Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Can you test negative with IGENEX and still have lyme? My LLNP recommended them if I wanted to know "for sure".
Posts: 1748 | From United States | Registered: Dec 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes. No Lyme test is 100% accurate.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Yes! My test was not clearly positive. You go by the Lyme-specific bands.
At least Igenex tests for all possible bands.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Does not sound like that "LLNP" is really LL. I would wonder what else they think they know "for sure" that is wrong. There is no "for sure" here if they think a negative can rule it out.
Igenex is as accurate as it can be, at this point, though, for what they do. It is the best lab for the kinds of tests they do. It's just that lyme can trick and hide so awfully well from a blood test.
An Igenex positive band is always positive (if it shows, it's there) but the negatives still don't rule it out.
The Advanced Labs Culture test could tell you more. Detail in the second link below. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Public Health Alert (PHA) is a newspaper committed to researching and investigating Lyme Disease and other chronic illnesses
Laboratory Tests and Diagnosis for Lyme Disease and Co-infections - June 2013
- by Armin Schwarzbach, M.D., Ph.D. - Five Pages -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know it may not be possible to find an experienced LLMD but, if so, I think it would be worth it to have someone very seasoned to put their intellect to this (tests can't tell you everything) so that you can have a better treatment plan.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
IGeneX will pick up 60-70% of Lyme infections. Click on Important information on Lyme and co's - it's a stickie just above your post - scroll down 10 links to the 27 reasons for testing negative for Lyme disease. That's why it's often treated clinically, by history and symptoms.
Posts: 13116 | From San Francisco | Registered: May 2006
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Thanks everyone. Perhaps I misunderstood what she meant. She may have meant for me in my situation based on my history, symptoms, labs and previous response to treatment etc. I will clarify this with her at my next appt. She is in fact very lyme literate and will be attending Ilads conference this weekend.
While I can certainly understand how someone may not test positive but yet still have lyme that is one thing I find very frustrating with this disease. You can have some that in the end believe they don't have it when in fact they do and some that spend years and fortunes believing they do when in fact they don't...and in between all that mess you have amyriad of professionals, some who are proficient at treating lyme and are doing so in the right manner and others who are profiting.
Posts: 1748 | From United States | Registered: Dec 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Apparently, InfectoLab elispot test from Germany (most LL's have capabilities of working with this lab), is the closest one can get to actually determining if lyme is still present or not.
My doc treats on symptoms first, then uses tests as support if needed.
If you need the test for peace of mind, maybe try ellispot?
I had a positive test from igenex, AND positive results from abx and herbal treatments.
But I understand the peace of mind a positive test brings. It is like being in a dark room, wandering aimlessly, then a flash of light so one can get their bearings, and then dark again.
It gives one a sense of direction.
Rambling.
Sorry.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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