For those of you with neuro-lyme

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Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/15/2008 11:21 PM (GMT -6)   
Hi Guys: I was wondering if any of you with neurological symptoms have days when you can hardly hold your head up. Sometimes when sitting I will have to lean on the chair or sofa because I simply cannot hold my head up. I am not talking about fatigue, but muscle weakness. Anyone have this symptom? Doc is still thinking MS but I know they are very similar if you have neurological lyme symptoms.  Thanks  D

twicebitten
Regular Member


Date Joined May 2007
Total Posts : 124
   Posted 11/16/2008 4:53 PM (GMT -6)   
Dowa-- Yes, when I first began treatment with LLMD, I had many days when I couldn't hold my head up----muscles were very weak. My arms and legs were also weak..I believe, in my case, it was due to babesiosis. That dreadful weakness is now much better after two years of treatment. I began retreating the babs again two months ago as the symptoms were beginning to creep back into my body.

I can remember standing in the shower and leaning my head on the shower wall as I just felt I couldn't hold it upright. Have you been tested for babesiosis? How long have you been in treatment? It does get better over time and those pesky neurological symptoms wane so that at least you can function.

Hope you feel better soon,
Ellen

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 11/16/2008 5:41 PM (GMT -6)   
Thank you Ellen. I am glad that your symptoms are improving. My Igenex all came out negative but I was disagnosed with Ehrlichia by Dr. Fry with the blood smear. I dont really know why the Igenx is negative and Fry positive, but you know how that goes. I have done hyperbaric treatments and noticed some improvement in my symtoms but it is very expensive. Wouldnt the Igenex be positive if I had had it for some time? We are thinking years because of many years of having a diagnosis of CFS then my retriver died of LYme and I got tested. Really is a puzzle still, but the weakness is a scarey thing.  Thanks D
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