Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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deleted_user 02/21/2011

Hi everyone!

I am new to this group. I have had DM for the last 12 years. I was able to achieve remission by using Minocin 3x daily at 100 mg within 18 months. I was in remission for 5 years.

I am flaring at present and am trying a new approach to treat DM. I am using a product by Raintree Nutrition that treats mycoplasma bacteria, which is what caused the DM for me. I tested positive for mycoplasma pneumonia. I am also following a whole foods diet that is free from sugar, wheat, alcohol and most processed foods. I am making steady progress. I also make sure to follow an anticandida diet since my immune system is so weak and prone to candida infections. I am trying this new approach in lieu of going back on minocin. Minocin worked but it did have nasty side effects, like totally screwing up my digestion.

Would love to hear if anyone else is following any alternative approaches and having success!

Suzanne

nanny1611 02/21/2011

My doctor did bloodwork to determine what triggered my PM. My mycoplasmas were okay, so I wasn't a candidate for the antibiotic protocol. My problem is Epstein-Barr Virus. I recently started using a product called Lauricidin and am beginning to see improvement in some of my symptoms. Lauricidin is good for virus, bacteria, mycoplasmas, and candida/fungal. It's approved by the FDA as GRAS (generally regarded as safe). I don't know if it would help you or not, but it is helping me so far. But I've only been on it 3 1/2 weeks.

Also, I follow a gluten-free diet, while avoiding MSG and artificial sweeteners. My inflammation levels have risen a little, so my doctor told me to take a good grade of Omega 3 oil, plus tumeric. I take other supplements as well. I wish you the best and hope that you find what works for you.

johnv 02/14/2019

Hello Suzanne, How are you? I hope that you are going well. I am communicating with you on behalf of my wife Irene. She has had dermatomyositis since she was 18, she is 47 now. At 18 she was paralyzed for almost 2 years until she met with a good doctor who diagnosed her correctly with dermatomyositis. She was lucky enough to recuperate with teh right meds, got off the wheelchair. I met he when we were 23 (1994) and married 1 year later.
She has done well for almost 27 years, we have 3 children. Throughout those years, dermatomyositis came back mildly two/three times and she had Immunoglobulin (IVIG) treatments and she used to go back to normal quickly...in full remission. However this past year, her CK levels shot up to 950 ....and they buffer around there. She did 6 months of IVIG (once per month - 6 treatments in total) however they have not gone down this time. She feels tired...and is worried. She is also on 2 x 5mg Prednisone daily with breakfast , 1 x Apo Hydro daily with breakfast, 2 X 200mg Pro Hydroxyquine once daily and 3 x 50mg Azathioprine daily with breakfast.
Can you provide us with any advise for latest treatments, natural foods, or can you recommend us to any doctor based on your own experience?

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