Trying valcyte again, so far so good

[vli]

i'm having a bloody impossible time to put it mildly on val, i've gone from being on 1 tab to 1/2 tab every day then every other day now once every 2 or even 3 days, i'm totally bedbound, was housebound before i left the US on 1/31 and haven't left my home since i flew into london on 2/1. i don't hv the strength to do any of the stuff to support detox or watch my diet bc i'm just in bed and sleeping all the time. i dunno what to do.

 

[heapsreal]

i'm having a bloody impossible time to put it mildly on val, i've gone from being on 1 tab to 1/2 tab every day then every other day now once every 2 or even 3 days, i'm totally bedbound, was housebound before i left the US on 1/31 and haven't left my home since i flew into london on 2/1. i don't hv the strength to do any of the stuff to support detox or watch my diet bc i'm just in bed and sleeping all the time. i dunno what to do.

Sorry your feeling so bad. I had a couple of attempts at starting and had to stop due to feeling like crap in a bad way. But i found not long after stopping i would have a few days of mental clarity and would think is it helping but then i would just be back to crappy self. I probably did this a few times in probably 2 week blocks, eventually one time i just didnt feel like crap from it and could continue taking them all the time.

My advice is to take a break and wait a couple of weeks to return to normal crappy self and then maybe go another weeks and 1/2 pill a day. then if feeling like crap from itstop for a week or two and maybe try again.
Did famvir make u feel that ill? Maybe worth using famvir for a few months to help lower viral load and then start val again. I dea is famvir maybe better tolerated and can make val easier to tolerate , to support your liver just use nac and lipoic acid.

Im sorry u feel so bad, i dont know if its a sign its working or not, but u dont want to be living in hell while undergoing treatments.

cheers!!!

 

[heapsreal]

Almost 12 months on valcyte. I just got some blood work back. We use lymphocyte testing to give us an idea of what is going on with cmv infection i have but im not sure how accurate this is once on antivirals. Not able to get titres measured here. My symptoms and fatigue have definately improved but my lymphocyte markers still show my immune system is activated, they are definately lower then pre antivirals. I suppose its really showing that my immune system is still working and fighting something, also my neutrophils were slightly low, sinuses may have something to do with this too maybe? My doctor and i have decided to stay on valcyte longer but looking at trying lower dose ie 1 tab a day and keep with the famvir as well.

I have also been on immunovir but dont have access to nk function testing as i could only get this when i was in the PHANU nk study, but i can get nk numbers tested. Most of my nk numbers normally comeback in the lower third of the range but my recent test showed the nk numbers increased into the middle/upper third of the range, it was a small increase so hopefully a sign that immunovir is working?? So i will continue with this.

A test that i have had that has always shown issues along with the lymphocyte test is my free testosterone levels. So now that we have a handle on infection/immune side of things now, we are going to look at improving this. I go for another round of hormone tests in a month and if still low will look at using a testosterone cream to try and increase my low levels. Hopefully this can improve immune function some more as well as general energy and recovery levels. I rate my current level at an 8 out of 10, minimal symptoms at rest but would say i have some mild lethargy and increased symptoms if i push myself too much. So at rest i feel ok, when i have been lower then an 8 i would say i still have a sick feeling which i dont seem to have much anymore, just that bit of lethargy. This lethargy also could be from low free testosterone levels.

Other symptoms i have are sleep but sleep has improved even though still medicated. The addition of phosphatidylserine, withania and active vit b6(p5p) i think have contributed. Previously i would wake several times a night or only sleep for a couple of hours or problems falling asleep etc. Now sometimes i have a few issues falling asleep but not as bad as before but generally i sleep through the night, if i do wake up i mostly can fall back asleep. My dosage of sleep meds is still minimal but would like to work on trying to sleep naturally once i have sorted free testosterone and hopefully my immune system gets further ontop of things.

cheers!!!

 

[vli]

Sorry heaps if you've discussed this elsewhere but do you feel an actual boost fr immunovir? or do you feel bad fr it/nothing? thanks a lot.

 

[heapsreal]

Sorry heaps if you've discussed this elsewhere but do you feel an actual boost fr immunovir? or do you feel bad fr it/nothing? thanks a lot.

As for feelable results from immunovir?? not really but a sign my immune system maybe be improving is that my sinusitis has improved. The first few days on immunovir i did have die off type symptoms but this passed quickly. Also the small increase in nk numbers is a good sign but it will always take time for nk cells to make an impact on chronic infections like cmv that i have. I think its also hard to gauge there improvement i think because valcyte has had such a big impact that feelable results from immunovir would be hard to notice, this could be different if one just took immunovir. My plan is that immunovir improves my nk function enough that when i finish valcyte that my immune system will be capable of keeping cmv/ebv down along with famvir that i plan to keep taking.

At the moment i dose immunovir 3 tabs twice a day on mon/wed/fri and not dosing on the other days. I do this for 2 months then have 1 month off where i have been taking cycloferon which works in a similar way to immunovir. Im also hoping that improving my low testosterone levels will also help improve my immune function, well i hope, fingers crossed

 

[heapsreal]

Two nights ago i dropped the dose of valcyte to 1 tab a night. At this stage i have a 4 months supply left at that dosage. We will see what happens, not expecting much other then stabilizing were im at.

My thinking is that further improvement from valcyte wont occurr and better to lengthen my treatment course at a lower dose then a shorter higher dose. More time letting this virus burn its self out hopefully as immunovir fires up my immune system and better handle things when i eventually stop valcyte altogether.

cheers!!

 

[Ruthie24]

Thanks for keeping us updated on your progress. It's helpful to see how you're handling this process.

 

[heapsreal]

tested my boundaries tonight it was all good. In my previous life i wasnt a bad tennis player, i played alot as a teen, tournaments etc no champion or anything like that but i enjoyed the sport, the only thing that stopped me from being a super star was just that i didnt have any talent, drive or athletic ability, other then that i could have won wimbledon .

Its been 2 years since i last attempted playing tennis, i have had numerous comebacks since i have had cfs but as it goes, cfs as well as lower back issues have stopped me. So since my last attempt, have had a procedure on my back(facet joint ablation) which has helped my back pain and as this thread is about valcyte it too has helped me alot. So tonight i went to tennis, its a social comp and just doubles played, i was sort of excited and sort of worried about the consequences and not out of the woods yet. But it went well and i had fun, won 3 of my games and there was a few hints of yesteryear there too, i was abit rusty but the first game was an easy one, the next two were abit tougher but physically not too bad. My back pulled up ok, was getting alittle tight after my last game but to be expected since i havent really done anything that active for awhile. Legs feel alittle rubbery too but as expected. Generally with cfs any sort of exercise /activity makes one feel sick but i actually felt good, had abit of an endorphin rise like a runners high. This type of feeling just doesnt happen when ill with cfs, i just dont think our bodies can normally produce those endorphins, so i gauge the endorphin high as a good sign that my exercise mechanics are working.

But i say im not out of the woods yet as we have to wait if PEM kicks in, as well with my back its usually the next day i wake up stiff as a post (just thought of a new symptom PEM back). so tomorrow i will chill out and maybe stretch my back too. I started creatine again last week as i wanted to start trying to increase my activity and creatine can help with energy and recovery, im hoping. I am expecting to feel some soreness as i have been a couch spud for awhile.

So time will tell if the valcyte and other treatments have helped increase my physical boundaries more noticably and hopefully after i wake up im not posting here saying i feel like i have been hit by a bus. but im treading carefully and would like to continue playing tennis once a week and after a few weeks then add some light weight training back in maybe twice week to help strengthen my lower back.

fingered crossed that the next few days i can bounce out of bed. Im excited and nervous of what the future will holds.

 

[Ruthie24]

oh wow! That is so exciting to hear! I'm jealous that you could even go out and play and feel good while doing it!!! That right there seems like a huge improvement! VERY COOL! I'm keeping my fingers crossed right along with you that you don't have PEM and that you continue to improve and can keep up with a higher level of activity for fun.

Hope you haven't jinxed it by reporting in, but so very glad you shared the good news! Thank you for doing that.

 

[heapsreal]

so had a good sleep last night and have woken up and not hit by a bus?? Feel abit stiff in the lower back but expected. niggling little aches and pains i have had arent there today so much, so hopefully that bit of exercise is helping?

 

[ukxmrv]

That's great news Heaps! Sounds like a normal response to exercise. Take it easy though for the next couple of days as it can take 24-72 hours for the full PEM to hit. It's culmulative so taking it easy now could save you from the full crash later.
Hoping that a crash won't occur though!!

 

[Ruthie24]

So Heaps...how are you doing now, several days after that excursion back onto the courts on Wed? Still doing ok?

 

[heapsreal]

So Heaps...how are you doing now, several days after that excursion back onto the courts on Wed? Still doing ok?

i was abit sore for a few days which i expected but chilled out alot afterwards as well and seemed to have recovered well from it, so wednesday night im going to give it another bash. Active resting afterwards of course.

i hope by writting these updates i havent jinxed myself. yesterday we did some heavy duty cleaning at home for about 6 hours, that sort of cleaning u say yeah we do that another time, well the time came. So i was tired afterwards but like normal person would be. then this morning had abit of a sleep in and a lazy morning and went to work for my afternoon shift, so far ok. my days off are mid week and this is my first day back after 2 weeks off, so one day on then i get a few days off then go back friday for 5 shifts seem to keep my head far enough out of water to keep me from getting into trouble, at the moment.

 

[heapsreal]

Been a month since i dropped the valcyte from 2 to 1 tab.

Not feeling great but the last week or so my sinuses have flared up, sore throat and everyone around here has had a cold so may have coped it.

Finished my recent run of shifts at work which was ok and my first 2 days off i have been in bed with a migraine/headaches etc. Its a bit of a remiinder of life pre antivirals.

I actually fell asleep during the day today which is rare. Yesterday nothing helped my head until i took my sleep meds at night but woke with a headache and smashed some panadeine and a shot of cough medicine dulled the pain down today.

So i dont think it has anything to do with valcyte dose reduction just some stray bug feeding on my brain cause my nk cells are too lazy to kick them out. Back on doxy for sinusitis for over a week and recently added zinnet as sinuses were slow to respond but seem to be improving now.

Has far as any regular exercise, it just doesnt seem to happen as things like colds etc always seem to show their ugly head which makes being consistant hard.

Still doing the immunovir 2 months on and then 1 month on cycloferon and then repeat. Currently on cycloferon.

cheers!!!

 

[niall]

Part of the reason im now using immunovir is im hoping by increasing my nk function that it will also help keep those viruses in a latent state as well as the famvir.

cheers!!

It's long past the time for an update on my post Ampligen protocol. I had a very rough winter season, i.e. very busy holidays, lots of visitors, a head cold, etc. I began to feel an increase in symptoms about three months after stopping Ampligen, such as intermittent cough, sore throat, fatigue. When I saw Dr. Rey about six weeks ago, she told me that I had reactivated the HHV6 (1:320) but the EBV was still latent. She had checked me for Coxsackie which reactivated. I had never, to my knowledge, been tested for this before. Dr. Rey increased my dose of Famvir from 250mg/day to 250 twice a day and she started me on Equilibrant one tablet/day for the Coxsackie. I still have symptoms especially if I push too hard but on the good days I can be moderately active (4 to 6 hours).

 

[aquariusgirl]

It's long past the time for an update on my post Ampligen protocol. I had a very rough winter season, i.e. very busy holidays, lots of visitors, a head cold, etc. I began to feel an increase in symptoms about three months after stopping Ampligen, such as intermittent cough, sore throat, fatigue. When I saw Dr. Rey about six weeks ago, she told me that I had reactivated the HHV6 (1:320) but the EBV was still latent. She had checked me for Coxsackie which reactivated. I had never, to my knowledge, been tested for this before. Dr. Rey increased my dose of Famvir from 250mg/day to 250 twice a day and she started me on Equilibrant one tablet/day for the Coxsackie. I still have symptoms especially if I push too hard but on the good days I can be moderately active (4 to 6 hours).

Bit disappointing right? But you still feel what % better than before Ampligen? at least they are on it straightaway. thanks.

 

[heapsreal]

It's long past the time for an update on my post Ampligen protocol. I had a very rough winter season, i.e. very busy holidays, lots of visitors, a head cold, etc. I began to feel an increase in symptoms about three months after stopping Ampligen, such as intermittent cough, sore throat, fatigue. When I saw Dr. Rey about six weeks ago, she told me that I had reactivated the HHV6 (1:320) but the EBV was still latent. She had checked me for Coxsackie which reactivated. I had never, to my knowledge, been tested for this before. Dr. Rey increased my dose of Famvir from 250mg/day to 250 twice a day and she started me on Equilibrant one tablet/day for the Coxsackie. I still have symptoms especially if I push too hard but on the good days I can be moderately active (4 to 6 hours).

The good thing is there finding things and treating them, hope things improve for you.
I will post an update tonight.
cheers!!!

 

[niall]

Bit disappointing right? But you still feel what % better than before Ampligen? at least they are on it straightaway. thanks.

I would estimate that I feel about 30% better than my pre-Ampligen status. Except when my symptoms get bad, I continue to feel much less sick on a daily basis (latent EBV?). This makes a very big difference in my functioning and coping abilities. I was indeed quite disappointed that I didn't hold on to the post Ampligen gains for a longer period of time. In retrospect, I should have stayed on Ampligen for another six months (too expensive) and started the Famvir at 250mg twice a day within two weeks. In all honesty, I was frequently pushing my limits post Ampligen thinking that the Famvir once a day was protecting me from a relapse. This is a learn as you go experience. I have no regrets about the Ampligen, though.

 

[heapsreal]

Saw my doc today and now stopping valcyte after being on it for 14months? but will remain on famvir which i will dose at 250mg twice a day. Valcyte has helped me alot combined with sorting hormones with the latest improving my low testosterone levels which i think has helped me to recovery for activity and exercise and avoid pem or bad pem anyway.

We decided to stop valcyte just to give my liver a break(testing liver function still good) but also needed to stop valcyte as im trying a new treatment for sinusitis which could clash with valcyte. I function well on augmentin but sinusitis comes back quickly when i stop as well as blood pressure increasing which probably plays a big part in severe sinus headaches, so what my doc has suggested is to stay on a once a day augmentin at night with probenecid which helps the augmentin last longer in the body and will possibly do this for 3 months. So if i was still on valcyte the probenecid would increase those blood levels too high. I had a fungus serology test for sinuses which was negative and my recent full blood count showed moderate neutropenia which doc said was probably due to chronic sinusitis.

Balancing my hormones has been a slow work in progress with the last hormone to sort out being testosterone. Testosterone does more then make one a horny bugger lol but can help with immune function(i hope) as well as improving general recovery through increasing anabolism etc and helping improve general wellbeing and energy. My total has always been ok but last test it was low normal with my free T levels below normal, probably of a 90 y/o. Im using a 10% T cream in versa base which dries very quickly and suppose to have good absorption and low allergy problems. I started on a 1/4ml which is a low dose, 3 weeks after tests showed it increased my total T to mid/high normal and freeT was now just in the low normal, so it has helped. The first week i felt it helping abit but then it sort of faded i guess but after getting tests done 3 weeks down the track i then increased it to 1/2ml which i have been on for the last week and feeling better for it. Look at further testing down the track.

I am slightly scared to death about stopping the valcyte but i have some comfort in that i have a supply up my sleeve and that those who have relapsed have improved once again when going back on valcyte, i think thats according to dr montoya's work. Hopefully famvir is enough to keep viruses supressed and other treatments enough to improve immune function.

So i would say as long as im on antibiotics for sinusitis i am functioning at about a 9. I still have some sleep issues, the occassional aches and pains but they have decreased alot. I dont have that sick feeling all the time. i still pace myself and if i have had a big day i will book in a rest day if i feel i need it or not. still havent really pushed my boundaries hard, but probably wont either.

So thats where i am after 11 years when my cfs/me began.

cheers!!!

 

[*GG*]

I have been on Clomiphene Citrate for a few months now, and had a Dr visit in April, and he said my Testosterone level was good now. I take 25mg 2x/week, a few days apart. I try to take it on the days I go to the gym for a little work out.

GG

PS I think I tried Valcyte about 5 years ago, or perhaps it was Valtrex? I tried it for 2 months with no noticeable improvement, I recall the cost was supposedly $2k/month, and my co-pay was only $20 at the time, those were the good days with low copays!