I read in the book, "The Lyme Disease Solution," by Dr. S that "There have been well-documented times when viral infections have been known to cause 'false positive' Lyme antibody tests. I know that I have tested positive for Epstein Barr adn I have HSV so I wonder if my positive three bands on the Western Blot could be a false result caused by viral load in my body.
Anybody familiar with this topic and book? Can I trust my Western Blot results even with multiple viruses?
** edited to remove Lyme practitioner's name **
[ 06-28-2011, 09:44 PM: Message edited by: sixgoofykids ]
Posted by annier1071 (Member # 28977) on :
I read the same thing. I also have the same viruses. It seems they are very common when you have lyme to have the viruses too.
What bands were positive
Posted by lymewreck36 (Member # 4395) on :
I don't believe in false positives honestly. If there is a positive test, and you are sick, treat the disease. If you don't herx or respond at all, then maybe consider it false. But always move forward and treat. The risk of not treating is too serious, and there is no "do over."
Mary
Posted by TF (Member # 14183) on :
I would like to quote from "The Lyme Disease Solution" so that everyone can see what this doctor is actually saying regarding "false positive" lyme tests.
From pages 104-105:
"Most lyme aware doctors use laboratories that report all bands including bands 31 and 34. Studies have shown that the most lyme specific Western Blot "bands" are: 18, 23-25, 31,34,39, and 83-93. Any one of these along with band 41 (which appears early and is specific for all borrelia including lyme), strongly suggests lyme exposure. In my lyme disease treatment experience, I prefer seeing at least a positive band 41 (along with at least one specific band) for me to consider the Western Blot positive. If other specific bands are positive, but not the band 41, it makes me strongly consider this may be a "false positive" Western Blot (caused perhaps by viruses)."
So, what the doc is saying is that he wants to see a positive band 41 plus one other specific band to say it is a positive lyme test.
He says that if your band 41 is NOT positive, the test MAY be a false positive and that this PERHAPS is caused by viruses.
His rationale is that band 41 shows up early in lyme disease exposure and it is specific to all borrelia, including lyme. So, you should always have a positive band 41 if you have been exposed to lyme disease.
I hope this clears up the issue of "false positives" caused by viruses.
Many, many lyme patients have numerous viruses. So, what result did you get on the band 41?
Just look and see if your band 41 is positive. If it is, this possibility is not an issue.
Posted by Lymetoo (Member # 743) on :
TF.. Thanks for posting that!! I didn't know that about Band 41 being so important in that decision. Cool.
Posted by t9im (Member # 25489) on :
My personal take is that the only way to have a positive on band 41 is if your immune system is in tact well enough during the initial spirochete infection. If the spirochetes become cysts, etc., then they lose the flagella and won't therefore trigger the generation of band 41 antibodies...and this conversion from spirochete to cyst/L-form can happen before the immune system has had enough time to even create any antibodies to any part of the Lyme bacteria... And it probably adapts quickly to each person's unique inner terraine and immune status, shutting down the specific part of the immune system that would cause it to be detected and attacked.
This bug is too smart for there to be set formulae about interpreting WB results for every person. I agree with LymeMD in that I believe that the person's clinical status must be considered in addition to the WB results...
Posted by Tincup (Member # 5829) on :
False positives- phooey!
In 30 years I've NEVER seen a false positive test and I've seen more tests than most of the LLMD's put together.
There are many reasons a test is negative or a band isn't showing on any given day... not to mention you can send two samples off to two labs and show totally different bands.
What is happening is we are trying to take a test that is often inaccurate for many reasons, and on a good day it only catches 60% of those with Lyme at all...
And we are trying to make that test fit us and at the same time, make it all make sense.
Just for fun, look at the List of Western Blot Bands here...
Lyme disease is a CLINICAL diagnosis. The criteria set-up are for surveillance purposes only- and are not to be used to base diagnosis and treatment decisions on.
I'm not fussing at you dear new member, not at all.
I am fussing because too many times people (including doctors) miss Lyme because of the test results.
Had they based treatment on a clinical diagnosis over the years, many of us wouldn't be here today.
A lab test is ONE tool we use in the diagnosis of Lyme. A negative test is NEVER to mean you do not have Lyme. If it is positive it can help in the diagnosis.
And BTW- my manners, where are they today?
Welcome to LymeNet!
Posted by annier1071 (Member # 28977) on :
I had band 41 only, as most everyone does, to start and not positive. I had a couple more IND and postives after 2 moths treatment. I now have nothing but IGG 41 on the 3rd western after only 7 monhts on nothing but omnicef.
I have stopped the abx now as I never ever improved at all. I am just as dizzy and weak as ever. The lyme neuro said that the lyme diagnosis had to be an error and my LLMD is tryin to say I am in remission???
I can only believe now that it was not lyme (even with 2 tick bites) and I treated all htese months for nothing. I am waiting for results from ART testing to see if it is viral after all. I am so tired and desperate now.
Posted by gmb (Member # 23562) on :
annier,
Your symptoms could also be from Babs, which will prevent any progress with Lyme until it is treated. May be worth investigating. Five months is not a long time. You may want to try some Artimesinin(sp?)as a challenge to see how you react.
I was treated for Lyme for over a year with no significant improvements. I never considered Babs until I switched Dr. I have been on Mepron/Zith/Omni for past 6 weeks with all kinds of new "Babs" symptoms.
Just my 2 cents.
gmb
Posted by annier1071 (Member # 28977) on :
Thanks GMB.
I was tested fro babs many times and all negative. My LLMD did that muscle test for all the coinfections and said that I do not have them.
I have stopped all abx now since even the LLMD says remission (even though I know he feels he made a mistake on the lyme diagnosis).I was on omnicef and zithro for a few months together but he stopped it when my hearing started fading in and out?
Posted by Lymetoo (Member # 743) on :
TINCUP
You said:
"Had they based treatment on a clinical diagnosis over the years, many of us wouldn't be here today."
I think you meant "had they NOT based treatment on a clinical diagnosis"....right?
Posted by axseptants (Member # 32296) on :
Everyone -Thanks for the responses to my post. I have been consumed with work for the last few days and unable to check the site until today. TF, thank you for pointing out the specific quote from the book. I had found the quote that I referenced, but not the one that you referenced. Obviously, I have not read the entire book and have been only jumping around reading certain sections. I need to dig in and read the whole thing. I had three bands present - IgM 41, IgM 39, and IgM 23 and a positive result on the Lyme IgM WB (all testing so far has been done through LabCorp).
Thanks again to everyone!
Posted by TF (Member # 14183) on :
axseptants, glad to hear you have a positive band 41.
Still, it IS interesting that this doctor has the following statement in his book:
"Often patients who are chronically ill and who test negative for lyme and other coinfections are suffering from chronic viral infections. There are well-documented times when viral infections have been known to cause "false positive" lyme antibody tests. For this reason, I recommend that chronic viruses be considered as possible offenders when one is undergoing evaluation for tick-borne illnesses." (page 117) "The Lyme Disease Solution"
He then goes on to list West Nile virus, CMV, EBV, various types of herpes viruses, parvovirus B19, Colorado tick fever, Powassan encephalitis, Eastern equine encephalitis, HIV, and Hepatitis viruses--B and C.
So, that is quite a list of viruses that chronically ill people should want their lyme doctor to rule in/out.
Posted by Beagle (Member # 29698) on :
I was just about to write down all those viruses listed above - question: if one had one of these viruses, antibiotics would have no effect? Am I correct? I tried to stop antibiotics last month just to get a blood culture for infected TKR but on day (9) off antibiotics became too sick to function at all. (never got the blood culture or knee tap) Bottom line, this experience would rule out virus, right? Therefore, no need to be Virus tested?
Beagle never tested by Igenx, just years of positive Elisa tests by mainstream Docs. And now debilitating symptoms.
Posted by Lymetoo (Member # 743) on :
Beagle .. you could have viruses, but it sounds like you have a coinfection if your symptoms came back that quickly.
I hope you find an LLMD very very soon.
Posted by DDEC2 (Member # 30313) on :
Yea. the false positive possibility is a constant worry for myself as well. Especially when i have half my doctors telling me i should be focused on having MS.
The way i see it is the only positive test i ever had was the WB so that's the route im running with.
Sure i have brain lesions but i had a clean spinal tap.
Seeing as how i also tested positive for CPN which is another MS imitator.
If im wrong (i pray that im not) there is a lifetime of horrible meds waiting for me. Treating lyme is my last shot at a normal life. The way i see it i have nothing to lose.
![[Big Grin]](biggrin.gif)