Has anybody else tested positive for ACUTE HHV-6?

Discussion in 'Fibromyalgia Main Forum' started by needtobreakfree, May 31, 2014.

  1. Hi everybody. I've been doing some googling online, mostly because I'm trying to figure out a timeframe for when I might be better. I've been on Valcyte now for two months with a little progress, but I still have a ways to go. I've been bedridden since December and I'm slowly climbing my way out of that.

    I know that many people with chronic fatigue syndrome have high IGG titres for HHV-6, which I certainly have; but I'm wondering if anybody else out there actually has tested positive for acute HHV-6 like I have. I have a high viral load with viral DNA in high quantities in my whole blood testing. I think you call it positive serology.

    I sent my lab results to the HHV-6 Foundation and they said it was highly unusual to find somebody who tests positive. I have a chronic fatigue specialist who, after my testing positive, said it is extremely rare, and I also found it on a couple of websites that said it is rare, and may not happen at all in people without HIV. I do not have HIV and have been tested three times over a period of six months, so I'm sure it's negative. So I am confused why I am one of the very few people like this. It may explain why my symptoms are so very severe. I've only been sick since November, but when I got sick, I fell extremely sick, almost deathly ill.

    The Valcyte does seem to be helping as I am making very slow progress. I've been on it for two months. I'm wondering if there is anybody else out there like me who may know when I can physically function again, at last in a capacity that would allow me to take care of myself. I do have low NK cells, like Chronic Fatigue patients.

    Thanks so much.
  2. joanierav

    joanierav Member

    hi need to break free. i tested high positive for hhv-6 many yrs. ago. my chronic fatigue doctor in nyc. didnt say much about it. i was at the time on valtrex for oral herpes simplex.

    i want to tell you , that it is very good news that you are making progress. albeit very slow. especially after only two months. some of us that have been sick for yrs, see no progress for yrs. , while changing treatments frequently.

    try everything you can to get well. most literature, says that one has a good chance of improving within 3-5 yrs. after that , its almost imp0ssible. you have a good chance, because you are already seeing slight improvement.

    take good care and try to read everything you can on chronic fatigue syndrome. you will know what makes sense and what doesnt.

    love, joanierav
  3. Thank you, I appreciate your reply. That's interesting that you also tested positive for the acute virus. Were you bedridden at the time? I have a lot of weakness and neurological problems. I'm gaining strength, but can't walk because it sets off the nerve problems so badly. The Valcyte seems to work, but it mostly works when I take more than two pills per day, but I really can only tolerate two. When I take more, I get so bad. I'm going to ask my doctor if I can take a low dose of Valcyte and combine it with a milder antiviral. I'm severely deconditioned. I recently began being able to bathe more often, on most days, but taking a bath takes everything out of me. I breathe like it's a marathon from deconditioning.

    I know I'm much newer to this than you, but let me know if you need any help. I have some experience with herbal meds and with Valcyte and experience with reducing the cost of Valcyte.

    Take care.