Finally, all my symptoms flared so badly that I had to quit my job and go on disability. The symptoms hit me all at once and harder than ever. I felt really terrible.
At the time I was seeing a doctor in Texas who was really knowledgeable about cutting-edge medical treatments for lupus. For a while he had me on an antibiotic therapy called the RoadBack Protocol. Like the MP, the treatment uses pulsed, low-dose minocycline. But without the help of Benicar and the other bacteriostatic antibiotics used by the MP, I was unable to fully target my bacterial load.
Then, one day, my physician informed me that he had learned about the Marshall Protocol. He was really excited about it and had come across the treatment in an effort to treat scleroderma – a skin condition that he suffered from. He planned to start the Marshall Protocol himself and also prescribed me the medications necessary to begin. I started the MP about 2 1/2 years ago.
After some time, I was forced to switch physicians, in part because I wanted to see a doctor who practiced closer to Oklahoma, where my husband and I currently live. I found another MP doctor in Oklahoma through the MP study site and he has proven to be extremely helpful and knowledgeable.
Since I had been taking corticosteroid medications for 12 years, and the medications were slowing the activity of my immune system, I needed to stop them before starting the MP. I was surprised that a few ups and downs aside, I was able to wean off them without too much anguish. I definitely felt an increase in my disease symptoms as I weaned off the steroids, but it was livable and I was able to “hang in there.” I have a strong feeling that the reason I was able to wean off the steroids with such success was that I took Benicar as per the MP guidelines during the weaning process. The anti-inflammatory effects of the medication surely made it easier for me to tolerate the heightened level of symptoms that resulted when my immune system started to “wake up” again and begin to combat the bacteria making me ill. After the weaning process was complete, I spent several months stabilizing on Benicar alone before starting the MP antibiotics.
Within six months of starting the antibiotics, I felt a bit better in the sense that my fatigue and weakness were not as bad as before. My sense of overall wellness also improved at that point. My immunopathology (bacterial die-off reactions) fluctuated as expected, depending on my antibiotic dose and the combination of antibiotics I was taking at any given period of time.
I’m on Phase 3 of the MP and almost feel like a completely normal person again. I have resiliency and energy for the first time in years.
For as long as I can remember, I’ve had a housekeeper come to my house to do the cleaning for me. Now, I have started to do all the cleaning on my own again. I do all my own shopping again too. There are many other little things I’m able to do now that I haven’t been able to do for a very long time. I’m able to travel much more easily. I go on more vacations and have been able to visit my children frequently.
The results of my ANA tests have been negative the last few times when it was checked, strongly suggesting I no longer have lupus. Of course, before I started the MP the test results were positive. My eyes and mouth feel more moist and I doubt that I’d qualify for a Sjogren’s diagnosis anymore either.
I also feel much more alert and I certainly don’t have the degree of brain fog that I had when I started the MP. Any central nervous system symptoms are minimal if present at all. I can finally enjoy reading again and can spend more time on the computer.
I was already light-sensitive for years before starting the MP. When I started the MP, I continued to stay out of sunlight and bright lights. It’s hard to judge how much my light sensitivity has improved because I’m still cautious about not getting too much light, but it doesn’t seem that light bothers me as much anymore. There have been several times when I’ve been exposed to sunlight, yet failed to react with the increase in symptoms that I would have expected before the MP. We just got a new puppy. I’ve been taking him on more walks outside during the day and have not been bothered by the light at all.
Two appointments ago he told me that all my lab work indicates that I’m recovering. He said that the MP is clearly helping me.
The MP seems daunting at first, especially because of the dietary and sunlight restrictions. But it’s so worth hanging in there! Right now I can function better than I have in years, better than I could when I was younger! Oh, it’s so worth it! I know the hard part is behind me and I’m enjoying life again.
I see no limits to my ability to recover and hope to become increasingly active. I also hope to share the story of my success on the MP with as many people as possible since I firmly believe the Marshall Protocol is the answer for illnesses such as lupus, Sjogren’s and other inflammatory diseases.
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