Lots of good info all over the site! I do have a med question.
I had the western blot testing done and need to repeat, but i also had the HHV6 herpes strain test done and the Ebstien barr virus testing done as well.
these tests were done by a lyme specialist who doesn't believe in traditional treatment, so i didn't stay with him.
both these tests came back very positive for me. I went to a different infectious disease dr (one my ins would pay for) w/these results and he said he didn't believe in those tests.
he also said "anyone would turn positive on them" and said he didn't need to see me again.
so, now i feel like i'm living with these illnesses as well as probable lyme disease (bands 31 and 41 on western blot were positive or ind.) and am getting no treatment
Has anyone else tested for the HHv6 or Epstein Barr viruses? what were your results and/or treatments? thanks!
God Bless, Leigh
Posted by sixgoofykids (Member # 11141) on :
Welcome Leigh.
You will find that infectious disease doctors will not treat chronic lyme or even admit it exists. They just got in trouble with the CT attorney general for anti-trust violations for their Lyme treatment guidelines. As a result they have to redo the guidelines.
When you say your first doctor wasn't traditional, what did you mean?
I would post under seeking doctors to find an LLMD near you ... this is a doctor who is experienced in treating chronic Lyme Disease. He will be able to diagnose you and treat you for Lyme, plus the viruses you mention and any coinfections you may have.
Posted by tailz (Member # 10014) on :
I had high titers of EBV, HHV6, and even parvo, but my results indicated past infection. If that's the case, my EBV titers have been high for like 10 years now. Shouldn't they have dropped by now?
I don't buy it either.
Posted by bettyg (Member # 6147) on :
welcome,
do a search; go to top; click on search
type in HHV-G medical topic line any date leave membership no. blank; hit enter
read all posts/replies. LOOK FOR ONE BY "TIMACA" SHE'S OUR RESIDENT EXPERT!
do you have my newbie package; her info is in there using EDIT, FIND, and type in TIMACA!!
Posted by Hoosiers51 (Member # 15759) on :
Yeah, I had those too. Most people in the population, to answer your question, will test positive for prior infection with Epstein Barr. Don't know about HHV6, but I had it and i'm sure it's fairly common.
Honestly, I focus more on the TICK bourne diseases I know I have (and, of course, watch your symptoms, because the tests don't always come back positive.)
Posted by breezywings (Member # 9222) on :
I was tested for these and many others and came up positive.
My neurologist tested me and said that Lyme just destroys the immune system so whatever has been lying below the surface, comes out with a vengeance.
Sixgoofy kids is right. You need to get to an LLMD for sure.
Posted by Leigh9O (Member # 15986) on :
thank you all so much for your input! I did find a LLMD here in arizona and they got me right in!
My appt is for 1:30 tomorrow (june 24th) and they want to see the test results from the western blot and hhv6 and ebv testing.
My HHv-6 test showed hi titers (1:80) for IgG indicating its active in me now. I did read that most of the population will test positive for the HHV-6 and EBV, but stay w/in a certain range or are pos for having it in the past.
the infectious disease dr I saw (only once) said the test results don't matter and i'm not sick, when you can see by looking at me that i'm not well, and i have chronic pain which he said "could not be due to infection" what an idiot!
My concern is that its showing positive and active now. So, hopefully tomorrow i will have a clearer understanding of what my results mean and what course of treatment is recommended. I'll let you all know.
thanks again for all your help and input and keep the faith!
god bless, Leigh
Posted by Keebler (Member # 12673) on :
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Leigh,
How did you find the LLMD? -- Through a lyme support group - or a referral from another lyme patient?
Do you know if this doctor is familiar with the ILADS research?
I hope it goes well.
And - yes, I just got positive tests back for HHV-6 and for Cpn.
It's best to have specialty labs to these tests if you can.
For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine suggests the following lab tests (codes are CPT codes):
1. MycoplasmaTest Panel (CPT: 87798x3, 87581)--Mycoplasma species panel of 4 pathogenic mycoplasmas (M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR.
Alternatively, a Mycoplasma general (all species) test by Qualitative PCR can be substituted.
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