This is topic Lyme Disease Test Results--Help? (and one photo of wound progress) in forum Medical Questions at LymeNet Flash.


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Posted by Hoodwink (Member # 17305) on :
 
My results were negative, said doctor. but I wanted to see it with my own eyes. I felt empowered when the results were handed to me.

Here is what they said and perhaps someone can tell me exactly what the numbers mean?:

Lyme IgG/IgM

NOTES: (a) NEGATIVE
< OR = 0.90 NEGATIVE
0.91 - 1.09 EQUIVOCAL
> OR = 1.10 POSITIVE
LYME EIA SCREEN IS RELFEXED TO WESTERN BLOT IF POSITIVE.

Thanks for any advice.

If you are curious about my story, there are other posts on this board that include the graphic necrotic bite photos (with a warning in the subject line).

I have Fibromyalgia, was diagnosed in the end of 95 when I was 13. I was given a lyme test back then but was told it was negative. I never saw the paperwork though.

I was recently bitten sometime between the end of August and beginning of September 08. I had the hallmark bull's eye rash and it got really really painful and gross.

Here is how it looks currently:

Day 22:

[IMG]TickBiteDay22[/IMG]

Thanks for all the support!

~Becky [lick]
 
Posted by sixgoofykids (Member # 11141) on :
 
Hey Becky, looks like it's healing up nicely now!

I don't see what your result was, those look like reference numbers only.

Did they take the blood for a Western Blot? The test you had is not very accurate.
 
Posted by Hoodwink (Member # 17305) on :
 
I asked for my results and that is all they gave me!!
 
Posted by Michelle M (Member # 7200) on :
 
I'm not sure I'd put much money on a test that's wrong about 50% of the time, even by such conservative standards as Johns Hopkins University (and them's some mighty conservative standards in the lyme world)!! In other words, if you were tryin' to figger out if you had lyme, you'd be just as well off flippin' a coin -- and it's cheaper, too.

But... You knew that!!

It looks to me like the main thing you needed to do, from the look of that leg, was deal with MRSA -- and you have!

My daughter had a pretty gross encounter with that not long ago on her shin, and I can tell you it was terrifying and swift.

I am HOPING they cultured it for MRSA???

An ELISA (the test you describe above) isn't worth the paper it's printed on unless you're exceptionally lucky. A western blot IS, but you must have one from IGeneX, which actually looks at all the bands, and doesn't leave out the most important bands like other labs continue to do. However, after having (hopefully) flooded yourself with antibiotics, it's hard to imagine a western blot will detect much of anything at this point, either.

Given your geographical area and your history of "fibromyalgia," I'd be suspicious of lyme as well.

I'd work on ousting your current infection, then see how you feel. I'd make an appointment with an LLMD, were I you. I'm so glad to see that wound retreating! [Eek!]
 
Posted by Lymetoo (Member # 743) on :
 
I don't know how to read the worthless ELISA, so is THIS your result???

0.91 - 1.09 EQUIVOCAL

If so, then I would say find an LLMD and get a western blot through Igenex lab.

Order test kit #188 and 189

www.igenex.com
 
Posted by adamm (Member # 11910) on :
 
You've most likely had Lyme a very long time, judging from
your Fibro diagnosis. Don't worry about the tests--even the best only
have sensitivities around 50% ( thus being unfit for use according
to some "official" guidelines.
 
Posted by Dawnee (Member # 15089) on :
 
I agree...with the Fibro dx you have probably had lyme for a long time.
Wow.. that is a bulls eye, but it's a nasty one!
Mine were necrotic also, but never to THAT extent.
Looks like it's healing up real good though.
You need to see an LLMD...
 
Posted by lymemommy (Member # 12495) on :
 
Last I knew, it takes 4-6 weeks to build up an adequate antibody response to test positive. If you got bit in late August/early Sept, you are right on the cusp of that time frame.

Also what your doc gave you are not the test results, as someone else indicated, those are the reference numbers.

I'm also pretty sure that a bullseye is definitive for lyme, and that doc's are advised to start treatment right away when one occurs, rather than wait for test results, which may not have a positive result this early in a recently acquired infection.

I agree with the others, get a western blot, preferably Igenex. Since it will take you a while to get in to see an LLMD, copy the CDC guidlines for diagnosing lyme, which I'm pretty sure state all the things I've noted above, and get him/her to write you a 4-6 week rx for abx, to carry you over until you can see an llmd.

You can also use the lyme tx guidelines posted here, but I figured it would be harder for your doc to argue the cdc guidelines, which in this case will meet your needs.

Tkae care,
kp
 
Posted by gemofnj (Member # 15551) on :
 
WOW.. I would listen to the others. SEE AN LLMD ASAP!!

The only lab I would trust have an accurate lyme test is Igenex, however, a bullsye is a given for lyme. No test required!

Also, do you have any other symptoms? Lyme is treated based on symptoms, especially if tests are negative.

I would want to be on least some doxycyline until your LLMD visit just to get a jump on treatment. The longer you wait the harder it is to treat.
 


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