No PEM after weeks on Valacyclovir

Diwi9

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@Martin aka paused||M.E. - I think I need to hear what you said many times a day because I often feel very alone in my experience because the longer I live with this illness, the less I understand the concept of ME/CFS. My experience is heavy on the neurology, components of immunology and my soft tissue.

My Oma experienced the war in Oberschlesien with 12 children. All of them survived relocating to Hessen. I wish I had her here today. I am the youngest grandchild, so many of my aunts and uncles have now passed. I take pride in carrying my Oma's culinary traditions. It's really something to see my Mom's eyes light up when she tries food she hasn't had in years. My parents still take care of me for rides to the doctor or blood tests, so I try to give back with cooking as I am able.
 

hmnr asg

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I have started on valtrex a week ago and while it has given me energy, it has completely wrecked my sleep. I am much more wired and tired than before. I can get more done but if i keep going like this i think my heart will stop. I didnt have nearly as bad of a reaction to abilify or even ritalin. It literally feels like im on cocaine. I'm going to stop taking it now.

I searched online but the official side effects dont seem to include anything like agitation or restlessness. So I have no way to explain this!
 

Diwi9

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I have started on valtrex a week ago and while it has given me energy, it has completely wrecked my sleep. I am much more wired and tired than before. I can get more done but if i keep going like this i think my heart will stop. I didnt have nearly as bad of a reaction to abilify or even ritalin. It literally feels like im on cocaine. I'm going to stop taking it now.

I searched online but the official side effects dont seem to include anything like agitation or restlessness. So I have no way to explain this!
Valtrex never did this to me, but I did a course of corticosteroids and the wired but tired was insane. I've also gone through phases of the spontaneously. Maybe get back to baseline and retrial to make sure it's not a fluke?
 

hmnr asg

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Valtrex never did this to me, but I did a course of corticosteroids and the wired but tired was insane. I've also gone through phases of the spontaneously. Maybe get back to baseline and retrial to make sure it's not a fluke?
I actually had exactly the same reaction to famvir (four years ago). I thought valtrex would be different. Its so strange that I respond like this to antivirals!
 
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I have started on valtrex a week ago and while it has given me energy, it has completely wrecked my sleep. I am much more wired and tired than before. I can get more done but if i keep going like this i think my heart will stop. I didnt have nearly as bad of a reaction to abilify or even ritalin. It literally feels like im on cocaine. I'm going to stop taking it now.

I searched online but the official side effects dont seem to include anything like agitation or restlessness. So I have no way to explain this!
That sounds intense! What dosage did you try?

Sounds like saving the sleep is a good idea.
 

SWAlexander

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Too much sleeping, no energy, no appetite with jaundice and a very bad skin reaction, my Dr. put me on
FEXOFENADIN Winthrop 120 mg. I had even more negative reactions, such as nausea, headache, dizziness, more fatigue and more sleepiness. My Lab results - bad. I stopped FEXOFENADIN after 4 doses. A sonogram revealed gallstones, in addition to thrombosis.
 
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sometexan84

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I just want to point out, that many have improved like this w/ Valtrex, but still seem to hit a sort of "plateau", where it feels like it's not over.

I was in this position myself. I spent the first yr of my ME/CFS research on EBV and valacyclovir. Had great improvement, but never was in complete remission.

If the above description resonates w/ you at all, I urge you to consider Enterovirus, and the stuff I've posted recently on Peginterferon Lambda.
 

Marylib

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[QUOTE="Diwi9, post: 2364813, member: 28653"Also, does anyone have a clue if pulsing antivirals would be beneficial? Obviously it's not a cure for me, but antivirals have a major impact.

I pulse them. I've only ever had acyclovir but if I take enough it works well for awhile. Then I stop and then use them for a short while again.

"[/QUOTE]
 

Diwi9

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How's it going @Diwi9 ? Are you still taking the valtrex? Any improvement since that crash/end of remission?
I recently discontinued the Valtrex. I'm thinking about trying it in a few weeks to see if it swings me into another reprieve. I'm basically dealing with my regular ME/CFS issues which includes PEM that includes intense joint/connective tissue pain. I seem to have times when I can get away with doing more and other times when seemingly meaningless activities can push me into a crash.