hi all. i tried valcyte for 6 months and it did not work. all i have is 1:320 IgG for HHV6.

K. Loomis of the HHV6 foundation keeps telling me that i should have an endoscopy and check for enteroviral infection. she says many people are finding this.

has anyone at all on this board had this test???

thank you sue

I recently got a biopsy of the antrum per Dr. Chia, and I'll find out the results on Apr. 1. I've been taking oxymatrine, his prescribed herbal compound for enteroviruses. It's supposed to suppress the virus and tilt the TH1/TH2 balance toward TH1. He's still looking for a pharm company to invest in an antiviral, so even if you do show up positive, it might still be awhile before you can do anything about it with lasting effects.

On a positive note, his son who was diagnosed with CFS in high school has been using oxymatrine for the last 10 years and is now running 3-4 miles a day.

I'll let you know what he says on my next visit

-joey

thanks a lot for your response and please do let me know your results!

i see that you can order oxymatrine online..is this the same thing that dr. chia is using?

i heard demeirleir uses quercetin for enterovirus...

may i ask if you also have EBV, HHV6, or CMV?

thank you! sue

I haven't heard of quercetin for enteroviruses, but I have been taking it as an antihistamine.

I wouldn't order oxymatrine online. Dr. Chia uses a source from Kowloon Bay, HK as he is concerned about contamination from unknown chinese sources. It is my understanding that you would have to order this through him. What is the address of the source you found online?

I have EBV and HHV-6 titers, no CMV. However, I've never tested for the EBV early antigen, only positive IGM and IGG, and I'm waiting for those results to come back. I have 1:160 IGG for HHV-6, not considered extremely elevated but still elevated.

-joey

Sue,

Keep your eyes on Cort Johnson's Phoenix-CFS site in coming weeks. He will be posting a recent interview with Dr. Chia shortly.

Apparently Dr. Chia is talking with a number of pharmaceutical companies with regard to development of an anti-enteroviral. I have a feeling that if a correlation is shown this summer when Dr. Montoya publishes his study, we will see a snowball of interest for the drug companies, other researchers, etc.

He's still looking for a pharm company to invest in an antiviral, so even if you do show up positive, it might still be awhile before you can do anything about it with lasting effects.

This is what Dr. Levine told me as well. Apparently, Chia was also using IV immunoglobulins--very tough stuff.

With regard to having the upper GI endoscopy, how hard is it to find a gastroenterologist who is willing to play along? Did you guys end up running into "why is your doctor ordering this testing for a psychological disease" type stuff?

mj0ey, my HHV-6 titer (Quest) was the exact same as your (1:160). My illness was of instant onset in origin, with a brutal 3 month long upper respiratory infection, with a 6-week flu-like illness earlier that year (no psych issues, etc). I am curious as to what your game plan is. I tried 4 months of aggressive abx (high mycoplasma IgG) with no changes whatsoever.

I am curious as to your game plan for treatment at this point.
[This Message was Edited on 03/15/2008]

to found out where to send the slides after your endoscopy, please email: kristin_loomis@hhv-6foundation.org

i had GI issues too but i know i 1st had mono....:(

this is getting so hard..

sue

hi ria!

where did you get your HHV6 tests done? apparently, only Focus or Specialty are accurate.

my HHV6 IgG was a little elevated and this by no means proves active infection..it may suggest it. elevated IgM would prove it but this doesn't usually appear after a long infection.

if you do test positive for enterovirus, u can take a oxymatrine (buy this only from dr. chia's supplier due to possible contamination from other sources) or quercetin. there is no actual drug yet, just supplements.

please keep in mind K. Loomis knows A LOT and has been so much help to me....i am very indebted to her. however, she is not a doctor and not always correct. she told me dr. lerner would never treat me with antivirals because my titres were too low but he is treating me with antivirals.

good luck sue
[This Message was Edited on 03/16/2008]

hi ria. i re-start valcyte tomorrow (monday) at 1/2 the dose i was originally on (450 mg per day) due to some liver enzyme problem.

may i ask what your RNase L was? mine is VERY VERY high.

i didn't realize you had seen dr. cheney....thats pretty neat!

i heard valcyte does not have any immunomodulatory properties...just antviral...but i dont know this for certain. someone said montoya told them that.

i am at my wit's end with this disease. if only i had SOME clue..ANY clue..that i am on the right track...:(

thanks hon and all the best sue

I think Valcyte has a hefty list of side effects that include things like anxiety, insomnia, GI problems, confusion, etc... so its hard to tell whats a "dieoff" or whats just a side effect...

my rnase l was 1885 before treatment and normal was <50.

after 5 months of valcyte, it was still 1265.

i think the only thing that can help me is ampligen but i cant get it.

i am so so sick ...i honestly dont know how much longer i can hang on.

i dont even feel like i am here...my mind is gone.