posted
I've had three lyme tests through different companies. Only Igenix came back with anything positive and three bands only. I've also read debates about Igenix and if it's accurate. What's the truth?
Are false positive bands possible?
Thanks!
Igenix results from two years ago: IGM 34 IND 39 ++ 41 IND 66 + IGG 41 IND 58 ++
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's the story 99.9% of people here say, including me. Only Igenex found anything. There are endless reasons as to why this may be (more accurate, two strains tested instead of one, more bands tested for, and more).
99.8% of members here will say Igenex is as accurate as they get and the results are gold. They passed a testing audit from the NY state health department or something along those lines.
You'll hear false positives don't exist.
Basically if you read this link, this is the basis for most people's opinion:
Me personally - I'm on the fence about Igenix. It's always smelled a bit funny to me. THIS IS JUST AN OPINION. We all have a right to one. The WB is really one piece of the puzzle. It takes it all to come to a logical conclusion / Dx.
I get mixed thoughts about all their endless IND bands too. Someone posted a good link on the Igenex webpage regarding internal validation of their process.
On the other side, IDSA docs despise this lab and feel patients 'buy' positive Lyme tests from them.
It sure would be nice to scrap all the crap and have a reliable test. My thought is if no bands show up on other commercial labs, one should be able to have a positive PCR test for the STARI strain (other one Igenex tests for and other labs don't). That's the proof I need to be convined.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The thing about Igenex is, it's just another Lyme test that is semi-accurate, but Lyme needs to be a clinical diagnosis anyway. I consider Igenex the most accurate WB out there, but that doesn't mean it's 100% accurate either.
According to Igenex' own statistics, false positives do occur. But they are around like 4-5% (or something like that), if you test positive IGM.
Now, if you get a positive WB via Igenex, plus coinfections, plus symptoms, I'd say it's pretty likely you have some lyme/tick problems there.
Posts: 584 | From NY | Registered: Feb 2009
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Ich,
i seriously doubt it if you are having symptoms.
IND is considered positive.
some of your + bands are very specific for borrellia.
if you have symptoms of lyme then your doctor will make a clinical diagnosis based on your symptoms regardless of what the 'results' show.
i tested negative with IGENEX but CDC positive with lab corp. one of my first docs said i had a 'false positive.' that was bull and i found a lyme literate doctor as fast as i could!
i definitely HAD lyme and was treated for almost a year.
see guidelines below from the top lyme docs in the USA.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If this was 2 years ago I would retest if you have concerns.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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quote: but Lyme needs to be a clinical diagnosis anyway. I consider Igenex the most accurate WB out there, but that doesn't mean it's 100% accurate either.
umm no .Lyme should be a test ,clinical diagnosis = bull crap. It has too many ,too varying symptoms. We need a high reliability test which is positive when you have it and negative when you dont .So you could base your treatment on it and not flying blind (like all people do now)
Posts: 856 | From MA | Registered: Jul 2009
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quote: but Lyme needs to be a clinical diagnosis anyway. I consider Igenex the most accurate WB out there, but that doesn't mean it's 100% accurate either.
umm no .Lyme should be a test ,clinical diagnosis = bull crap. It has too many ,too varying symptoms. We need a high reliability test which is positive when you have it and negative when you dont .So you could base your treatment on it and not flying blind (like all people do now)
Unfortunately, there is no highly reliable test right now. IMO Igenix is more reliable than all the other tests, but even still, it is far from perfect.
It would be wonderful to have a fool-proof test, but until then, you need to do a clinical diagnosis. That doesn't mean you ignore the test entirely, but you consider symptoms and history as well as the test.
As for buying positive test results- Ignenix is a certified lab. With all the scrutiny they are under, if there were something shady going on, it would have been found by now, IMO.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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quote: As for buying positive test results- Ignenix is a certified lab. With all the scrutiny they are under, if there were something shady going on, it would have been found by now, IMO.
This is an argument to authority. -e.g. " If something is highly respected it must be right". According to that logic IDSA guidelines are absolute true.
Better argument for the lab would be their proven accuracy not some dubious authority argument
Posts: 856 | From MA | Registered: Jul 2009
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posted
I can see your point Coltman. And I'm definitely not trying to say Igenix is perfect. One of the things that frustrates me the most is the unreliability of Lyme testing.
But I feel Igenix is the most reliable test out there, right now (my opinion, obviously others disagree). So, until another test comes out, I'm sticking with them.
I read a bit in "Cure Unknown" by Pamela Weintraub that mentioned a scientist trying to come up with a better test for Lyme. No idea what progress has been made since, but it looked promising.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
Lyme tests are only 30% accuarate according to testimony of ILADS doctors at the IDSA hearing, while the test for HIV/AIDS is 99.5% accurate.
From what I recall, these doctors stated that for a test to be considered acceptable it has to have an accuracy rating of over 90%.
We desperately need a better Lyme test. 30% is completely unacceptable and yet the majority of doctors still blindly accept the results of these substandard tests as if it they had the accuracy of an HIV/AIDS test.
Because of this tens of thousands (if not more) are told they don't have Lyme using such a completely unreliable test. The patients not knowing this, are certain they don't have Lyme because they tested negative!
They get misdiagnosed with MS, ALS, fibromyalgia, chronic fatigue syndrome, IBS, the list goes on and on.
It's a tragedy.
Posts: 366 | From MA | Registered: Apr 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well since i had a classic huge bullseye, and the igenex was positive, i'd say i'm pretty sure i have lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
False positive bands are possible. IgeneX has a special confirmatory test for band 31 for that reason.
Lyme testing is horrible regardless of what the IDSA states and not to be relied upon for a matter as important as ones lifelong health.
With testing as inaccurate as it is and with so much at stake, a clinical diagnosis is the only thing that makes any sense.
ILADS docs know the most about clinical diagnosis.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You can't bank on the confirmatory test either and
they say just that. If it is not in the sample it
will not be detected. There are many other tests
to use in conjunction with the WB. But docs just
prefer to say we don't have it here.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
My doc who is well known at ILADS will only use Igenex. But even so, we got a PCR done at Clongen....it came back positive. So, I think that Igenex may be the best lab for LD, but it doesn't hurt to get another opinion.
We went to Igenex in person and found them to be very helpful, professional. We picked up lots of good literature there,too.
I agree with those who say that clinical diagnosis is worth a lot! My doc started me on heavy abx even before the tests were in....and I am already feeling much better. He knew LD when he saw it! And that is worth so much, after so many doctors who missed it...even with rashes and symptoms so clear.
It is worth the money and the wait to get in to see a top rate doctor! In the long run it costs less and works more quickly.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
I'm still so confused! I've been diagnosed with CFS for 5 years, but nothing that's suggested with CFS has ever helped.
Accupuncture helped for a little while. Gamma globulun shots for a little while, but other than that. Nada.
I'm not an outdoors girl, never got a rash. Felt a flu, then neck pain (have a bad back for years), then another flu like thing after a vacation where I really started going down hill.
It's more fatigue for me, some muscle pain when the fatigue is worse, but never swollen joints, etc.
I'm still confused if false positives are possible.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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posted
And how do I know I didn't have lyme in the past, it's not active, I just have antibodies. I have more IGM results than IGG.
I've seen studies where they tested farmers in WI. 50% tested positive for lyme antibodies, but never had symptoms.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
How do we know, if this is true, what the trigger is? Genetics or enviromental? Who knows?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
icth, I think you know if its active, if you have symptoms. If you just have antibodies and no symptoms then why would you worry about it?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
lctheobald, have tried running antivirals for several months?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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But you can have symptoms of lyme, but it could be the same symptoms of other diseases as well. So how do I know that it's active lyme or that it's now a different disease, and I had lyme in the past and just have antibodies now?
I'm so confused. All my western blots came back neg, no positive bands exect igenix. Makes me question their results. Or if it's even active or just antibodies.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Igenex is reliable. They include all bands in the WB.
The CDC kit tests are not reliable. Thousands are currenlty undiagnosed or misdiagnosed because the test used at mainstream labs are so horrible.
posted
Many folks do not know about the rigorous licensing requirements that test labs must conform to be in business. One need only study this document:
I've even heard doctors say that certain labs have "too many positive readings," without even knowing what the CLIA acronym stands for...very sad indeed.
This is the main "good housekeeping" stamp of approval that matters. Of course, the fact that Igenix also regionalizes their tests to enhance accuracy of testing strains is often overlooked...
If you have the time & interest and really want to drill down some more, see this document:
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Thanks everyone still confues if I have lyme, but you links help..
I just like thins in black and white, yes, you have lyme, or you don't. Not a well, we treat based on symptoms. well the symptoms could indicate so many diseases.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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You are chronically fatigued. 5 years of care by Drs have not helped you nor found a cause.
(CFS, is just a diagnosis of acknowledgement that you are chronically fatigued, for unknown reasons. It's not a disease, just a name.)
100s of us were told we had CFS and then discovered that it was lyme. But ONLY after the Drs looked for EVERY OTHER DISEASE. Usually we're told it's depression.
You tested positive from Igenex, the most accurate of all the testing labs.
CFS has no cure, it has no known cause. Lyme is WELL KNOWN to cause chronic fatigue.
What exactly are you confused about?
What is your alternative diagnosis? A lifetime of chronic fatigue of unknown cause? Lyme diagnosis explains your symptoms.
Is "JUST CHRONICALLY FATIGUED" is a more satisfying "black and white" diagnosis?
Good luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
An antibiotic trial is probably the most accurate way to figure out if you have Lyme or not.
My doctor starts his patients on an antibiotic, then after 30 days uses any symptoms the patients states as part of the diagnosis (mostly looking for co-infections too).
If you herx, you most likely have Lyme/tick diseases. If you get better, well... you have your answer there too.
If you try several antibiotics over a period of 3-6 months or so, and don't notice any difference at all, good or bad, then you may not have Lyme.
Posts: 584 | From NY | Registered: Feb 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
When in doubt, test for everything...
Have you run complete hormone panels as well?
If oral abx fail, you could consider IV if you haven't already.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I have been on doxycycline 100 mg daily 2x's daily for 4 days no changes. I wonder if that's a high enough dosage to notice a change. I see burrasco says 300 mg (I weigh 110, so not much).
I've also had herxes from diflucan alone, which I'm also on, so that makes it hard to differentiate if I'm herxing from antibiotics due to lyme, or diflucan.
However on other antibiotics or being on 2 at once, I had to quit after a week on two occasions because of chronic yeast infections, even while being on diflucan and the yeast diet simutaniously and taking probiotics. So I don't know i could be on a higher dosage or other antibiotics. Because of my bladder disease I also can't go herbal.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
4 days is nothing...you have to run "good" protocols from several weeks to months to make any ground generally...
Lisa, what is your thyroid status?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I have a friend that is the most well known pathologist in my city. He called Igenex and questioned them.
He called me back and said they are 100% legit and know what they are talking about... He is not lyme literate either.
Posts: 458 | From Miss | Registered: Mar 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Lisa I was already neuro and got a lot worse about
3 weeks in. I could not get out of bed. Vomiting,
pain, dizzy, you name it. When they say you will
get worse they mean it. Don't give up on it yet. I
would get you some can meals to pop. Microwave meals
quick fixes to have on hand. And epsom salts on hand for soaks if
you get to hurting too bad will help.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Both of my LLMDs were members of ILADS at one time. One of them was not comfortable with the fact that the owner (president?) of IgeneX is an activist in ILADS.
I can see why one would become an activist, given the narrow criteria of the CDC. But at the same time, IMHO, it is a clear conflict of interest to promote one's own company in this way.
THAT HAVING BEEN SAID, my LLMD recently gave my blood samples to 2 labs: IgeneX and Stony Brook Univ Med Center. Both labs administered the WB at the same time.
Both came out CDC positive, with a few differences: IGeneX showed a double positive on band 41 ( IgM), Stonybrook had a single positive. IGeneX showed a single positive in band 18, Stony showed nothing.
Both labs showed single positive on band 39.
The only other difference was on the IgG test. Stony showed 2 bands IND while IGeneX showed 2 bands positive, and 1 band IND.
I don't know enough about the test to draw the correct conclusions, but as a lay interpreter, I would say that Stonybrook is a bit more conservative on the exact same band interpretation. Why this is, I do not know.
I am not saying that IGeneX is not trustworthy.
3 of my kids are all being treated for Lyme based solely on 1 or 2 positives or IND's on the IGeneX WB. None of them were CDC positive. All of them are herxing.
-------------------- When we are no longer able to change a situation---we are challenged to change ourselves. (Viktor Frankl- Holocaust survivor) Posts: 460 | From Maine | Registered: Apr 2009
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Stony Brook University Hospital Lyme Disease Laboratory
quote: We also offer the qualitative Lyme Western blot assay which is manufactured in-house . Positive bands are reported for both IgM and IgG. We have the ability to report CDC non-specific bands if requested ...
IGeneX "manufactured" their test in-house. Focus lab did the same. Forgot the rest of the labs that did the same. Old age. Posts: 426 | From Berkeley, CA | Registered: Feb 2009
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There are endless reasons as to why this may be (more accurate, two strains tested instead of one, more bands tested for, and more). 
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