posted
So I am still waiting on igenex but my LLMD diagnosed me last week with lage stage lyme. Quest gave me 3 consecutive negative results.
Has this happened to anyone else? Where you guys had every lyme test negative yet still was diagnosed that you do in fact have chronic lyme ?
I'm trying to look for perhaps a better LLMD . But in the mean time even though she said I absolutely have lyme .. My parents are so stubborn and think it's impossible when all tests are negative. So frustrating !!!!
Posts: 123 | From New jersey | Registered: Oct 2015
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posted
Which bands showed up? Surely you had positive bands? Remember .. not all bands are tested with Quest. Igenex is one of the few labs that does it right .. and tests for ALL possible bands.
My test was not clearly positive. The sickest people are the ones whose immune system is unable to make antibodies for the Western Blot to show more bands... and/or they have a weaker response on the bands that show up.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I was tested by quest twice and IGg bands 18,23,28,30,39,41,45,58,66,93 were all negative and IgM bands 23,39, and 41 all negative. Not a single one was positive
Yet I am basically bedridden now. My LLMD said I do have lyme based on my symptoms and lesion on my brain.
So because I had absolutely NO positive bands ... Does that mean im one of the sickest? Posts: 123 | From New jersey | Registered: Oct 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Hasn't someone already posted the link for reasons testing might be false negative? If not, here is another one that gives you some ammunition with your parents.
Also, there are other pathogenic borrelia species, and most are not tested for. Only recently has a test been developed for Borrelia miyamotoi, and most people don't get tested.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
If I checked off the complete co infection panel then that means I should be getting checked for those too right?
Posts: 123 | From New jersey | Registered: Oct 2015
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posted
Medical Questions has a stickie at the top of the section regarding important information about Lyme and co-infections. One of the links there gives 27 reasons for why Lyme tests may not come back positive.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Semia: So I am still waiting on igenex but my LLMD diagnosed me last week with lage stage lyme. Quest gave me 3 consecutive negative results.
Has this happened to anyone else? Where you guys had every lyme test negative yet still was diagnosed that you do in fact have chronic lyme ?
I'm trying to look for perhaps a better LLMD . But in the mean time even though she said I absolutely have lyme .. My parents are so stubborn and think it's impossible when all tests are negative. So frustrating !!!!
I have had chronic lyme for twenty + years and my tests have always been negative, despite two classic bullseye rashes, and one smaller dark oval rash at the site of a tick bite.
These tests are for the most part totally unreliable--- under diagnosing millions of people.
But understating the epidemic is of course, is the objective of the Epidemic Intelligence Service(EIS) and the CDC.
They don't want their nasty secrets out.
Posts: 696 | From New York | Registered: Aug 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
If your LLMD says you have lyme, then you have it. The correct diagnosis for lyme is clinical (symptoms). Most people show positive test results after a few months of treating anyway (that's what happened to me).
Lyme and co infections are easily able to avoid detection. It's rare to get a positive test. Don't live for a lab test. It's the symptoms that count.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You might want to give your parents a copy of the book: Cure Unknown (Weintraub).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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