Here is the up-to-date link for the information packet.
http://mp.ginariggio.com/downloads/PHYSICIANSGUIDE2009.pdf

For a first step, we usually recommend giving your doctor some of our peer-reviewed published papers, the full text of which is linked to here:
http://mpkb.org/doku.php/home:publications

Best,
Paul

I tried to click on the link that you had regarding printing out packet to present to doctor and this link is broken, can you find another link for me that I can further study and print out for the doctor?

Thanks Kindly.
Jackie Young

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Actually, one MP member has put together a packet of information that people can use to present to their doctor. It’s very good and comprehensive. You can either print out the document, or if you ask, she will send it to you in paper format. Here’s the link to the manual and how to order it:

http://www.ginariggio.com/MPP1PACKET/infopacket.html
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(broken link not working)

Thank-you. It is a comfort to know I am not going through this for nothing. It is also a comfort to know that your healthy mom and sis tried the MP and were able to tolerate the antibiotics. That is also a great comfort to me, i.e. that is not some trick of the combination of drugs which is causing the IP. I will continue to ‘hang in’ there.

Denise

Considering the fact that it took what sounds like ten years to begin the MP, your bacterial load is almost certainly higher than that of many other people with sarcoidosis who are currently on the MP. As long as your body is continuing to fight bacteria, you are going to fight fatigue as it is taxing your body to continue fighting these microbes.

When you ask if any of the fatigue could be due to any of the side effects of the medicines, I’m not really sure what you mean. The safety profiles of Benicar and the antibiotics are actually quite good. Here’s a few pages on the safety of the MP antibiotics:

http://mpkb.org/doku.php/home:protocol:olmesartan:safety

http://mpkb.org/doku.php/home:protocol:mp_antibiotics:antibiotics_concerns

To answer your main question, no, a healthy person would not react to minocycline and Benicar the way that you are.

Both my sister and my Mom started the MP and they were essentially healthy. They could both tolerate the highest doses of the MP antibiotics in a matter of days and reported very little immunopathology. If anything, my sister felt a bit tired after doing two hours of exercise, and my mother tends to feel okay unless she gets way too much sun. So, their reactions to the MP are so mild that most of the time, you wouldn’t know what they’re on. I’m almost confident that your symptoms are a result of your body trying to wear down your bacterial load.

I recommend hanging in there and lowering your antibiotics if your find your symptoms too deblitating.

Best,
Amy

I’m an admirer of your work. I am on the MP and in stage 3. I am having a difficult time of it, as I still have a huge amount of fatigue, although the pain has decreased a lot. I have seen the MP work for people with sarcoidosis when they have gone onto it immediately. This didn’t happen for me. I was on no treatment after diagnosis for two years. Then I was put on immunosuppressives. I guess I was on them for about 5 years before I heard about the MP. I researched the MP, but, but that time, I was too ill to work, and therefore too poor to afford to import Olmesartan. I had to wait a further three years for it to become available in Australia, and then become affordable on the PBS list before I was able to attempt the MP. I hate the idea of immunosuppressives. I wouldn’t like lymphoma, I watched my dad die of it. I know of a lady who recently died of melanoma who also had RA. So the MP was for me. However, my progress is slow compared to others, though still apparent. When we are going through the bad stuff, it is easy to start having doubts. How do we know the pain, fatigue and blood test alterations are due to immunopathology and not just due to a combination of all the drugs. Do you know what would happen to a healthy person if they took the same drugs? Would there be some reaction? I guess everyone has some microbiota. Is the pulsing of antibiotics part of the cause? If a person with sarcoid took the antibiotics on a daily basis would it totally halt immunopathology and hence, pain, weakness fatigue etc? I guess I am becoming a bit skeptical, as I don’t know what would happen in the case of a person who was basically healthy.

Denise

Thanks for the article. So now the the makers of TNF alpha blockers have to put a warning on the bottle saying the drugs may cause cancer.

I’m not sure if this does anything for children or adults suffering from autoimmune conditions in which their doctors think that TNF-alpha drugs are still “beneficial” because they can suppress the immune response.

I’m sure doctors will continue to prescribe these drugs despite these new warnings because they are unaware that they have other treatment options.

So it’s very important that the scientific community starts to really appreciate that bacteria and other pathogens are causing the inflammation they incorrectly attribute to an “autoimmune state.”

Reading this article only makes me want to work harder! There are a lot of researchers besides those of us at ARF who recognize bacteria in autoimmune disease. Hopefully our research will continue to spread as fast as possible so that children are offered the chance to recover from their autoimmune condition rather than being forced to take such terrible drugs.

Best,

Amy

Where are the doctors who are willing to offer this life-giving protocol to these little ones who are suffering needlessly!!!!

What good news! I hope your daughter continues to make more and more progress!

Yes, the image of so many young women hooked up to IVs of what are likely only immunosuppressant drugs makes me cringe too. I remember what it was like to live from relapse to relapse with no hope of real improvement and I expect their health follows a similar trend.

Take care,

Amy

Amy and I are so glad to hear of your daughter’s improvement and that you were able to learn about the MP in time for it to count.

I believe the report your looking for is linked to here, on the Knowledge Base article on anti-TNF drugs:
http://mpkb.org/doku.php/home:othertreatments:antitnf

Hope this helps.

Best,
Paul

My daughter’s dx is idiopathic uveitis and negative for both ankylising spondilytis (sorry for the spelling errors) and JRA.

This News Flash came out at just the time I needed it. At our June08 appointment with a rheumatologist, he advised my (then)17 yo to try remicade or humira, after ill-health prevented full compliance with methotrexate.

Prior to that (in March08), our visit to an eye specialist in Boston proved to be most disappointing; however, since we had discovered the MP in January (two months earlier), we were not without hope, even though we thought we might have to search a long time for an MP supportive physician.

What did seem hopeless, though, was the sight of the young mothers and teens we saw hooked up to IV’s (presumably remicade).

BTW, in contrast to her declining health on steroid eye drops and MTX, she has experienced the biggest improvement in her health since starting the MP in Aug08. She’s had hypothyroidism since age 11 and can never really remember the feeling of good health until now, thanks to the MP!!!!

Finally, Amy, where can I find the results of the FDA’s findings to this review last June through November?

A happy mom, Carol