Long term Valtrex users curious

sb4

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I started off with Truvada for a few years (PreP) and my symptoms slowly improved after a year. I eventually went to a cfs specialist and tried valtrex and valcyte. I couldn’t handle all 3. I went off all except Truvada and recently added back in valtrex and feel better. I’m 95% cured
Did you feel like you had the flu all the time before trying this, or where one of those people who rarely gets sick?
 

Pearshaped

...and then things went pearshaped.
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@cornwellsb
this is great Congratulations!
May I ask you on which level of function you were before the Truvada and valtrex? Or to put it this way: Could you describe what things you can do now compared to before?

I didn't know that it is possible to take Truvada and valtrex together.
 
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@cornwellsb
this is great Congratulations!
May I ask you on which level of function you were before the Truvada and valtrex? Or to put it this way: Could you describe what things you can do now compared to before?

I didn't know that it is possible to take Truvada and valtrex together.
I posted my story here years ago ... link below ... I was never bedridden and had a semi functional life but was almost borderline suicidal as life was a haze. Probably a 6 at my worst. I didn’t know what cfs was then and took Truvada for safety as I live in nyc and was sexually active. Within maybe a year of starting Truvada a lot of things changed for the better. Without linking my semi recovery to Truvada I searched out a cfs specialist in nyc from the recommendation of an allergy doctor. Dr Susan Levine was my cfs doctor which led to tests and more antivirals and a steady climb out. It wasn’t until looking back did I realize that the Truvada jumó started me enough to give me energy and motivation to figure out what the hell was going on. Amazingly I kept a well paid job which allowed me to Pursue treatments. I’ll spent my free time in bed. https://forums.phoenixrising.me/thr...-treatment-for-cfs.45823/page-17#post-2276956

I was on valcyte, valtrex and Truvada at one time. It worried me and I dropped the valcyte as I felt awful on it. Valtrex and Truvada is completely fine if you stay hydrated. I typically just take Truvada but I get these weird eye issues from time to time and take valtrex and it clears it up. I have 3 forms of hhv 4/6 and CMV ... contrary to what people say, valtrex does effect CMV as it’s been trialed in transplant patients before transplant. My personal theory is cmv is my eye issues as it effects eyes
 
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I've been taking valtrex about 3 weeks. Working up to 1g over that time period. Started it because i was getting sore throats identical to those I had with acute ebv in June last year and ear nose and throat swelling/soreness with all the same symptoms as acute ebv. These went on for several weeks and even though I stayed in bed for days on end the symptoms just got worse every day. So I felt like I had no choice but to start valtrex. I can feel it working in that my sore throat is reduced/gone my swelling is much reduced and I can just feel my ear nerve tingling at times. However I am suffering with disorientation and quite severe dizziness after an extertional crash 2 days ago.

I guess it's interesting reading that many of you have had mild or no side effects. As I'm still struggling and dizziness has to be the worst symptom in the world. It's hard to concentrate on anything. I had one 24 hour period whole taking valtrex last week where I felt 100% healthy. Was a weird feeling. Guess I got a little too excited about it! As I'm gradually working back to that good place currently.

What I'm noticing is that valtrex appears to immune modulate as well. When my immune system goes "up" I feel stronger and this seems to continue. For example I took 1.2g last night I split doses and started to feel much less fatigued and more energetic by the end of that dosing.

I still don't know what causes my dizziness. It doesn't feel like a drug reaction. I've always wanted to know what causes it as it's annoying and only ginseng seemed to get rid of it. Does anyone have any ideas what they think causes it?
 

gbells

Improved ME from 2 to 6
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I just started Valtrex 1000 mg/day. My EBV and HHV6 IGG/IGM levels are elevated. I know from Dr Lerner's work that people stay on it many years.
I'm curious about how it's going for long term users?

Did side effects abate when improvement kicked in?
Did you get a good result in your first year?
Did you improve more in later years?
How much remission or improvement have you gotten?
Are relapses less severe?
Do you still get PEM/PENE?
Are you doing just Valtrex or Valcyte too?
Anything you'd like to add?
You won't get any improvement with valacyclovir as it isn't effective against HHV-6. I tried it myself back in 2015 with an integrative doc. Actually HHV-6 blocks EBV reproduction so it isn't indicated (necessary). I bet you have current negative EBV antibody labs due to false negatives. The EBV is still there, inflamming the immortalized cells but it can't reproduce. HHV-6 and coxsackievirus (if exposed) would still be reproducing however which gives positive antibodies on testing and would show up as depression symptoms due to the HHV-6 SITH1 protein it generates. I prefer combined cell growth inhibitor supplements like oxymatrine or Shitake mushroom extract to the prescription drugs because they block the function as well as the reproduction of HHV-6 virus and I notice a huge lowering of anxiety and depression on them. However the treatment has to be precise because the apoptosis is easily blocked if the regimen is wrong and you can't take CGIs too long because they stop wound healing. It's a tricky regimen to pull off.
 
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