LymeNet Flash: did you test positive or not??

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Posted by Nal (Member # 6801) on :

Im just curious. Who here tested positive for Lymes and/or co-infections? How long were you sick when you did test positive? I have to go and have my test done next week. My LLMD is testing for Lymes and co infections through Igenx labs. I may have been infected as early as age 5. Does that mean my chances of testing positive are slim?

For those who did not test positive, did you get treated anyway?

Nancy

Posted by dullchime (Member # 6024) on :

Last July- saw symptoms=lyme titer neg.

family doc labeled me as having Lyme disease after plenty of grief.

somehow worked abx through my family doc till I was able to see my LLMD in
September 04'.

diagnosed in September with Lyme.

And its been a wonderful YEAR! (sarcasm 101)

Posted by duke77 (Member # 5051) on :

I feel that I have had it for many years before my tests as well. I don't know if it was luck or what I tested positive on both WB, LUAT urine test, PCR blood test. Most people that have Lyme would love a positive test some may get one but to get all three. Lyme can be difficult to detect but I don't think having it for a long time has anything to do with whether it will be easier to detect or not.

Posted by Aniek (Member # 5374) on :

I tested positive and ELISA 1 year ago. I had at least 8 negative tests in the couple years before that.

I had numerous tests about 15 years prior. My mom thinks I had a positive that a doctor said was false-positive (I was a teenager at the time). I thing she's wrong, because I think that doctor would have treated me with any positive.

I've been infected for 18 years now. 17 years at the time of the positive tests.

Coinfections, I tested equivocal for babesia. Other coinfections that were positive are not tick-borne, they are salmonella, chlamydia pneumoinae, and a few common viruses like Epstein Barr.

Posted by Biting Back (Member # 6018) on :

Tested positive for lyme last year, not tested for coinfections as my llmd treats for all coinfections anyway. Infected going on 22 years next month, but more likely infected as young as age 5, 42 years ago.

Yes, responding 'nicely' to treatment.

Posted by Nal (Member # 6801) on :

Thanks. Ive had these awful symptoms off and on since 99. They disappeared in 2002 and came back last year. I don't recall a tick bite or anything, just a real "achey cold like feeling" right before the neuro symptoms started. I had a severe tick bite when I was 5. The dr said the bite site had become "infected" so he treated me with antibiotics at the time for 14 days. It'll be interesting to see what the tests show.

Nancy

Posted by pomegranite (Member # 3339) on :

Years ago I tested negative on Elisa and CFS. Didn't understand at the time that this meant nothing.

Years later, still suffering and undiagnosed I tested negative by Quest Western Blot.

Years later, still sufffering and undiagnosed I tested positive by Igneix Reverse Western Blot (DNA test!) for lyme, positive for Bartonella and negative for other coinfections. How long was I sick by this point....hmmm hard to say exactly...probably about 20 years.

My LLMD believed I had babesia and was treating for it, although I had repeated (4 tests through Igenix and Sonoma Co) all were negative.

Two and a half years into treatment I tested positive for Babesia Mircoti by MDL and Bartonella by MDL. I tested positive for certain Bb specific bands on Western blot---both IGM and IGG. Different labs (had the labs run at the same time at Igenix, MDL, and Stonybrook) picked up different bands. The tests were all considered equivicol although each turned up different bands that are highly specific for Bb. Including 39 which showed up on the results from two different labs. I know that before the CDC adopted their criteria 39 was considered soooo specific to Bb that Roche was developing a new lyme assay that was specific to band 39 because they knew you couldn't show positive to 39 and not be lyme infected. However, Roche ditched that assay once the CDC criteria came out.

My brain spect showed hypoperfusion consistent w lyme, lupus, HIV or cocaine use (they see the same pattern w all of the above).

Oh the sorry state of testing....

Good luck! Let us know your results. We are rooting for you.

Pomegranite

Posted by artbyjessie2 on :

tested positive on three ELISAs in 5 months but WBs were negative. Finally got treated by PCP for 30 days with Doxy.

Symptoms came back later - ten times worse - finally went to an LLMD and came out positive w/Igenex

Posted by Lymetoo (Member # 743) on :

Mine was not CDC positive. I figure I've had Lyme at least 46 yrs. I think it DOES make a difference how long you've had it because your immune system can become so suppressed that it can't muster a response on the antibodies test.

I also had had previous treatment with steroids before my Lyme dx, causing my immune system to be even more suppressed.

I was tested thru Igenex, then took abx for 3 wks, then retested and the second test showed several additional bands. I would think that nothing besides Lyme could cause that to happen.

I was "borderline" on the babesia test and when I was treated for it, I herxed harder and longer than I EVER did with Lyme meds.

So, I say......be treated for it if even ONE Lyme specific band shows up. The CDC doesn't know squat.

------------------
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 03 March 2005).]