Switching from Famvir to Valcyte.

[m1she11e]

Ema,
I know the "over thinking" place you are in and it is awful!! I do agree that you have to collect your information and make the best decision you can what is in front of you a the time. Then just go for it!!

Also, do you think your insurance would approve the Famvir dose and add in some Acyclovir? My doctor was crazy for Valcyte. He insisted it was the only anti viral that would get deep enough to really impact these virus' and cross the blood brain barrier. He tried to talk me into starting it again at every visit. He acted like with my huge load of HHV6 that my Famvir almost useless. My HHV6 dropped from the highest he had ever seen (and he has treated over 500 people with Valcyte and these virus') to almost in the normal range. SO, it is not true that the other anti virals dont help with the more serious cases of HHV6 and such.

Now, in the last few years and after some on going contact with Montoya and treating some others with Famvir, my doctor began only using Famvir. He doesnt use Valcyte at all anymore. He was a hard core Valcyte doc too!! Now, because of insurance issues, he has gone to the Acyclovir at 1,600 mg with food twice a day. I think they are finding this with food thing important to help the anti virals work better in some way. I always thought Acyclovir was useless but for my doctor, who put every chronically ill person with any sign of these virus' on Valcyte, to switch and feel so confident with getting the same results is HUGE.

I personally would start with the Famvir dose your insurance will approve for awhile, test in about 6 months and decide what to do from there. I have to say I got a head ache and sore throat when I started this big dose of Acycolovir. It didnt make feel like I was dying like Valcyte. Famvir at 500 mgm 3x a day gave me no symptoms at all. Acyclovir is the only thing that gave me "acceptable" symptoms that made me feel it might be doing something but wasnt killing me off slowly. Maybe it does have value in this whole bug killing thing. It is cheap too so insurance has no problem covering it. Blood tests will show if you are making progres.

Whatever you decide to do...BEST OF LUCK!!!!!

 

[Ema]

If you don't have a chronic HHV-6 or CMV infection, I wouldn't mess with Valcyte. It's a serious medication with serious potential side effects. OTOH, if you do have one of those infections, it's the only known treatment, so worth trying.

I have high IgG levels to HHV-6, CMV, EBV, and ParvoB19.

HHV-6 IgG 9.3 Positive greater than 0.99
CMV IgG 8.1 Positive greater than 1
Parvo IgG 3.3 Positive greater than 1.1
EBV EA, IgG,1.0 H, Positive
EBV Ab VCA, IgG, >8 H, Positive
EBV NA, IgG, >8 H, Positive

This was in September after being on Famvir for about 6 months.

I was thinking about retesting but wonder if they really would have changed much more in the last 3 months. It's several hundred dollars of testing.

I forgot to say that I am also using Nexavir as an immune modulator and antiviral. And in other news, it looks like my Hizentra (I hardly dare to even think it until the needles are in my body) may finally be approved this month after a year of trying. I'm not sure that my body could handle Hizentra start up AND Valcyte at the same time. So that adds a brand new wrinkle that I had not expected. I had basically talked myself into starting the Valcyte...

The problem is that I am feeling much better lately! I have gone from totally bedbound for 3 years to up and around for several hours a day. I even went Christmas shopping on Sat and had a massage! Totally inconceivable before and I know you all can relate to fear of backsliding even a little bit after being sick for a long period. Normally I don't have this kind of trouble making decisions but this time it feels like I have a lot more to lose.

Ema

 

[Ema]

Ema,


Also, do you think your insurance would approve the Famvir dose and add in some Acyclovir? My doctor was crazy for Valcyte. He insisted it was the only anti viral that would get deep enough to really impact these virus' and cross the blood brain barrier. He tried to talk me into starting it again at every visit. He acted like with my huge load of HHV6 that my Famvir almost useless. My HHV6 dropped from the highest he had ever seen (and he has treated over 500 people with Valcyte and these virus') to almost in the normal range. SO, it is not true that the other anti virals dont help with the more serious cases of HHV6 and such.

Now, in the last few years and after some on going contact with Montoya and treating some others with Famvir, my doctor began only using Famvir. He doesnt use Valcyte at all anymore. He was a hard core Valcyte doc too!! Now, because of insurance issues, he has gone to the Acyclovir at 1,600 mg with food twice a day. I think they are finding this with food thing important to help the anti virals work better in some way. I always thought Acyclovir was useless but for my doctor, who put every chronically ill person with any sign of these virus' on Valcyte, to switch and feel so confident with getting the same results is HUGE.

Thanks for this - it's very helpful.

I had not considered acyclovir as I had the same preconceptions about it not being effective for EBV which I always considered my main problem (not sure why though; only that I discovered it first!). That's a good thought though. I should also check the prices online since I think it is pretty cheap. Hmmm.

Why do you think the food is helpful? I've been taking the Famvir on an empty stomach. Wonder if I should switch that up?

Who is your doc (if you don't mind me asking)?

Ema

 

[Ema]

he has gone to the Acyclovir at 1,600 mg with food twice a day.

So is this a total of 1600 (800 twice a day) or 3200 (1600 twice a day)?

Did you ramp up to this dose or just start on it?

Are you taking only acyclovir now?

Thanks!
Ema

 

[m1she11e]

Thanks for this - it's very helpful.

I had not considered acyclovir as I had the same preconceptions about it not being effective for EBV which I always considered my main problem (not sure why though; only that I discovered it first!). That's a good thought though. I should also check the prices online since I think it is pretty cheap. Hmmm.

Why do you think the food is helpful? I've been taking the Famvir on an empty stomach. Wonder if I should switch that up?

Who is your doc (if you don't mind me asking)?

Ema

I dont know the answer to the food question. My doctor has only said it increases absorption.

 

[m1she11e]

So is this a total of 1600 (800 twice a day) or 3200 (1600 twice a day)?

Did you ramp up to this dose or just start on it?

Are you taking only acyclovir now?

Thanks!
Ema

I take 1,600 mg twice a day. (3,200). I did ramp up to this dose. It took me about 2 months. This is after over a year of Famvir 500 mg, 3x a day. The most I would feel was the head ache, sore throat and generally more fatigued. My symptoms are so cyclic that I cannot for sure say it was the Acyclovir. There did seem to be a pattern though. I ramped up slowly because of my awful reaction to Valcyte. I am working about 25 hours a week now and I didnt want to slip to far back.

I am interested in Nexavir. Do you think that is why you have improved?

 

[Ema]

I take 1,600 mg twice a day. (3,200).

I am interested in Nexavir. Do you think that is why you have improved?

I think the Nexavir has played a role. It was the first antiviral/immune modulator that I tried. Bizarre choice, right, considering that it is a little more difficult to get sometimes and can be pretty expensive!

When I started it a year ago, I had been on antibiotics for a little less than 3 months for Lyme disease. I was so shaky drawing it up and I had to inject it sitting down because standing up felt so awful. I was just thinking recently about how far that has come. My hands are so much steadier and the OI is vastly improved. Of course, a lot of that has to do with getting my adrenal insufficiency under control and adding Florinef as well. It's all so intertwined!

When my doctor saw my improvement on the antiviral, we decided to add in a stronger one to get at some of these other viruses. So I chose Famvir at that point. I had some mild start-up reactions to Famvir but nothing like the antibiotics. I had planned to stay on the Famvir until my labs came down (12-18 months maybe) but now with the insurance drama and the Hizentra looking like a real possibility, I'm not sure what to do anymore!

Long story short, the Nexavir was one of the first things that I did that actually did seem to have an effect. Whether or not the same effects would have been gotten from the other antivirals alone, I'm not sure. I think it's possible that the Nexavir has some beneficial effects on the liver that the other drugs do not. I'm planning to keep it up.

Ema

 

[anniekim]

Ema,
I know the "over thinking" place you are in and it is awful!! I do agree that you have to collect your information and make the best decision you can what is in front of you a the time. Then just go for it!!

Also, do you think your insurance would approve the Famvir dose and add in some Acyclovir? My doctor was crazy for Valcyte. He insisted it was the only anti viral that would get deep enough to really impact these virus' and cross the blood brain barrier. He tried to talk me into starting it again at every visit. He acted like with my huge load of HHV6 that my Famvir almost useless. My HHV6 dropped from the highest he had ever seen (and he has treated over 500 people with Valcyte and these virus') to almost in the normal range. SO, it is not true that the other anti virals dont help with the more serious cases of HHV6 and such.

Now, in the last few years and after some on going contact with Montoya and treating some others with Famvir, my doctor began only using Famvir. He doesnt use Valcyte at all anymore. He was a hard core Valcyte doc too!! Now, because of insurance issues, he has gone to the Acyclovir at 1,600 mg with food twice a day. I think they are finding this with food thing important to help the anti virals work better in some way. I always thought Acyclovir was useless but for my doctor, who put every chronically ill person with any sign of these virus' on Valcyte, to switch and feel so confident with getting the same results is HUGE.

I personally would start with the Famvir dose your insurance will approve for awhile, test in about 6 months and decide what to do from there. I have to say I got a head ache and sore throat when I started this big dose of Acycolovir. It didnt make feel like I was dying like Valcyte. Famvir at 500 mgm 3x a day gave me no symptoms at all. Acyclovir is the only thing that gave me "acceptable" symptoms that made me feel it might be doing something but wasnt killing me off slowly. Maybe it does have value in this whole bug killing thing. It is cheap too so insurance has no problem covering it. Blood tests will show if you are making progres.

Whatever you decide to do...BEST OF LUCK!!!!!

 

[anniekim]

Hi Michelle, is your doctor now prescribing acyclovir to all his patients instead of famvir due to insurance issues with all patients or just in your particular case? Does your doc still prefer famvir over acyclovir if the doc has a choice. Many thanks

 

[m1she11e]

Hi Michelle, is your doctor now prescribing acyclovir to all his patients instead of famvir due to insurance issues with all patients or just in your particular case? Does your doc still prefer famvir over acyclovir if the doc has a choice. Many thanks

My doctor gave me a long print out for new patents on the history of the viral treatments and the cell wall defecient bacterial treatments for Chronic Illness. I just read it over again to answer this question as I wasnt clear if he chose the high dose of Acylclovir for merely insurance reasons or did he now prefer it. The way it reads, he still felt Valcyte was superior for brain and nerve treatment originally. Famvir was his second choice. It looks like he started with 800 mg of Acyclovir twice a day purely for insurance reasons and got good results. In 12/11 he changed the dosing to 1,600 mg Acyclovir twice a day and it has been clinically as effective as Valcyte in over 30 patients. I will ask him at my next visit but what I am gathering is that he does prescribe Valcyte for MS where there is severe neuro issues if they can tolerate it. Famvir was what he had switched to in most cases but didnt feel it penetrated the brain and nervous system as well. I think that this high dose of Acyclovir is his new first choice in all cases.

I will say...although I am afraid to this early in. I believe I have been at this high dose of Acyclovir for 3 weeks now. I have been going through a very good spell for about a solid week. Now, I have to say I do go through good spells from time to time but this one seems to be REALLY good. Last Friday I went to work (I do facials in a salon. My room is upstairs away from the others and I usually reamain there, away from the others between clients.) I actually felt talkative and wanted to be social. I am social by nature but we all know how hard it is when you are exhausted and your cognitive function doesnt allow for easy conversation. I also deal with numbness on the right side of my face and pressure behind my right eye. It really makes eye contact difficult. Anyway, I had several breaks and I went downstairs and was able to laugh and joke with the others. Those words you want to use but cant remember were coming to me with ease like a normal person. I was animated and the pressure in my head and the side of my face and eye seemed almost gone. I truly wanted to skip.

After a full day, my boyfriend called and asked if there was any way I felt like going out for a co workers going away party. He knew I worked all day and was really thinking I would say no way. I actually felt like going. I got ready quickly and didnt look near death. I felt and looked almost healthy. It was not even a fun group and I had SO much fun. Days like that are amazing but they really make you realize how horrible you really do feel most of the time and how much your missing out on!!!!

I stayed out late and drank about 4 or 5 beers. Then I worked the next day til 8pm. I cant say I felt good but I would normally spend the whole next day in bed and maybe even the day after. This decent energy run has lasted a full week.

I cant say it is the Acyclovir at this point. There is a part of me getting a very slight bit of hope that it is though. Im seeing some other slight improvements as well. If this continues for an extended period I will be sure and report on that. Im also aware that those who improved even on Valcyte had highs and lows.

Heres to hope....

Michelle

 

[anniekim]

Thanks Michelle for your helpful reply. I'm delighted you've had a good week and really hope it will be sustained as it is the acycyolovir that is helping

 

[HTree]

Hi All, interesting thread. Just my 2 cents:
First, I tried Nexavir-- just a 1/4 test dose injection and had an AWEFUL neuro reaction 24 hrs later. I suppose the lesson is one never knows who will tolerate what. But it was one of those made-me-worse=maybe-permanently life points. Sigh. Greatly increased OI, and 7 months later I'm still not back to prior state--not sure if i will be.

After waiting a few months to semi recover from that, i decided to start Famvir-- Dr. R in Florida. Interesting though she has me on low dose, 250 mg/day. Is it true High doses are needed? Is there a peer-reviewed study to this affect? I'd appreciate anyone able to ask their ME/CFS docs what Famvir dose is necessary-- I have high EBV and HHV-6 IgGs.
Thanks all.
Htree

 

[Charles555nc]

I had a possiblely permanent MS like reaction to septra. (Limb weakness, nerve numbness). Sorry for your troubles HTree.

Valtrex, LDN, DHEA, and antibiotics for c. pneumoniae (implicated in MS and Rosacea), Akalizing diet, no sugar/aspartame/vaccines/fluoride in my drinking water, 5 grams vitamin c a day (as sodium ascorbate), lysine/proline/gylcine- amino acids, and Zinc all have helped me prevent future autoimmune reactions like I had.

 

[Eliza]

After reading all your postings and esp. the experiences of Michelle + after reading up on studies etc., I decided this morning together with my specialist (in Brussels) to give acyclovir a try first.
We'll start with 3 x 800mg acyclovir and combine it with Isoprinosine (= Imunovir).

My EBV, CMV IgG titers are skyhigh for years (x8, x11, ... times maximum value time and time again) +
recently via stomach biopsy and PCR on tissue I found out I am HHV6 postive too (viral load +6000 copies).

When I read up on everything it struck me that nobody who started immediately with valganciclovir could tollerate it.
Only the ones who started with acyclovir or famvir had a chance of tollerating valcyte.

Since Famvir is quite toxic too we'll start with acyclovir.

My hopes are aimed on CMX001 to be honest but that's still in trial-phase :-(

keep you posted about progress (or not).

Els

 

[Ema]

Since Famvir is quite toxic too we'll start with acyclovir.

Famvir is not particularly toxic. It's not like Valcyte anyways. But I think either acyclovir or Famvir is a good choice for a first line antiviral against the infections you mention.

Good luck with the antivirals! I think they have helped me a lot though it does take time to see progress.

Ema

 

[Eliza]

do any of you know how the CMX001 study trials are doing?
That's the one I'm most interested in ...
For now starting with acyclovir high dosage makes sense to me.
We'll see if I get any result and then change if necessary.
Getting rid of hhv6 is the main goal but for me clinical progress is what counts the most.

I wish you all the best of luck and especially better days on AV's!

Els

 

[RUkiddingME]

After reading all your postings and esp. the experiences of Michelle + after reading up on studies etc., I decided this morning together with my specialist (in Brussels) to give acyclovir a try first.
We'll start with 3 x 800mg acyclovir and combine it with Isoprinosine (= Imunovir).

My EBV, CMV IgG titers are skyhigh for years (x8, x11, ... times maximum value time and time again) +
recently via stomach biopsy and PCR on tissue I found out I am HHV6 postive too (viral load +6000 copies).

When I read up on everything it struck me that nobody who started immediately with valganciclovir could tollerate it.
Only the ones who started with acyclovir or famvir had a chance of tollerating valcyte.

Since Famvir is quite toxic too we'll start with acyclovir.

My hopes are aimed on CMX001 to be honest but that's still in trial-phase :-(

keep you posted about progress (or not).

Els

The best of luck to you and looking forward to follow your progress. I did very high dose of Famvir for 4 months then one month off before starting the Valcyte. Between all us guinea pigs on this site we'll get it right eventually lol

 

[heapsreal]

Famvir is not particularly toxic. It's not like Valcyte anyways. But I think either acyclovir or Famvir is a good choice for a first line antiviral against the infections you mention.

Good luck with the antivirals! I think they have helped me a lot though it does take time to see progress.

Ema

I have been on famvir for about 3 yrs now and valcuye the last 12 months. I havent had any issues with toxicity, all my liver/kidney function tests come back normal. I do think NAC has helped with this as its used in hospitals for drug overdoses to protect the liver, especially from paracetamol overdose.

 

[RUkiddingME]

I have been on famvir for about 3 yrs now and valcuye the last 12 months. I havent had any issues with toxicity, all my liver/kidney function tests come back normal. I do think NAC has helped with this as its used in hospitals for drug overdoses to protect the liver, especially from paracetamol overdose.

That's very helpful Heaps, thanks! wondering how much NAC you are taking and in what form, i.e multivitamin or by itself. After only one week on Valcyte I have an abnormally high Lipase level (could be pancreas or kidney). I want to protect my precious organs for as long as I can while getting a fair shot at this treatment. Thanks!

 

[heapsreal]

That's very helpful Heaps, thanks! wondering how much NAC you are taking and in what form, i.e multivitamin or by itself. After only one week on Valcyte I have an abnormally high Lipase level (could be pancreas or kidney). I want to protect my precious organs for as long as I can while getting a fair shot at this treatment. Thanks!

Just use NOW brand NAC 600mg twice a day, also think lipoic acid helps 300mg twice a day too