Hi, IamLianne, and welcome to this community of great people. I was diagnosed with PM in 2008, and then with overlapping DM and Lupus in 2011. Although I was on prednisone for 3 years, I have been off it for a year. I, too, am on a gluten-free diet and will stay GF for the rest of my life, as gluten definitely raises my inflammation levels quickly--within 30-60 minutes.

As for the antibiotic protocol, I did research online immediately after my diagnosis and even ordered a book entitled "The Arthritis Breakthrough" by Henry Scammell. I wanted to try the antibiotics, and gave the book to my new (at the time) doctor. She was familiar with antibiotic protocol for other disorders, but had never used it on any rheumatoid diseases, so she was anxious to read the book. However, she said that the antibiotic protocol (AP) only works for people who have a "mycoplasma" problem. When she ran blood work on me, there was no indication of mycoplasmas, so she said the AP would not be suitable for me. It ended up that the blood work showed that I have a problem with chronic Epstein-Barr Virus (EBV). Because my problem is viral, rather than bacterial or mycoplasmal, there is no cure. However, she recommended a supplement called Lauricidin, which is purported to help one's immune system keep the EBV in check. The Lauricidin has been very helpful and the side benefit was lowering my pain levels.

While I do not consider myself cured of PM, I do feel that my gluten-free diet (and now I'm trying to eliminate other grains), Lauricidin, and other supplements, have helped me tremendously. My biggest obstacle is overcoming the muscle, joint, and nerve damage that was already done, plus the osteoporosis from prednisone. But overall, I'm leading a near-normal life. I'm so glad to hear of your good results. That's wonderful. Thanks for posting.

I have been dealing with Polymyositis for roughly 5 years and seem to have moved into the Inclusion Body Myositis, probably because none of the Prednazone, methaltrexate or IGIV worked. So now my physicians don't have any treatment for IBM. I am desperately seeking someone to point me in a productive direction.

Glad to read that you're better. I was on the antibiotic therapy for several years--minocycline--as promoted by The Road Back Foundation. It did nothing for me.

There are many ways to do the antibiotic treatment. It must be done properly. Drugs must NOT be generic they must be namebrand. There are many meds that you can not take with the treatment such as methotrexate I urge you to educate yourself and go to www.rheumatic.org

IamLianne, I do believe supplements are helpful and diet is important too for DM. I try to eat gluten-free. I take vitamins and supplements periodically. I do think keeping bacteria, yeast, fungus out of the body is also helpful. I will look into the antibiotic therapy but I do know my DM is viral so the therapy may not work.

Anne, there is a new treatment for IBM called lithium chloride that slows down the progression of the disease. You can google Dr. Frank LaFerla and IBM treatments. Lithium Chloride is a vaccine that is newly developed and shows great promise for IBM.

Thanks for the suggestion to educate myself. I did not take Methotrexate when on minocyclene. I did not do this without a doctor, nor without reading all available information at that time.

I failed to mention that I was Dr. Franco's patient for several years.

Is soliciting allowed in this forum?
Michael PM

I would like to speak with you directly about my polymyositis and what your recomendations might be. Could you email me your phone number please.

Thank you

Anne

Hi Lianne

My phone number is 905-953-1474

Thank you

Anne

Hi Lianne
Could you let me know what area code your phone # starts with. I screen calls sometimes. Lots of telemarketers.

Thank you

Anne

trp11, could you tell me where to find info on Dr Frank Laferla and IBM? I'm confused- I Googled him, and he's an Alzheimer researcher.

I do not know who that person is

Here are two websites that should be helpful. You can google Dr. Frank LaFerla and IBM research. Dr. LaFerla is a biochemist and leading Alzheimer's researcher. He also does a lot of research on IBM, PM, and DM. Collagen vascular dementia has a lot of similarities to Alzheimer's. Lithium Chloride is a drug used for bipolar disorder that shows a lot of promise for IBM.

Here are the sites: Re: good research news-The Myositis Support Group, www.myositissupportgroup.org/cgi-local/.../IBM?...

Lithium Chloride slows development of inclusion body myositis
www.news-medical.net/news/2008/03/19/36440.aspx

I hope this helps.

Thanks, trpt1 Very interesting! Shirley