posted
I've been sick for almost a year. Earlier in the year, I felt about 90% but have for a month or so started feeling very sick again.
Last summer I had a western blot through LabCorp which showed several positive bands (but not CDC positive), and my Igenix test came back positive.
I had to go to the E.R. on Sunday, the dr repeated a Western Blot. I just got the results (through Quest Diagnostics) and I now show NO positive bands! Not a single one!
What should I make of this? I have a call into my llmd but not sure when he will get back to me since he's retiring soon anyways.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Are you still treating? Just treat the symptoms, not the test results!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
txgirl wrote: I had to go to the E.R. on Sunday, the dr repeated a Western Blot. I just got the results (through Quest Diagnostics) and I now show NO positive bands! Not a single one!
Antigenic variability. Borrelia changes it outer surface proteins to evade the immune system.
This is one reason why the tests are not reliable but there are many.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
All the test does is confirm exposure. Treatment and diagnosis must be clinical. You had a test confirm exposure. You have symptoms. You need to treat until symptoms are gone. At this point a negative test does not show that you were never exposed because exposure has already been proven.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Once you test positive, you never need another lyme test again. That proves it. All symptom flares are then suspect.
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
===============
There is just so much to consider that no test can begin to cover.
Researcher Eva Sapi has some fascinating observations. It's not just the spirochete: Borrelia b. has many forms and, within those, dozens more. --------------
-- This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.
She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. In May, the full transcript will be made available on the biofilmcommunity.org web site (See Expert Interview section)
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
=====================
GiGi Posted this From Scott's notes of recent Lyme Conference:
Dr. K believes that comparing Lyme disease to syphilis is misleading.
** Syphilis has 23 genes where Lyme has over 250. **
It is like comparing "cabbage with a dog". Borrelia is a far more evolved organism.
He posed the question, "What if these bugs could exchange their DNA such that the gene responsible for producing a certain toxin was transferred to harmless bacteria in the oral cavity or in normal gut flora."
It becomes clear that these microbes are highly intelligent.
(GiGi / Scott) ----------------
The original quote is probably at one of these two sites:
I just thought I would hold on to the IGg antibodies though, and I thought most people (as their treatment progresses) show even more bands.
I am still treating; I was just worried now I'm treating the wrong thing!
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With chronic lyme, actually, more people have IgM antibodies. Did they do an IgM western blot? Still, Quest does not test all the necessary bands.
Quest does not do the test correctly, anyway.
Bands change. YOU change. Lyme is very sneaky.
If you tested positive as you did before, you had/have classic symptoms and you have a good LLMD, lyme seems very clear.
Now, there may be other coinfections to consider as well - but lyme is just not going to disappear. It takes a while to get to remission. And, then, it's best to treat a couple months into that. It can't be rushed.
You said you have been "90% but have for a month" - not quite remission but you are getting close. There will be set-backs but just keep taking care of yourself.
You said your LLMD is "retiring" soon. I wonder if you'll get one more appointment so he can go over what to do if you feel the need to go to the E.R.
I can't even count the disasters I've had in the E.R. Now I've learned how to be my own E.R. "doctor" - so to speak.
Sadly, now that the Quest test is in your file, no doctor will consider lyme and they will accept the inadequate test. I hope you can find a new LLMD for your care.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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