Can my Lyme serology negative test result be wrong?

Hello everyone,

I recently posted a post on the Chronic Fatigue forum, describing my symptoms and asking for ideas of what people think might be wrong with me. You can read the post here: https://www.healingwell.com/community/default.aspx?f=15&m=3028382 One person suggested that it could be Lyme Disease.

I've heard that false negatives come back a lot with Lyme. But I got a Lyme serology test, which I've heard is very accurate for diagnosing late-stage Lyme, and it came back negative.

What should I do-- should I get another test or see a Lyme-literate doctor? How would I find one of those in Canada, anyway?

If you have time, I would be very grateful if you could read through my post and give me any other ideas as to what might be the problem.

Thank you very much!

I would get checked for PANDAS TOO!!!!!

Hi, I'm not sure what tests are serology tests. I can tell you the Western blot/elisa tests my son had (2x) were negative although he had multiple expanding bullseye rashes.

Hello again,
I have not posted on this thread for a while, but I'm still confused about whether or not I should get further testing. (I've been pursuing other health treatments and tests over the past few months.) To clarify, the test I got was an IgG serology test. Is this the same as a Western Blot test, or could it be a different kind? If it was a Western Blot test that I got, could it still be wrong?
When I look it up on Google, the search results are very confusing, aren't they?
Thanks.
Mangaka

where in Canada are you from?

If it's BC, or you are close to BC and can travel - there is a LLND in Richmond. 80% of his business is Lyme disease...so he is very knowledgeable and experienced in treating.
Someone on this forum sees him and says he is good.

Serology means detection of antibodies to an infectious agent. IgM class antibodies are the first to be produced in response to an infection followed by IgG weeks later as the long term, protective antibodies. These are detected by two methods, ELISA (enzyme linked immunosorbent assay) which is the initial/screening test. If positive, then results are generally confirmed by a Western blot, which is really just an ELISA in a different format that identifies the antibodies to the varied proteins of an infectious agent. Positive IgM means a recent infection; IgG an older and perhaps former/resolved infection. These results must be evaluated in light of your other clinical symptoms and exposure history including the bullseye rash, erythema migrans, in the case of Lyme disease.

Laboratories, like IGeneX, can make their own tests, or modify the procedure (and interpretation) of FDA-approved tests, and their claims are not always evaluated against rigorous scientific review. LLMDs are also not always in it for the right reasons either and have perpetuated a lot of myths and repeated visits and sometimes dangerous antibiotics. Blaming many symptoms on one organism doesn't scientific sense and allows unscrupulous entities to create unproven tests/therapies that reward them with $$$.

Tube you are mistaken in many of your points. You are propagating false or at minimum outdated information.

Igenex testing has been through rigorous evaluation and verification. If memory serves FDA doesnt require the existing test meet certain standards (dont get me started on the corrupted FDA, separate issue). Igenex tests for more borellia specific bands than any other labs currently. This has been a long reported falsehood about igenex testing, you are just a robot repeating lies. Most of us have had to use our precious limited energies to chase this falsehood to reassure ourselves and find the truth.

You are likely correct about IgM and IgG in some cases EXCEPT when it comes to lyme you IgM IgG statement is Inn correct.

As far as llmd's being less than trustworthy my ten year experience trying to get conventional doctors to correctly diagnose me, which they did not, I spent thousands on these non llmd doctors, lost my 20 year career trying to get help, lost my health the longer I went undiagnosed, misdiagnosed, lost relationships. They had absolutely no sense of urgency, at times were abusive and dismissive or condescending. Ran a boatload of tests and half the time coud not interpret the results. I was told repeatedly what I had could not be lyme since my multiple ELISA tests were negative. As of this year they were all wrong. It is a travesty bordering on criminal what conventional doctors are getting away with, I would not trust any of them to apply a bandaid.

Your comments sound like you just graduated medical school and are parroting what you heard or cut and pasted from wikipedka. Your comments reflect someone who has drank the coventional medical coolaid but has not used to research and verify the things you are trying to convey as truth.

If this seems harsh you just have no clue what people with lyme and coinfections and bewildered by what is happening to them and desperate for answers. I would guess 90% of conventional doctors have no clue how to dx lyme, dont realize the failure rate of 'accepted' lyme tests and dont understand jow to treat it.

go verify your statements then come back and appologize to this forum and the people you might have mislead with your oudated misinformation.

Hello again,
Thanks for all your replies. Let everyone be respectful of each other.
I've just found out that the test I got a while ago was, indeed, the ELISA test. Don't worry-- I'm going to get Western Blot testing done ASAP!

No offense to any in here!!! I have a chronic auto-immune illness and have been a laboratory scientist for 30 years. I focus on proven (by properly designed studies) effective clinical diagnostic tests. No entity or agency is perfect, and intent is hard to prove. I don't work for CDC and I have not copied/pasted from Wikipedia. IGeneX is not the worst, they are trying to be helpful, but who has rigorously evaluated all IGeneX procedures? What happened to their LUAT test? Why aren't they CAP accredited? Labs certified by federal CLIA offer tests that are clinically unproven because CLIA doesn't have the resources to evaluate clinical validity (sensitivity/specificity). I feel for everyone with pain and some disease/disorder, but I am reviled even more by those who benefit financially from preying on you, esp if repeatedly gaining from unproven test/treatments incl those that are harmful. I do not imply your suffering is baseless, just that not every wide-ranging symptom can be blamed on Bb. I agree this is a serious issue and debate, but keep you eye on the science, proof, and don't forget to follow the money and connections to bad players. Never forget that health care providers and laboratories are businesses.

Is there proven by science helpful info here? http://goodbyelyme.com/ Do they sell stuff?

Good health and peace to all.

For perspective on the accuracy and effectiveness of the IgG and IgM - my son had both, twice, and twice was negative. However, the CDC has specific reporting standards for Lyme disease. If a person gets the erythema migrans (expanding bullseye rash) in an area known to have Lyme disease carrying ticks then THAT IS A CONFIRMED CASE. If a person gets the rash in an area not known to have Bb infected ticks it is a PRESUMED case. The rash is diagnostic, even in cases of negative serology! (Yes, by area I mean county or..., not armpit or...!)

However, even with that information and government sourced documents showing confirmed Bb infected ticks in the area, seven different doctors refused to diagnose Lyme disease. (We don't have it out here...) (Of course not - as long as no one diagnoses it, we will continue not to have it.)

Is it any wonder that we go to doctors who at least believe that, if it is in our heads, treatment will kill it and get it out? There is a big potential for predators in the treatment world and we all have to try to make the right choices, with careful study, but also with gut feelings about how much we can trust the people we speak with.

I have had conventional doctors and other medical personel make life threatening mistakes in my treatments, and those of my family, in several situations, not linked to Lyme or any other controversy. There are plenty of lousy doctors in the world. And, even very open minded, sympathetic medical personnel out here were quite behind in their knowledge of Lyme. That's regarding the uncontroversial information - stuff that both major Lyme perspectives agree on!

There are drs who just don't know much, but don't realize how inadequate their info is. I had one dr say he felt the name LLMD was offensive because it implied other mds were not Lyme literate. Well, uh, yeah!

As for the weird range of symptoms, it does make it harder to convince people it's real. But, I saw antibiotic treatment work and resolve a series of very odd symptoms when other things had not, and many people report good results with many different treatments. Try this one on - antibiotics as a treatment for allergies. Hmm. How about for low body temp?

I asked a doc about the range of symptoms and he began offering diagnoses - this for that, this for the other, that for the next one - until I asked him how many different diagnoses would he need to cover all the symptoms when Lyme covered it all? I had already seen a number of other people's lists or I wouldn't have connected it all, but almost everything clearing up as a cluster implies it was all tied together. We do still fight some of the first symptoms, still lingering for lesser flare ups, and temporarily ending treatment has caused recurrence of some symptoms previously bannished.

This is not fun stuff. We are here to help each other navigate the murky waters. If a person needs more knowledge (technical or experiences) about any aspect of recovering/ surviving we try to help each other get what we need. Lab expertise could be an asset for us all. Read around and look for places to kindly supportively help.