Thanks for answers to previous questions. I wanted to know if anyone had any experience with the diagnosis of polymyositis, or elevated tests for CK (sometimes known as CPK) and myoglobin.
A previous doctor diagnosed me with polymyositis in 2004, based on elevated CPK and myoglobin blood tests he stumbled on. These have gone up and down, and responded to long-term doxycycline and minocycline. Myoglobin has been normal since it resolved (I guess in 2004), but the CK is sometimes elevated still.
I was curious if anyone else had these kinds of lab results or a diagnosis with a myositis (polymyositis, dermatomyositis, etc) before being found to have lyme.
Thanks in advance, Derek
Posted by Truthfinder (Member # 8512) on :
Hi, dex -
Sounds like you're making headway! That's excellent news.
Odd that you should ask about the 'myositis' diagnoses....
I have an acquaintance that was diagnosed with dermatomyositis summer before last. She has had some odd symptoms and lab results in the past - but they did not persist.
It all came to a head in 2008 when she developed skin symptoms, pain, and weakness a couple of weeks after spending a week-end at her cabin.
Come to find out, she found a tick crawling on her that same weekend at the cabin, but never saw anything attached.
I just have this suspicion that she did get a tick bite, and that triggered a full-blown disease state. She already had some kind of problem going on before all this, I'm sure.
Of course, her docs did the standard "Lyme tests" and they were all negative. Other infections were 'ruled out', too. I've done my best to explain how this can happen, etc., but when you are as ill as she was at the time, she chose to listen to what her docs told her. The last I heard, she was still on steroids.
She's a hairdresser by trade and because of the persistent weakness in her legs, she has decided she'll have to seel her salon.
As soon as I get my copy of "Under Our Skin" back, I'm going to give it to her to watch. That movie says everything I'd like to be able to say. At least she'll have some new information.
Oh, and dermatomyositis was a diagnosis my PCP kicked around way back in the early 90s. But instead, I got the Fibromyaltia + Lichen Simplex Chronicus (rashes) diagnoses. Got the exact same thing at the Mayo Clinic down in Scottsdale, AZ.
Sorry, I can't confirm what you asked about lab tests. I never had the tests you mention, and my friend doesn't pay much attention to what they have tested her for. She did say one test was somewhat odd - like for 'muscle enzymes'? And I know one test was some kind of biopsy.
Hope this helps some.
Posted by Lymetoo (Member # 743) on :
My dr thought I had polymyositis about 30 yrs ago. (it was lyme) The test for it came back negative. I don't know which test it was.
Keep treating the Lyme!
Posted by Parisa (Member # 10526) on :
Derek,
My husband has a dermatomyositis with pulmonary fibrosis diagnosis. Aggressive treatment of Lyme disease and babesiosis has reversed most of the lung damage and he's about 90 percent back to normal strength wise.
Check out www.roadback.org for information about treating autoimmune conditions with antibiotics. Basically, find out the cause (infection) of your symptoms and treat it accordingly.
Posted by LymeGrl82 (Member # 25337) on :
Parisa- I found some of your other posts about your husband being diagnosed with dermatomyositis. Was it the IVIG or the antibiotics that made him better? or both? Are they saying its just lyme now..and never was dermatomyositis?
![[Frown]](frown.gif)