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Old 11-21-2008, 08:25 PM   #1
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shepart40 HB User
newly diagnosed with polmyositis w/insitial lung disease

this is a very scarey disease, my doctors says its rare because i have symptons from pm and dm plus the lung issue. 12 days in the hospital to find out what was wrong. my muscles feel as if they are gone my chest feels like someone is sitting on it. im really scared and hope that this is not a death sentance. i want my life back. just had another stay in the hospital i couldnt breath good and my legs would not work they gave me that ivig which worked while there, but now i feel weak again but not as bad, the worst for me is the breathing issue and my legs aches so bad that i literally wake up out of the little sleep that i am getting....this is the hardest thing that ive ever had to do........if there is anyone out there that can relate please respond thanks....

 
Old 11-22-2008, 12:26 AM   #2
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Re: newly diagnosed with polmyositis w/insitial lung disease

Have you had a tick bite?

I developed DM after contracting Lyme Disease. I would suggest that you request testing for Lyme and possible coinfections. I would also suggest that you request a month of doxycycline. If you feel worse after a few days and better after a few weeks then I would suggest that Lyme might be the cause and an extended course of minocycline or doxycycline might be in order.

I hate to be a broken record about this, but DM is so rare, and in Europe DM is strongly associated with Lyme Disease, but Drs here don't seem to consider that possibility.

 
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Old 11-22-2008, 03:53 PM   #3
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Re: newly diagnosed with polmyositis w/insitial lung disease

i havent had a tick bite that i know of. it started with my eyes swelling to the point that they closed. i would awake with what looked like black eyes the doctors thought i was allergic to something so i had the allergy test which came back negative. literally i was fine one day and the next i wasn't. im on 60mg of prednisone, 75mg of imuran, norco and a pill for anxiety because of my chest muscles making me feel that i cant breathe, the doctor says its my muscles in my chest walls that make me feel this way..

 
Old 11-22-2008, 05:00 PM   #4
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duncan1 HB User
Re: newly diagnosed with polmyositis w/insitial lung disease

Unfortunately, nymphal stage ticks are almost microscopic and extremely hard to detect. So no strange rashes on your body, that might have occurred in the Spring or Summer?


Did your Dr consider the possibility that it might be from infection? I would suggest that you request a C-6 Lyme Test, but also that you request a month of Doxycycline to see what happens. If you feel a lot worse after a few days, and better after a few weeks, then it might be Lyme. I've read that DM can also be triggered by things such as cancer, so all causes must be considered. I just know that in my case Lyme Disease would never have been considered.

I hope you start feeling better.

 
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