High dose Acyclovir

[SOC]

jimells, Valtrex is quite safe (as antivirals go) and has a relatively low side effect profile. It has been used as a long-term prophylactic medication for genital herpes for 10 years or more, so there's a lot of experience with long-term Valtrex use without serious side effects. This is why some docs are willing to prescribe it for chronic HHV-6 even though it's not particularly effective for that.

Valcyte is much more effective for chronic HHV-6, but has much more serious potential side effects so the patient needs to be carefully monitored. Many docs are afraid to use it for that reason. And it's absurdly expensive...... speaking of absurdly expensive, are you sure you aren't taking Valcyte? Valtrex is not ordinarily that expensive, I think. Relatively speaking, of course. Antivirals aren't cheap in any case.

Daughter and I have been taking Valtrex at a high dose for a couple of years now to keep HHV-6 and EBV suppressed once we got them back into latency with Valcyte. Neither of us has had any side effects from Valtrex.

 

[heapsreal]

Important point is that if valtrex or famvir dont lower cmv and hhv6 effectively but seem more effective at keeping these viruses down once something like valcyte lowers the dam virus, supposedly? ? But they have helped many famvir/valtrex? ?

 

[SOC]

Important point is that if valtrex or famvir dont lower cmv and hhv6 effectively but seem more effective at keeping these viruses down once something like valcyte lowers the dam virus, supposedly? ? But they have helped many famvir/valtrex? ?

Dr Lerner was talking well above my knowledge level on this topic, but I think it has something to do with the stage or position where the antiviral cleaves (or obstructs?) the virus during replication...? So while Valtrex works well on active HSV and EBV infections, it's not so good for active HHV-6 or CMV. However, it is helpful to keep all latent herpes viruses from reactivating. Or so I understood it. I could have it entirely wrong.

I don't know where Famvir fits into this picture.

 

[Ema]

jimells, Neither of us has had any side effects from Valtrex.

My liver enzymes have recently started climbing up again...I was wondering if it was the Valtrex possibly. They aren't awful but is this something you've ever seen with Valtrex in your experience, SOC?

Valtrex is ridiculously expensive and Valcyte is absurdly expensive. I think the 30 day supply of generic Valtrex at 1g 4x/day was around $1000 at CVS without insurance. The generic Valcyte was around $5000 if I remember correctly for a 30 day supply of 900 mg/day. Either way is unaffordable without insurance for most unfortunately.

Ema

 

[SOC]

My liver enzymes have recently started climbing up again...I was wondering if it was the Valtrex possibly. They aren't awful but is this something you've ever seen with Valtrex in your experience, SOC?

Valtrex is ridiculously expensive and Valcyte is absurdly expensive. I think the 30 day supply of generic Valtrex at 1g 4x/day was around $1000 at CVS without insurance. The generic Valcyte was around $5000 if I remember correctly for a 30 day supply of 900 mg/day. Either way is unaffordable without insurance for most unfortunately.

Ema

We haven't experienced an increase in liver enzymes with Valtrex, but I wouldn't be surprised. It's processed by the liver (as are many meds) so the extra burden could cause some problems. We did get mild increases in liver enzymes with Valcyte, but they went back to normal after we were done with Valcyte treatment.

We do take some supplements to support the liver, so that might be why we haven't had much problem. When we were taking Valcyte, we also took milk thistle. Now we take this product, which has milk thistle, but less than we were taking with Valcyte.

Valtrex is ridiculously expensive and Valcyte is absurdly expensive.

(Better to laugh than cry) So true! I think I'm blocking out how horrendously expensive Valcyte and Valtrex treatment for 2 people has been, even with insurance. Maybe I should get some CBT for my false economic beliefs.

 

[heapsreal]

My liver enzymes have recently started climbing up again...I was wondering if it was the Valtrex possibly. They aren't awful but is this something you've ever seen with Valtrex in your experience, SOC?

Valtrex is ridiculously expensive and Valcyte is absurdly expensive. I think the 30 day supply of generic Valtrex at 1g 4x/day was around $1000 at CVS without insurance. The generic Valcyte was around $5000 if I remember correctly for a 30 day supply of 900 mg/day. Either way is unaffordable without insurance for most unfortunately.

Ema

Do u take things to support your liver, probably a silly questions as u probably take fist fulls of supps like the rest of us?? the price of antivirals is why i started buying them online. for me the cost of famvir was $200 a month at the dose i was taking , online it was costing $75. ALso famvir was cheaper then valtrex.

 

[heapsreal]

Dr Lerner was talking well above my knowledge level on this topic, but I think it has something to do with the stage or position where the antiviral cleaves (or obstructs?) the virus during replication...? So while Valtrex works well on active HSV and EBV infections, it's not so good for active HHV-6 or CMV. However, it is helpful to keep all latent herpes viruses from reactivating. Or so I understood it. I could have it entirely wrong.

I don't know where Famvir fits into this picture.

yes, thats basically what i have found researching this stuff. valtrex and famvir are used to prevent cmv infections in organ transplant patients where it seems that active infections are treated with valcyte or other antivirals more specific to the virus.
Famvir is something that i think needs to be looked into further as its possibly effective against these viruses when active, maybe not as strong as valcyte. Its all chinese whispers but its said that famvir was only marketed for hsv and shingles and wasnt pushed to be marketed for other viruses as they didnt think there was a need for it?? There is research saying it works in lowering viral load in hepatitis, so maybe has a broader range of action then we know off?? I think it probably falls between valtrex and valcyte and is a more affordable alternative to valcyte??

 

[Ema]

Do u take things to support your liver, probably a silly questions as u probably take fist fulls of supps like the rest of us?? the price of antivirals is why i started buying them online. for me the cost of famvir was $200 a month at the dose i was taking , online it was costing $75. ALso famvir was cheaper then valtrex.

My liver is so supported that the only other thing I can think of would be to buy it a bra.

Ema

 

[heapsreal]

My liver is so supported that the only other thing I can think of would be to buy it a bra.

Ema

lol

 

[SOC]

My liver is so supported that the only other thing I can think of would be to buy it a bra.

Ema

Not sure I wanted that image right before bed -- some crazy dreams in my future.

 

[jimells]

Valcyte is much more effective for chronic HHV-6, but has much more serious potential side effects so the patient needs to be carefully monitored. Many docs are afraid to use it for that reason.

Thanks for the explanation. I wondered why the HHV6 Foundation website didn't list Valtrex. I haven't seen anything about possible liver damage, but I was warned to drink lots of water to protect my kidneys. I've been drinking 2 liters a day for years to help with the POTS - I guess that should be enough.

 

[SOC]

Thanks for the explanation. I wondered why the HHV6 Foundation website didn't list Valtrex. I haven't seen anything about possible liver damage, but I was warned to drink lots of water to protect my kidneys. I've been drinking 2 liters a day for years to help with the POTS - I guess that should be enough.

Oops! Valcyte/Valtrex darned names are so confusing. I think the liver issue is for Valcyte. With Valtrex, you need to drink lots of water (as you are doing) to prevent kidney stones.

 

[heapsreal]

i have read that dr lerner will use famvir if one is prone to kidney stones as it doesnt have that side effect.

 

[WillowJ]

Valtrex is ridiculously expensive and Valcyte is absurdly expensive. I think the 30 day supply of generic Valtrex at 1g 4x/day was around $1000 at CVS without insurance. The generic Valcyte was around $5000 if I remember correctly for a 30 day supply of 900 mg/day. Either way is unaffordable without insurance for most unfortunately.

Ema

ouch. depending on your insurance, could be unaffordable even with insurance.

 

[1WearyChick]

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....

m1she11e

Is Dantini your current doctor?

He was one of mine several years ago.

 

[morinos]

May be you want to try russian antivir - "panavir". Not sure if its selling somewhere outside Russia, but may be u can find shipping. Its probably number 1 popular antivir(mostly anti herpes) in Russia. It was tested good for CMV, EBV. But i didint find information about HHV-6.
I didnt not use it for myself, because my PCR for CMV and HHV 6 is negative. Anti EBV NA IgG 129. So my doc said i dont need antivir.
If u will try to use it - u need only 5 injections. Other forms - not for us. It cost around 130$ for 5 injections in Russia.

 

[maryb]

Don't think its available outside of russia, is it true you have to be invited to russia in order to get a visa? Just curious not thinking of travelling..........

 

[m1she11e]

m1she11e

Is Dantini your current doctor?

He was one of mine several years ago.

No, I only had one phone consultation with him and he was the first to prefer Famvir to Valcyte.

 

[anniekim]

Have been on 4 x800 mg acyclovir for four months now. Sadly no benefit as of yet, still bedridden

 

[energyoverload]

Mishelle,

How are you doing at the moment on the high dose Aciclovir and more positive changes to report?

Thanks