QUEST says 'NO' to Lyme

Will try to be brief here. Got my labs back. They came from Quest (per my insurance) and say 'negative' to Lyme.  I have no results from an Elisa.  From the looks of it, I do not have Lyme afterall, but I do have a couple questions.

For the IGG, only 10 bands  listed are: 18,23,28,30,39,41,45,58,66,93.  All except 39 say 'non reactive' and next to 'Flag', they all say 'no'.  39 says 'Reactive'.

For IGG, 3 bands were read: 23, 39, 41, and all say 'non reactive', and the 'Flags' all say 'no'.

It says I would have to have 5 out of 10 bands on the IGG, and 2 out of 3 of the IGM.

It appears this test was read within 24 hours of the blood draw, so it should be accurate, correct?

Questions: I have notes on a lot more band reading. Does anyone know if Quest only looks at/reads/ studies these particular bands, or is this all they report?

Question: Even tho the only band that was reactive was band 39, doesn't that  mean anything? My notes say '39 is major protein of Bb flagellin; specific for Bb.'  Dr. Burr. says 39 is 'species specific'.  But he says you should at least see 41 with at least one of the specific bands.

Why would a band that is specific to Lyme be 'reactive' if one does not have Lyme? 

I understand that many do not believe Quest tests accurate. (Heavens, they base them on the Proceedings  of the 2nd conference on Lyme, in freaking 1994, 15 years ago!!

But this all looks so clearly negative, I don't think I should push for more tests.  I mean, one lousy band.

I've got some more lab results to look up -- remarks and opinions are welcome!

 

When I first got tested through Labcorp, I had one positive band.. that's it... months later when more and more symptoms came about, I had 4 positives and CDC positive lyme

The Quest Lyme titer and Western Blot are non-sensitive and non-specific; originally intended for surveillance purposes and not for diagnosis. Therefore, not a reliable marker for diagnosing Lyme disease. Lyme disease is a clinical diagnosis backed up by labs. If an immune system is suppressed by a late diagnosis, antibodies may not be being produced. R U seeing a Lyme literate physician who can appropriately rule Lyme in or out for you?

ILADS Physician Approach to Reading Western Blots -
Addendum Regarding Lyme Serology

There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.

Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.

CDC Western Blot IgG surveillance criteria includes 18, 23, 30, 37, 39 and 93 and excludes bands 31, 34 & 83.

It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.

IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including a Borrelia burgdorferi induced Lyme disease.

The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.

This does not make sense.

The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In one top ILAD physicians practice having treated over 12,000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.

IGeneX or Clongen PCR are the most reliable b/c of their DNA detection. At that, there is no 100% proof positive test on the market... yet. This is why it is important to seek a differential diagnosis from a qualified physician trained in Lyme literacy and complexity.

Blessings,
Sojourner

Perhaps band 39 is reactive because you DO have Lyme?

Tests are unreliable. All of them. Throw them out! And ask for a clinical diagnosis of SOMETHING!

I appreciate all these responses. They make total sense. I do not want to insist that I have something that I don't-- and WHO WANTS lyme anyway?? We just WANT a diagnosis, right??

THANK YOU SOJOURNER! That's almost all I needed to hear! We are gettin sum edumacation here, aRn't we??

From everything I've looked at, a reactive band 39 does have meaning, maybe not to Quest. It means I have antibodies SPECIFIC TO Bb. Please correct me if I'm wrong.

I'm not bashing my new PCP just yet. (will call him PCP) We just didn't part very clearly. He had given me the name of a LLMD, Dr. D, who he knows personally, but who does not take insurance. Anyway BEFORE I picked up lab results, the Dr's Asst told me, 'your Lyme was negative, diagnosis is hypothyroidism' (which I already knew). You will have to see Dr. D about your Lyme.' She went on to say, 'So do you want to see Dr PCP about your thyroid, or do you want to make an appt w/ Dr D?'

I called the PCP Nurse this morning w/ my questions: 'Why is PCP referring me to Dr D if my Lyme results are negative? Is PCP going to call me in a script for thyroid (fatigue is almost unbearable)? What do these other ABNORMAL test results mean?'

Nurse about flipped. Assistant was NOT SUPPOSED to give me copies of my labs. She was to get me to come in and talk to PCP about the results and thryoid med. In regards to Lyme question and Dr D, PCP wanted to go over that with me personally.

Because of what the Asst had said to me about Lyme, I believe that PCP knows I need other/more tests. But he realizes that insurance may not cover them. That is my belief and hope.

So, I'm gonna keep researching this crappy little band 39. And I plan to get PCP to help me out. When I called my insurance Co. they said they would cover any lab work ordered by my Dr. I will find out from him if this is true. If he or Dr D can help me out w/ the Igenex, then I'll get that ordered. I have not seen a regular Dr in about 8 years. So this is progress and so far I like PCP, realizing that he may not be able to diagnose/treat Lyme if it presents. He is open. He was open the minute I mentioned Lyme. So that is positive.

Maybe he knows stuff about my other tests that might lead to Lyme, or, as he said, maybe I have some other illness that needs diagnosing.

Although I am not half as sick as most of you, I hope that eventually my experiences will contribute something to some collective knowledge? Maybe this can help somebody?

As for all tests being unreliable, I agree to an extent, but common sense has to enter into it. I do not claim to have medical or clinical or lab knowledge of these bands, antibodies, etc. But Dr. Burr states that a reaction on band 39 is specific to the Bb. Altho that may not mean Lyme disease as you/we all know it, it MUST mean something. Maybe just exposure? I don't know of any reason why my 39, which is a 'major protein of Bb flagellin; specific for Bb', and as Dr. Burr. says is 'species specific' would not mean something about Lyme and antibodies in me, specific to Lyme. Who knows, maybe I feel like sh-t because my body is fighting??

And if I ever learn that I do, in fact, have Lyme, and that good ole Quest only bothered looking at bands recommended in 1994, giving me a false negative, then someone besides ME is gonna have to pay!!

Post Edited (LymeUnknown) : 5/6/2009 6:09:25 PM (GMT-6)

According to my notes and my lab results, Quest flat out passed over ALL the Lyme specific bands except 41 and 39. Sheesh. Yeah, you warned me. Still, was just hoping for a clue...

everyone should get flow cymetry testing. Central florida research.com. Looks for the antigenes that means the actual bacteria not the antibodies. much more precise. You can print out pages from the web site to give to your doc to help you send out for the test

Exactly. It is looking for the spirochetes. So it doesnt matter if you have been on antibiotics or whatever would suppress antibodies. I spoke with a doctor at the Florida research center today and he told me to print out the pages you need from the website and give it to your doctor To help you send out for testing it is 250.00

Hi Gracie's Mom -

I think it's a positive sign it's in the investment area of business week. Means they could be legitimately on to something. I am trying to track it down. I will let you know of anything I find out. I found another item concerning the test on Jenna's Lyme Blog.

I just want to rule it out (or in). Either way!

Take care and let us know if you find anything more about this promising development -- we can only hope right!?!

Veronica, I read your story. Keep pressing on and getting well. Will let you know if/when I should find out where this test is given!

Hoping, who is hoping something else will come along: Well, for starters, how about our 'pop' labs, who are paid by the major insurance companies, who are paid BY US, start reading and reporting on ALL of the species specific, significant bands on the Western blot! That right there would help a big chunk of sufferers.

btw, I am working on a letter to Quest labs. Starting out fairly nicely in hopes of a response. I will be requesting the results from my recent lab work regarding the species specific bands which they did not report to my Dr. I will ask that if they do not have them, ie; if these bands were not tested or read, the reason why, and will mention the progress that medicine and diagnostics have made since 1994. I want them to answer my questions and I want them in writing.

I will cc BCBS, in total innocence, because, in my attempt to move forward, I will need to question why certain MDs, diagnostics and treatments are not covered by my insurance.

WhenLife, well, I understood that band 41 is not specific to Lyme, but to infection. I did not know that all bacteria have flagella, as several of the pieces I've read suggested that only a couple of other infections would cause a reaction on Band 41. I believe that I read that if syphillis and periodontal (sp?) disease are ruled out, then chances are it's Lyme.

Also read that most LLMDs will diagnose Lyme w/ a reaction on 41 and one species specific band.

Turning that around, I've noted that some researchers state that nearly 100% of lyme infected individuals will have a positive band 41. And that just over 50 % will have a positive reaction on one species specfic band.

So, my understanding is that although 41 is not specific to Lyme, a high percentage of those infected w/ Lyme will have a reaction on 41.

Was I able to make sense there? I am totally open and welcoming of info I am not understanding correctly!