Do you know of people who have tested negative through IGeneX?

[hardtolove]

I'm in the process of finding a doctor willing to test me with IGeneX, but I came across a few sources online that claimed that IGeneX tests pretty much always come back positive. So I kind of feel as though, even if I get a positive diagnosis from them, I still won't be able to be fully confident that I've pinpointed the source of my symptoms. I haven't seen anybody state that he or she tested negative through them, but, then, I realize that people who don't have Lyme aren't going to be hanging around Lyme forums.

[Ricobord]

Different labs use different test kits.  You could send your blood to three different labs, and get different positive bands from each one.  

IGeneX uses TWO strains of Borrelia for comparison's sake.  Other labs generally use mass produced kits that mostly use the B31 Shelter Island strain.  Your antibodies might not match up very well to the B31 strain, and you might not show the "right" antibodies for the CDC to call you positive. Also, most other labs do not bother with any bands outside the CDC interpretation, even though there are others that are significant. IGeneX will show those.

IGeneX will report all relevant bands on both the IgM and the IgG.  They will tell you if you're CDC negative or positive and if they think you're negative or positive. I was completely CDC negative.  However, IGeneX said I was positive.

If you'd like to read more about testing, Google "Tom Grier Lyme" or "Tom Grier Lyme Testing".  He is a scientist who had Lyme and coinfections for 13 years before finally getting diagnosed. He has been an advocate for Lyme patients and for change in the medical community ever since.   He explains how the tests work, and why they are flawed.  The Western Blot is a pretty decent test. It's the interpretation of it that is a disaster for Lyme patients. The CDC interpretation is just illogical for diagnosis.  

If everyone who ever got Lyme filed a complaint with the CDC about the testing, perhaps they would finally change the criteria. (You can complain online via their website.)

[JackieCalifornia]

I just re-read your post, and am not sure I answered your questions directly.

"if I get tested through IGeneX Labs as well as another lab like Quest Labs, would the same things show up on both tests in terms of positive vs. negative bands and whatever other markers they may use?"

-- the test results may well be different, because of different test components and structures.  IGeneX tests include all the markers of Lyme, while tests used elsewhere (and perhaps/likely at Quest) exclude some of the markers that are specific for Lyme, meaning no other infection would light up those markers.  In the early days of Lyme awareness and research, there was an effort to create a Lyme vaccine to prevent the disease, just like with measles and mumps.  The vaccine didn't work, for technical reasons, but the way it was structured, someone who go the vaccine would often show up positive on Lyme tests, so those markers in the Lyme test were excluded from the test results to avoid confusion ... never mind that those markers are very valuable in assessing whether one has Lyme. Those markers are called 'bands', and that is what gibsongal mentions above.  Quest tests can result in false negative results, meaning you have Lyme but the test is interpreted to say that you don't.
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"And it's just that IGeneX would classify me as Lyme positive, whereas Quest would tell me the test came back negative because they're using a different set of criteria? Or would I get completely different readings on the tests?"  

-- the tests don't (to my understanding) just say + or - , they show different bands, and the strength of the reaction and on which bands helps a doc interpret the tests.  We as patients have become accustomed to the red light/green light kind of tests (like over the counter pregnancy tests), where you are or you aren't, but Lyme tests require knowledge and experience to interpret the tests in light of your history and symptoms.  We get posters here who want to know where to get the test done, and want to cut out seeing a doc --- but Lyme doesn't work that way.  Lyme diagnosis is based on history, symptoms and test results -- not just test results.  Which is why having a good Lyme doc is critical to the process.
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"... And it's just that IGeneX would classify me as Lyme positive, whereas Quest would tell me the test came back negative because they're using a different set of criteria? Or would I get completely different readings on the tests?"

I haven't had Lyme testing done at Quest, so can't speak to those, but it's possible that the test procedures and printouts are different from those at IGeneX.  IGeneX has an extensive website with a great deal of interesting information, aimed mainly at those with a scientific background, but definitely accessible to anyone willing to read through it.  If you have specific questions about their testing procedures, call them -- they are known to be user-friendly.

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The people who do not get better are most likely the ones who were not properly diagnosed and not fully treated.  Many, many docs do not understand Lyme beyond the knee-jerk approach of the IDSA/Infectious Disease Society of America, the main voluntary group for docs who treat infectious disease, of which Lyme is one.  IDSA says a couple weeks of antibiotics and your treatment is complete; any residual symptoms are due to your immune system over-reacting to a now-vanquished infection.  Lyme docs more logically point out that if you still have symptoms, you are probably still infected, and two weeks of antibiotics is not enough to kill off an infection of the slow-reproducing Lyme bacteria that live in cartilage and other areas of low blood flow where the immune system cannot reach.  

I know someone whose kid got tuberculosis (TB) from a visitor from Latin America, and the standard antibiotic treatment for TB is *18* months of antibiotics, because TB, like Lyme, reproduces slowly, and it is when the cell wall is dividing for reproduction that the bacteria are most susceptible to being killed -- their castle wall is breached, in effect.  Leprosy (Hansen's disease) also has slow reproductive time and long treatment time.  This is not unheard of in the medical world, but unfortunately the Lyme establishment is stuck on stup--- umm, stuck in the past.

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"Also, do most people who are diagnosed eventually get better? It seems like there are an awful lot of people who never see any improvements."

The first hard thing in Lyme is getting a diagnosis, the second hard thing is getting appropriate treatment.  If appropriately diagnosed (for Lyme AND any co-infections, which accompany Lyme perhaps half the time) AND appropriate treated, getting well is definitely doable.  The people who 'never see any improvements' may well be those whose docs handed them two weeks of antibiotics (usually doxycycline, which is not particularly effective in an established case of Lyme) and told them goodbye, without any tests for coinfections, and a diagnosis of the phantom 'postLyme syndrome' when the symptoms persist or recur.

Lyme is still a bit of a mystery, and the complex interplay of one's own immune system with the various co-infections is a bit part of what makes a cure tricky -- but doable.  Finding a doc who understands this (and does not palm off a couple weeks of doxy on you and tell you you're done) is the key to getting well.

Go for it -- and let us know how you do, okay?  Best wishes --

[gibsongal]

i got a neg result at igenx

i had 2 bands on  the IgG   41  58  
and 3 on the IgM   18  41  58

it says could be clinical significant so to re test in 4 - 6 weeks..

[JackieCalifornia]

Good questions you pose!

Some docs prefer one lab over another because the testing/lab procedures differ sometimes in ways I don't know enough to explain, and I just went where my Lyme doc told me to go, so I didn't have to get into the weeds on this question -- but it is a very good question and someone here will probably have some more comments.

Yes, one can get better and even well.  I'm one of those, as are others I know.  Lyme is a complex disease, and when you add in other diseases (co-infections) the same ticks often carry, it gets more complicated -- but it is doable, and it is worth the treatment and the hassle -- absolutely worth it.

Lyme does a complex dance, when you factor in co-infections and individual immune system function (which I think plays a pretty big role in how people react to treatment) -- all the more reason to go to a thoughtful doc who doesn't just do cookie-cutter medicine, because one size definitely does not fit all.  Sometimes there are hidden co-infections that don't show up on tests but then begin to show themselves as treatment for the other infections are treated.  It's sometimes not a straight shot to a cure, but it can be done, and I'm proof.  

So yes, it's definitely worth the hassle and the expense of treatment, but be sure your doc is knowledgeable and thoughtful ... sometimes hard to tell, but if you get the feeling it's not going right, think about changing docs.  Lyme is a complex and challenging field, still under discovery, and it takes a specialist who is a detective at heart to be willing to keep re-assessing your situation as treatment continues.  It can be done, and it's definitely worth it.

[hardtolove]

Thank you so much for all of the information, everyone. So let me know if I have this right: if I get tested through IGeneX Labs as well as another lab like Quest Labs, would the same things show up on both tests in terms of positive vs. negative bands and whatever other markers they may use? And it's just that IGeneX would classify me as Lyme positive, whereas Quest would tell me the test came back negative because they're using a different set of criteria? Or would I get completely different readings on the tests?

Also, do most people who are diagnosed eventually get better? It seems like there are an awful lot of people who never see any improvements.  I hope this is my answer but at the same time am scared to death for it to be my answer because a lot of the stories I've read have made it sound like, once you have Lyme, you're very sick pretty  much for life. It'd be better than the usual being told I'm just making it all up, however.

[Ricobord]

Oh, and I have seen people on forums who were negative at IGeneX and did have Lyme. My PA says they regularly see patients testing negative.  If they believe Lyme is likely given symptoms or positive results for a coinfection, they go ahead and make a clinical diagnosis and start treatment. She said these are usually the sickest patients whose immune systems are very suppressed. She said they usually test positive later on as their immune system perks up with treatment and starts making antibodies.

She also was clear to say that not everyone they see has Lyme. That is why you need to see someone who knows Lyme well, who can look at your history, your symptoms, and your test results as a whole package.

[Ricobord]

I am guessing that most people get tested at their usual lab before they end up at IGeneX. If I had tested positive at my regular lab, I wouldn't have needed to go to IGeneX. Would you pay for IGeneX testing if you didn't think you had Lyme?

I would also guess that people getting tested at IGeneX are more likely to be going to an LLMD and more likely to have tested negative already at another lab, but still have symptoms indicating Lyme.  My conclusion is that a higher percentage of people getting tested at IGeneX have Lyme.

IGeneX uses a more liberal interpretation of the Western Blot than other labs. The CDC surveillance criteria was developed to track a narrow definition of Lyme where there was a very high confidence that a positive was accurate. They wanted false positives to be very rare, and they didn't care about or evaluate the false negative rate.  Unfortunately, this is not well understood by doctors, and this criteria is now used as a diagnostic absolute with the erroneous belief that false positives are common. This has been devastating for legions of patients.

False positives are indeed rare, even at IGeneX. But IGeneX will call some results positive that the CDC calls negative. That is because IGeneX reports other relevant bands that the CDC doesn't.  I was completely CDC "negative."  No mainstream doctor would have diagnosed me with Lyme even as I was so sick I was hospitalized in horrific pain with mental confusion.  However, at IGeneX, they called me "positive" as I showed a couple highly specific antibodies for Lyme.

The argument that "everyone tests positive at IGeneX" is a smokescreen by IDSA and other Lyme denying doctors to dismiss IGeneX and the many cases of Lyme that they find that IDSA guidelines would dismiss.  The only way they can maintain their positions is to somehow discredit the lab that is showing evidence that the IDSA and CDC are wrong about Lyme testing.

[JackieCalifornia]

I agree with your logic process:  negative test ---> not Lyme ---> not on Lyme website.

So-called 'mainstream' docs believe firmly that Lyme is rare, hard to get, and easy to cure, and if you still feel lousy after a couple weeks of antibiotics, it's your immune system overreacting to a now-gone infection -- the so-called 'post-Lyme' syndrome.  Within that paradigm, the docs feel secure they have done everything that needs doing, and the reason for the negativity toward IGeneX is that IGeneX *does* consistently show infections that the older, more commonly used tests (Western blot and ELISA) do not show.

IGeneX has a good website explaining what they do, and if you have further questions, I have found them to be very user-friendly.  They won't diagnose you over the phone, but they will explain their testing -- but first, stop at their website -- it's quite detailed about what they do and why.  I would call them 'happy warriors against Lyme' -- kind and upbeat.

As I understand it, the IGeneX tests (you can read up on this on their website) look for DNA bits of the Lyme bacteria -- a direct test.  The older Wblot/ELISA tests look instead for your immune systems *reaction* to Lyme bacteria -- and your immune system will trail off pretty soon after you are first infected, because our immune systems are designed to deal with bacteria that can be killed off within weeks .... whereas Lyme bacteria have tricks to evade detection by the immune system, including (1) very slow reproductive cycle, meaning fewer chances for the immune system to kill the bacteria when the cell wall is disrupted for reproduction; and (2) the creation of 'biofilms' by the Lyme bacteria, slimy shields they create to hide in, avoiding detection by the immune system.  Lyme also tend to cluster in cartilage because it has low blood flow and thus fewer chances to be detected by the immune system -- like bad guys skulking in back alleys while the lazy cops drive up and down Main Street pleased that there are no bad guys around. (Don't get me wrong, I love cops.)

NonLyme specialists are not yet clued in, for complicated reasons of ego and politics among the docs who did the initial landmark work on identifying Lyme disease a few decades ago.  These early docs are like the blind men and the elephant ... and they only discovered the trunk, completely ignoring the big feet, the stringy tail and the floppy ears, because they stopped looking when they found the trunk.  Pride and arrogance have gotten in the way of scientific rigor for these early docs, and they still hold sway in the medical community ... but Lyme specialists (and IGeneX) plow ahead, bless their hearts.

If you get tested at IGeneX and have a positive result, a traditional doc will not likely accept the tests as evidence, so you really need to see a Lyme specialist, which we patients refer to (for convenience) as an LLMD, short for Lyme-literate MD, not a formal title.  ILADS is the main voluntary group for LLMDs, and you can get a referral from them by emailing to

                  contact [at] ilads [dot] org

or also check for local Lyme patient groups, easily findable online (tho they vary in quality and depth of knowledge).  An LLMD would also know whether to test you for co-infections, which are other diseases the Lyme ticks very often also carry, but they need different testing and diagnosis and treatment from Lyme.  Common co-infections include babesiosis (like malaria), bartonella and Ehrlichiosis, plus a few others less common.

ILADS dot org has a section called something like Burrascano's guidelines ... it is a somewhat rambling disquisition on Lyme and how to diagnose and deal with it.  Burrascano is one of the great LLMDs. Don't get overwhelmed by it, but it's there if it helps you get your bearings.

Let us know if we can help -- and don't give up till you've got answers you are comfy with.  Take care -- we've all been where you are.

[wonko]

I tested negative through Igenex by CDC standards.  I was tested by them on three occasions spaced over about 3 years.

Regardless, I was clinically diagnosed with Lyme and co-infections and improved greatly by treatment administered by an ILADS-member physician.

[carrie235]

Hi Hardtolove:

I have read about MANY people that have tested negative through Igenex.  I tested positive for many months and then after treatment, finally started testing negative.  Went off treatment for about a year and now my results are back to positive.  So, YES....google it...I'm sure you'll see the same.