High dose Acyclovir

[m1she11e]

I dont have much time but I thought this was important to post. I have posted many times through out the virus threads if you want to find more details.

In the last 4 or 5 months I have been much better. (Long post in General treatments thread) I wasnt sure if anti virals really helped me a whole lot. I had been on Famvir at 500mg, 3 times a day for about 2 years. I never had die off or felt better or worse. My doc switched me to Acycovir 800mg, 4 times a day. It was important to him that I take 2 at a time and with meals. He said he was getting better results than Valcyte with this dosing. Also, no extreme side effects. I thought Acyclovir was like the PEZ candy of anti virals so I didnt really think it was doing anything either.

A few months ago I lost my insurance and this high dose of Acyclovir isnt cheap. I slowly took less and less and totally ran out about a month ago. I did however have some Famvir 500 mg. I was feeling a little sore throat coming on and faint symptoms that had slowly fallen away. I took the Famvir 500 mg, 3 times a day for the last month. It was useless against my symptoms. Finally it all unraveled. I suddenly woke with that crushing fatigue that I havent had since a few months on the Acyclovir. (Other things were helping too so until this little experiment I doubted Acyclovir was even one of the thing that was really helping) Famvir did NOTHING for the symptoms and I went from working out daily to barely being able to climb the stairs. I spent 2 days in bed. This was an unpleasant walk down memory lane for me!!! The only thing that had changed was that I was out of Acyclovir and had been for about a month. Finally I used money I did not have and got my Acyclovir. Im taking the high dose I mentioned above again and within only a few days my bone crushing fatigue has lifted. I still am climbing out of the hole but I feel upward momentum for certain.

My point here....If you can get Acyclovir at 800 mg, taking 2, 2 times a day I would give it a try. Yes, that is 1,600mg, two times a day with food. Im not sure why it is helping but I could not tolerate Valcyte. Famvir was obviously doing nothing. I guess that Acyclovir was really helping me after all.
Its the cheapest, easiest to get and has the fewest side effects. This is a whopping dose though. I can only imagine what my pharmacist things when he hands me that much Herpes medicine!!!

It has been about 5 months that I have been doing so well. I forgot what that fatigue that you can barely sit upright feels like. Usually I get scared that Im crashing to the depths of sick hell when I feel like that. For whatever reason I didnt feel it was here to stay. I felt positive it would pass and it is.

Hope this helps someone!!

 

[jeffrez]

This is very interesting, and good to know as a possible treatment option that's less toxic than Valcyte. Surprising that Famvir didn't work for you, as some report at least moderate results with it. But everyone's different!

 

[m1she11e]

This is very interesting, and good to know as a possible treatment option that's less toxic than Valcyte. Surprising that Famvir didn't work for you, as some report at least moderate results with it. But everyone's different!

That is kind of why I posted. I thought Acyclovir would be useless and that Famvir was the closest thing we had to Valcyte has far as ability to kill HHV6, EBV, and CMV. I will say that my viral titers for HHV6 went down while on Famvir but no physical improvement. I didnt start to feel better until I started this high dose of Acyclovir. Until I ran out I really didnt know how much it was actually helping.

 

[jeffrez]

That is kind of why I posted. I thought Acyclovir would be useless and that Famvir was the closest thing we had to Valcyte has far as ability to kill HHV6, EBV, and CMV. I will say that my viral titers for HHV6 went down while on Famvir but no physical improvement. I didnt start to feel better until I started this high dose of Acyclovir. Until I ran out I really didnt know how much it was actually helping.

What supposedly is the activity of Famvir against HHV6? My doc wants me to try it instead of Valcyte, citing less toxicity than Valcyte and that it's probably stronger than Valtrex. I think you said once (if I can remember right) that the Famvir lowered your HHV6 titers, but apparently you didn't feel any better from it? I've seen other people say they got great results, though. Just wondering if I should just jump on the Famvir for a while and see if it helps, or go right to Valcyte. I don't really want to waste any more time with something that's not going to be effective, I think you can relate!

 

[m1she11e]

What supposedly is the activity of Famvir against HHV6? My doc wants me to try it instead of Valcyte, citing less toxicity than Valcyte and that it's probably stronger than Valtrex. I think you said once (if I can remember right) that the Famvir lowered your HHV6 titers, but apparently you didn't feel any better from it? I've seen other people say they got great results, though. Just wondering if I should just jump on the Famvir for a while and see if it helps, or go right to Valcyte. I don't really want to waste any more time with something that's not going to be effective, I think you can relate!

As far as Famvir being effective against HHV6....this is how the story goes... Doctor Dantini (Doc in Florida that wrote a CFS book and supposedly cured himself) talked to the people doing the clinical studies on Famvir. They were only trying to have it approved for HSV. They said it was active against HHV6 but that is not what they were working on at the time and there was no money in it.

I understand not wanting to play around with this illness longer than needed. I would still try starting with the Famvir or the Acyclovir for awhile and see if you can knock some of those titers back before proceeding with Valcyte. My doctor was all about pushing that Valcyte and told me that I would never get deep into the cells if I didnt use it. Now he only prescribes Acyclovir. He was doing Famvir for awhile but really swears by Acyclovir.

Tough choices....

 

[jeffrez]

Thanks, that's actually encouraging. I just found out today they called in the Famvir, so it looks like I'm going with that. If it doesn't seem to work, switching to Acyclovir sounds like a better option than Valcyte, so thanks for making this thread, really appreciate it.

 

[heapsreal]

michelle, have u found a difference between acyclovir and valtreex?? Apparently valtrex is suppose to give higher blood levels of acyclovir then acyclovir itself?
Again this shows how different we respond to meds, i improved well on famvir but changed over to valtrex and went back wards in symptoms and labs.
I think because the effects of antivirals are slow we sometimes dont realise how much they are helping until we stop using them.
Have u searched online for cheaper sources of acyclovir?

cheers!!

 

[jeffrez]

michelle, have u found a difference between acyclovir and valtreex?? Apparently valtrex is suppose to give higher blood levels of acyclovir then acyclovir itself?
Again this shows how different we respond to meds, i improved well on famvir but changed over to valtrex and went back wards in symptoms and labs.
I think because the effects of antivirals are slow we sometimes dont realise how much they are helping until we stop using them.
Have u searched online for cheaper sources of acyclovir?

cheers!!

Heaps, were you taking doses of valtrex equivalent to the amount of acyclovir Michelle takes? Seems like the higher dosage with acyclovir is the key.

 

[heapsreal]

Heaps, were you taking doses of valtrex equivalent to the amount of acyclovir Michelle takes? Seems like the higher dosage with acyclovir is the key.

I was taking famvir 250mg twice a day and after 12 months was a 9 out of 10. Changed to valtrex as it was cheaper. I think it was 1000mg twice a day. I relapsed back to pre famvir state. I did improve again once back on famvir but only a 6 not a 9 like before.

Different antivirals and doses seem to be different for everyone? ? Again its a trial and error thing.

 

[Little Bluestem]

I wonder if the Acyclovir would have worked as well if you hadn’t knocked the HHV6 back with the Famvir first. (Just speculating, not suggesting.)

 

[heapsreal]

I wonder if a combo of famvir and valtrex/acyclovir would be more effective than either alone. I did valtrex/famvir together for a couple of months I think it helped but not long enough to really know? ??

 

[maryb]

m1she11e
thanks so much for posting about your experiences - it helps others especially those who don't have good doctors to support them through decisions to take a/virals.

 

[m1she11e]

Thanks, that's actually encouraging. I just found out today they called in the Famvir, so it looks like I'm going with that. If it doesn't seem to work, switching to Acyclovir sounds like a better option than Valcyte, so thanks for making this thread, really appreciate it.

Well, as you have said, many have gotten huge improvement with Famvir. I think 500mg, 3 times a a day is optimal although heaps seemed to have improvement on a lesser dose.

Keep us posted on how you are doing!!!

 

[m1she11e]

michelle, have u found a difference between acyclovir and valtreex?? Apparently valtrex is suppose to give higher blood levels of acyclovir then acyclovir itself?
Again this shows how different we respond to meds, i improved well on famvir but changed over to valtrex and went back wards in symptoms and labs.
I think because the effects of antivirals are slow we sometimes dont realise how much they are helping until we stop using them.
Have u searched online for cheaper sources of acyclovir?

cheers!!

I only have a few weeks supply a Valtrex one time and I cant say I noticed anything one way or another. That wasnt long enough to even tell. I need to talk to my Doc more about this Acyclovir thing. I really doubted in would do anything at all. He was very insistent that he was getting better results with it than he was with the Famvir and even the Valcyte. Ive mentioned this before but this is a Doc who would try to get me to switch from Famvir to Valcyte every time I went into his office.

I do agree that perhaps because I didnt go through the traditional "herx.die off" (that doesnt really even make sense with anti virals...) and then suddenly pull out of it to feel better kinda thing like most people do, and how gradual I started feeling better, that I didnt give the anti virals the credit they were due.

Actually, the cheapest I could get the Acyclovir was 85.00 a month. I know that is nothing compared to some of the other anti virals. This illness just renders most of us so damned poor that 85.00 a month is a challenge!!

 

[m1she11e]

I wonder if the Acyclovir would have worked as well if you hadn’t knocked the HHV6 back with the Famvir first. (Just speculating, not suggesting.)

You know, with these virus' and this crazy illness speculating is all we got! You could absolutely be right!

 

[m1she11e]

There are a few things I would like to mention for what they are worth...

I felt way better before I ever went on an anti viral. It seemed once I started them I seemed to get far worse when I stopped them. I have never returned to my before anti viral state. I cannot figure out why this is but I know I am not the only one to experience this.

I have wondered if as the virus gets knocked back the immune system comes out and starts working on other things? Then when you stop the anti viral the immune system gets totally overwhelmed again. Ive heard of many getting way better, stopping or changing anti virals and declining. Even after going back to the original anti viral that helped so much, they never seem to get back to the level of health they once achieved. Very confusing! Im not sure we even know all of the levels these anti virals work on???

I am still very sick. Its been around a week since I got the Acyclovir again and as Ive said, Ive felt some symptoms lift. I am still very deeply exhausted, numbness in my body has returned and my bones hurt. There is not spark in me at all. Havent had it this bad in a long time and it really SUCKS!! Didnt realize just how good I was actually feeling. SIGH...... C'mon Acyclovir...(and my poor confused immune system) kick in again!!!

 

[Jarod]

Hi m1she11e


Were you ever tested to figure out the specific viruses you may be treating with Acyclovir? Stomach, liver, brain, etc any guesses what organs may be giving you trouble?

thanks,
Jarod

 

[m1she11e]

Yes, I have had blood work done many times in the last 5 years or so. I have had very high HHV6 as my main issue. I also have CMV and EBV that are out of normal range but nearly as high as the HHV6. Im not sure where those number are now as I dont have health insurance to run those tests currently.

As far as organs I am not sure which have been affected. I do have a great deal of CNS issues so most likely brain and nervous system. None of my other organs show any signs of being in distress according to regular blood work.

 

[jimells]

I'm completely new to the whole viral 'scene' - Acyclovir and Valtrex are different forms of the same drug? They work on the same viruses? There sure is a difference in price. I took my first dose of Valtrex tonight and the 'usual and customary' price for one month supply is $850 !!!! I could never even consider such a drug without insurance.

After 10 years of being sick, I *finally* have a doctor who tested for just about everything in the book and found HHV6 and mycoplasma pneumo somethingorother. I'm supposed to take the Valtrex 1000 mg twice a day - I wonder how that compares to 1600 mg Acyclovir x2 after it gets in the blood?

heapsreal did you suffer many adverse effects from the Valtrex?

 

[heapsreal]

e="jimells, post: 364829, member: 4373"]I'm completely new to the whole viral 'scene' - Acyclovir and Valtrex are different forms of the same drug? They work on the same viruses? There sure is a difference in price. I took my first dose of Valtrex tonight and the 'usual and customary' price for one month supply is $850 !!!! I could never even consider such a drug without insurance.

After 10 years of being sick, I *finally* have a doctor who tested for just about everything in the book and found HHV6 and mycoplasma pneumo somethingorother. I'm supposed to take the Valtrex 1000 mg twice a day - I wonder how that compares to 1600 mg Acyclovir x2 after it gets in the blood?

heapsreal did you suffer many adverse effects from the Valtrex?[/quote]


Valtrex didnt work for me as its supposedly only good for ebv only. I also had cmv and famvir seemed to help. But valtrex is worth trying