Week 12 of Valcyte

[undcvr]

26 Jan 2011, NYC in the dead of Winter

So after 3 months of Valcyte I would say that I am essentially 'cured', with many caveats. After dropping the Valcyte to the lower dose 900mg, my EBV came back. So now I am back on the 1800mg and for as long as I can see it at least for a few months, about 3. I will on 1800mg of Valcyte for 3 months.

I am not sure whether to be happy or sad. Even in the winter, at this dose of Valcyte, I am able to run around and get things done. The cold does not affect me as badly as it once did. In fact I cannot remember when it was that I felt like this, healthy and full of energy.

All my other symptons of cfs are slowly fading : IBS, sleep disorder, anxiety disorder, energy, ... I can feel them drain away from me. The supplements I need to take are less and less.

But ... and a big 'but' coming ...

At this Valcyte dose and the length I have to be on, Valcyte's reputed carcinogen warnings over and over again (black box warning), the cost of the drug, I see no cure in sight but a list of other things to worry about.

I am already functioning at about 75% after just being on Valcyte for 3 weeks. And for the first time in so long, I can actually see myself, in a few months time, actually recovering from this whole ordeal. To even think of it as an ordeal is amazing actually !

I am keeping several other regimes going. I like the methylation/folate therapy and am supplementing with that. I am also taking Shark Liver Oil at high doses and that could be the only thing that is keeping Valcyte's main side effect at bay. If the SLO can help my body get through it, I should be fine.

At this dosage, I may give myself 5 months max, even my doctor was commenting that he is not happy with the dosage. If I come off it and the EBV comes back, it will not be the end of my journey with cfs afterall and I will have to start looking into other treatments again but I am already looking ahead. By then my doctor says that he maybe willing to consider Vistide and or interferon. In some ways I am lucky bcos my doc is actually a virologist that specialises in HIV. He felt sorry for me and wanted to help when I ran into him at a clinic by chance and since then, I have clung on to him like a champion parasite.

But I have gotten these few months of my life back. For whatever it is worth it is a great respite.

undcvr-Jasper

 

[Anika]

Jasper,
Thank you for sharing your experience. I'm very glad that Valcyte has been good for you, and that you've had a respite. But, I understand your concerns about dose / cost / toxicity / length of treatment.

Can you clarify dosage and length of treatment as they relate to symptoms and EBV testing?

It sounds like
--you had 12 weeks Valcyte, starting at 1800 and then at some point dropping to 900 dose; (before you resumed dose at 1800 recently, which you're awaiting results of);
--that you started to experience benefits about 3 weeks in;
--that you had some EBV tests before and during those 12 weeks that showed a drop in EBV but then some sort of resurgence, that you and/or your doctor felt was attributable to the lower dose?

I'm trying to recap to be sure I've got it right. I haven't done Valcyte but it's something on the maybe/someday list.

Also, when you mention EBV results, benefit then resurgence, I'm wondering what tests your doctor used, that were quickly sensitive to these changes? (there are the various IgG VCA, EA, EBNA, and IgM but I know some expert researchers have referred to other tests. (Some tests I gather are only available at select research centers - and only if you find the right doctor.) Or, possibly, are you able to identify by symptoms a resurgence that you've previously linked with EBV tests?

Also were other viruses, such as HHV6, part of the rationale for treatment with Valcyte vs other drug? Which I ask because for EBV alone, valacyclovir is apparently helpful according to some doctors, like Lerner (and I think it's less toxic, not sure about cost but may be less than valcyte). I think some patients have used Valcyte plus Valtrex/valacyclovir together - I don't recall the specific reasons for the combination approach, and how much toxicity considerations were a factor.

Also, I think I may have read something about differences in blood-brain barrier, with valcyte being more effective than valacyclovir. Do you know if this is part of the benefit you've been obtaining?

I'm glad you managed to find and latch onto a virologist who may actually help! Good luck - I hope we hear positive reports from you about continued recovery.

Anika

 

[heapsreal]

have u thought of switching to famvir once your viral load is down as it might help keep it down without the toxicity of the drug/valcyte, are u also on any immune stimulants etc, u probably told me before but hard to remember with all the threads posted, lol.

 

[undcvr]

Thanks Anika, I am cautiously enjoying my new found energy, alertness and resistance to infection. In some ways it feels so new, like I have never been this way before. In other ways I feel so sad to have forgotten what it feels like.

Current standard Valctye dosing therapy is : First 3 weeks at 1800mg (induction therapy). And then the rest of the weeks at 900mg each day. For a total of 3 months. This the the therapy for kidney transplant patients at risk of CMV retinitis or other CMV infections. To this day, this is the only recommended use by the FDA for Valcyte. Everything else is off label. Recentlyy the FDA has extended the length of treatment to 6 months. When my doc dropped the dose down to 900mg, that was when all the cfs symptoms started back up again. At somepoint in week 5 to 6, I did a blood test and it showed that my EBV was negative. Another one was done somewhere in week 7 or 8 (blood tests are done every 2 weeks on Valcyte), this time it showed that the EBV came back.
From where ? Probably it was just hiding inside of me. Somewhere along week 2-3 of the induction dose of Valcyte, I noticed a change in my thought processes, energy level, everything. I knew that the Valcyte was working.

Now, week 11 on, I am back on the induction dose again, 1800mg. I am feeling better again.

Over the years I am able to recognise the signs of the EBV and I was able to tell that the EBV had come back even without needing to wait for the results of the blood test. The symptoms, which i dont think are exclusive to me are, exhaustion from mild exertion, IBS (flatulence, blood in stools, difficult bowel movement), mild tongue infection, peeling of skin on either side of lower lips, difficulty in regulating body temperature to heat or cold, rapid heartbeat from mild exertion (mouth in throat kind of feeling).

About Valcyte and Valtrex, I did try Valtrex first before moving on to Valcyte. We kept moving the dosage of the Valtrex up and up. I did feel that at the higher dose Valtrex did work for me. Before I changed to Valcyte I was at 5gm of Valtrex a day. The highest dose of Valtrex is 8gm a day. But at such a high dose, the side effects mimicks Valcyte. All through the treatment though my HHV6 titers have always stayed the same, 1:320. When I was taking 900mg of Valcyte, I would also pop 2gm of Valtrex daily, but it did not help much. For me it was the high dose of the Valcyte that changed everything for me.

The EBV tests he used are standard commercial tests. The Qualitative is done at Bioreference Laboratories, its just a standard Virus DNA PCR.
The quantitative is done at Quest Labs. RT (real time) - PCR

I dont know about Valcyte passing through the BBB any better but I am able to think better, remember more and not be so nervous.

I hope all this helps.

 

[Anika]

undcvr,

Thanks for sharing this info. I was not familiar with protocol for using Valcyte in CMV. It sounds like so far your doctor is comfortable trying this out within the CMV label limits - a good start, and I hope not a limit.

I haven't had PCR tests for EBV, and as far as I can tell from reading posts they don't seem to be very commonly used by most doctors treating CFS, even those whose other EBV tests (the various IgG, EA etc) indicate chronic reactivation.

I do understand what you mean about becoming familiar with signs of a viral resurgence. It took me some years to distinguish and feel confident that they related to testable results (not getting tests very often). Ideally, there would be a safe and affordable drug we could take (or increase dose on) when we recognized the signs, sort of like diabetics adjust their insulin.

Which makes me wonder - how quickly do the EBV PCR test results come back? Do you know if they're quicker than the titers? (It seems like it takes a while to get viral titer results.)

I really hope you can get sustained results with your treatment.

 

[undcvr]

It takes about 5 days to get the results back. So a week from when you get the test done, you can get the results.

Heaps, Famvir did not work for me. When the doc dropped the dosage to 900mg and my cfs symptoms started coming back, I tried both Valtrex and Famvir to see if either of them could work. They didnt. It wasnt until i got back up to 1800mg did the symptoms firmly disappear.

 

[undcvr]

Just played 3 hours of indoor tennis yesterday and i feel fine today. This is something that could never happen before. I usually just hibernate in the winter because of the cold. But now I can manage it. Will try going for a run at the gym this weekend.

 

[Timaca]

Be careful not to overdo. I was feeling the best in 7 years, overdid it physically, and am paying for it big time now. Be really, really careful. Going backwards is no fun!

 

[heapsreal]

That is good, even if u do crash, but i hope not, yes take it easy.

Just played 3 hours of indoor tennis yesterday and i feel fine today. This is something that could never happen before. I usually just hibernate in the winter because of the cold. But now I can manage it. Will try going for a run at the gym this weekend.

 

[undcvr]

Friday evening here in NYC. Its snowing outside alittle. Alittle more than 24hr since I played tennis yesterday. I feel fine. I was able to get up this morning and make it to my psychotherapist's appointment. It is definitely the Valcyte and definitely the dose.
I seem to need less of my daily supplements too but I am not taking any chances yet.. Not as overstimulated as I can get sometimes throughout the day.

- i think a miracle is happening here.

 

[heapsreal]

sounds promising, your on the right track then.

cheers!!!

 

[undcvr]

Btw if anybody is thinking about taking Valcyte I strongly recommend taking about 1gm of alkylglycerol (shark liver oil) a day with it as well. Start taking the SLO about 1 week before you start the Valcyte. One of Valcyte's more notorious side effects is bone marrow suppression. Many doctors have been known to take their patients off Valcyte becos their white blood cell count would fall very low while on Valcyte. This is a serious and life threatening condition. Blood tests must be done every 2 weeks while on Valcyte. SLO stimulates WBC production in the bone marrow and is used as an adjunct for patients on chemotherapy. This was how I first heard about it.

1gm of alkylglycerol a day actually took my WBC count above my baseline and higher than it has ever been in my entire life, ever since they started keeping records of my WBC count a few years ago. On top of that I feel stronger. I will still keep taking the SLO when I do stop taking Valcyte in the future.

 

[AliceZ]

I, too, have found a big drop in my need for supplements, as well as a huge drop in my chronic Ear, Nose and Throat infections, since I started the Valtrex/Valcyte combo. I am glad to hear that you're seeing these improvements, too, undcvr, as I hadn't seen anyone else describe them and was wondering if I was the only one who had them. The energy/fatigue improvement is coming much slower for me than for you, but I'll take whatever I can get. I'm looking forward improving as much as you have! Keep us posted.

 

[undcvr]

AliceZ what is your dosage of each of them on the combo like ? Valtrex really didnt do much and neither did the Valcyte until I went on the high dose.

 

[undcvr]

Went for a 2 mile run today. Felt fine after. All is well in the world.

 

[heapsreal]

Sounds really good undcvr, how did u go with the cyclo??

 

[undcvr]

I just ordered an ampoule opener online. Haven't actually used any of the new ampoules I just received in the mail. Ampoule opener should arrive mid week. Taking about 50mg of Zinc orotate at bedtime cos Hip posted that it boosts interferon levels about 10 or 100 fold.

 

[heapsreal]

if the time comes to stop valcyte, things like cycloferon, imunovir plus the other less toxic av's are probably going to be what u need to keep your current level of function. Do u have a plan yet for this???

 

[undcvr]

Actually my plan is to while the Valcyte stops the virus from replicating to take alots of immune boosting stuff (increase NK activity, interferon) at the same time, eg Cyclo, IP6, mushrooms, etc. The idea is to go after latent virus stores. Everybody is talking about that for xmrv and hiv but I think that it might actually work for me since with me it is ebv and hhv6 and so theroretically not so virulent. Also many people before me have managed to clear the virus as well. I just want the whole process to go faster since i am on a high dose of Valcyte and not crazy about its lovely side effects.

Of course once it is latent or wiped out, it is supposedly in up 90% of the human population and so easily passed that I am sure that I will run into it again. I will cross that bridge when I get there.

 

[undcvr]

Been a week since i last posted. I am not feeling great like a low grade illness but this time it is different becos of the Valcyte. I am still on it. This time I am not feeling like the way some of these infections just creep up on me and ambush me. I am much more aware of it this time. It also means that I can do more about it.

I am even able to take rests and naps when I need it the most. Was never really able to do that.