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Old 01-19-2008, 04:45 PM #30
SarahO SarahO is offline
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Join Date: Dec 2007
Posts: 134
15 yr Member
SarahO SarahO is offline
Member
 
Join Date: Dec 2007
Posts: 134
15 yr Member
Default sideways to Erin- & to Greta-

Erin, Levaquin and cirpo are quinolines- they are not used in treatment for Lyme although they are used for the TBD Bartonella. Yes quinolines are known to do that for some people!! What a LLMD would likely put any MS Lymie on is IV Rocephin or IM Bicillin neither of which are quinolines. IV Rocephin has very few side effects and it is off patent now- you can get the generic Ceftriaxone for $412 a month. That is cheap now!!! (Mine cost $50,000 cash because my insurance wouldn't pay and IV Rocephin was on-patent then still and very $!!! CT and RI have MANDATORY IV Rocephin for lyme laws if I remember right because the insurance companies try to squeeze out of paying so much!) I have been a support group leader for 8 years and I can say that a Lyme doctor pretty much always treats MS Lyme with IV Rocephin or IM BIcillin rather than orals. IM Bicillin shots are in the penicillin family, are shots once a week in the buttocks area, you can giev it to yourself or have a friend or family member do it. IV or IM Rocephin is the bestest for neuro Lyme- that is what I had- 9 months of it. Then you transition to orals and don't go off unless you have 3 months symotom free!

Well, whatever works. I don't know how your MS treatment is going or your story. I just know that we have had MSers who were in wheelchairs get out of them and do way better with abx than they did with MS meds, so if you get that progressed in MS then it may be time to check out Lyme & Doc C. The nice thing about Lyme is that you can get so much better most of the time. Dr. Fallon says there is rarely DAMAGE even with gross impairment and I have found htat to be true (unless you have been treated with steroids which destroy responsivity to Lyme tx). I myself have been on abx for 9 years now. I have never had a yeast infection. I take prophylactic probiotics and anti-fungals and anti-c diff. I am just like normal as long as I stay on them and before IV I had no longer been able to walk normally, talk normally, think normally. Pre-abx I could no longer feel below my knees, could no longer walk wihtout falling, walking into walls, doorways, lurched on furniture, had clawhand, movement disorder, encephaloapthy, etc. For 7+ years I have been like normal again. I get very grateful for that because I was very very bad.

Anyway, take care, I wanted to give a heads up to you Greta & didn't mean to sideswipe the thread!!! Greta, I do believe you have Lyme since you had it- and clearly you do as well Erin!! EM is diagnostic. If you ever need resources you can call me at 1-831-662-2895 & I'll do my best to help- (daylight west coast hours because I have little kids)-
Take care all &
Best wishes,
Sarah
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