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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Famvir hhv6

Yea your right about everything, I sent off to VIP for serology testing for xmrv when they first started testing, I have not heard a peep,
I'm not sure I want to, it just seems like, why bother to add to the I'm already screwed list.

UPDATE : I cannot believe the progress I continue to make with my chronic eye redness (CMV), I attribute it all to Valcyte, excepting the blood work which will be taken on Fri. I have had no side effects from the 1800mg. daily.

Best to everyone,
interesting michelle, i improved alot on famvir and then went backwards when i changed to valtrex(because it was cheaper). I recently got another lot of test done on ebv and cmv and the ebv test said i havent had a past infection from ebv(negative IgG, IgM) although positive to ebv 2002???? did have igG to cmv. In australia cant get titre values to tests so my doc uses lymphocyte subsets and these went down when first on famvir with improvement in symptoms and when on valtrex and feeling crappy these lymphocyte tests were all elevated again. Now its been about 4 weeks on famvir again and i am feeling better. Famvir is not suppose to have any effect on cmv or hhv6 but i think we're proof it does have an effect. I take 250mg twice a day and i also never had any die off effect, interesting!
Hello I was hoping you were much better by now. Have you been able to stop treatment and be fully cured?


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Hello I was hoping you were much better by now. Have you been able to stop treatment and be fully cured?

Fully cured? Dam close. But i continue to take famvir. Famvir has helped alot but equally as helpful has been trt/hrt, testosterone replacement therapy. Besides its effects on increasing general recovery from activity etc, it also has a big impact on improving immune function, myself ive noticed an increase in neutrophil counts which have been low for a number of years and now within normal range.

My thoughts are that the antivirals target the infection directly that trouble me and the trt indirectly helps through improving immune function. I will say that trt has helped alot with arthritic joint pain and made a big difference with lower back issue that i have had for years . I am considering later in the year stopping famvir and see how i go. Trt is a for life treatment generally, once you have started.

I dont need lyrica anymore for pain and half cut my tramadol use in half.Tramadol was mostly for joint and back pain. One of my next moves will be to look at stopping sleep meds. I am sleeping better but still medicated sleep.

I was using ARVS and i think it helped but im not sure it helped outside of just reducing inflammation. Generally i found any positive effects stopped with time so a break was needed and id restart the arvs again with some improvement. I think the body/immune system just got use to the arvs anti inflammatory effects and would up regulate inflammation which is why breaks were needed.

Im not convinced cfs is a retrovirus. I think cfs can have common viruses continue to infect cfsers long term. Those infection can effect the hypothalamus which can be a cause of many symptoms. The hypothalamus controls many hormones, immune system/inflammation and other functions like sleep. Fixing the hormone abnormalities or sometimes hormone replacement is needed with treating infections one may have, is what i have found helpful for me.