2 Jul 2008
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. So 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 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.
9 Responses for "Interview with Bonnie B - lupus, Sjogren’s Syndrome"
This is really interesting news for me as I just came home from Hospital and tested positiv for ANA- Sjøgren and have dry mouth/eyes/skin, joint pain, muscle pain, brainfog + the whole bunch of the other crap…
Waiting for biopsi in end August/September and will start the MP as soon as the results are ready.
Thank you for the interview!
Hi Martin,
Yes, thanks to Bonnie for sharing her story. I hope you can start the MP soon and I look forward to hearing about your recovery as well.
Best,
Amy
Bonnie: Great story. I am on the RBF protocol for 41/2 y and have done well. My Texas physician retired two years ago and I would like to find another informaed physician. Would you please send the names and contact number for your Texas and Oklahoma physicians. Thank you so much.
Bill
Thanks for your story, Bonnie. I know that I would want to help others if I can manage to find a cure.
I was recently diagnosed with Sjogren’s.. I don’t have any pains in my joints, just dry eyes and mouth. Is it worth trying minocycline or will the drugs do more harm than good for me?
Joi
Hi Joi,
This is Amy (I write the articles on this site). Perhaps Bonnie will also respond to you, but I want to chime in.
The MP antibiotics are taken at such low doses that their side effects, if any, are essentially null. Read more about their safety here:
http://bacteriality.com/2008/02/23/misconceptions/#3
The only other drug taken by patients on the Marshall Protocol is Benicar which has an excellent safety profile. Read more about the safety of the drug here (you will need to take Benicar in order to potentiate the antibiotics):
http://bacteriality.com/2008/02/23/misconceptions/#2
The side effects of doing nothing to treat your Sjogren’s or using steroids only to “cover up” the symptoms are the disease are that the illness will inevitably get worse. The bacteria that cause Sjogren’s may also very well spread to other parts of the body where they can cause other new symptoms and even new diseases.
So I definitely think you should take action and use the Marshall Protocol to reverse your disease. The Masrhall Protocol is part of a phase II study monitored by the FDA. This video provides a good overview of the treatment and the science that forms its backbone:
http://bacteriality.com/2008/05/07/mpintro/
My mother had Sjogren’s Syndrome and has been on the MP for about 2 years. She is asymptomatic as well. Her eye doctor simply doesn’t know what to think!
After reading as much information as you can on this site about the Marshall Protocol and on the study site itself (www.marshallprotocol.com) if you have questions about the treatment ask them at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria) The patient advocates at the site will answer your questions free of charge.
All the best,
Amy
I have a very similar story and I just can’t seem to get the help I need with my Sogren’s that I’ve been dealing with for 8 years now…I live in CO. I am 29 years old. Does anyone have any suggestions about how I can find a doctor who actually knows something about this autoimmune disorder and can help me rather than just continue to dish out anti-biotics after each Parorid swelling flare up I have?
I’d love any direction someone can give…
Thanks,
Joy
Hi Joy,
I’m sorry to hear about your illness. The progression of your disease may have been similar to Bonnie’s but there is one main difference between the two of you - she has recovered from Sjogren’s thanks to a novel treatment called the Marshall Protocol.
The Marshall Protocol (MP) is part of an open internet phase II study monitored by the FDA. The study is currently closed due to high demand, but since the treatment guidelines have been made public online you can still do the treatment alone with your doctor. If you wish, you can get on a waiting list to become a member of th official study so that eventually you will have access to 24/7 counseling by nurse moderators.
But all you really need to get started and begin to reverse you illness is to find a doctor willing to prescribe the necessary MP medications. MP patients take a medication that activates the innate immune system (Benicar) and carefully chosen, pulsed low-dose antibiotics to gradually kill the intracellular and biofilm bacteria that cause Sjoren’s and other autoimmune diseases.
The following articles describe the MP in greater detail:
http://bacteriality.com/about-the-mp/
http://bacteriality.com/2007/10/11/antibiotics/
I also recommend watching the following video which gives a good overview of the MP and the science that forms its backbone:
http://bacteriality.com/2008/05/07/mpintro/
If you decide that you want to do the MP, then it is important to find a doctor who is willing to learn about the treatment and follow the guidelines correctly. There are other MP patients in Colorado and perhaps they can refer you to their doctors.
The best way to try to contact such patients is by posting about your situation at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria). The patient advocates on the site will answer your questions about the MP free of charge and perhaps be able to help you find a doctor.
Meanwhile, read as much as you can about the treatment - both on this site and the study site itself - http://www.marshallprotocol.com.
Best,
Amy
Thanks, Bonnie for your story, and I wish you so much success.
I have Lupus, sjogrens, and Raynaults . They have had me on Prednisone now for a year and a half. I have to admit the joints are better, but I now am covered with what they call “Lupus Lesions”
they are horrible. I am so ready to find someone in the Fort Worth area who is familiar with the Marshall Protocol, to see if I could be a canidate. I am also a Breast Cancer survivor. The cancer hit me three months after being diag. with Lupus. With the Imune system being compromised, the cancer came
came running.
I Thank you for this indo, and I will study the MP website.
Bee
Thanks for your comment, Bee.
No good can come out of long-term prednisone therapy. If I were you, I would do whatever it takes to get on the MP. Educate yourself, and, if necessary, educate your doctor. I have lots of helpful links in the comment just above yours. One of those links is to CureMyTh1.org. You’re definitely going to want to set up an account there.
Good luck!
Best,
Amy
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