No PEM after weeks on Valacyclovir

[Diwi9]

@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.

 

[Martin aka paused||M.E.]

My Oma experienced the war in Oberschlesien

Look how small the world is. My grandparents are from Schlesien too, so we have the same roots

 

[hmnr asg]

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]

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]

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!

 

[GlassCannonLife]

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]

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.

 

[sometexan84]

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]

[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]

 

[GlassCannonLife]

How's it going @Diwi9 ? Are you still taking the valtrex? Any improvement since that crash/end of remission?

 

[Diwi9]

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.

 

[Diwi9]

Another update. I had my 6 month Moderna booster on Nov. 30th, after another severe response to the vaccine, I have been bounced back into another quasi-remission wherein I am not experiencing PEM. I am still experiencing POTS and lots of joint pain, especially in my spine. It's interesting to have two immunological interventions in a year that triggered a pause to PEM. We'll see how long it lasts this time, I'm afraid the spine issues signal to me that this remission is not as full as the earlier one, but shoot...I'll still take it.

 

[GlassCannonLife]

Another update. I had my 6 month Moderna booster on Nov. 30th, after another severe response to the vaccine, I have been bounced back into another quasi-remission wherein I am not experiencing PEM. I am still experiencing POTS and lots of joint pain, especially in my spine. It's interesting to have two immunological interventions in a year that triggered a pause to PEM. We'll see how long it lasts this time, I'm afraid the spine issues signal to me that this remission is not as full as the earlier one, but shoot...I'll still take it.

That's great to hear! Did you end up going back on the valtrex?

 

[Diwi9]

That's great to hear! Did you end up going back on the valtrex?

Yes, a few weeks ago, but at a lower dose (back to 1000mg twice per day). I am experimenting with cycling it.

 

[GlassCannonLife]

Yes, a few weeks ago, but at a lower dose (back to 1000mg twice per day). I am experimenting with cycling it.

Ah cool, that's interesting. Please keep us posted! I'm hoping to start some soon, once my crash stabilises a bit more. Will start very low and make sure I don't react poorly before I commit to a full dose.

 

[Diwi9]

So this one lasted just over two weeks. Woke up today with total body weakness. My trigger was very light activity yesterday, but I felt my energy reserve was different yesterday, so today's PEM this does not surprise me.

 

[godlovesatrier]

Uh that's annoying @Diwi9 and I hoped you'd feel better for awhile longer yet. Might be worth trying the glucans.

On a side note @hmnr asg I has exactly the same response to valtrex as you did. Basically hyper active and then a big crash. This seems to be a very rare response.

 

[Diwi9]

@godlovesatrier - I had a slow progression into ME. Both full-blown onset events of ME occurred after an infection. First in 2009 and I was mild, quasi-remission after 2011 until 2016. When I relapsed in 2016, I had the big kahuna ME and improvements were very slow. 2021 has been an interesting year with these fluctuations. Obviously when my immune system gets fiddled with, it affects the ME. But you know, we remain such a boring patient cohort...nothing to see or study here...move along!

 

[godlovesatrier]

Haha I know right! A whole wealth of stuff to study and we never get the buy in because "it's all in our heads".

You've had an interesting experience. I certainly wasn't mild before I started the Joshua Leisk protocol. But I am very mild at the moment. Compared to what typically stands for mild.

Well let's hope you're able to get back into a decent place again soon. I'll be glad to fully recover from the booster soon.

 

[GlassCannonLife]

So this one lasted just over two weeks. Woke up today with total body weakness. My trigger was very light activity yesterday, but I felt my energy reserve was different yesterday, so today's PEM this does not surprise me.

I wonder if you would benefit from Aggressive Rest Therapy (ART) - we're just talking about it in my thread on pacing here. You essentially force yourself to rest for periods of time when you're feeling like you don't need extra rest, so that you can consolidate your health and use the extra energy for repair/healing.

It seems to be an area of active debate, but there have been a few reports where it helped people improve permanently in the past. It might be useful to build some more regenerative capacity considering your up and down pseudo remissions.