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 ++
Posted by seekhelp (Member # 15067) on :
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.
Posted by Lemon-Lyme (Member # 19229) on :
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.
Posted by gemofnj (Member # 15551) on :
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.
If this was 2 years ago I would retest if you have concerns.
Posted by kitty9309 (Member # 19945) on :
I only got a weak + and an IND on band 41 from Igenex.
This was 14 1/2 years after a bulls eye after camping followed by typical Lyme symptoms.
I worry more about false negatives.
Posted by coltman (Member # 21272) on :
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)
Posted by Nicole_Denise (Member # 20620) on :
quote:Originally posted by coltman:
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.
Posted by coltman (Member # 21272) on :
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
Posted by Nicole_Denise (Member # 20620) on :
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.
Posted by alliebridge (Member # 9103) on :
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.
Posted by randibear (Member # 11290) on :
well since i had a classic huge bullseye, and the igenex was positive, i'd say i'm pretty sure i have lyme.
Posted by TerryK (Member # 8552) on :
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.
Terry
[ 08-20-2009, 05:06 PM: Message edited by: TerryK ]
Posted by Pinelady (Member # 18524) on :
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.
Posted by farraday (Member # 21494) on :
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.
Posted by lctheobald (Member # 18093) on :
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.
Posted by lctheobald (Member # 18093) on :
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.
Posted by Pinelady (Member # 18524) on :
How do we know, if this is true, what the trigger is? Genetics or enviromental? Who knows?
Posted by sutherngrl (Member # 16270) on :
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?
Posted by Lymeorsomething (Member # 16359) on :
lctheobald, have tried running antivirals for several months?
Posted by lctheobald (Member # 18093) on :
lymeorsomething -
I've tried antivirals for 2 months at a time, no change.
Posted by lctheobald (Member # 18093) on :
sutherngrl-
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.
Posted by lymebytes (Member # 11830) on :
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.
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:
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.
Posted by JamesNYC (Member # 15793) on :
Let's see,
You come from a state where lyme is epidemic.
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
Posted by lctheobald (Member # 18093) on :
I'm confused if my Lyme is chronic or I've just built up antibodies from past exposure.
A study of farmers in WI showed that 40% had antibodies no symtptoms.
So how doyou know if it's from the past when your immune system may have been better and able to handle it, or is currently affecting you?
Posted by Lemon-Lyme (Member # 19229) on :
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.
Posted by Lymeorsomething (Member # 16359) on :
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.
Posted by lctheobald (Member # 18093) on :
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.
Posted by Lymeorsomething (Member # 16359) on :
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?
Posted by lctheobald (Member # 18093) on :
lymeorsomething
my thyroid is good, my tsh, free t4, t3, reverse t3, I've had them tested for years.
I know it will take weeks to months see any positive results, but I thought I would herx pretty quickly.
Posted by Buster (Member # 19472) on :
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.
Posted by Pinelady (Member # 18524) on :
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.
Posted by thejoje (Member # 19976) on :
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.
Posted by ChuckG (Member # 19093) on :
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.
![[Smile]](smile.gif)
There are endless reasons as to why this may be (more accurate, two strains tested instead of one, more bands tested for, and more). ![[Wink]](wink.gif)