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muscle atrophy bodywide with lyme

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Old 10-30-2012, 01:30 PM   #1
Join Date: Sep 2006
Location: San Francisco
Posts: 4
sfcharm HB User
muscle atrophy bodywide with lyme

Hi all,

I was diagnosed with neuro lyme seven years ago. My symptoms were bodwide twitching, calve atrophy, bodyjerks, seizures. I spent one year treating orally and one year on Rocephin IV.

I had two full years where I was symptom free. Since then I tend to have a reoccurencce of symptoms once a year. I pulse three antibiotics for three months the last three years to push back symptoms.

REcently I have had bodywide muscle loss. Severe loss in both ankle areas and so much in glute area I can hardly sit.

I saw a specialist at Univ of Pennsylvania ALS clinic, it was completely ruled out.

Saw two neurosurgeons on west coast at STanford and UCSF. I have a history of three neck surgerys and wanted to rule out a problem with my spine.

Both want me to see a nerve/muscle specialist.

I hate to blame everything on lyme, but other than the muscle loss I work out five days a week at the gym . I still can walk 4 miles with out a problem. No loss of any strenghth.

Both neuro Dr.'s that I recently saw on west coast wondered how I can walk with all the muscle loss in feet.

Any ideas??

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Old 01-21-2013, 08:08 PM   #2
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Join Date: Jul 2009
Posts: 14
ptm0331 HB User
Re: muscle atrophy bodywide with lyme

Hi sfcharm, I too am suffering body wide muscle loss including the insides of my mouth Are you OK now? I feel like I am dying... :'( ALS was also ruled out by Kaiser my insurance. I am so helpless. I tested positive for Lyme just last year and have not officially been treated for it, only taking antibiotics from acne Diagnosis. Please give us hope

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