Valcyte (plus) Update

[SOC]

I'm almost afraid to say this aloud [checking over shoulder for evil ME goblins], but I'm actually feeling a lot better. I've waited 10 days or so to convince myself it's not just a fluke. I've Gone Out of the House 4 times in the past 10 days -- twice to lunch with a friend, twice to teach a 2-hr class at a camp -- and not only did I not crash, I didn't even have to super-rest before or after. Granted I was very careful to take all possibly precautions, but still.... I couldn't have done it 6 weeks ago.

I started Valcyte in February. Before that I was taking Valtrex,the Pall protocol supplements, and Transfer Factor Essentials (on and off). I quit the Valtrex immediately on the advice of my new doc, but stayed with the supplements, just because I'd been taking them for a couple of years and they had helped some. I had a noticeable, but not huge improvement during the first 8 weeks or so on Valcyte, which was pretty good, as sick as I was.

At about the same time (coincidence, I think), I quit the supplements and I started having what I'm told are fairly common reactions to Valcyte treatment --- basically an exacerbation of ME/CFS symptoms. I also got a persistent sore throat, swollen lymph nodes, and my face swelled up like I had mumps. Muscle aches that had been under control were back, fatigue increased, etc. It wasn't terrible, certainly not unbearable, but distinctly unpleasant and a definite setback. That lasted 10-12 weeks. I didn't want to add anything back during that time, at least partly because it felt like my immune system was running on HIGH already and I wasn't taking any chances of revving it up more.

When the "new" symptoms faded, I was back to about my pre-Valcyte condition, maybe a bit better. I decided to add back some of the supplements, at lower levels than before, to see if they would help.

Two weeks later I'm feeling at LOT better. I'm not saying I'm anywhere near healthy, but I'm still very carefully testing my limits and I haven't crashed. The fatigue/exhaustion is improved quite a bit, I can tolerate 5-6 hours of conversation with a friend (including going out to lunch), I rest in the afternoon, but I'm less likely to fall asleep during my rest or sleep as long if I do. It's just BETTER. A lot better.

My daughter got significantly better during the first 8 week on Valcyte, then plateaued. She was not as sick, nor had she been sick as long as I have. But she has been working 4-6 hours every day, so our experiences are not parallel. I've put her back on the supplements, too, this week. I'll let you know how it goes.

Do me a favor and don't tell Dr Lerner. I'm not sure he'd approve of the supplements and I don't want to tick him off. If it looks like the supplements are definitely adding to the Valcyte effect, I'll do my best to get up the nerve to tell him myself.

 

[slayadragon]

How long have you been sick?

Where do you live?

What are the supplements?

A combination of Valcyte and Famvir has helped me a lot also. But I needed to be in really pristine places (mold-wise) to tolerate it. And it's taken a whole year for its benefits to be apparent.

I think most people can't tolerate/ benefit from it because their systems are being stressed from mold exposures. I couldn't even tolerate tiny doses of Famvir until I got out of my own moldy house.

It's my understanding that most of the people who have really recovered from Valcyte hadn't been sick for very long (1-2 years). None of Lerner's patients (from his study) got fully well even in terms of energy levels (much less stuff like cognition), for example.

I actually am really close to full wellness now, even though I've been sick since 1994. But I also did a whole lot of avoidance, a whole lot of detox, and various supportive things.

I'll have to say that it's very strange for Lerner to disapprove of people taking supplements. Is this because he's including you in a study?

Best, Lisa

 

[SOC]

How long have you been sick?

Depends on how you count. My sudden onset was 6 years ago. In hindsight, I could have been having early symptoms long before that -- too many infections, MCS-like symptoms, etc.

Where do you live?

USA Midwest -- farm country

What are the supplements?

MVM-A (a multivitamin and mineral supplement with extras that are good for ME/CFS)
NAC (Nutricology brand)
Ca-Mg supplement (because I don't eat much milk/cheese/yogurt)
B-12 Extreme (LOTS of B-12, ProHealth product)
Transfer Factor Essentials (ProHealth product)
Transfer Factor 200 (targetted CMV, HHV-6A and B, ProHealth Product) (I just added this)

A combination of Valcyte and Famvir has helped me a lot also. But I needed to be in really pristine places (mold-wise) to tolerate it. And it's taken a whole year for its benefits to be apparent.

I do have a documented mold allergy, although it's not severe. We take precautions. When we remodelled the house (down to the studs) we checked for hidden mold, replaced the ductwork and got electrostatic and HEPA filters on the new furnace. None of that eliminates outdoor molds, of course, but they don't seem any worse for me than for other people.

I think most people can't tolerate/ benefit from it because their systems are being stressed from mold exposures. I couldn't even tolerate tiny doses of Famvir until I got out of my own moldy house.

That certainly seems possible. I'd gotten rid of my MCS-like symptoms before I started on Valcyte, so I may not have had a big issue with mold/chemical/whatever stresses to deal with on top of the Valcyte

FWIW, I think Dr Pall has something with his upregulation of the nitric oxide cycle thing. If his theory is right, a number of us could have that problem along with infections and treating one without the other may not be effective. I was undeniably much more sensitive to all kinds of things before I tried his protocol. Maybe I wouldn't have been able to tolerate Valcyte before. Who knows?

It's my understanding that most of the people who have really recovered from Valcyte hadn't been sick for very long (1-2 years). None of Lerner's patients (from his study) got fully well even in terms of energy levels (much less stuff like cognition), for example.

That may be true. I'm working from my uncle's experience. He was visiting Tahoe at the time of the outbreak, had a flu-like illness but was not seriously ill. He declined over a number of years until he felt his lifestyle was unacceptably affected (he was never as sick as I am now). He was treated by Dr Lerner for 6 or 8 years (I forget which). He considers himself completely cured. He is very active, painting fence, playing softball and going dancing (all in one day). I consider that darned good for 70-something, so I'm buying his "completely cured" idea. He's been off antivirals for 2 or 3 years now with no relapse. Maybe he's the only one to become "fully well", but I'd take half that much improvement if I can get it.

I actually am really close to full wellness now, even though I've been sick since 1994. But I also did a whole lot of avoidance, a whole lot of detox, and various supportive things.

I've still got a long way to go and I don't know what I expect the end state to be.

I avoid a number of things as a precaution, but I no longer have to watch every little thing. I still live in a house with a lot more filtration than most houses have, but when I do go out I don't have any sensitivity problems.

I'll have to say that it's very strange for Lerner to disapprove of people taking supplements. Is this because he's including you in a study?

I don't know that he does disapprove of supplements. :Retro smile: I just know he doesn't recommend any, at least not that I've heard of. And he's pretty old-fashioned, which is a good thing generally for ME/CFS, but not where supplements are concerned. I'm just not taking any chances ticking him off if I can help it.

If I'm in a study, I don't know about it. I wouldn't mess up a study.

 

[SOC]

Transfer Factors

Has anybody else tried targeted transfer factors along with antivirals? Any experiences to share? I really feel like this is one area I'm completely winging it.

 

[heapsreal]

not with antivirals but would like to know more about targeted transfer factors like cost and where to get them ect.

cheers!!!!

 

[SOC]

not with antivirals but would like to know more about targeted transfer factors like cost and where to get them ect.

cheers!!!!

I don't know much about transfer factors, so I'm not a person to follow in this situation. Please do research before you try anything new. :Retro smile:

I buy my transfer factor products from ProHealth because I trust them. There's a link from here to the ProHealth Store on the Home page, I believe.

I've been told that their Transfer Factor 100 targets CMV and EBV and Transfer Factor 200 targets CMV and HHV-6A and B.

I know there are other products some people prefer, so you'll want to shop around if you decide to go that way.

Transfer factor products are pretty pricey, wherever you get them. I take a minimal amount (1pill daily) along with Valcyte, so for me the targeted transfer factor costs about $1 a day, maybe a bit more with shipping (has to be overnight).

 

[SOC]

Another week has passed and I'm still feeling good!

I overdid on Tuesday, was definitely tired and mentally foggy on Wednesday, but not drop dead exhausted. Today, though, I was up (out of bed and recliner) 7 hours! That's compared to 2-3 hours for most of the previous year. Today I took a shower, tutored for an hour, had a 2 hr business-y meeting (at home), went out to lunch and some more business with a friend. :victory:

I routinely lay down with eyes closed for an hour every day. If I fall asleep, I sleep as long as my body wants to. If I don't fall asleep, I get up and move to the recliner and do something not too energetic -- needlework, listen to a book, web surf. The amount of time I sleep is usually a good measure of how bad my ME/CFS is. Most of last fall and winter I "napped" 5-6 hours every afternoon.

This week I haven't fallen asleep once! Today I didn't even lay down. I hit the recliner after my 7 hour day (!), but no nap. It's bedtime and I'm not even tired. Amazing.

I'm still mostly sitting, not standing or walking. We're not talking going back to work. But hey, this is looking awfully good to me already!

 

[SOC]

I'm updating mainly because I wanted to talk about something positive and encouraging today.

More than 2 weeks have passed since my last update and every day I seem to get better. I started Valcyte in Feb, so I'm about 6 months into treatment.

I don't have to nap every day. I'm driving a little. I get out of the house a more days then not. I have a lot of my cognitive function back. :victory: Not all, particularly in some specific areas, but it's a BIG difference.

Okay -- get this -- I wouldn't have believed this 3 months ago -- I'm going to be teaching a Robotics class for kids this year for 2 hours, 2days a week. Me, who spent most of last fall in bed!

My daughter is doing much better, too. She didn't wasn't as sick as I was when we started Valcyte and hadn't been sick as long. She had a big improvement to start and has had very slow but steady improvement since. She's doing fine in college and living in the dorm. She's taking a minimum course load, naps several days a week, doesn't walk long distances... all those pacing things still apply. But that's a big improvement on coming home everyday and collapsing on the nearest furniture to sleep for 5 hours!

I'm not expecting a cure, but this is a HUGE quality of life improvement and I have to believe reducing the infection is better for my body than letting it run rampant.

Oh yes, and no side effects other than the 10-12 week setback (IRIS?) which was unpleasant, but not unbearable. My daughter has had no side effects. :Retro smile:

As I've said elsewhere -- if they want to take my Valcyte away, they're going to have to pry it out of my cold dead hands.

 

[SOC]

I'm getting better every day.

Aw, c'mon! Isn't anybody gonna cheer for me? Join me in a virtual happy dance?

 

[Anika]

Aw, c'mon! Isn't anybody gonna cheer for me? Join me in a virtual happy dance?

Sickof,

Maybe you'll have to change your moniker if this keeps going up - wouldn't that be great! ;-)

That is great and encouraging news. Robotics class - sounds like fun! I didn't know you had a background in that kind of thing.

I don't know if you've posted already elsewhere about this, but I'm supposing you had high titers to things like EBV, HHV6, and/or CMV that helped get you the prescription. Have you seen a change in titers to relate to your symptom improvement?

Thanks for the update - and look forward to hearing more.

Anika

 

[slayadragon]

I've had a good response to Valcye/Famvir too.

I'm really happy to hear you're doing so well!

Best, Lisa

 

[heapsreal]

good on ya mate, go the famvir. its my antiviral of choice

 

[SOC]

Sickof,

Maybe you'll have to change your moniker if this keeps going up - wouldn't that be great! ;-)

I've been thinking that myself.

That is great and encouraging news. Robotics class - sounds like fun! I didn't know you had a background in that kind of thing.

Yep, I'm one of those geeks.

I don't know if you've posted already elsewhere about this, but I'm supposing you had high titers to things like EBV, HHV6, and/or CMV that helped get you the prescription. Have you seen a change in titers to relate to your symptom improvement?

Thanks for the update - and look forward to hearing more.

Anika

I'm a patient of Dr Lerner. I have an active HHV-6 infection, which is what justified the Valcyte. I doubt my PCP would have been able to do the same test or would have been concerned about a high titre on the test he would have given.

Unfortunately, the lab changed reporting formats, so it's hard to compare my current results to my first test. My last test was in the midst of my herx-like (IRIS?) period during which things went kinda wacky -- HSV titre skyrocketed, EBV titre climbed, HHV-titre seemed to increase (though hard to tell with reporting format change). I think I get another HHV-6 test next month, so we'll see what the titre looks like then.

Meanwhile, I'm enjoying feeling mostly human! *grin*

 

[SOC]

I've had a good response to Valcye/Famvir too.

I'm really happy to hear you're doing so well!

Best, Lisa

Ditto! Do you have moments of wanting to dance for joy, too?

 

[SOC]

good on ya mate, go the famvir. its my antiviral of choice

Is Famvir mostly for EBV or HHV-6/CMV? I've heard a number of good things from other PWCs. Why do you "like" it?

 

[heapsreal]

hi sick of cfs, i have tested positive to ebv and cmv, negative to hhv6, i have also had tests done after the initial ebv tests which as come back negative, so i dont know whats happening there, maybe my body isnt making antibodies to ebv. i have had chronically elevated lymphocytes and lymphocyte subsets and my doc suspected ebv/cmv reactivation, i have used valtrex with no success but famvir has helped quite a bit with a corresponding drop in my elevated lymphocytes. Ive also had a natural killer cell function test done which showed they were dysfunctional as well. I have gone off antivirals a couple of times and gotten worse within a week every time ive done this. my cfs onset was chickenpox and glandular fever(ebv). before antivirals i was really struggling to work part time, now im working full time again, still get worn out but not like before and still need sleep meds to sleep, so sleep meds are a big part of my treatment as well.

At the moment im looking into things that strengthen natural killer cell function like immunovir etc as i think this maybe where the viral reactivation is sneeking through, if i can fix this then maybe go antivirals which would be good for my bank account.

cheers!!!

 

[August59]

hi sick of cfs, i have tested positive to ebv and cmv, negative to hhv6, i have also had tests done after the initial ebv tests which as come back negative, so i dont know whats happening there, maybe my body isnt making antibodies to ebv. i have had chronically elevated lymphocytes and lymphocyte subsets and my doc suspected ebv/cmv reactivation, i have used valtrex with no success but famvir has helped quite a bit with a corresponding drop in my elevated lymphocytes. Ive also had a natural killer cell function test done which showed they were dysfunctional as well. I have gone off antivirals a couple of times and gotten worse within a week every time ive done this. my cfs onset was chickenpox and glandular fever(ebv). before antivirals i was really struggling to work part time, now im working full time again, still get worn out but not like before and still need sleep meds to sleep, so sleep meds are a big part of my treatment as well.

At the moment im looking into things that strengthen natural killer cell function like immunovir etc as i think this maybe where the viral reactivation is sneeking through, if i can fix this then maybe go antivirals which would be good for my bank account.

cheers!!!

I tested positive for EBV (EA, VCA and NA) and HHV-6, but CMV was NEG. I say positive on EBV, but my GP tends to discount the levels because they were IgG, instead of IgM and CFS doc at the time says that EBV IgG should never be as high as mine was and all 3 types were positive means reactivation. Do you mind if I ask what types anitbodies(?) you tested positive for (IgG or IgM)?

I took Valcyte for 3 months, but was stopped to try and get thyroid straightened out. I still have about 2 months worth and was thinking about finishing it up. It definitely helped me get through the day after I had been on it for a few weeks.

I understand about the sleep problem too as I actually had trouble with that before I got CFS, but became much worse after that. I was on Klonopin and Ambien, but am now going through a cycle of Xyrem. As tight as it is regulated they didn't have to put so much sodium in it, as it almost makes it not worth taking.

 

[L'engle]

Re: SickofCfs:cheers and virtual happy dance:

:victory::victory::victory:

Teaching robotics! That is cool!

 

[hvs]

I'll cheer for you! Excellent news.
And do you have POTS or OI symptoms? Gatorade and salt intake could help keep you up, too.

 

[heapsreal]

Hi august 59 all my tests were igG positive, in australia they wont give titre values so thats why my doc went off my lymphocyte tests which showed i was chronically fighting some type of viral infection.

cheers!!!

I tested positive for EBV (EA, VCA and NA) and HHV-6, but CMV was NEG. I say positive on EBV, but my GP tends to discount the levels because they were IgG, instead of IgM and CFS doc at the time says that EBV IgG should never be as high as mine was and all 3 types were positive means reactivation. Do you mind if I ask what types anitbodies(?) you tested positive for (IgG or IgM)?

I took Valcyte for 3 months, but was stopped to try and get thyroid straightened out. I still have about 2 months worth and was thinking about finishing it up. It definitely helped me get through the day after I had been on it for a few weeks.

I understand about the sleep problem too as I actually had trouble with that before I got CFS, but became much worse after that. I was on Klonopin and Ambien, but am now going through a cycle of Xyrem. As tight as it is regulated they didn't have to put so much sodium in it, as it almost makes it not worth taking.