posted
I was originally infected in the Spring of '87. By early '91 I was a physical wreck. Weighed 138 lbs. (normally 170) Bells Palsy, severe joint inflammations, neurological etc...
I was diagnosed & treated w/ a 21 day course of I.V. Rocephrin. Gained strength & weight back & was proclaimed cured. But over 16 years, serious problems persisted. Degenerating discs & multiple joints. Fibromyalgia, chronic pain etc.. Spinal fusion, shoulder rebuilt, both wrists & knees in bad shape.
Rheumatologist (Not LD aware) assumed it was an auto-immune disorder & treated w/ massive steroids & immuno suppressant. Well I exploded in Lyme symptoms. Knees swole to size of grapefruits & my original ECM actually reappeared! Now Dr. believes what I always knew. I'm still Lyme active.
My ? is; what is the prognosis, expectations of someone who has carried the spirochete for 20 years? All the literature is full of "easily treated in early stages". But no information on what to expect the disease has been active for many years. Occasionally you'll see reference to Chronic Lyme but it goes nowhere. Any help anybody?
I live in deep South TX now where LD is not a normally accepted diagnosis. (I hope this can now be read w/ Proper spaces & paragraphs)
[ 30. December 2006, 09:08 PM: Message edited by: bgpald ]
Posts: 1 | From Port Aransas, TX | Registered: Dec 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hello,
On the chronic question.
Most of the leading ILADS Dr, say that virtually all (>90%) of thier "chronic" cases are "cured" (and I use this word with caution) in about 3 years.
Checkout www.ilads.org, these are Dr's that have a specialty in Lyme and tick borne diseases and are at odd's with the 4 week easily cured group of Dr's.
Steroids made things much worse but still recoverable (at least I have been told, since I had steriods to). It just takes longer.
Was it one of the Yale group or one of the Dr's that was in the IDSA Lyme guideline commitee that treated you. These are the guys pushing 4 weeks cures everything...They are stillpushig it and it would be very interesting to see what one of their failures would have to say about them and they would have to say about thier failure.
Good luck
Posts: 1184 | From north america | Registered: Feb 2003
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bettyg
Unregistered
posted
welcome newbie! i've sent you a pm, private message, with my 23 pges newbie links/advise.
i couldn't read your solid block of text above. i'll come back after you've edited it into paragraphs for readability/comprehension.
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