posted
Hello all and hope you had a nice Christmas.
My PCP and 2 inf diseae Dr's say I no longer have Lyme due to my most recent WB test.
I Started severe flu like symptoms in July 2008, Developed giant bullseye rash in late August of 2008 which my Dr didnt want to see.
Tested for Lyme Sept 12th. results as follows: IgM 23 & 41 bands Positive IgG 18,23,28,39,41,58 bands positive
Infectious disease Dr says this is an overall insignificat number of bands to be "serious" lyme.
Treated immidiately with the obligatory 20 days of doxy. Still really sick, no improvement.
Retested for Lyme (WB) on October 9th 2008 IgM 23 & 41 Positive IgG 18,30,39,41 positive
Quests overall interpretation = Negative In their words...."IgG antibodies to less than 5 of the 10 significant B. burgdorferi detected".
My PCP and 2 inf disease doctors say I've been cleared of Lyme according to Quest Diagnostics.
Anyone here able to shed some light on the test results? It would be very much appreciated.
Brian
[ 26. December 2008, 06:53 PM: Message edited by: Briannh ]
Posts: 14 | From NH | Registered: Oct 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Brian,
Sorry that you have been so sick. Please be aware that the lyme blood test has many false negatives, which is why lyme is a clinical diagnosis.
The blood tests where designed to be very specific, so if you have a positive result for a band, you can be sure about it, but also the tests are very insensitive, which mean they miss many (or most) of the true lyme disease cases.
Even so, you have many positive bands.
You had a bulls-eye rash and symptoms. I hope you took a picture of your bulls-eye rash. You have lyme and possibly other tick borne coinfections.
Best wishes for your llmd appointment; they will evaluate you and treat you.
Your regular doctor is willfully ignorant about lyme and probably has an ideological bias in favor of the IDSA's corrupt standard of care. By refusing to consider your medical history (i.e., bulls-eye rash) your doctor has shown they are not acting rationally or as a scientist in this matter.
Posts: 2557 | From home | Registered: Aug 2006
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posted
You need to get to a llmd who will treat your symptoms and not your test results.
After all, even the CDC says Lyme is a clinical diagnosis, and tests alone should not be used to determine illness.
Please get some sufficient treatment as soon as possible.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Many of us test negative, probably 50 to 75%. A good LLMD will treat you based on a clinical diagnosis. Don't put too much faith in those darn sorry test!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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adamm
Unregistered
posted
Go to lymecryme.com and click on "How the Test was Spun."
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
As you've seen, IDSA docs spend great energy demonstrating how you could not possibly still have lyme, despite all evidence to the contrary. It's mad.
None of them would have the brains to trouble to test you for coinfections. A not-unlikely scenario which would cause you to fail to recover.
I'm so glad you're slated to see an LLMD.
The IDSA is heavily invested (and I mean that literally) in proving that 3-30 days of low dose doxy eradicates lyme. A wealth of studies exist that prove otherwise, which they handily ignore. They'd rather you continue to see them for such things as "chronic fatigue," "fibromyalgia," and so on, bilking you for years on end, than admit they've botched their guidelines.
Your best bet: An LLMD. Also, read everything you can at ILADS and read up on the persistence of the lyme bacteria in the body in spite of treatment.
Don't be discouraged - you CAN get better with proper treatment. Good luck!
Posts: 3193 | From Northern California | Registered: Apr 2005
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Some, or even most, doctors are woefully ignorant about this. and some have narcissistic or other personality disorder--so there is not getting through to them.
Think about AIDS/HIV in the early years and what people went through.
I suggest focusing on your knowledgeable LLMD and what he has to offer rather than on the blaggards who do not uphold their hyppocratic oath.
If you have the energy, or have someone to help, you may want to file a complaint with the clinic/hospital where that ID doc practices, if you haven't already.
Testing, you know the rigamarole. If you are looking for reasons why these tests(whether Quest or even IGeneX) fluctuate even if symptoms escalate, read explanations here, I hope it helps: http://www.anapsid.org/lyme/lymeseroneg.html
Some people will never test positive for any but maybe one band because the strain they have isn't tested for at any lab...yet.
Depending on how acute the case, when treated with Abx, your immune system stops producing antibodies on its own (abx take over)which can account for fewer bands being positive on the same test.
Abx can send the spirochete into "hide mode" in cyst form so that your immune system is no longer producing antibodies.
But again, the tests are inferior.
In any event, ignore the tests & the hope for consistent empirical lab evidence, and look forward to seeing a LLMD who will clinically diagnose you.
It's a sad state of affairs and I am sorry that you've endured such invalidation. Hopefully your future will be filled with validation with your new MD and steps towards health.
Hang in there....
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Some, or even most, doctors are woefully ignorant about this. and some have narcissistic or other personality disorder--so there is not getting through to them.
Think about AIDS/HIV in the early years and what people went through.
I suggest focusing on your knowledgeable LLMD and what he has to offer rather than on the blaggards who do not uphold their hyppocratic oath.
If you have the energy, or have someone to help, you may want to file a complaint with the clinic/hospital where that ID doc practices, if you haven't already.
Testing, you know the rigamarole. If you are looking for reasons why these tests(whether Quest or even IGeneX) fluctuate even if symptoms escalate, read explanations here, I hope it helps: http://www.anapsid.org/lyme/lymeseroneg.html
Some people will never test positive for any but maybe one band because the strain they have isn't tested for at any lab...yet.
Depending on how acute the case, when treated with Abx, your immune system may stop producing antibodies on its own (abx take over)which can account for fewer bands being positive on the same test.
Abx can send the spirochete into "hide mode" in cyst form so that your immune system is no longer producing antibodies.
But again, the tests are inferior.
In any event, ignore the tests & the hope for consistent empirical lab evidence, and look forward to seeing a LLMD who will clinically diagnose you.
It's a sad state of affairs and I am sorry that you've endured such invalidation. Hopefully your future will be filled with validation with your new MD and steps towards health.
Hang in there....
Posts: 571 | From Massachusetts | Registered: Oct 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
You tested positive at one time.
"Infectious disease Dr says this is an overall insignificat number of bands to be "serious" lyme.". Ridiculous. All lyme is serious lyme!!! Dumb ID docs have no idea what they are talking about when it comes to lyme... and if they do, they are keeping it well hidden due to reasons you'll learn by doing intense research on this subject.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thanks to all who posted, I truly appreciate it. Such a great group here.
22dreams I sent you a PM
Are the bands I tested positive for on my second western blot (IgG 18,30,39,41) significant? Quest says you need 5 out of the 10 total, I only had 4.
Posts: 14 | From NH | Registered: Oct 2008
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adamm
Unregistered
posted
The best Lyme lab, Igenex, considers you positive if you have at least 3 bands. If you're ill, you definitely need to treat.
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bettyg
Unregistered
posted
brian, this will explain your western blot numbers; read it over and over; it eventually sinks in.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Quest is not the best lab in the country for finding Lyme.
That being said, the fact they actually found bb in your system speaks volumes.
You are still IgM positive (CDC requirements for reporting).
Twenty days of antibiotics is not nearly enough.
What about co-infections such as babesia and bartonella?
Please post in Seeking a Doctor section with your state and city.
You need to find a Lyme Literate Medical Doctor asap.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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