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Post by enochroot on Sept 25, 2007 13:03:52 GMT -8
Dr C uses a local obscure lab called Enzo Labs, but does on occasion use Igenex - feels it costs too much for too little extra likelyhood of resuilts. I also saw much about Bowen Labs - centralfloridaresearch.com/lab/these guys claim to identify the actual bug - not an antibody. and so claim much higher result accuracy. Anybody know?? |
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Post by LymeEnigma on Sept 25, 2007 16:35:25 GMT -8
I have wondered about this for a while, and I really don't know yet what to think. If Central Florida Research's Flow Symmetry test truly is what they say it is, then the first step toward the Big Truth we've all been searching for will have paved its place. I am both excited and wary about this, although I am trying to be sceptically optimistic. I have been following Bowen/Central Florida Research for a while now, and the one detail that concerns me is the "Bowen Technique," which just seems a little ... weird? However, they are now fully licensed to offer the test and it is covered under many insurances ... but I do know that there was also the threat that said license was going to be revoked (for whatever reason), and who knows whether or not politics is more responsible for the outcome than science. Time will tell ... and if this test really turns out to be legit, you can bet I'll give Central Florida Research my business. Where the other labs are concerned, I have had an ELISA and Western blot done through Quest diagnostics, and an ELISA C6 peptide titer and a Western blot done through Igenex. Interestingly enough, my Quest ELISA was positive, but my Quest Western blot was negative ... but my Igenex ELISA was negative and my Igenex Western blot was positive. That's one hit and one miss for each of them, in my book, so I can't really say I think either lab is better than the other. Perhaps I should try LabCorp and Mayo next, and see what they each come up with.  |
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Post by enochroot on Sept 28, 2007 10:37:16 GMT -8
Big news on the Healingwell boards - Bowen Labs got done with the CDC and state
of Florida and won - proving legitimacy of their test - called Central Florida REsearch
to ask them myself!
NOW i gotta find a doc who can do it - Dr C. is NY state - NY state docs can't use
the lab - they said NYS is the most tangled and restrictive of all. They recommended
calling LLMDs in NJ - so i got messages in at two so far...
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Post by LymeEnigma on Oct 1, 2007 22:09:03 GMT -8
I'm very tempted to go ahead with the test, myself ... it sure would be nice to know whether or not I have beaten this thing. The question as to the cause of all of these symptoms is a big one for me. Let us know how it goes. I'm going to see what else I can dig up on the company....
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Post by enochroot on Oct 2, 2007 13:55:34 GMT -8
Still trying to find a doc who can do it...
The CFL told me they don't have a list to refer
from - called a few NJ Lyme docs and hit nobody
yet who uses them - Can only make you wonder?
Still more to try.
Just got a standard Quest Labs WB done while off
ABX - they didn't give me a breakdown just an over
view that said "negative".
Seeing an infectious disease doc tomorrow who I hope
can offer some ideas - and ways to rule out stuff besides
Lyme.
Going to ask for a Blood culture - what can it hurt?
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Post by LymeEnigma on Oct 2, 2007 20:04:27 GMT -8
Good luck - let us know how it goes!
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Post by enochroot on Oct 4, 2007 18:36:15 GMT -8
Well...It went like you might expect.  The well regarded Imfectious disease doc is a total IDSA party liner...She just about smirked when I mentioned Dr C in response to "what Lyme specialist are you seeing?" She said "oh I know him...He's not one of the really wacky ones". Then we went over my history of events/symptoms and she shot down most of my other possibilities - like reaction to Hep B vaccine, or some other infection from a stray cat - said Babesia, Bartonella don't work that way - or systemic fungal or yeast, or an out of control std... Also said Lyme has no cyst form, and there's no such thing as herxes... Said maybe autoimmune? maybe thyroid? She wasn't nasty or anything - but I was expecting more. She DID agree to run some tests like a blood culture and a few others - so I can hope for some more data. She DID say keep seeing your Lyme doc, I am not saying you don't have Lyme  And asked why Dr C did not repeat the Doxy since it seemed to help. |
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Post by enochroot on Oct 4, 2007 18:39:23 GMT -8
Can't find ANYbody doing the Central Florida Research new test.
Called a bunch of NJ lyme docs.
I made an appt with my GP - in the long shot hope of getting
him to order a test kit and paying whatever it takes.
They won't send a kit to a patient.
I just want this test, if I could get a positive test - I would feel
more confident about the rocky road I am undertaking out of
no other resort!
If it came back neg, being so much more reliable than the other
tests - maybe my illnes IS some other damn thing?
Anybody else felt that way?
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Post by LymeEnigma on Oct 5, 2007 11:02:29 GMT -8
I wish I could help you, but I know next to nothing about Central Florida Research. I'm so sorry that you're having such a hard time. I know that feeling of being in diagnostic limbo ... it's a very frustrating, lonely place to be. None of the Lyme docs in NJ have been willing to run the test? Might you be able to order the kit and have it sent to your doctor's office?
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Post by itsybitsyone on Oct 5, 2007 11:15:42 GMT -8
Question....
IF BB doesn't spend much time in the blood stream...how come this is a blood test for it?
Wouldn't it yeild just as many false negs as antibody tests?
Nancy
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Post by LymeEnigma on Oct 5, 2007 11:16:40 GMT -8
That's a good question....
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Post by enochroot on Oct 8, 2007 13:27:26 GMT -8
Well - my GP surprised me with his open mindedness!
He said "frankly, Lyme is possible but after everything you have told me
I think you will end up being treated for CFS - which i will certainly help you
with - but if you want this test(CFR new one) drop off the literature and
I will order a kit.
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Post by LymeEnigma on Oct 8, 2007 13:31:57 GMT -8
Right on! Keep us posted! :-)
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Post by enochroot on Oct 8, 2007 13:36:26 GMT -8
Thanks  But now a NEW dilemma! Need to stall Dr C on starting Zithromax - supposed to start this week - OR wait till AFTER the Zithro course, since I suspect the test will not do much good during ABX - Gonna drop off the lit and try to order the kit Tues. I have been off ABX for two weeks, so my system should show it if it's there(?) |
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Post by LymeEnigma on Oct 9, 2007 8:12:58 GMT -8
Wow ... I wish I knew how long zithromax stayed in the system....
Just checked ... zithromax has a half-life of 2-4 days, which means it's already out of your system. I wonder how long it takes for the immune system to recover from an antibiotic course...? Maybe your doctor would have a decent idea as to whether or not you're okay yet to test?
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