Valcyte (plus) Update

[AliceZ]

Alice,
I said I would keep you posted on my Valcyte treatment and so today I cut back to 900mg. a couple of days early. I was beginning to feel really fatigued and felt it may be from the Valcyte. One more comment, since no one knows for sure what causes CFS, if it is a retrovirus like XMRV or others, then would Valcyte be completely ineffective in their treatment. Maybe there is a happy medium, lower dosages for active or prophylactic use against other well known viruses that may be the cause? Just rambling, others here have more knowledge.

Regards,

Roger

Nventor-
I sure wish we had all the right answers to these puzzling CFS questions, especially since what may be the "right" answer for each of us is likely a little different based on what little is now known regarding the syndrome. Let me know how the lower dose works out.

 

[SOC]

Sickofcfs-

Thank you for the update. It is very inspiring encourage me to stay on track, as my daughter and I are in the midst of that initial physical decline, 9 weeks in, and it's rough.

Could you estimate how much you dropped on Dr. Lerner's scale from that initial "3" before you bottomed out? Was it less than 1 point? And about how long were you at the bottom before you started moving back up to the initial level?

Alice,
So sorry I missed your post in Nov! I didn't mean to ignore you.

Now that I understand Dr Lerner's scale better, I have to say I was probably somewhat below 3 when I started. I haven't been below that initial level as long as I've been on Valcyte.

During the rough patch (which wasn't all that rough), I probably got back down to my initial level, but not worse from an energy point of view (which is what his scale measures, I believe). I had some unpleasant, annoying symptoms that I hadn't had for a while -- muscle aches, severely swollen lymph nodes, rashes. I was probably in that stage for 10-12 weeks all told.

After that, I had a big improvement and it's been pretty much uphill since.

I hope you and your daughter are past the rough patch now and seeing substantial improvement.

 

[undcvr]

Hey Sick, Congratulations ! I hope its not premature. Welcome (hopefully) the small and ever growing (hopefully) club.

 

[SOC]

A Full Year on Valcyte

We've been on Valcyte for a year now, and things are going very well.

The best news is that my daughter is doing very well. She's now about 7.5 on Dr Lerner's EIPS scale, which puts her in the "Recovery" zone. Dr Lerner reduced her Valcyte dosage 6 weeks ago and she continued to improve noticeably.

A year ago I doubted she would make it even halfway through the semester. This semester she's taking a full courseload (engineering), working 6 hours a week in an afterschool program for kids, working in a lab at college, involved in campus organizations, and socializing. She swims, walks, and lobs tennis balls. She does not smoke, drink, stay out all night, or do strenuous exercise, so one could argue that she doesn't have a "typical" college student lifestyle but she's happy with it.

She still needs to take Florinef and K-Dur for her dysautonomia symptoms. She usually wears her compression socks when she's out and about, too. We're very aware that she's not 100% well, but this is such a tremendous improvement that we're all thrilled.

I, too, am doing very well. I've gone from a 3 (or a bit less) to a solid 5 over the course of the year. That's big.

I can do Vector Calculus! And Thermodynamics! :victory: A year ago I could barely read -- not enough focus or memory to follow a story. Last week my daughter brought home some homework she was struggling with and I UNDERSTOOD IT!!! I remembered details from when I taught this stuff 15+ years ago. This is truly amazing.

What I CAN do:
I can get up, take a shower, and tutor math for 2 hours (at home). Then I eat lunch and lay down for 2-3 hours. After that, I get up and teach afterschool classes for 2 hours 2 afternoons a week. Other days I do grading or class prep.

I was doing more, but I started to slip backwards, so I decided to take it easier and continue to improve instead. I still spend the evening in a recliner. I lay down in the afternoon, even when I don't feel like I need to.

I can walk up stairs without having to rest halfway... or at the top... or shortly afterward.

I can THINK! I'm not as sharp as I was pre-illness, but heck, this is pretty darn good. I get a bit foggy if I overdo, but it doesn't last. Sleep usually takes care of it. I don't lose words like I used to. Cognitively, I'm much better all around.

I can get over a cold like a normal person! No bronchitis, sinus infection, ear infection, pneumonia, or cold-that-never-ends. No crash. No bedbound period. Just a few days of sniffles and runny nose. Wow.

I can cook as long as I don't have to stand very long. I can keep track of what I'm doing in the kitchen now so that I don't let something burn while I'm trying to remember how to make a salad, lol! I don't do anything complicated, but I also don't screw up everything I try to cook.

I can drive. I had given up driving because my attention/focus was so poor, it was like I was driving half-asleep... too scary. I haven't tried any long trips -- I suspect I would get mentally exhausted pretty quickly -- but I can drive around town just fine.

I can travel by plane if I get wheelchair rides at the airports.

What I CAN'T do:
I still can't walk very far, or stand for very long. I haven't pushed that boundary, though. Maybe in another few months.... Resting and healing is still higher on my priority list right now.

I still have trouble with things that involve arm-waving or arms above the head. I have to sit in the shower and while drying off. When I wash my hair, I need to lie down for a little while afterwards. Making a bed wears me out. So does putting away dishes in the cabinets. Hanging up the laundry is a problem, but not folding it. Dusting is out.

I'm still very limited and largely housebound, although I could be out and about more than I am. I'm still being very careful to leave my body plenty of energy to fight the infections and to heal. I learned last November that although I CAN to more, I can't do more AND get better.

Valcyte has been amazing for us. I don't expect it to get us back to 100%, but the quality of life improvements have been huge. We will continue on Valcyte for as long as we continue to improve (and our bodies continue to tolerate it).

 

[undcvr]

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.

I have basically ignored all of my doctors' advice and kept taking them all through my Valcyte regime. I would say that some of them have even helped me counter the side effects of Valcyte.

 

[SOC]

I have basically ignored all of my doctors' advice and kept taking them all through my Valcyte regime. I would say that some of them have even helped me counter the side effects of Valcyte.

I'm inclined to agree with you. I feel that some of the supplements have either countered side-effects or helped me improve faster. Admittedly this is strictly one (well, 2 at our house) persons' experience, but when we eliminated some of the supplements, we didn't do as well. So we've stayed with most of our supplements on the Why Mess With a Good Thing Theory.

 

[undcvr]

Again I would like to recommend you Shark Liver Oil if the issue of Leukoprenia ever comes up. I take about 1gm of Alkylglycerols a day and my WBC count is the highest it has ever been. Even on the higest allowable dose of Valcyte. Some people report feeling stronger when just on the SLOs alone.

I think Lerner is kinda strange too but his hypothesis on Herpesviruses and Valtrex/Valcyte/Vistide is really on the mark, so I am very thankful to him and Montoya for pioneering that. The fact that pple that are herpesvirus and xmrv + can recover just by treating the herpesvirus itself suggest that at least in some of us. XMRV is still only a participant and not a player. I never tested for xmrv and I may not seeing how I have recovered just on Valcyte alone.

 

[SOC]

Again I would like to recommend you Shark Liver Oil if the issue of Leukoprenia ever comes up. I take about 1gm of Alkylglycerols a day and my WBC count is the highest it has ever been. Even on the higest allowable dose of Valcyte. Some people report feeling stronger when just on the SLOs alone.

I think Lerner is kinda strange too but his hypothesis on Herpesviruses and Valtrex/Valcyte/Vistide is really on the mark, so I am very thankful to him and Montoya for pioneering that. The fact that pple that are herpesvirus and xmrv + can recover just by treating the herpesvirus itself suggest that at least in some of us. XMRV is still only a participant and not a player. I never tested for xmrv and I may not seeing how I have recovered just on Valcyte alone.

Keeping my eye on SLO -- haven't quite convinced myself to go there yet, though.

I suspect that there are some of us diagnosed with ME/CFS who may be pure herpesvirus patients, with no other complications. It is, however, hard to explain why those people have active herpesvirus infections when our immune systems should be well able to keep herpesviruses latent. The simple fact that we have active herpesvirus infections (even multiple active infections) suggests an underlying immune dysfunction of some kind.

I think it is far more likely that the majority of us have something damaging the effectiveness of our immune systems -- a retrovirus, a genetic abnormality, another virus -- and that the reactivation of the herpesvirus is secondary.

IMO, treating herpesvirus infections may eliminate/reduce many of our symptoms, and is well worth doing, but it won't be the whole story for more than a very, very few of us. As long as our immune systems are dysfunctional, we'll always be susceptible to reactivation of latent infections and goodness knows what else.

 

[undcvr]

I think this where supplementation along with the Valcyte comes in. My theory is that while the viral load is kept low, and if you can stimulate the immune system at the same time, you may give your immune system a chance to mount a specific immune attack against the herpesvirus, thus filling the hole in our immune system that the virus has exploited, so to speak.

 

[Tia]

Sickof: This is AMAZING!! Gives me so much hope for a normal life! <3<3 I think alot about all I'll do when I get well like doing my hair everyday, just to have the energy to do that everyday is just..wow.

 

[SOC]

Sickof: This is AMAZING!! Gives me so much hope for a normal life! <3<3 I think alot about all I'll do when I get well like doing my hair everyday, just to have the energy to do that everyday is just..wow.

LOL! I know exactly what you mean. The things most people don't think twice about -- like getting dressed, or doing your hair, or putting on make-up -- become things we dream of being able to do. I feel like I have a life now. A limited life, admittedly, but a real life. And I'm still getting better.

I definitely think most of us who are down toward the moderate/s.evere end of the spectrum can get substantial quality of life improvements from antibiotics/antivirals. It's frustrating the docs haven't figured out reliable ways to find and treat these infections. I spent 2-3 years getting slowly worse while my PCP and a good ME/CFS doc told me I didn't have any infections. Then Dr Lerner diagnosed my HHV-6 infection, prescribed Valcyte, and it's been uphill ever since.

We do have reason to hope for a normal life.

 

[undcvr]

It's frustrating the docs haven't figured out reliable ways to find and treat these infections.
We do have reason to hope for a normal life.

I think you are being too kind, some of these doctors refuse to believe the facts even when the evidence stares them directly in the face. As a result we the patients suffer. Talk about narrow-minded ignorance.

I would say that a good proportion of PWC are 'lucky' enough to have str8 ebv/cmv/hhv6 (herpesvirus) infection and nothing else. Even then finding a doc to prescribe high amounts of Valtrex or Valcyte can turn into an adventure. And the longer the active infection the easier to be coinfected.

How is it that doctors can ignore the findings of doctors like Lerner and Montoya and treat their patients with a clear conscience is beyond me.

 

[SOC]

I think you are being too kind, some of these doctors refuse to believe the facts even when the evidence stares them directly in the face. As a result we the patients suffer. Talk about narrow-minded ignorance.

I have to admit that when I said "can't figure out" I wasn't trying to be kind. I was thinking more along the lines of "can't figure out how to open a door". I agree completely with your assessment of "narrow-minded ignorance". My child is the victim of one of those doctors who refuses to believe the facts even when the evidence stares them directly in the face, so I have little inclination to be kind to them. :Retro mad:

I would say that a good proportion of PWC are 'lucky' enough to have str8 ebv/cmv/hhv6 (herpesvirus) infection and nothing else. Even then finding a doc to prescribe high amounts of Valtrex or Valcyte can turn into an adventure. And the longer the active infection the easier to be coinfected.

I hope you're right that a good proportion of us have treatable herpesvirus infections, I really do. I think I'm less confident than you because I've heard of few complete recoveries with antiherpetics. Still, I hope you're right.

How is it that doctors can ignore the findings of doctors like Lerner and Montoya and treat their patients with a clear conscience is beyond me.

A reputable (and IMO, very good and caring) ME/CFS doc told me 1) that I didn't have an active herpesvirus infection, and 2) that based on what he had seen, most of Dr Lerner's patients weren't really ME/CFS patients which is why he had success with antiherpetics. That was when I was still a novice PWC, so I didn't question it.

Valcyte scares a lot of doctors. It can be a very dangerous medication, especially if the patient is not rigorously monitored. If the doc doesn't really understand how sick we are, s/he can't justify the risk.

The real question, IMO, is why don't they fully understand how sick we are? I think WE all know the answer -- Wessely and Reeves. If we could solve that problem, we'd be getting better treatment.

 

[heapsreal]

plus they still dont fully understand how to treat these herpes viruses like length of time to be on these meds, at what doses etc. As dr lerner is finding is that some people have to be on av's for years or maybe forever, maybe theres an underlying immune defiency as well, xmrv or something else. I laugh at a study done in the early 1980s that says acyclovir is ineffective for chronic ebv/cfs and the trial lasted 2 weeks or something along those lines, now they have better av's and found more herpes infections, theres alot they just dont know about. But i think the secret is going to be in turning on our own immune systems somehow, they find so many immune defiencies in cfs people its not funny especially nk function and im sure there are others too. Hopefully the proactive cfs doctors looking into this keep going and find some answers for us. One last thing they need to do is a one size fits all sleep med that works all the time with no tolereance, that would cut down on atleast half of my posts here, lol.

 

[undcvr]

Valcyte scares a lot of doctors. It can be a very dangerous medication, especially if the patient is not rigorously monitored. If the doc doesn't really understand how sick we are, s/he can't justify the risk.

Then they should push for research into better safer meds. If you think about it, the options that we have out there for such common viruses is really pathetic. Some estimates suggest that up to 90% of the population would have the herpesviruses ... and there are no safe meds in case of an outbreak ??? Even all through the HIV pandemic when HIV was making indigenous latent infections flare up and become active, there are no safer meds ??? Kaposi-Sarcoma which was one of the leading cause of deaths in AIDs patients is HHV8, another herpesvirus. All they have is Valtrex ?

Even for Valcyte, they could at least research some adjuct for leukoprenia, SLO or active folate to rescue the dna/rna pathway like they do in chemo ? There are so many small things they could do that are not even being done. Yet they really think that ignoring it will make it go away.

 

[SOC]

Then they should push for research into better safer meds. If you think about it, the options that we have out there for such common viruses is really pathetic. Some estimates suggest that up to 90% of the population would have the herpesviruses ... and there are no safe meds in case of an outbreak ??? Even all through the HIV pandemic when HIV was making indigenous latent infections flare up and become active, there are no safer meds ??? Kaposi-Sarcoma which was one of the leading cause of deaths in AIDs patients is HHV8, another herpesvirus. All they have is Valtrex ?

Even for Valcyte, they could at least research some adjuct for leukoprenia, SLO or active folate to rescue the dna/rna pathway like they do in chemo ? There are so many small things they could do that are not even being done. Yet they really think that ignoring it will make it go away.

The part of the population that is known to have chronic active herpesvirus infections is very small, that's why they aren't doing much to improve treatment. Practically everybody has multiple herpesvirus infections, they're just latent. "Herpesviruses don't reactivate except in immune-suppressed transplant patients and AIDS (not HIV+) patients." (Yeah, right ).

To add insult to injury, transplant patients and HIV+ patients are watched carefully for reactivated herpesvirus infections and are treated promptly, before the infections are massive and deeply entrenched, but we PWCs are told our herpes-like symptoms are just false illness beliefs while the infection spreads to our brains and nervous systems where they're even harder to treat.

This may all improve if XMRV infects ~10% of the population and is found to inhibit anti-viral pathways somehow. Then a LARGE segment of the population will suddenly (hah!) be at risk and medical folks will fall all over themselves to find treatments for reactivated herpesviruses.

In the meantime, we thank Dr Lerner for standing by us and being willing to treat us for what we DO have, not what some stupid rule-of-thumb says we SHOULD (or shouldn't) have.

 

[SOC]

Okay, here's some new ones for ya...

My hands don't tremor anymore. I've had tremors, to some degree or another for 30 years at least.

My fine motor control has improved noticeably.

Here's a weird one -- everything is brighter. Even at night. The moon and stars are brighter, the colors -- buildings, for example -- that I can see at night are more vivid. It's like.... everything had a good cleaning, lol.

My cognitive abilities are improving weekly.

 

[Live And Let Die]

Good for you Sick, good for you!!!

The other night I was thinking that darkness probably seems darker to me than normal people. This thread and undcvr's experience are really pushing me towards trying Valcyte. I have EBV/HHV6 and nothing else so this is really encouraging.

Now to find a dr here in Las Vegas that will follow the Valcyte protocol. Can't afford out of state trips.

 

[SOC]

Good for you Sick, good for you!!!

The other night I was thinking that darkness probably seems darker to me than normal people. This thread and undcvr's experience are really pushing me towards trying Valcyte. I have EBV/HHV6 and nothing else so this is really encouraging.

Now to find a dr here in Las Vegas that will follow the Valcyte protocol. Can't afford out of state trips.

Good luck with it, Live! If you have EBV, you might start with Valtrex (assuming you haven't already). It's much safer and cheaper than Valcyte, so you might have better luck getting your local doc to try it.

I hope you have success finding a doc who will prescribe Valcyte and is close enough to you. That's one of our bigger problems. My family travels 6 hrs each way to get to a doctor who will prescribe Valcyte. But it's still worth it.

 

[undcvr]

I am somewhat of an anomaly on the Valcyte as my recovery happened quite fast on it. The only reason I can think of why that happened was that I still kepy taking all the supplements that I was taking before while I was on it. Something you might like to consider doing even while on the Valtrex too.