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How many of you had EBV, CMV, HHV6 or another virus before you became ill?

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Johncitis
New Member
Joined : Jun 2011
Posts : 16
Posted 6/18/2011 12:37 PM (GMT -7)

Who here has actually tested positive through blood tests for Lyme?  Anybody have their doctor tell them that they were positive for Lyme but the blood tests indicated negative? 

I am wondering if these viruses, such as HHV6 cause chronic Lyme symptoms too.  HHV6 is close to as bad or worse than Lyme.  Read "The Virus Within" if you haven't.

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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 6/20/2011 12:41 AM (GMT -7)
I test negative to all viruses (HHV, EBV, CMV, etc.), much to the surprise & shock of most doctors because of how common these infections are and because of my symptoms (severe fatigue, etc.).

Also, in 2007, I tested positive for Lyme Disease through IGeneX lab, but it was not positive by CDC standards - it was only positive by IGeneX standards. Western Blot IgM bands 18, 23, 30, 31, and 34 were positive and bands 39 and 83-93 were indeterminate. Western Blot IgG bands 30 and 41 were positive, with band 39 indeterminate.

The following year, I was tested by a disbelieving infectious disease doctor when I was in the hospital (for a severe herx) and it came back CDC positive. He told me it had to be cross reacting with something else (but he couldn't tell me what it was cross reacting with) and that it was a false positive. I later found out he'd sent the blood to Mayo Clinic for the Lyme test. It was positive on the IgM Western Blot for bands 23 and 39, both of which are very specific for Lyme. The IgG Western Blot was only positive on band 41.
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ktp812
Veteran Member
Joined : Jul 2007
Posts : 732
Posted 7/13/2011 2:27 PM (GMT -7)
I know this is an old thread but I wanted to say that when I had Lyme (not sure if i did) I never felt as bad as I do now with high HHV6 and EBV antibodies. I had been tested for both again and again but nothing showed up until this spring when I went to see a specialist in Boston.

I had treated Lyme for 30 months and felt a little better but then became considerably worse and couldn't understand why. I am now treating with Valcyte because I had high titers to both virus's. I am not sure this will help but I have to try...I have been sick since 2004.

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Cat111
Veteran Member
Joined : Nov 2010
Posts : 571
Posted 7/13/2011 4:39 PM (GMT -7)
I test negative for EVERYTHING.

Never had EBV or others.

I am in perfect health !!!!!!! Or so they all said. PFFFT !!!

I have framed my 'solitary IgG band 41 positive'...and hung it on the wall. I throw darts at it occasionally. Tomorrow I'm going to toss it in the yard and see if any ticks crawl on it.

I (heart) my LLMD !!!!!!
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wynnie
New Member
Joined : Sep 2011
Posts : 3
Posted 3/2/2013 11:12 PM (GMT -7)
I had mono at age 18, stayed out of school & work for 2 wks, went back to a normal life of h.s., 38 hrs of work, & social life. Got to college, loved the freedom & social life. Could do well for a while & then would be down sick, worn out. At 21, dropped out of college, no money, very ill, very exhausted.

Went to stay with parents in their snow bird home for 6 wks. Instantly started feeling better, got a job, ran around, socialized more than I should have. Parents required me to return home with them when they came back. Soon, I was back in pain, fatigue, post exertional malaise, muscle pain, swollen glands, sore throat, chronic sinus infections.

Met & married my husband, moved to where he was at. Decided to complete BSW degree, before long, was experiencing fatigue, exhaustion, constant illness, pain, sinus infections, swollen glands, sore throat. Had to take a leave from school after diagnosed by a Dr as CEBV. All Drs before her, said could only have mono once. Told after that, could only treat symptoms. Dr. after that found fibromyalgia. We moved 3 times in 3 yrs due to floods, dry wells, property selling. Finally, moved back to husband's home area. I became pregnant with 1st child, pregnancy went well except I had constant horrible reflux & fatigue. Took Malox for reflux which later learned caused constant diarrhea. Baby was born normal. At age of 10 mos, he got chicken pox from child at babysitter, I got them at same time (age 31) as we broke out the same day. I got infection in glands, swollen throat, extreme fatigue. Fast forward 4 yrs to child #2, normal birth, nursed 40 min out of every 2 hrs, wore me out. Had returned to work following leave & tested positive for CEBV. Had to take time off. Unfortunately, I have had so many flares, my children at 18 & 22 don't ever remember me well.

I have seen family drs, nurse practitioners, chiropractors, massage therapists, rheumatologists, endocrinologists, GI's (oldest son has Celiac), orthopedic specialists, internists, I can't even name how many more. I have had approx. 10 major flares since I was 18, I am now 53. I can't work, even the specialist says I can't. I started seeing a specialist Feb. 2011 every 4-6 wks - an 11 hr r-t drive. Needless to say, I sleep most of the ride while my husband drives. I was first diagnosed by him as CEBV, HHV6, mycoplasma pneumonia, supraventricular tachycardia, hypothyroid (previously diagnosed). I have a previous diagnosis of fibromyalgia; however, this specialist doesn't believe in fibromyalgia.

I have not missed an appt. For 2 yrs, I have been taking 1G Valtrex 4x's/day. I was on Valcyte 900 mg until liver became toxic due to Mobic. Went off Mobic, when numbers were normal again, started back on Valcyte. Was treated for mycoplasma pneumonia & is it now clear. Am on digoxin & atenolol for SVT. I still have no life. I have post exertional malaise which causes me to be down for days if I do anything at all. I haven't worked for 2-1/2 yrs & specialist says I can't work to apply for SSDI but now won't fill our all of the paperwork, very frustrating.

I need to find someone in the Indiana, Cincinnati, Louisville area that is doing more than herbs. I think the antivirals might work but feel there is more that needs to be found. This Dr. is not good about listening, somewhat feels he is God. If you know of anyone in any of these areas who is working on CEBV &/or HHV6 with antivirals or is getting good responses, please let me know. Thanks so much!!
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