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, 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.
31 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
hi bonnie i have had sle lupus for 7 years reading your story feet like you where talking about me it is the same way i still feel i’ve been on 15mls prednisone for the 5 years thanks to you i will be starting marshalls proctocol soon as i have to get of all meds first that will be the hard part by the sounds of it any way hope you stay fit take care robert young from tasmaina australia
Hi Robert,
This is Amy (I write the articles on this site). I’m so glad you are planning to do the MP!
All the best with your progress!
Amy
Hi.
Hi live in Tasmania Australia and would love to chat to anyone who is undertaking the Marshall Protocol.
I have recently be diagnosed with Sjorgens and RA.
My GP is very supportive of the MP and has encouraged me to learn as much as possibe from this site.
I started on Benicar last week and so far no adverse reactions but I am aware it is a long process but from what I read well worth it.
If anyone is in Tasmania Aus is interested in sharing their progress with me, please email me.
Cheers Sandy
Hi Sandy,
I’m so glad you’ve started Benicar and will hopefully be able to being taking the MP antibiotics soon.
The site that allows people to best chat with others on the MP is http://www.curemyth1.org (Th1 refers to diseases caused by bacteria, hence the name). Patient advocates monitor discussion on the site and there is no charge to become a member.
I recommend starting a post about your progress there as well.
Good luck!
Amy
bonnie,…. I live in Mckinney, but I am from Oklahoma. I would love to visit your dr. I have had sjogrens for 9 years and have been to every dr. with little sucess. I need help. I thank you for your story. I know about the A/P, and have seen a Dr. in Riverside, CA…. (no sucess) now I have Raynauds. I thank you your time and advice.
Best,
Tina
hi sandy my name is robert young i have had sle lupus for 7 years now im about to start the mp program as soon as i stop all other meds that im on are you still taking other meds other than benicar if you are you should stop for benicar to work propley its a long road ahead good luck robert young clarence point tasmaina
I wanted to comment that just because a person doesn’t test positive to an ANA test does not mean that at one point in time early in their disease they might not have tested positive. I remember reading somewhere on the site that Dr. Marshall noted that some of the people with Sarcoidosis had once had positive ANA tests and been diagnosed with Lupus only to have that test result change to a negative as their illness morphed into Sarcoidosis.
Indeed, doctors have suspected for years that I might have lupus, but I have always tested negative. Likewise, I have most of the symptoms associated with Sjogren’s (there is something called secondary Sjogren’s as well where a person doesn’t test positive to the ANA test but has some or many of the symptoms…a lot of people with Th1 illness experience some Sjogren’s symptoms). It may be that had I been tested as a kid or a teenager I would have had a positive ANA. Who knows?
All I know is I have CFS/FMS/MCS and am still very sick; however, after two years on the MP my secondary Sjogren’s has improved to a great degree. I hope for continued improvement. Indeed, I hope one day to be able to say as Amy does that I HAD CFS. Past tense.
Peace, Claire
Hi EClaire,
Thanks for sharing! Yes, I often wonder how sensitive the tests for Sjogren’s, ANA, etc really are. It seems that results can vary depending on what time the test was taken or because of other variables. In my case, I have many symptoms in common with patients who have Post Treatment Lyme Disease. I was tested for Borellia at one point. But later my illness got much worse, and I wouldn’t be surprised if had I been tested then, then result would have been positive.
The good thing in terms of diagnoses and the MP is that a specific diagnosis matters little in terms of recovery. It seems pretty clear now that nearly all symptoms of unknown cause (nearly every symptom!) stem from infection with myriad different forms of chronic bacteria that vary from patient to patient. No two people’s pathogenic load is exactly alike. Since the MP seems able to target all these different species, getting a specific diagnosis or name that labels your collection of pathogens is less important than just starting the treatment and beginning to reverse the disease state.
Yes, I am doing well! Yesterday I joined the gym. Believe me, I never thought that would happen again.
I’m glad you too are improving!
Best,
Amy
Benicar is for high blood pressure. How does this drug help?
Thanx
Hi Ruby,
Benicar (olmesartan) is used as an anti-inflammatory and a VDR agonist. Read more about it here.
Best,
Amy
Hello,
I was diagnosed yesterday with Sjogren’s by my primary care physician. I knew I either was going thru menopause, or my symptoms were alot like Sjogren’s. I am 45. My RF was 53, ANA positve with SSA/Ro ab. At this point, it is likely primary SS. I have no signs of any other disease. My father died at the age of 49 of systemic sclerosis/scleroderma. He had Raynaud’s also. I am very scared. I have an appointment with a rheum. in 2.5 weeks. I am guessing I’ll need more testing on my eyes and lip. I have read about the Marshall Protocol and find it very interesting. 14 years ago I took minocin for acne and it caused a SLE syndrome. I wonder if there is any Dr in my area familiar with the MP. If you can let me know– that would be great.
Take care, Debbie
Hi Debbie,
i am very sorry to hear about your diagnosis. However, it seems that you have been dealing with the chronic bacteria that cause Sjogren’s and possibly SLE for some time now. The fact that you reacted to minocycline with SLE symptoms is extremely telling in my opinion. As you may know minocycline is the base antibiotic used by the Marshall Protocol. When patients take minocycline along with Benicar to activate the immune response, a rise in disease symptoms is expected. This occurs because when chronic bacteria die they release endotoxins and the immune system kills them with cytokines that cause inflammation. So the fact that you got a rise in SLE-like symptoms 14 years ago in response to minocycline strongly suggests that you were killing bacteria at that point and that bacteria are still causing your new symptoms as well.
The fact that your Dad died from sclerosis/scleroderma also supports the contention that bacteria are making you ill. The following article talks about the spread of disease-causing bacteria among family members:
http://bacteriality.com/2007/10/31/family/
Luckily, patients with Sjogren’s (including my Mom) on the MP are doing really well. The MP should definitely target the pathogens causing your disease. You can request a list of doctors who administer the MP in your area at the following website:
http://www.curemyth1.org (Th1 refers to disease caused by bacteria, hence the name). The patient advocates on the site, who are volunteers, should be able to give you a list of doctors with MP patients in your area that you can try to contact.
If no doctors in your area who administer the MP are taking new patients, then you may have to get materials together in order to convince your current doctor or a new open-minded doctor to put you on the treatment. A list of Dr. Marshall’s peer-reviewed papers and presentations as well as papers and talks by other members of ARF can be found here. The list includes five new peer-reviewed papers on MP topics that were just published. We hope that they will put more doctors at east about various aspects of the MP.
http://mpkb.org/doku.php/home#publications_presentations
Good luck!
Amy
I have scleroderma and in phase 3 of MP. Not really herxing. Seem to respond as well or better when I am on minocycline in heavier doses. Would like to know who the doctor in Texas is who has scleroderma.
Hi Jane,
When you say you are not herxing does that mean that you don’t have any symptoms of scleroderma? What combinations of antibiotics are you taking? Have you ramped them to the highest dose possible? Have you tried switching Phase III antibiotic combinations to see if one combination of antibiotics is better at targeting the bacteria causing your scleroderma?
Those are just some suggestions on my part to make sure you can’t generate herx (immunopathology).
Many people also find that taking hot baths or sauna’s increases their herx. The hot bath or sauna will better perfuse blood around your body and perhaps better carry the antibiotic and Benicar into the blood vessels of your skin where they can better target bacteria associated with your scleroderma.
Often a deep tissue massage has the same effect. The massage better perfuses the tissues with blood and often exposes new tissues to the bloodstream that were previously not getting much blood. You may want to try that as well.
Of course I assume you are avoiding all vitamin D. How much light exposure do you get? Do you find that your scleroderma symptoms get worse if you get a lot of light or sunlight (if you are able to tolerate light?)
Sorry to ask so many questions! I just am curious to see if there might be some adjustments you could make to generate more herx.
As for the Dr. in Texas that Bonnie mentions, I will have to see if Bonnie reads and responds to this post. She probably doesn’t read this site regularly in which case I can try sending her an email if she doesn’t respond.
Best,
Amy
After having sle and sjogrens and going through and following through with the MP Protocol is it possible to stop the benicar and minocyline permanently?
Hi Kristin,
Indeed. Patients who have seen their symptoms resolve on the MP stop their antibiotics and Benicar without ill effect. I have been on the MP for multiple years and have seen my symptoms resolve, and I no longer experience a reaction to any of the antibiotics.
I should add that for more severe forms of illness, it takes several years to complete the MP, so it may be a while before you discontinue your medications. That said, I think it is the best decision a person can make.
Hope this helps.
Best,
Paul
Amy, I am currently switching from Zith, Mino, & Clindy to Zith, Mino & Bactrim. I was at full strength for the first 3 with no – what I would consider – a pulsing pain. I did get pain in the chest area. My lung fibrosis is clear and I am under the care of a physician who has had many sarcoidosis patients under the MP, but not scleroderma. I will try the hot baths and treat myself to a massage. Hopefully that will begin the process.
Hi Jean,
Thanks for your comment. As you know, fibrosis can allow immunopathology to sneak up on you. Be careful and try to work closely with your MP doctor!
Good luck,
Paul
Hi there, I have been suffering from vague aches/pains, debilitating fatigue, joint pain, weak muscle, considerably severe dry eyes and mouth for a few years now. I am a high school student who has just tested positive for ANA and the Schirmer’s Test (proves I have very dry eyes). I am yet to visit a rheumatologist about a diagnosis of possibly Sjogren’s Syndrome. Is it beneficial to start the MD at the early manifestation stage of the illness, or should I perhaps wait a little later?
Sorry, I ‘ve just realised my mistake-’MP’ (Marshall Protocol) instead of MD.
Hi Katia,
I’m glad you’ve been reading about the MP and are considering using it to treat your symptoms. You sound somewhat like me back in the day. Towards the end of high school I began to develop the beginning of the aches and pains that later turned into a much, much more serious illness. Finally, after college I used the MP to recover.
I don’t mean to scare you, but if you leave your symptoms untreated there is definitely a great chance that you will get worse and you don’t want that to happen. That’s why it’s so good you have found the MP now! I definitely think you should start the treatment as soon as possible. I cannot tell you how much I personally wish I had started the MP much earlier. The symptoms you describe are symptoms that a great many of our subjects have and are almost certainly caused by the chronic bacterial forms that the MP is able to kill.
Generally, the sooner a person starts the MP, the easier the treatment is. That’s because bacterial load the sooner one starts the MP. If you leave your symptoms alone now, your bacteria will continue to spread. Then, if you start the MP at a later date, you will have more bacteria to kill. Since you probably know that killing these bacteria requires a die-off reaction that can cause temporary rises in disease symptoms, you want to minimize such die-off symptoms so that you can have the best quality of life while on the MP.
So I definitely hope that at this point you start to talk with your doctor/doctors about the MP. If your current doctor won’t put you on the treatment then you should consider switching to one who will.
In the meantime, read as much as you can about the MP. Have you watched the “Overview of the MP” video? Most people tell me that the video really helps them “get” the treatment and exactly how the meds work etc. Here’s the link.
http://bacteriality.com/2008/05/07/mpintro/
If you have more questions about the MP, another good place to post them is at the following website:
http://www.curemyth1.org (Th1 refers to diseases caused by bacteria, hence the name) The patient advocates on the site, who are volunteers, will answer your questions free of charge.
Good luck!
Amy
No problem…I figured it out!