Igenex: from 'Anyone hear of this place.'

New thread because I don't want to disrupt  the 'Anyone hear of this place...?' post. 

WHOA, WHOA, WHOA!!  HOPING: Please help!  In that thread, you said, 'I cannot say I'd trust Ignenix as everyone returns positive.'

I don't know that I'll ever be able to test thru Igenix, have been just waiting to see what LLMD recommends.  But I thought Igenex was supposed to be the best, most reputable lyme testing lab available?  I have been reading a LOT. And I have read hints of the statement you made.  It's really tough to sort the facts from the fiction, sometimes.  If there is any chance that I really do not have Lyme, I certainly don't want any false positives! 

I understand that the diagnosis is supposed to be mainly clinical.  But Lyme mimics many other illnesses.  I did, in fact, have a serious crash of some sort following my tick bite, including the recurring fevers, pain, unbearable anxiety, etc.  But this was the same time I was laid off from my job and had difficulty finding a new one.  So, if there is any chance that I do not have Lyme, I need to know, at least to the best of my ability.

I'm not asking anyone to commit any slander or libel, but would like to know opinions about Igenex -- just in case I can get tested thru this lab.  And if there is any chance in heck that they report false positives, I think we need to find out!

Also, I would like to know opinions on this:  If you had only one shot at one lab test and one lab, so you wanted to get as much truth/accuracy as possible out of it, what test and what lab would you choose?

Maybe you all experience this, or maybe you don't? I am relatively pain free today (except for that danged neck), and at times like these, while reading the suffering and symptoms of others, I begin to wonder if I really have Lyme or if I'm just mentally ill and just some sort of human defect.....?

Thank you so much for your input, CajunGrl. It is very much appreciated. I swear I am asking so many questions and reading all that I can -- I really hope to be of some help and benefit to someone soon!

On the HaverfordWellness link, I read that having lyme specific antibodies does not necessarily mean you have a live lyme infection. This is one of my biggest questions, because my Quest WB IgG showed I have antibodies specific to lyme. I guess I have no doubt I have been exposed to lyme -- I had illnesses, one more serious than the newer one -- after 2 known tick bites. As you've probably noticed, I continue to question whether or not my body has succeeded or is still fighting to win against those darnable spirochetes! In many ways I am not as sick as I was 2 yrs ago, but in others, too much stuff has not improved. (including the cognitive) I'm not sure that I'm getting sicker (until I have a sick day, ha!) I do understand, tho, what you said about 'remission'. I guess I have not yet experienced that unless I'm in one now.

I do not believe I'm in denial, I've just always been a truth seeker (.... constantly disappointed because it's so elusive.....)

Right now I'm in that Limboland that I'm sure you all have lived in yourselves. I have an appt w/ a LLMD first Tues of June, but BCBS has told me to cancel it, because they doubt they will cover the visit, or more importantly, the labs. I have requested that my PCP submit his documentation of his referral and I am logging everything, including the rude, snotty remarks BCBS has made.

Sorry, got off topic there, but my intention here is to say I am by God going to learn if I have an active Lyme infection. If I am convinced that I do, I am willing to be a bit of a G Pig. I'm not sick enough to accept a pic line, but I will take whatever antibiotics are prescribed, if they are prescribed. I will see if I feel better. If I ever feel completely better, I will go off the abx regardless of what llmd says, and I will see what happens.

I know a lot of you have already done this and suffered from the consequences, but I will do it and learn. If I am convinced I have an active infection, I will also up my C megadoses and go heavier on the garlic, adding probiotics and whatever other supplements will help my immune system.

Couple of other things:

1. I would be able to afford 1 or 2 Igenex tests, however, they will not test you without a Dr's order.
2. I just looked up Quest PCR test and they say false positive results are possible. I don't get that?
3. There has GOT to be some kind of test available thru our insurance policies that will help us get a proper diagnosis. I know everyone is fighting for that and I will join in that fight. I will start by writing to Quest and requesting info on the bands they did not report.

Meantime, I'm fighting BCBS and staying on another LLMD's long waiting list.

CajunGrl, did you not test positive by Igenex? I'm sorry, I've read everyone's results, but can't remember them all....

Thanks again.

Post Edited (LymeUnknown) : 5/25/2009 1:37:23 PM (GMT-6)

I was only tested once by labCorp tested positive for IgM, negative for IgG, was last bit many yrs ago. so go figure. its confusing to many. and I like you LymeUnknown do not have as many troubles as many in here, my brain is still working, but for how long? as i did show on my MRI 10 to 15 lesions. your lucky your able to get a apointment with a LLMD, I dont have 1 close to me at all. not even sure there is a LLMD in my state. my next step is to look into experamentl testing to see if i can get some kind of treatment.( it has to be better then nothing)


also when i talked to the health dept. they said to me Igenxe wasnt as good as everyone thinks. just what i was told.

wishing everyone the best,

well i cant say about the labs other use but the 1 here in dallas tx. did well by me, and as for the health dept. helping me they have helped more then the flipping Dr.'s here, lest they are trying to find me someone wiling to treat me

haven a bad night here i'm off.

wishing everyone well

following a tick bite - attatched for over 36 hours & engorged [huge!] - I suddenly got very stiff neck with unusual muscle pain in my shoulders/chest -also a 'tight' feeling in diaphragm area.  I had never heard of lyme.

my thoughts at the time were 'what the heck have I done?'

this was 3.5 years ago. - episodes of stiff neck etc; also nauseous/depression/anxiety/fatigue/heaviness/headaches/congested feeling in upper body/buzzing sensation - upper body/face pain/feelings of numbness in face.  - all exagerated approx. every 4 weeks - I thought it must be 'time of the month' related.

fibromyalgia - was suggested so I started reading about it .

many visits to chiropractor & massage - didn't help

whilst reading up on fibro. came across small paragraph on lyme disease !

this was over 2 years after tick bite. - suddenly remembered the 'tick' !!

I am from U.K. where lyme is not really ever mentioned - definately not by mainstream doctors.  - cut a long story short - I eventually saw LLMD. - who recommended abx. - doxy.

I either had a 'bad herx' or a 'bad reaction' to abx. so stopped abx.

that was 4 weeks ago BUT since the 'effects of doxy wore of - I have been feeling 'pretty good'  I have never had a positive test for lyme

I am retutning to LLMD next week to ask his opinion/advice on abx. - maybe to try a different abx. or to get back on 'doxy' and maybe take more 'supplements' - ie;acidophilus etc.

Whatever I have wrong with me ?? - the abx. did something to ease my symptoms - it could be coincidence - I won't know untill I start abx. again - which I am definately goin to do - I have had pain the last few days but I know I have been over-doing stuff - almost 'testing myself/illness - I have not been as bad from over-doing stuff as I would be before abx.

my non-medical opinion/advice to anyone who suspects they have lyme - would be find an LLMD. - try abx. - even with no/negative tests.

gorbs

The reason Lyme blood WesternBlot antibody tests can be falsly positive is simply because there are sufficient non-Lyme-specific bands to constitute a positive result in the absence of Lyme Disease. That is the only scientifically verifiable false positive. All other positives, therefore, must be true positives.

Lyme PCR tests are very accurate IF and ONLY if the result is positive because the ONLY way to have Lyme DNA in the sample being tested is if the source from which the sample came is infected with Lyme. However, if negative, the PCR test does NOT rule out Lyme, especially if the PCR test is done on blood or CSF. Lyme bacteria prefer more solid tissue to move through and live in vs. something as liquidy as blood or CSF, plus they are better able to hide from the immune system in tissue vs. blood or CSF.

Knowing this, I personally would rather have a lab which specializes in testing for tick-borne illness (such as IGeneX) do my tests than a lab which does not specialize in tick-borne illness (such as Quest, LabCorp, etc.).

Furthermore, even the CDC agrees that Lyme diagnosis is ultimately based on clinical examination and patient history, with tests only providing support of the diagnosis when positive.

Just my $.02...

15 years ago, I had a bulls eye rash after camping, followed by swollen knees and vertigo in the few months following.

The vertigo had come and gone over these years. After a round of steroids in 2006 for suspected Meneire's Disease (inner ear disorder), I had many more symptoms appear.

My Igenex WB is negative.

Question: If Igenix is the gold standard, and the results are negative for Lyme, does that mean one doesn't have Lyme?

Glad you know what you have Scorpio and are getting treated.

Igenix is out from the postings here as far as ruling it in or out.

Basically, I'm hearing there's no reliable test. That arriving at Lyme diagnosis is only possible by:

1. Having symptoms from the 100 plus symptoms list.
2. Being evaluated by an LLMD.
3. SPECT.

I just wish there was a cure! That's where I'd like to see the research go. How do we get that going???

HopingToFindCure,

You are correct - there is no test that can absolutely tell you one way or the other whether Lyme is the correct diagnosis. This bug is truely evil, and masquerades as every illness in the book and then some. Nobody can even be sure when they've achieved a cure until a more accurate test is developed. That's why better tests for this disease are needed - so that one can know when one is done battling this critter, so one can know what treatment(s) are successful and not. Research needs a better test in order to figure out what treatment(s) work best. Until then, everyone is just taking guesses. The politicalization of Lyme Disease is the biggest handicap to research about Lyme and the development of better tests & treatments.

BUT you know your body best. If treating Lyme brings relief (eventually), then stick with it. If not, keep looking for solutions.

Take care,

@ Kitty9309

>>15 years ago, I had a bulls eye rash after camping, followed by swollen knees and vertigo in the few months following.

 The vertigo had come and gone over these years. After a round of steroids in 2006 for suspected Meneire's Disease (inner ear disorder), I had many more symptoms appear.

>>My Igenex WB is negative.

 

What were they testing for exactly at Igenex? Co-infection too?

Were you treated immediately for the lyme 15 years ago with antibiotics?

The steroids are going to knock out your immune systems defenses, so that explains why more symptoms appeared.  The question then becomes, what is causing those symptoms.  I'm pretty sure that the bulls eye rash is only associated with lyme disease, and not the co-infections.

Hypothetically, it was possible for your body (with or without antibiotics) to eventually fend off the lyme disease, but what if something else grabbed a foothold in your body.  You could be managing your day to day affairs with a candida infection (or maybe another co-infection).  Wham, you take the steriods and the candida flare up and cause a lot of these symptoms.   Meanwhile, you get tested for lyme disease and nothing shows up.

I believe that lyme testing is fairly innacurate because :

1) if we look too early, our immune system is in such chaos (low CD57 count) that the body just can't generate the antibodies to fight off the initial infection - it might even be possible that during a herx reaction, our immune system is thrown for a loop and cannot generate the antibodies, which might explain those folks that get tested right when they relapse when facing a herx reaction - also, one has to wonder if the ELISA capture system can detect a borrelia/anti-borrelia complex, that is, can the ELISA detect an antibody that is already bound to the bacteria - if they are using parts of the bacteria to capture the antibody, there may not be room if it is already bound up with bacteria

2) if we look too late, any possible treatment could have handled the lyme infection, but something else that came with it is causing the problems that the antibiotics/treatments did not account for

3)  could there be other antibodies that cross-react with the borrelia bacteria, that is, maybe there is another bacterial antibody that will show up positive in lyme testing - which is why the western blot is needed to confirm the initial positive testing - this could explain why certain bands might show up for a majority of cases, yet might not be indicative of lyme (band 41 anyone?)

I was EIA positive the 1st time (Tampa General - that great 'cornicopia' of Lyme knowledge) and WB negative. On the second test (either LabCorp or the other one) I was EIA positive and IGM positive but, IGG negative. Through Igenex, I was fully CDC and NY state positive.

I have the whole list of tests and panels and prices from Igenex. It is overwhelming and would have no idea how to choose the right test(s). There's more than one Western blot, differing prices.

Idea has popped up (and will probably be popped right back out!): Are tests for any of the co-infections any more reliable than for Lyme? If so, maybe a start would be to be tested for co-infections and if any are positive, then assume, AND test for Lyme. Would this make any sense?