Lyme testing

[bakercape]

Over the years I have been tested for Lyme a dozen times. Mostly with the Elissa test but twice with western Blot. I have allways been negative. I did grow up on Cape Cod where there is a lot of ticks/ Lyme though. MY illness started with EBV infection so I don't think I have Lyme but am allways a little worried about it.

Does anyone know of any other Lyme tests that may be more sensitive. Thanks for any info. Keith

 

[Timaca]

Keith~ If your illness started with EBV, then you could have viruses making you sick, not Lyme. I have both viral and bacterial pathogens making me ill. EBV, HHV-6, HSV1 and Coxsackie B are part of what is making me ill. For more info see: www.hhv-6foundation.org and www.enterovirusfoundation.org. There is a patient's forum at the HHV-6 website (you will need to sign in to read it).

Best, Timaca

 

[Jenny]

I had Lyme testing done through Immunosciences Lab. It was Panel C which tested for various strains of Lyme, co-infections and different types of neurological antibodies. My doc isn't using this test any more though and I've heard rumours they've lost their licence.

There were a lot of abnormalities, but I didn't have much confidence in the results, as there was little evidence of their reliability and validity, and my doc seemed unable to interpret some of them.

I had several negative Western blots.

Jenny

 

[Athene]

I'm organising a Lyme test for myself here.

http://centralfloridaresearch.com/

As far as I know it is the only lab which looks for pathogens rather than antibodies. They use flow cytometry and it is allegedly very reliable.

I've had an ELISA which was negative, but that is to be expected if you're been ill more than 12 months since Borrelia destroys your antibodies.

 

[Lesley]

I just found this explanation for what is wrong with most Western blots and ELISA, and thought it might help.

UNDERSTANDING LYME WESTERN BLOT

By Charles Ray Jones, MD

There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93. Only one of these Borrelia burgdorferi genus specie 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 Borrelia burgdorferi genus specie specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi genus specie specific antibodies. CDC Western Blot IgG surveillance criteria includes 18 23 30 37 39 and 93 and excludes bands 31 34 and 83.

It does not make sense to exclude any Borrelia burgdorferi genus specie specific antibodies in a Lyme Western Blot IgG and 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 the Borrelia burgdorferi induced Lyme disease. 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 specie 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 specie specific antibodies. This does not make sense. CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 7000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISAs. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives not false negatives.

Rev. 8/23/04

An even more detailed discussion can be found here: http://www.drcharlescrist.com/testing.htm

I know that IGeneX tests for all the bands, and is used by most LLMDs.

I was diagnosed with Lyme and just started treatment after 5 1/2 years of CFS. I was really dismayed to find that this was overlooked by my doctors, and even more dismayed to find that Lyme is as fraught with controversy as CFS.

 

[serenity]

i also asked for a Lyme test & was handed a piece of paper for contacting IGeneX.
can't understand this blood test stuff, just asked in another thread too. can't understand why they dont' just run it for you, instead of handing you a piece of paper to contact the lab yourself.
if anyone can help explain this to me i'd apprecaite it.
thanks

 

[Esther12]

Lyme's tricky to test for, but be careful:

There are lots of dodgy tests about which just seem to count almost everyone as being positive. I think a lot of the Lyme stuff about is a bit disreputable and pointless.

 

[serenity]

ok, thanks Esther - guess nothing is as simple as i want it to be

 

[jeffrez]

Heh, I grew up on the cape, too, but didn't get Lyme until I moved to NY. I think the link Lesley posted is a really good one - the problem is often that the screening tests are basically worthless unless you're in an obviously acute phase, rash, etc. and I think most mainstream docs will just stop there and not go further if you're negative. Then it can go the other way with the WB, and you sometimes get a false positive. So if you really think you do have it it might be important to find a Lyme expert if there are any on the cape, or maybe you could get to Boston or vicinity if there is anyone good around there.

 

[aiden424]

I had several Elisa lyme tests that were all negative. IGenex checks for all the bands. I would have never been positive through Elisa's because they don't even check for the most important bands. I was 30+ 31++++ 41+++ 45+ 58+ and ind on 18 34 39 66 93. Four + is the highest it goes. I have never heard of anyone having a false positive on a western blot.

Kathy

 

[*GG*]

Over the years I have been tested for Lyme a dozen times. Mostly with the Elissa test but twice with western Blot. I have allways been negative. I did grow up on Cape Cod where there is a lot of ticks/ Lyme though. MY illness started with EBV infection so I don't think I have Lyme but am allways a little worried about it.

Does anyone know of any other Lyme tests that may be more sensitive. Thanks for any info. Keith

I was tested by IGENEX and have shown this to a few of my CFS Drs, not sure if they are Lyme Literate MDs?

Anyhow this was posted recently:[CO-CURE] NOTICE, MED: - New Lyme TestTuesday, June 1, 2010 3:44 PM
From: "Margaret Holt <uncmom59@AOL.COM> via Co-Cure Moderator" <ray@co-cure.org>Add sender to ContactsTo: CO-CURE@LISTSERV.NODAK.EDUFYI

<http://ajcp.ascpjournals.org/content/133/4/569.abstract>http://ajcp.ascpjournals.org/content/133/4/569.abstract

www.milfordhospital.org

New Lyme testing is called "Lyme DNA by PCR"

Anecdotal patient reporting states cost is $98, Medicare covered.

Lab contact information:
George T. Poole, Lab Manager
Milford Hospital, Inc.
Milford Medical Laboratory, Inc.
Voice: (203)876-4496
FAX: (203)876-4548

Margaret Holt Baird

 

[Stone]

Can any of you Lyme-literates help me understand my Lyme results? I was tested for Lyme when I first got sick in 1995 and again this year. Both times I was told the antibodies were positive, but the Western blot was negative. One doctor told me it means I was exposed to Lyme but never had active Lyme disease (funny, you couldn't tell it by me; I'm sick as hell and can hardly walk these days), another doctor told me that the first test is just a screening for antibodies but the Western blot confirms that the antibodies are really there. Which is correct if either? If neither is correct, how should these results be interpreted? Also one doctor told me that if I haven't been to an endemic area, I can't get Lyme, which I know is not true. I really think I may have chronic Lyme, but how do I nail that down?

 

[bakercape]

Thanks

for all the Info everyone. I've decided to find a LLD just to rule Lyme out again. Before I got Mono I was a healthy athletic teenager but my mom allways tell me i was bitten by a lot of ticks as a child before they knew about Lyme. I still worry about Lyme a lot.
That's cool you grew up on the Cape Mr. Kite. I grew up in Falmouth in the 70's and 80's. Still live on the Cape. There are so many ticks here! AHHHH

 

[Athene]

Do any of you Lyme experts know specificaly about the Q-rib B test?
That's the one I've been planning to do, I'd like to know if it is reliable(ish).

 

[redo]

Heh, I grew up on the cape, too, but didn't get Lyme until I moved to NY. I think the link Lesley posted is a really good one - the problem is often that the screening tests are basically worthless unless you're in an obviously acute phase, rash, etc. and I think most mainstream docs will just stop there and not go further if you're negative. Then it can go the other way with the WB, and you sometimes get a false positive. So if you really think you do have it it might be important to find a Lyme expert if there are any on the cape, or maybe you could get to Boston or vicinity if there is anyone good around there.

Begin an intelligent person, you know that there are big variances between different ELISA and different Western Blot tests. So what holds true with one, might not with others.
That said, there will be published a study in 2010 where you can see that both the specificity and the sensitivity is higher with the Mikrogen Western Blot, than for all the ELISAs.

ELISA tests often show a "serological scar" (often referred to as false positive) in areas with much lyme. Rates of around 1/3 of healthy blood donors testing positive with the ELISA is not uncommon.

Anyway, point is that the Western Blot does not have to produce more false positives.

And another point, which is off topic, is that I think that the 1/3 testing positive do in fact have a latent infection, but feel completely well (and will most likely do the rest of their lives).

 

[glenp]

CD57 - Has anyone had their CD57 checked in regards to lyme/

glen

 

[JT1024]

Sam Donta MD - Lyme Specialist on in Massachusetts

for all the Info everyone. I've decided to find a LLD just to rule Lyme out again. Before I got Mono I was a healthy athletic teenager but my mom allways tell me i was bitten by a lot of ticks as a child before they knew about Lyme. I still worry about Lyme a lot.
That's cool you grew up on the Cape Mr. Kite. I grew up in Falmouth in the 70's and 80's. Still live on the Cape. There are so many ticks here! AHHHH

Bakercape,

Check out Sam Donta, MD using Google or Bing. He's well known as a Lyme specialist. Last I heard he was practicing in Falmouth.

Here is more info:

Sam T Donta, MD

314 Gifford St
Falmouth, MA 02540
Phone: (508) 539-6666
Fax: (508) 540-0133


Gender:Male
Years in Practice: 47
Board Certified:Yes
Specialty: Infectious Disease Medicine, Internal Medicine Specialist, Internal Medicine
Speaks: German, Greek
Education:Yeshiva University, 1963
Hospital Affiliations: Boston Medical Center and Falmouth Hospital </SPAN>


~ JT

 

[jeffrez]

Begin an intelligent person, you know that there are big variances between different ELISA and different Western Blot tests. So what holds true with one, might not with others.
That said, there will be published a study in 2010 where you can see that both the specificity and the sensitivity is higher with the Mikrogen Western Blot, than for all the ELISAs.

ELISA tests often show a "serological scar" (often referred to as false positive) in areas with much lyme. Rates of around 1/3 of healthy blood donors testing positive with the ELISA is not uncommon.

Anyway, point is that the Western Blot does not have to produce more false positives.

And another point, which is off topic, is that I think that the 1/3 testing positive do in fact have a latent infection, but feel completely well (and will most likely do the rest of their lives).

Good to know, thanks.

 

[Greggory Blundell]

Lyme Story

Just a quick Lyme anecdote: I unknowingly sat on what must have been a nest of deer ticks about 8 years ago. Woke up the next morning with 130 embedded deer ticks. Unnerving to say the least. Had to go to a clinic to have them removed. Fun. Ended up developing Lyme twice within a six month span - three years after that.

 

[Lesley]

CD57 - Has anyone had their CD57 checked in regards to lyme/

I did. Mine was 44 with a normal range of 60-360. My doctor said that, together with a borderline western blot, supported a Lyme diagnosis.