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Old 01-18-2008, 11:34 AM #21
SarahO SarahO is offline
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Join Date: Dec 2007
Posts: 134
15 yr Member
SarahO SarahO is offline
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Join Date: Dec 2007
Posts: 134
15 yr Member
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Quote:
Originally Posted by Erin524 View Post
Sarah,

I'm highly suspicious that my problem could be Lyme instead of MS.

I've had at least 3 or 4 tick bites...and one of those was associated with a rash.

Do my doctors believe me? Oh heck no. The fact that I have a medical record that says that I had an erythematous rash (I didnt know much about Lyme when I had that particular tick bite, so I didnt mention the tick to the doctor at the time) and that I can remember the tick bites. (every single one of them. The first of which was when I was around 10 or 11yrs old)

I had to pay for my own Lyme testing at Igenex (independent lab that tests for Lyme bacterias) When I got my Western Blot back, I had 3 or 4 of the bacteria bands, yet my doctor only looked at the "negative" on the test.

I have the test kit for all of the bacteria bands (think there are 12 or 13 known Lyme bacterias) that I'm going to get the blood drawn for later this year (it's a $600 test!) My doctor at least is willing to humour me about getting the tests.

I'm still allowing them to treat me for MS, since I figure if it's Lyme, the MS treatment probably wont hurt me too much, and if it's truly MS, then I'll at least have been under treatment for that.

Dear Erin,

Where are you located? PM me and I can send you the name of the nearest Lyme doc! An EM rash is diagnostic of Lyme disease, it is the actual spirochetes moving through the skin. It cannot be caused by anything else. If someone HAS an EM rash, they HAVE Lyme disease.

It is really awful the way doctors think of lyme- they truly don't tend to know much about TBDs and think they do. I am sorry you didn't get treated for it. If you have symptoms at all, you can get way better with longterm abx therapy. We have had people leave wheelchairs, the longest was in 4 years pre-Lyme treatment (he was diagnsoed Juvie ALS).

Seriously, PM me where you live and I will go on lymenet.org to the Seeking Doctors column for you-!!! I was deathly ill & am symptom-free. It is nice to to be impaired.

Best wishes,
Sarah

p.s. Did you look at the maps? They amaze me!!!
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