Home › Forums › General Discussion › Polimyositis
- This topic has 5 replies, 6 voices, and was last updated 9 years, 11 months ago by Lynne G.SD.
June 24, 2012 at 10:41 pm #306882relleom29Participant
Hi. I have been dealling with Polimyositis for the past 6 years. I have done all the typical TX (prednasone, methaltrexate IGIV ect.). They are now calling my condition Inclusion Body Myositis. I have heard that some people have been using tetracycline and minocycline as a form of treatment for people like me, and have been very successful. Does anyone have a name of a clinic or Physician in the Toronto Canada area that could help me….If anyone has any experoence with polimyositis please respond… Thank you…
Erna….June 25, 2012 at 6:01 am #364261June3443Participant
I live in the USA and can’t help with doctors and I don’t have polimyositis. I have diffused SD and I have severe muscle spasms and pain when I am not on minocycline. I have been taking it for about 3 years in total. The mino has really helped me. I am now taking doxycycline 100 mg AM and minocycline 100 mg PM.
Maybe someone with polimyositis can provide more information on their experience. Good luck in your search.June 25, 2012 at 4:38 pm #364262MazKeymaster
To get a better idea of which type of doctor may help you best, has any doctor done an infectious diseases work-up on you? I’ve done some searching around and, like dermatomyositis and polymyositis, Inclusion Body Myositis (or IBM) has been linked to Lyme disease and other infections, such as toxoplasmosis. Interestingly, here are some doctors discussing this on a medical forum:
If you have not been tested, then it might be a good idea to get IGeneX lab testing run. If you need help with how to go about this, I’d be happy to share further info.
Unfortunately, the downside is that if it is Lyme disease, there are only a few Lyme Literate MDs in Canada – can literally count them on one hand – and travel to the US may be necessary. There is one doc in Chazy, NY, just over the border, however. Alternatively, there are a couple of AP (low dose antibiotic protocols as per Dr. Brown) physicians in Ontario, but (except for one in Ottawa who is booked out) these docs would not be conversant in how to treat the Lyme mix of infections.
I will send you the physician list of AP Physicians we have for Ontario, Erna, in a Private Message (PM), but would also suggest getting tested through IGeneX to check this possibility for longer term treatment, as untreated coinfections can leave patients unwell. To retrieve your PM, just go up top to your User Control and, when you see, (1 new message) appear beside it, just click there to retrieve your physician list. One of these doctors might be willing to run the IGenex Western Blot for you, but you would need to call IGeneX labs in California and ask them to mail you a Lyme testing kit in order to get the physician to sign off on it. It’s just a more sensitive test than the standard test they are using for Lyme. 😉
Don’t worry if you see multiple PMs from me in your PM inbox…there is some weird blip going on with the PM system in the last 24 hours that we are checking into.
A warm welcome to you!June 26, 2012 at 3:35 am #364260ParisaParticipant
My husband had dermatomyositis so I can’t speak to polymyositis but I can speak to the myositis. Lyme and Babesia were huge factors in his recovery so I would also encourage you to have Lyme disease testing done. Basically, here at the Roadback we are trying to find what is causing the autoimmune system to go haywire instead of trying to control the immune system. If you can find the cause which is usually an occult infection (or unrecognized infection such as Lyme disease) then you can treat it and make the condition go away.June 17, 2013 at 2:01 pm #364263AnonymousParticipant
I’m writeing from Croatia and I’m looking for some help. My boyfrien is 26 years old and from 2010 we discovered that he has Polimyositis. Since than he has been takeing Medrol (corticosteroids) and Methatrexate (citostatics).For some time the situation seemed to be controlled but lately the problem keep comeing back. Due the high dose of Metothrexate (17.5) he is constantly sick and under high temperature.I didn’t understand very well your last post but I was aondering if You can maybe explain.
In the beginning of his illeness he was positive on the test for B. Burgoferi bacteria, may this be the causes of his illeness?
Is there any chance there might exsist a cure in the USA?
Thank You very much for your response,
AlexJune 17, 2013 at 9:54 pm #364264Lynne G.SDParticipant
We have a very good Lyme site called Canlyme…There is a ton of info there and just maybe they could help with a doctor.It hasbeen some time since I looked at it so I am not sure if they have a list.Fantastic reading though.
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