posted
I wrote a negative review of the doctor who had ignored my positive Lyme test and misdiagnosed me with fibro/CFS only. Someone responded with this:
"I (the respondent) had a positive IgeneX test, but the bands I had can be positive because of high Epstein-Barr titers."
She didn't specify WHICH bands she had on IGeneX, of course.
I was IGeneX and Labcorp positive for 39, which is Lyme specific, and 41, so I am not wondering about my own results. However, are there really any bands that can be made positive by the Epstein-Barr virus, or was this person just trying to discredit IGeneX?
-------------------- Went through five years of hell because an IDSA doc ignored a CDC-positive Western blot in 2009. Started Lyme treatment in early 2014. Trying to wrap my foggy brain around the intricacies of this disease. I also have Hashimoto's thyroiditis. Posts: 30 | From NY | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: "Can high Epstein-Barr titers ever cause positive IGenex bands?"
No. No. No. No.
The bands are noting reaction to a spirochete . . . not a virus, not any other bacteria.
Only one band (maybe two) might cross reference with another spirochetal infection. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I think 30 and 31 can - hence the epitope tests for them. Not sure about other bands and crossreactions. Would like to know my self - viruses and bacterial.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'd call Igenex. They might be able to tell you if no one here knows.
39 is a bacterial membrane protein specific for Bb 41 is specific for a flagella
I think your doctor who said it wasn't Lyme is an idiot and the person who responded to you is a doubter. Neither person is helpful.
Since you're CDC positive though, I'd put my money on the virus bands being an excuse to tell people it's a false positive or (more likely) the person can be infected with both Lyme and Epstein-Barre.
posted
No, I know my test was Lyme; I was just wondering if that person was right about any of the non-borrelia-specific bands.
I will check the links Judie provided (Judie, you are a Link Goddess) and call IGeneX.
Thanks, Lymies!
-------------------- Went through five years of hell because an IDSA doc ignored a CDC-positive Western blot in 2009. Started Lyme treatment in early 2014. Trying to wrap my foggy brain around the intricacies of this disease. I also have Hashimoto's thyroiditis. Posts: 30 | From NY | Registered: Jul 2012
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posted
This is really interesting to me as that i have issues with these same questions. I had previously posted that i have a +anti-ccp, an antibody very specific to RA, and was dumped in the RA lane (with massive immune suppressant drugs) for 3 years.
In the midst of that i had a Labcorp Lyme test that was +39 but ignored due to "cross-reactivity" with RA. Eventually i got to a LLMD and had an Igenex test which was +39, +41, IND 83-93. Btw, is this considered CDC+ and reported?...
Additionally, i have high EPV, Mycoplasma, CMV as well as low CD47. The Rheumy insists that 1) "the lab isn't totally reliable (what lab is? hence the need for clinical diagnosis, right?) 2) "these bands can be cross reactive."
I emailed Igenex about this issue and didn't get a response. This seems to be one of those questions where there are conflicting opinions.
For me, the +CCP remains a big question as to if the Lyme infection has created the antibody (this is what my LLMD...that it will go down with treatment) or, that i possibly have both RA and Lyme (but fact is i failed 5 different major RA meds).
I am going to post a new discussion re +CCP but anyone who has experience with this i would love to hear from. THis is pretty much unchartered territory as far as i can tell.
Back to the EBV, i have the same questions as you and have been unable to get a consensus.
I also got in an argument with a doc about testing. This doc had diagnosed my EM rash as a spider bite. I had been seeing this doc for 10 years and trusted her.
I got a second opinion and a Labcorp test. CDC positive on that one.
I talked to my old doc about it and she immediately snapped at me and asked if it was "that lab where everyone tests positive."
I said it wasn't and she didn't have much to say after that. There's so much denial about Lyme.
This whole "it might be Epstein Barr" just sounds like more confusion being thrown out there.
I've had 3 tests from Igenex after being reinfected. I am CDC negative on those, so it all depends on how the tests are interpreted.
I even have 4 pluses on a band and am still considered negative even with 2 known ticks bites and several bands that aren't counted by the CDC because they were part of the lymerix vaccine (which I never had, they are Lyme specific).
These test were NEVER meant for complete diagnosis.
Lyme messes up the immune system and sets you up to collect infections. I have 15 coinfections.
btw, i also have Hypercoagulation but the test i was given that established that was Prothrombin Time. Is this part of the 'Fibrin Monomer' (sp) test you refer to?
Also, re CDC+, what i meant was am i a reported case? Does IGENEX report?? Or does the DR report....
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I don't know who reports to the CDC.
I've had two tests for hypercoagulation. Both were drawn from Labcorp.
One said my fibrin monomer was abnormal. That's all it said, no other details.
I then treated with boluoke for several months.
Labcorp then did a blood draw for an ISAC test (Labcorp is suppose to do these for free without issue, but the tech wasn't informed and that was a whole other ordeal). Esoterix is the lab it's sent to for analysis.
The ISAC test showed my fibrin activity was now in normal range, however on the high side. This had way more detail than just the fibrin monomer test.
Posts: 2839 | From California | Registered: Jul 2012
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posted
We can also contact IGeneX by calling them at 1-800-832-3200 -
No, IGeneX doesn't report cases - that's done, or not done, by doctors to counties, who report to the state, who reports to the CDC - it's a long chain which can get broken at any link, unfortunately.
Posts: 13171 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Adding to Robin's note about reporting cases to the CDC. That's usually done by the diagnosing doctor to the county / state health department and they report it to the CDC.
In Oregon, the various health departments have sometimes called naturopathic doctors who report a case of lyme and try to talk them OUT of it. I know this first hand. Actually "try to talked them out of it" is putting it quite mildly. In the end, the report was just not accepted.
When I had a CDC positive Igenex, my MD at the time would not even accept it. Tossed it into the trash can right there in the office visit (along with Dr. B's guidelines I had taken to discuss with her). I asked if she would at least report the case and her face just about blew off her head. I got the official state motto tossed back at me.
By the time someone actually has a CDC defined positive, that seems like enough hurdles to have to jump over. But, in Oregon, the official motto is "no lyme here" and they intend to stay under that cover.
Every now and then, though, a case or two do seem to trickle in to one or the other of the report graphs comparing state lyme cases, somehow, though so many are not counted, or treated. Those charts are just a joke. I think the realtors and tourism folks are in on the joke, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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