Please Tell Me Your Valtrex + Valcyte Story

[AliceZ]

My daughter and I are taking both Valcyte and Valtrex for EBV, CMV and HHV6. We have been taking the full dose of both (Valtrex every 6 hours, Valcyte 3 tabs a day) for about 9 weeks now and still have not bottomed out with the increasing symptoms. I know Dr. Lerner's "Subset-directed antiviral treatment......" paper earlier this year described 2-10 weeks of worsening symptoms, and I see now I was naive in expecting to be back at baseline (the place I started) by the end of the 10 weeks, as I'll be lucky to have finished bottoming out by then. I know I need to be more patient than I am, but it would be helpful for me to hear the experiences of others who are or have been on both Valtrex and Valcyte at the same time, both good and bad experiences.

How long were you taking the full dose of both before you bottomed out? How long before you got back up to baseline? How long before you actually showed improvement? Did anybody have to deal with a co-infection as well (my daughter tested positive for phagocytophilia, too)?

Thanks.
Alice

 

[KC22]

Hi Alice,

I take both valcyte and valtrex. In the beginning, I didn't think it was so bad and then it hit and hard. I honestly felt bad for about 5 months. I remember one day where I thought I had improved and then slowly went back and passed my baseline. I don't think everyone takes that long.

I do have a co-infection of mycoplasma pneumonia, so I'm taking doxycycline, too.

Hang in there. I am not sorry I did this treatment. I can't say I am cured, but improved. As you know, CFS waxes and wanes. If I do something one day, then I have to rest for 3-5 days, but before that I could do nothing and felt sick all of the time. I am being treated for EBV, CMV and HHV6, too.

Good Luck!!

 

[nventor]

Alice,
I'm also taking Valcyte (three weeks 1800mg daily) an Famvir (twice daily). I ramped up slowly with Valcyte starting with one a day for a week, two a day for a week, and so on till I'm taking four a day for three weeks. I'm positive for Lyme, EBV, CMV HHV-6, all active infections but titer's decreasing.

I have not had a terrible time with the meds but my PCP and I are kind of in the dark as to how long to continue the Valcyte. I've had zero luck with ID's, so he is willing to try and work with me. How long is your doctor suggesting you and your daughter continue on the Valcyte? I'm also taking Immunivor,
seems to be pretty tolerable and a lot of the specialists are prescribing it for all the above infections.

Regards,
Roger

 

[heapsreal]

We should all know that antivirals dont kill the viruses, but stop them from replicating and lowers viral load and we feel better etc. One thing i havent been able to find is, how long does one infected viral cell last before it 'dies of old age' so to speak, if we can find the answer to this then we would have an idea of how long to be on av's for. I suppose ebv, cmv, hhv6 all have different life cycels as well. I think lerner has mentioned 3 years to be on valtrex for ebv, so would that mean that ebv last that long or are there other variables etc mmaybe viruses can go dormant and last forever. Anyone got any answers??

cheers!!!

 

[AliceZ]

KC22:
wow......5 months.....wow...but you did improve eventually so it was definitely worth it. Thanks.

nventor:
We plan to go on the valtrex and valcyte for a year and do a major re-evalution at that point in time, as long as the monthly blood and urine tests continue to show normal liver, kidney and blood results. We haven't yet checked to see if our titers are going down. If they're going down that could really help inspire me to continue the course. I'm so tired right now that arranging the additional blood draw may be beyond me right now, tho. We are beginners on the medical path to CFS recovery, as I spent many years trying the nutritional approach and not realizing that we had CFS, so I don't know anything about Immunovir, but plan to look it up. I just happened to see WPI's post on Dr. Lerner's study on Facebook or I might not have even been aware of this treatment. I am grateful to have a doctor who is willing to work with me on this approach.

heapsreal: I dunno, but am starting to feel that maybe lots of my infection is in cells that take longer to die off.

 

[nventor]

Heaps,
My understanding is that you need to get the viral load low enough that your immune system can keep it in latency. For me, my EBV has already returned to that state and I will find out Tues. or Wed. about HHV-6 and CMV. Lyme also is showing only one band positive. And as far as the question as to how long to take Valcyte or other AVR's, I read prescribing recommendations that are all over the map
and I'm always curious as to how long different docs are keeping their patients on it.

 

[maryb]

nventor how long did you have to take the meds to get your EBV into a latent state? I have both EBV and CMV not HHV-6 though.

 

[nventor]

Maryb,
About two months on Famvir and Immunivor altogether and I also did about a week on Valcyte before clearing. The treatment is is very confusing at best, all the ID docs I saw (3) said it would clear on its own but I wanted to do something more aggressive. My family doc put me on the Famvir and I brought the Immunivor in and decided to add that also. The confusion comes in the wide range of treatment opinions you read here and elsewhere, some doctors recommending 1-3 years on AVR's.

The virus giving me the most problem seems to be the CMV, for that I'm doing three weeks of Valcyte 1800mg. plus still taking all the other junk also. We will look at the blood test results next week and I may think about staying on 900mg. Valcyte for a while.

Best,
Roger

 

[maryb]

Roger not as long as I thought then. I did try Valtrex but it didn't agree with me, have been following people's experiences on Valcyte and Famvir so may be an option. Thanks

 

[Daffodil]

i took valcyte and valtrex (4 g!) for 3 yrs. it seemed to help a little after a few months, but then stopped doing much. i didnt really have much evidence of active herpes virus infections, though. i'm hoping XMRV is it for me.

 

[maryb]

Daffodil were you tested for evidence of viral infections before and after taking both AVs?

 

[nventor]

Maryb,
I also tried Valtrex and absolutely hated it, made me feel awful, and the Valcyte and Famvir seem more tolerable. I did have a 4-5 day period when increasing the Valcyte of severe eye redness each time, CMV?

best
roger

 

[AliceZ]

nventor-
I've read Dr. Lerner's articles several times but my memory comes and goes. It seems like he says something about the titers dropping as well as moving beyond a CFS diagnosis on his scale before stopping the medication. I think he may be pretty specific in one of the articles. It could have been in the first (May) article this year or the second one (Sept?) which is more focused on EBV, I can't remember. I'm going to make a special note to pay more attention to what he says regarding that the next time I read the articles. Right now, I am so bad off that discussing when I may be able to go off the meds may be irrelevant to my specific case.
What level of functioning would you say you were on when you started the treatment? Are you still at about that level? My functioning didn't drop steeply until I got to my current dose of both medicines; I had been taking Valtrex only for about 3 weeks before starting the Valcyte and my symptoms didn't worsten when I was only on the Valtrex. I increased my Valcyte much quicker than you did, 3 days with one pill (450mg), then 3 days with 2, then up to the 3. I would like to hear whether your symptoms stay the same, improve, or worsten on a regular basis if you're up to it. It seems like you're on a similar road to mine, but have been a few weeks less on the Valcyte, am I right?

 

[AliceZ]

Daffodil-
I don't have any evidence of active herpes infections, just the high titers for EBV, CMV and HHV6. Did your titers change at all during the 3 (!) year treatment? Did you have any co-infections? I am also getting checked for XMRV, but don't know the results yet.

 

[citybug]

I took valcyte for a few weeks a few years ago. My red blood cells dropped and the doctor said to stop taking it. Did that happen to anyone else? At that time I thought it was something serious, but maybe it happens and other people stay on it? My titers weren't very high.

 

[nventor]

Alice,
As to how sick I was, somewhere around 6 or 7 months ago like alot of people here, I became suddenly ill. It seemed like a terrible case of the flu, then ratcheted downward from there. Four months ago I was taking three naps a day, spending 8-10 hrs a night in bed and could barely keep my head up during the day. The Famvir and Immunivor I credit for pulling me out of the abyss, a little dramatic, but I honestly thought I was dying. It took maybe two months to really start feeling better, during this time as I've said before I started with a round of Valtrex (one week) before Famvir, the Valtrex positively did not agree with me. I felt like it about did me in, so I switched to Famvir and started feeling better within a couple of weeks. I also take antibiotics (Lyme) and Trans Factor 200.

I would like to say here without being critical of anyones treatment approach, that after talking with very several renowned I.D.s that it is possible that some of the extreme dosages and extended use of Valcyte may be questionable.

What part of your feeling poorly may be from the medicine your taking? I think I would give serious thought to cutting way back and see how you feel. It's a tough one, and I don't think anyone has the answers, or, better framed, every treatment varies between people, seemingly with diverse outcomes. Me, I have job one, be pro-active, if it doesn't seem to work, switch gears and try something else and hopefully you have a doctor that is game.

I'm now probably an 8 1/2 to a 9 on the wellness scale, able to exercise some, work 12 hour days, the question is am I cruising for a set back? maybe, I hope not as I had zero quality of life before. I have been on Valcyte for a little less time than you and I'm going to 900mg. on Wednesday, which I'm grateful for because I can tell that its taking its toll on me, but I just couldn't get the CMV down, henceforth the Valcyte.

Also, be sure to stay on top of your blood work, most recommend weekly CBC's, my doc does it
about every three weeks, Valcyte is definitely heavy duty stuff. A lot of docs that were prescribing
mega doses have cut way back, I've had two I.D.'s refuse to write it, be careful.

Best,
Roger

 

[SOC]

My first ME/CFS doc eventually gave me Valtrex. I was on it for ~7 months (Aug 09 - Jan 10). I didn't get any better, but had H1N1 and mild pneumonia during that period, so it may not have been a fair trial.

In Feb, Dr Lerner took me off Valtrex because I didn't have an active EBV infection. He put me on 1450 mg Valcyte (I do have an active HHV-6 infection).
My approximate Valcyte timeline:
Months 1-3: slight improvement
Months 4-6: rotten period -- more fatigue, rashes, etc. Unpleasant, but not unbearable
Months 7-9: significant steady improvement
This is much faster than anyone expected since I was pretty sick (out of bed or recliner 1-2 hrs daily) when I started. I expect to be on Valcyte for a couple of years at least.

My daughter has had more of a slow but steady improvement over the same period. She never had the bad patch a lot of people do with Valcyte. She was not as sick as I was. She started about where I am now. We expect her to be on Valcyte 12-18 months.

We've both had the same amount of improvement -- 2 levels on Dr Lerner's scale.

PS Have you tried a targetted transfer factor such as ProHealth's Transfer Factor 100 or 200? It seems like it's being a helpful adjunct to the antivirals for us.

 

[AliceZ]

Alice,
As to how sick I was, somewhere around 6 or 7 months ago like alot of people here, I became suddenly ill. It seemed like a terrible case of the flu, then ratcheted downward from there. Four months ago I was taking three naps a day, spending 8-10 hrs a night in bed and could barely keep my head up during the day. The Famvir and Immunivor I credit for pulling me out of the abyss, a little dramatic, but I honestly thought I was dying. It took maybe two months to really start feeling better, during this time as I've said before I started with a round of Valtrex (one week) before Famvir, the Valtrex positively did not agree with me. I felt like it about did me in, so I switched to Famvir and started feeling better within a couple of weeks. I also take antibiotics (Lyme) and Trans Factor 200.

I would like to say here without being critical of anyones treatment approach, that after talking with very several renowned I.D.s that it is possible that some of the extreme dosages and extended use of Valcyte may be questionable.

What part of your feeling poorly may be from the medicine your taking? I think I would give serious thought to cutting way back and see how you feel. It's a tough one, and I don't think anyone has the answers, or, better framed, every treatment varies between people, seemingly with diverse outcomes. Me, I have job one, be pro-active, if it doesn't seem to work, switch gears and try something else and hopefully you have a doctor that is game.

I'm now probably an 8 1/2 to a 9 on the wellness scale, able to exercise some, work 12 hour days, the question is am I cruising for a set back? maybe, I hope not as I had zero quality of life before. I have been on Valcyte for a little less time than you and I'm going to 900mg. on Wednesday, which I'm grateful for because I can tell that its taking its toll on me, but I just couldn't get the CMV down, henceforth the Valcyte.

Also, be sure to stay on top of your blood work, most recommend weekly CBC's, my doc does it
about every three weeks, Valcyte is definitely heavy duty stuff. A lot of docs that were prescribing
mega doses have cut way back, I've had two I.D.'s refuse to write it, be careful.

Best,
Roger

Nventor-
So you were on the Valtrex and then Famvir for a few months before starting Valcyte, and you have not felt significantly worse from the medication use, and have made rapid (relatively) improvement. I would like to hear if you can maintain your improvement after your reduce your Valcyte dosage.

My doctor is very open to my suggestions and I'm pretty sure would be fine with me dropping the Valcyte dosage. It's one of the possibilities I have considered. I don't think I could leave the house to have my blood drawn more than once a month at my current stage, as I am basically housebound, and leaving the house to do anything is a major undertaking. But, I do take the blood and urine tests once a month, for the liver and kidney function and CBC.

It is so nice that you have been able to quickly find out what was wrong with you and to get treatment for it. I suspect that folks who catch it suddenly like you and then act quickly have the best outcomes. My CFS came on slowly over many, many years, and I think it kind of snuck up on me while I was having a career and raising a family. I had been sick many years before it was aware that I had something more serious than chronic insomnia, and before it became serious enough for me to stop working outside of the home.

 

[AliceZ]

My first ME/CFS doc eventually gave me Valtrex. I was on it for ~7 months (Aug 09 - Jan 10). I didn't get any better, but had H1N1 and mild pneumonia during that period, so it may not have been a fair trial.

In Feb, Dr Lerner took me off Valtrex because I didn't have an active EBV infection. He put me on 1450 mg Valcyte (I do have an active HHV-6 infection).
My approximate Valcyte timeline:
Months 1-3: slight improvement
Months 4-6: rotten period -- more fatigue, rashes, etc. Unpleasant, but not unbearable
Months 7-9: significant steady improvement
This is much faster than anyone expected since I was pretty sick (out of bed or recliner 1-2 hrs daily) when I started. I expect to be on Valcyte for a couple of years at least.

My daughter has had more of a slow but steady improvement over the same period. She never had the bad patch a lot of people do with Valcyte. She was not as sick as I was. She started about where I am now. We expect her to be on Valcyte 12-18 months.

We've both had the same amount of improvement -- 2 levels on Dr Lerner's scale.

PS Have you tried a targetted transfer factor such as ProHealth's Transfer Factor 100 or 200? It seems like it's being a helpful adjunct to the antivirals for us.

Sickofcfs-
I just got off of your thread asking you questions, probably the same ones you just answered on this one....I can be a little spacey.

So your "rotten period" was unpleasant, but not unbearable. It did last approximately 3 months, tho. Did you stick with the 3 Valcyte pills the entire time, even when you were feeling poorly, or did you temporarily lower the dosage at all?

I did try a couple of nutritional antivirals before going on these medications, and continued to take them until the past couple of weeks. They were expensive, and I didn't see any difference with them. I'll see if they were similar to the ProHealth stuff or not. I doubt I could get my daughter to take any more pills than the ones she takes right now anyway, but I'd be willing to try it.

 

[nventor]

Alice,

My whole story like yours, starts way back probably fifteen years with a classic Lyme/misdiagnosed case. Extreme Arrhythmia, extreme joint pain, eye problems, but Lyme was just coming to Virginia and mostly overlooked. It was only found by my family physician 18 months ago after a million visits to different specialists, they quit looking for it years ago, and yes I could have been re-infected, but that is doubtful.

I have pretty much been involved with a University hospital or other docs throughout this period, when I finally and completly bottomed last time, my family doctor and an Internal Medicine doc at Hopkins sent me to the Sydney Kimmel cancer clinic, they both thought I had Leukemia my blood work was so bad.

Oncology and Hematology determined that all the re-activated virus's were the cause, and the fiasco that followed by specialists equaled too or exceeded the last many years of mismanagement. Short of the long, my family doc was ready to do whatever it took to bring me back, so we worked together to do what we could to aggressively treat the infections.

My concern with Valcyte is a known carcinogen in mammals and can really tank your blood work, so I will reduce to 900mg. on Wed. and I will keep you posted as to how I'm feeling, I think I'll feel better
on a lower dose.

Regards,

Roger