posted
"Hello everyone," Just got back from my G.P.,she had a lyme titer done on me 3 wks. ago( now keep in mind that 2 yrs. ago I was tested at "Igenex" by an infectious Disease Doc.,POSITIVE ELISA & WESTERN BLOT ,I.V. anti. for 1 month & hell) Still feeling just as bad & with more symptoms, Now someone "PLEASE "give there input!!!!! G.P. had this Lyme Titer done at "Quest" my results 0.8 <1.0 Index NEGATIVE .G.P. said by this result I "never" even had Lymes!!!! Need your responses , I'm desperate!!!!!! Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
GP sounds like a nut case. Did you do an Igenex WB again? Go to a LLMD.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
In my experience most GP's don't know much about lyme. I am with scott .Try to go to a LLD. take care and hang in there. Blessings dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I also had mamy lyme titers that came back negative, however, that was before I had my Quest/Igenex come back positive. From what my LLMD told me, the Lyme titer is only able to read whether or not you had the disease within a very short period of time - one week - three weeks. So, since you've had it for so long, the basic Lyme titer will come back negative now and forever more! Go back to you LLMD and ask them. The majority of GPs do not know anything about Lyme's Disease. Mine told me I was depressed! It wasn't until I changed doctors that another GP told me to see an infectious disease doctor. Fortunately for me, he also specializes in Lymes. Good luck. Hang in there. It's a rough road. Keep coming back to this board for questions. It's almost been my best friend over these past three painful, emotional years!
Posts: 75 | From NC | Registered: Dec 2004
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I'm new at this, but I've had 2 Lyme tests done at Quest and Lab Corp. Both were negative. I'm trying to get a Western Blot test. From what I've been reading, most of the tests from Quest come back negative.
According to their standards: Negative <0.91 Equivocal 0.91 - 1.09 Positive >1.09
They will not perform a Western Blot test unless you are equivocal or positive as per the current FDA.
The test that Quest does only looks for the Lyme antibody in your blood, which doesn't always show up, eventhough you are positive for Lyme.
That's what I'm going through right now. I want a more accurate test done. Getting my PCP to do it is another story. I have an appointment on Thursday and will be very convincing and diligent.
CB Posts: 60 | From USA | Registered: Nov 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
An Elisa test is very unreliable. If your MD is not willing to do a WB, get a new MD.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
You're in real trouble, and the sooner you find a real dr, the better!
REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochetes are deep in host tissue 5. Only blebs in body fluid; no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10.Utilization of host protease instead of microbial protease 11.Spirochete in dormancy phase 12.Recent antibiotic treatment 13.Recent anti-inflammatory treatment 14.Concomitant infection with babesia may cause immunosuppression 15.Other causes of immunosuppression 16.Lab with poor technical capability for Lyme disease 17.Lab tests not standardized for late stage disease 18.Lab tests labeled "for investigational use only" 19.CDC criteria is epidemiological, not a diagnostic criteria
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Your GP is an idjit.
A HUGE problem with Lyme disease is the outdated notion that in order to get a Western Blot (the "better" test), you gotta first have a "positive" ELISA. But as pointed out above, unless you just gotten bitten, the ELISA is by some accounts less than 50% accurate. And most regular GP's, by their protocols, will not test further if your ELISA is negative, don't believe in "clinical diagnosis," and would be absolutely staggered by the notion of a bacteria persisting in the body.
It would be helpful if the great and wise CDC would put out a bulletin to all doctors right away, saying "Uh, oops -- we really screwed up -- this two-step business is missing about half of the folks with Lyme, sorry about that. How 'bout just cutting out the ELISA nonsense altogether - what a stupid test! -- And go straightaway to the Western Blot? And use a good lab that tests all the bands?"
But coming from the clever agency which used to think thalomide was a good idea, I wouldn't hold my breath.
My own ELISA was negative and I'm teeming with borrelia. A subsequent western blot at IGeneX was plenty positive.
There's a huge study group that was done where they did skin cultures of people with big ugly EM rashes, cultured the bacteria out (proving it was REALLY TRULY LYME), but the people nevertheless tested negative.
You can order an IGeneX kit yourself and your local lab can draw the blood and you can ship it off. All your daffy duck has to do is sign it -- to "humor" you.
As you're already seeing, it's so much less frustrating and much more expedient to deal with an LLMD. When the patient knows more about the disease than the doctor, you need to be worried.
Hope you are on the path to recovery soon with a GOOD doctor and not wasting your energy with this duck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Somer:
Your conventional Doc is saying you never had Lyme because your titer was below 0.8. He's thinking about bacterial infections in the conventional manner - which is there are IgG antibodies long long after the pathogen is gone.
SOooooooooooooooo you need to look at your Igenex data from 2 years ago - were you IgM positive? It's possible you NEVER had any IgG antibodies, even 2 years ago (most active Lymies continually or periodically spike IgM (not IgG) antibodies.
You'r dealing with a guy that knows nothing about Lyme - you can either try to educate him, or drop him (SOme DOcs are willing to learn- but ALOT are not) and get a knowledgable Doc.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
"THANK YOU" for all your replies,what a learning & SUPPORT system this group is. I'm so GREATFUL to have you ALL!!!!!!!!!!!!!!!!!!!!!!!! Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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posted
You're welcome, Robin! We're here to help others in the same boat! We don't want anymore suffering than there already is with this stupid disease!
Rock on!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Please, please get yourself to a LYME LITERATE MEDICAL DOCTOR as fast as possible. Your G.P. doesn't know what she is doing or saying.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Quest Western Blot only tests for B-31 strain not B-31 and 297 like Igenex, and you can get only get to the Quest WB if you have a "positive" EIA as was noted, EIA additionaly noted only fair at detecting in EARLY disease.
Also, the Quest version of the WB is supposed to be used for EARLY Lyme, not a case like yours.
Further complicating the issue of Quest tests are the missing bands, 31 and 34, which were "reserved" for the making of the vaccine. These bands are highly specific outer surface protein markers of Bb. Smith/Kline reserved them for their vaccine. Note that S/K is a huge shareholder in Quest Labs.
So their test is good only for early Lyme, leaves out VERY important bands, and they only report CDC bands. What more can I say?
Posts: 422 | From Luck home | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Lyme is a clinical diagnosis ( based on syptoms and history)
The tests would be a good backer if you need for insurance coverage.But I think a good LLD would go by a clinical diagnosis.
Take Care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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