QUEST says 'NO' to Lyme

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+Lyme
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   Posted 5/5/2009 8:47 PM (GMT -6)   
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!
 

RottenDog
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   Posted 5/5/2009 9:20 PM (GMT -6)   
well i cant make out mine either but it was done at LabCorp in Dallas Tx. show present for IgG P41 AB. negative lyme IgG WB Interp.

IgM P41 AB. present & IgM P23 AB. present. psoitive for lymes IgM WB Intarp.

whats that mean?? do i or dont it have lymes, 1 doc says yes and another says no

MRI show brain foci's and blood shw elaveted white count for the last 6 months. so i'm fighting something here. I knw i'm fighting doctors..lol

at my wits end now.

RD

hezzer926
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Date Joined Sep 2008
Total Posts : 285
   Posted 5/5/2009 9:49 PM (GMT -6)   
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

Agmaar
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Date Joined Jan 2009
Total Posts : 376
   Posted 5/5/2009 10:46 PM (GMT -6)   
Just a suggestion, but maybe you should have the IgeneX tests done?  My original test results from LabCorp showed one reactive band - IGM 39.  Given all my symptoms, my llmd had me do the IgeneX tests.  Results were:
 
IGG reactive - 18, 30, 31, 34, 39, 41, 58, 66, 83-93
 
IGM reactive - 23-25, 41, 58, 83-93
 
Igenex tests more bands than the CDC criteria.  Testing for Lyme is the IgeneX specialty.  My testing wasn't covered by insurance but it's the best $260 I've ever spent.  I'm slowly getting my life back.
 
If you have symptoms of Lyme, IMO you should pursue this lead. 
 
RD - if you have symptoms of Lyme, why not go to the Dr that thinks you have Lyme and start treatment?  There's nothing to lose by starting antibiotics and much to gain (assuming you tolerate abx etc).  If you get the Herx reactions after starting abx, that's yet another confirmation of Lyme.
 
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


sojourner
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Date Joined Apr 2006
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   Posted 5/5/2009 11:01 PM (GMT -6)   
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
The best way to teach people is by telling a story. ~K.Blanchard
Keep telling your story and watch the tide turn!
God loves with a great love the man whose heart is bursting with a passion for the impossible. ~WmBooth


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 5/6/2009 5:57 AM (GMT -6)   
Does anyone know about my question about the one 'reactive' band, which is specific to Lyme? If I don't have lyme, how could one band 'react' to BB specifically? I don't understand.

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 5/6/2009 10:32 AM (GMT -6)   
Perhaps band 39 is reactive because you DO have Lyme?
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


judy3
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Date Joined Nov 2006
Total Posts : 667
   Posted 5/6/2009 11:01 AM (GMT -6)   

Hi Sojourner,

Thanks so much for the wonderful explanation, I am doing great besides some vibrating on the left side of my body, endo claims may be due to low magnesium and B6, he wants me to supplement for one week, but I did a Quest Lyme and Lyme Diseas Screen is Positive 1.65, range is 0.00-0.90, Western Block IGM 41 KD is reactive , does this mean I dont have to take it seriously, I am feeling great besides the vibrating feeling and need to decide to retreat lyme or maybe just follow through with the vitamin issues and see?


hopingToFindCure
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Date Joined Nov 2008
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   Posted 5/6/2009 4:48 PM (GMT -6)   
Tests are unreliable. All of them. Throw them out! And ask for a clinical diagnosis of SOMETHING!

jc27
Regular Member


Date Joined Sep 2007
Total Posts : 176
   Posted 5/6/2009 5:29 PM (GMT -6)   
I had several tests done by Quest over 5the years that came back negative. Their test is worthless.

+Lyme
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Date Joined Apr 2009
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   Posted 5/6/2009 5:59 PM (GMT -6)   
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)


+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 5/6/2009 6:05 PM (GMT -6)   
Judy 3: 'Western Block IGM 41 KD is reactive'.  I have only been able to do some skimming today while at work, but I am positive that I read that band 41 is very significant.  The more knowledgable folks on here can confirm or dismiss that.  Just try plain searching on 'reactive band 41' and stuff like that.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/6/2009 7:50 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...

scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 5/7/2009 8:52 AM (GMT -6)   
Lyme Disease is a clinical diagnosis and blood tests do not always back it up. If only I knew back then what I know now I would not be so sick and have lost so many years of my life. Go to a good llmd who treats aggressively ASAP! You can get a referral in your area from www.turnthecorner.org. Good luck!

veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 5/7/2009 7:28 PM (GMT -6)   
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

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/7/2009 8:49 PM (GMT -6)   
Great looking references and info! Thanks to everybody! Veromia, I have been wondering WHY in the world someone can't just look in the blood for the freaking littel spirochetes themselves -- is this kind of like the cymetry test?

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/7/2009 9:51 PM (GMT -6)   
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

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/13/2009 5:54 PM (GMT -6)   
Actually yes, there will be. It's been patented by the university of louisville.


University of Louisville Researchers License Diagnostic Technology to Louisville Bioscience
10/7/2008

Researchers at the University of Louisville's James Graham Brown Cancer Center have licensed a method they developed for analyzing blood and other body fluids to a Louisville company. Louisville Bioscience Inc. will pursue commercialization of differential scanning calorimetry technology, which shows scientists how blood proteins behave when heated. This might allow doctors to diagnose complex diseases with simple blood tests. In preliminary tests, blood plasma from people with rheumatoid arthritis, Lyme disease and lupus show test results that differ 'significantly' from healthy patients and show a distinctive pattern for each disease. Financial terms of the licensing agreement were not disclosed.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/14/2009 9:46 AM (GMT -6)   
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!?!

veromia333
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Date Joined Mar 2009
Total Posts : 674
   Posted 5/14/2009 1:00 PM (GMT -6)   
Wow i need to know any thing about new difinitive tests also. Please post for us all. thank you
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


hopingToFindCure
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Date Joined Nov 2008
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   Posted 5/14/2009 2:04 PM (GMT -6)   
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!

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/14/2009 2:31 PM (GMT -6)   
Ok. Here's the scoop. LBI Technology thinks it could be two years if all goes well. Awaiting FDA approval.

I just wanted to say forget it. But maybe something else will come along. So discouraging.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/14/2009 8:02 PM (GMT -6)   
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.

WhenLifeGivesULymes
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/4/2009 3:11 PM (GMT -6)   
+Lyme - from everything I've read band 41 is the abolute LEAST specific in terms of diagnosing lyme, as all band 41 show is antibodies to the flagella, which are the 'tails' if you will that propel bacteria in the body. All bacteria have flagella. Band 39 however is highly specific to borreliosis (lyme disease).

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/4/2009 9:16 PM (GMT -6)   
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!


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.

Post Edited (+Lyme) : 6/4/2009 9:22:22 PM (GMT-6)

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