Immediate positive response to antivirals/immune-modulators, then worse?

[bob800]

Within an hour of taking a single dose any of the following, I get a near-complete resolution of fatigue, headache, and any "sick" feeling like sore throat / temperature issues:

• valacyclovir (valtrex)
• ranitidine (zantac, no longer sold but I still have some)
• cimetidine (tagamet)

But, the effect only lasts for around 24 hours, and then I become drowsy, somewhat weak, and with much reduced tolerance for exertion. Subsequent doses just seem to prolong this worsened state, and never have the initial positive effect.

I've reproduced this same pattern 5 times using the three drugs mentioned above, taking at least a week break in between. Has anyone experienced anything similar?

I've only pushed through 4-5 days dosage in one stretch before I gave up. I always return to baseline after a week's break, but I worry whether longer-term dosage might set me back permanently. Alternatively, there might be a benefit to sticking with it longer, like Martin Lerner's antiviral trials suggest (e.g. initial worsening the first month, then slow improvement)

My labs show: past EBV (IGG only, 1:350), negative CMV, negative HSV-1, negative HSV-2, negative VZV

BTW, the dramatic response to ranitidine/cimetidine has been documented by Dr Goldstein here (pg 4).

Thanks!

 

[heapsreal]

• valacyclovir (valtrex)
• ranitidine (zantac, no longer sold but I still have some)
• cimetidine (tagamet)

Do you take them all at once or do you mean separately. I had a quick look but couldn't find it, there was a study how zantac treated varicella virus and this was before antivirals were available. If I recall correctly it increased T cell function. I had some positive effects with zantac but also on famvir, I can't say it was a complete cure.
S
I'd forgotten about it so seriously thinking of trying it again

 

[bob800]

Separately. They all produce extremely similar effects for me.

Yeah, cimetidine and ranitidine inhibit suppressor T-cells, which supposedly stimulates the innate immune response. Dr Goldstein for instance claimed cimetidine cured his acute mononucleosis patients, but a follow up controlled study didn't show any benefit.

Incidentally, I've taken famotidine (pepcid) for years for my stomach, and it lacks the effect that ranitidine/cimetidine have on my CFS.

 

[Rufous McKinney]

• ranitidine (zantac, no longer sold but I still have some)
• cimetidine (tagamet)

sharing I used something along these Iines, my dentist formulated it...and I failed to grasp it includes these antihistamines.

(cycles of mouth swelling, that my dentist perceived as possibly allergic reaction/angiodema) (which my doctor perceived as Put Her On Anti Depressants)

so the mouthwash stuff caused my throat to shut down entirely. Like choke, can't swallow, and I threw it away after trying it for two days (eighty dollars, not covered)

 

[Judee]

sharing I used something along these Iines, my dentist formulated it...and I failed to grasp it includes these antihistamines.

Do you think it was because they dried your mouth and throat out more? Is that why you had trouble swallowing after using the concoction maybe?

 

[bob800]

Update on my original post. After a couple days trial of valacyclovir again, after 1-2 days of improvement, I again started feeling much worse than before I started it. During this time, I noticed a slight taste of blood in my mouth that persisted for a few days, which seemed to stem from some extremely mild petechiae on my tongue.

I got a CBC and it showed mild thrombocytopenia (120k/uL). Turns out this can be a side effect of valacyclovir, and some studies mention a very similar delay (~48 hours after treatment initiation), and another one for acyclovir mentions tongue hematomas

Anyway, I'm fine, but let this serve as an example not to blindly follow the "feeling worse means it's working" advice that is often given without evidence or context.

 

[Judee]

Anyway, I'm fine, but let this serve as an example not to blindly follow the "feeling worse means it's working" advice that is often given without evidence or context.

That's why I'm really thankful for my Garmin watch. The body battery numbers give me an indication of what's helping or not. Like if something is working, the bb numbers will go up even if I feel worse for a while.

However, if I feel worse and the numbers are crashing then I know that substance is probably a "no-go" for me. (I'm almost completely housebound so getting to a lab for medical tests is just about impossible for me at this point.)

 

[xebex]

as per the antiviral - they can be hard on the kidneys - so maybe the imapct on the kidneys is overriding the impact on the virus. I had to give up antivirals for similar reasons.

as for the anithistmaines - they affect neurotransmitters, catechols and thus the central nervous system so you are likely getting some kind of bonus affect then rebound effect/withdrawl.