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Post by enochroot on Oct 11, 2007 7:00:09 GMT -8
Boy, a NEW dilemma - got my bloodwork back from the IDSA infectious disease doc I saw last week...She said "nothing unusual - sorry" i said what about this Epstein Barr stuff? "oh, that's an old infection, not relevant" - when I got home and compared to my other recent bloodwork all from Quest - my tests of 2 months ago (just after I got sick) showed dead negative for EBV...NOW I have this "out of range 5.1" in one of the columns. Gonna run this by the infectious guys I am seeing this coming week!
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Post by LymeEnigma on Oct 11, 2007 7:56:33 GMT -8
Eek! Gotta love the guys who make stuff up as they go ... I had a bad experience with an ID doc, too. I know there are some good ones out there, but the bad ones really do muddle the reputations of the lot of them....
It's no wonder the majority of chronic Lymies out there are die-hard ILADS fans....
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Post by enochroot on Oct 11, 2007 9:18:37 GMT -8
Yep - this woman was typical of many docs I see these days - that make docs like Dr C a rare find. Most just want to stamp your file "problem solved" and call for the next patient - when that is not the situation they see in you, then it's "get' em outta here"...so - I may be going through Epstein Barr/Mono and not have Lyme? That is the question on my plate now...Plus to see if my GP will follow through and order the CFR test kit, so I can in any case, start the Zithromax!
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Post by enochroot on Oct 16, 2007 9:02:50 GMT -8
Whatta bunch of clowns...CFR - Hope the test is more reliable than THEY are! My GP's office mgr put in a kit request last Wed, online - I called them Monday just to make sure it was on the way - They had NO RECORD of the request! Turns out the website generates NO confirmation and fires off no email or such to let you know you are "good to go". I told them I was holding off beginning ABX to do this test...That they were really hosing me...They swore up and down it go out TODAY(Monday)...Called Tues, just to make sure...Now the story is it's going out TODAY! Should have it by Fri - which means can't draw blood (start abx ) till next Monday - no apologies, just a snotty guy who said nothing in response to my suggestion they FIX the website to make it reliable.
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Post by LymeEnigma on Oct 16, 2007 16:30:23 GMT -8
I'm so sorry to hear that. I really hope that their new blood test is worth it.
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Post by enochroot on Oct 16, 2007 16:47:44 GMT -8
Boy, so do I~! I was supposed to start Zithromax last Tues...
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Post by LymeEnigma on Oct 16, 2007 17:58:05 GMT -8
How are you holding up?
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Post by enochroot on Oct 17, 2007 14:30:43 GMT -8
So - so..But thanks for asking ;D Good days and bad days, seems to go in 2 or 3 day cycles. Mainly(as always) myalgia and fatigue. Went to see an infectious disease doc at Columbia Presbyterian in NYC today...waited a month to see him...pretty much a bust. Total IDSA line. "If you had Lyme, you don't have it after 6 weeks of Doxy" Really offered nothing new as to WHAT ELSE is keeping me out of work Then he said in a roundanout and polite way that it could all be in my mind... "Have you thought of trying Prozac?" Good news is CFR shipped the kit - should see it tomorrow!
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Post by LymeEnigma on Oct 17, 2007 18:46:55 GMT -8
Sorry your visit with the ID doc turned out to be a waste of time ... Prozac ... my goodness.
Let us knows how the CFR test goes!
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Post by enochroot on Oct 22, 2007 12:51:42 GMT -8
Hooooray!!!! Finally got the kit processed, and the samples out at the big FEDEX hub! Even my GP is interested in the outcome.
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Post by LymeEnigma on Oct 23, 2007 7:51:13 GMT -8
I hope we'll all be second to hear the results!!!
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Post by enochroot on Oct 24, 2007 13:17:49 GMT -8
On Zithro for only 3 days...Noticed much better stamina, reduced fatigue, less pain. I am SURE the IDSA docs I just saw would scoff and say it's "the placebo effect" - one even said "don't take your Zoloft until after you do your course of Zithro - I don't want the Zithro to get the credit for making you feel better".
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Post by LymeEnigma on Oct 25, 2007 6:31:09 GMT -8
Placebo effect, eh? For me, personally, Zithromax completely eliminated: - low grade fevers
- chronic insomnia (now I sleep all night, every night; I used to get an hour, tops, every night if I was lucky)
- numbness in extremities
- cognitive problems such as brain fog, confusion, inability to read/speak properly or focus on anything
- severe depression
If that is all the result of a placebo effect, then bring on the placebos!!!
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Post by enochroot on Oct 29, 2007 13:19:16 GMT -8
Got the results today - Central Florida Research Antigen Test.... Negative! Damn. Was off Abx for over 3 weeks at the time of blood draw. They claim it is conclusive if off Abx for 90 days - but still, to come up neg after almost a month "dry", gotta say something. So what DO I have Why does Zithro make me feel better? Could I have a co-factor but no Lyme?
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Post by LymeEnigma on Oct 29, 2007 17:50:14 GMT -8
Wow, that was quick! Negative, eh? Have you been tested for co-infections, mycoplasma, and Epstain-Barr? I wonder what else it could be ... Lyme sequelae, maybe? We'll help you figure it out!
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