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Old 08-19-2008, 03:55 PM   #1
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lynn1955 HB User
Anyone with dermatomyositis and lyme disease?

I was diagnosed with dermatomyositis in 2006 and last monday I was diagnosed with lyme disease. I was wondering if anyone else has both of these conditions?

 
Old 10-28-2008, 01:23 AM   #2
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Re: Anyone with dermatomyositis and lyme disease?

Quote:
Originally Posted by lynn1955 View Post
I was diagnosed with dermatomyositis (DM) in 2006 and last monday I was diagnosed with lyme disease (LD). I was wondering if anyone else has both of these conditions?
Hi, I was infected with Lyme Disease in May 1990 after a tick was removed by my family doctor, with target rash and onset of classic Lyme disease symptoms, and I developed Groton's papules, the typical skin condition associated with Dermatomyositis the following summer. My Groton's didn't resolve for many years and then faded into a kind of dermatitis characterized by scaly skin patches on my palms and fingers after treatment for LD. I was finally diagnosed with LD in 2005 (after another Dr reviewed my 1990 case notes), and my advancing joint pain and MS like symptoms promptly retreated upon treatment with antibiotics, but I am still very fatigued.

In Europe Dermatomyositis and Lyme Disease are strongly associated, and it was my discovery of European papers on DM and LD that lead to my skin condition being recognized by my rheumatologist as being Groton's papules. I think anyone with DM should be worked up for LD (along with everything else) and given extended treatment with minocycline even if the LD tests are negative - as mine were - as failure to treat the underlying disease is a sure ticket to disaster. For more info go to www(dot)pubmed(dot)com and search for "Lyme and dermatomyositis". Pubmed is a service of the US Government.

 
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Old 10-29-2008, 04:12 AM   #3
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Re: Anyone with dermatomyositis and lyme disease?

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Originally Posted by duncan1 View Post
Hi, I was infected with Lyme Disease in May 1990 after a tick was removed by my family doctor, with target rash and onset of classic Lyme disease symptoms, and I developed Groton's papules, the typical skin condition associated with Dermatomyositis the following summer. My Groton's didn't resolve for many years and then faded into a kind of dermatitis characterized by scaly skin patches on my palms and fingers after treatment for LD. I was finally diagnosed with LD in 2005 (after another Dr reviewed my 1990 case notes), and my advancing joint pain and MS like symptoms promptly retreated upon treatment with antibiotics, but I am still very fatigued.

In Europe Dermatomyositis and Lyme Disease are strongly associated, and it was my discovery of European papers on DM and LD that lead to my skin condition being recognized by my rheumatologist as being Groton's papules. I think anyone with DM should be worked up for LD (along with everything else) and given extended treatment with minocycline even if the LD tests are negative - as mine were - as failure to treat the underlying disease is a sure ticket to disaster. For more info go to www(dot)pubmed(dot)com and search for "Lyme and dermatomyositis". Pubmed is a service of the US Government.
Hi,
Thanks so much for your reply. I have been treated for the DM and am now in a medicated remission (Prednisone and Plaquenil first; now Methotrexate and Plaquenil). I was given antibiotics for the LD. The really bad rashes and the Groton's papules I had are now gone. However, I still have pain, fatigue, and peripheral neuropathy in hands and feet which are being treated with Lyrica. The Lyrica has helped the peripheral neuropathy but not the pain elsewhere. The pain elsewhere is attributed to fibromyalgia. Since the Lyrica didn't help with the fibromyalgia they now want to put me on Cymbalta.

On a side note, I have a second cousin who lives in England that had juvenile DM, but has been in a true remission (no medication) for many years.

I will check out the website. Agains, thanks so much for your reply.

 
Old 10-29-2008, 01:59 PM   #4
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duncan1 HB User
Re: Anyone with dermatomyositis and lyme disease?

Quote:
Originally Posted by lynn1955 View Post
Hi,
Thanks so much for your reply. I have been treated for the DM and am now in a medicated remission (Prednisone and Plaquenil first; now Methotrexate and Plaquenil). I was given antibiotics for the LD. The really bad rashes and the Groton's papules I had are now gone. However, I still have pain, fatigue, and peripheral neuropathy in hands and feet which are being treated with Lyrica. The Lyrica has helped the peripheral neuropathy but not the pain elsewhere. The pain elsewhere is attributed to fibromyalgia. Since the Lyrica didn't help with the fibromyalgia they now want to put me on Cymbalta.

On a side note, I have a second cousin who lives in England that had juvenile DM, but has been in a true remission (no medication) for many years.

I will check out the website. Agains, thanks so much for your reply.

I think that you will find that several months or more of minocycline will reduce the pain, as it has powerful anti inflammatory properties as well as the ability to protect neurons and modulate over active immune systems. It is cheap, easily tolerated and of course would destroy any remaining spirochetes that the original treatment may have missed.

Just do a websearch, the one starting with "g" of minocycline dermatomyositis and you will find lots of info including another case history from Lisa and LEE, DM sufferers who were successfully treated with minocycline. Minocycline works.

Last edited by duncan1; 10-29-2008 at 02:02 PM. Reason: the word google is not allowed

 
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