My Famvir Adventure

[Sushi]

If antivirals are GABA anatagonists (need cites for this though), mightn't taking GABA as a supplement help reduce these symptoms?
@Sushi, have you ever thought about trying this?

I do take GABA but not sure what it does for me.

Sushi

 

[Ema]

I do take GABA but not sure what it does for me.

Sushi

Well, so much for that idea.

It clearly doesn't alleviate your side effects from the AVs.

 

[Natistar]

After several months on LDN and inosine, my EBV levels actually went up. Thus, I am beginning Famvir as per my ME/CFS specialist. My dose will be 250mg bid for 2 weeks, and then we will raise the dose depending on how I'm feeling.

I know this has been discussed to death, but I don't understand the IgG vs IgM (?) argument. My nephrologist looked at my EBV labs today and basically said my ME doc doesn't know what they're doing by putting me on Famvir because there's no way I have EBV (….. everyone has elevated levels, etc). Because Famvir is potentially nephrotoxic, his comments left me confused and scared.

If anyone could summarize their experiences with Famvir, including dosages, how often you raised your dose, how long before you saw improvements, etc I would appreciate it deeply. Thanks.

Hello, know it’s been a few years later but i’m wondering if you ever cured your cfs? I really hope you reply! I’m in desperate need of someone to connect with

 

[Natistar]

Two months into Famvir and nothing particularly good to report. Two weeks ago I had a severe GI "thing" for a couple of days, and it's knocked me down. I'm back to napping every day as I am simply exhausted and my symptoms are flaring. I'm walking on eggshells!

During that same time, I was put on propranolol, which I loved, but I developed severe leg weakness. It's hard to know the cause - the proproanolol or a severe crash secondary to the GI "thing" (virus???) I'm was switched to atenolol and my legs are slowly recovering, but my POTS symptoms aren't under very good control.

I meet with my ME doc in two weeks, and I'm wondering:

* can add Celebrex to the mix, as per Pridgen's protocol?
* can I add another antiviral or switch antivirals? (I have HH6 and EBV)
and most of all:
* am I being too impatient? Is it too soon to change this ship's direction?

I can't decide whether this process is 1 step forward and 2 back, or 2 steps forward and 1 back. More likely it's a zig-zagged unpredictable wandering thru the desert with an occasional oasis for respite!

Famvir update and recap: (for my own use, and anyone else who’s traveling the same path)

In November of 2014, I began Famvir at 250 mg once daily. Over at the course of one month, I built to 500 mg three times daily. Side effects, while ugly for the first few days, quickly subsided and I was able to tolerate the increased dosage easily.

After 4 months, my liver enzymes became elevated and I ceased the Famvir. It took one month for them to return to baseline and I restarted Famvir mid April 2015 with 250 mg at bedtime with the plan to build to 250 thrice daily.

This time around, it’s been difficult to build the dosage. With 250 mg at bedtime, I do “OK". But as soon as I try to add another dose, I get vertigo, nausea, headaches, and feel awful. Anyone else experience this?

As with all things ME, slow and steady. I should have made my new avitar a turtle lol.

Hello, I was wondering how you’ve been doing after all these years with cfs and
Famciclovir. I hope you can update me!