Trying valcyte again, so far so good

[lansbergen]

What happens if it is an immune system attacking our glands and organs instead as an autoimmune condition.That's why so many body systems are involved and that is what makes CFS such a generalised condition.

Would it not be logical the immunesystem woukf start to make antibodies to infected cells in trying to switch them off when it failed to eliminate the infection in the firtst place?

 

[undcvr]

My truly expert medical opinion to this would be: dunno.

 

[heapsreal]

Well im definately functioning better. Due to a mess up of my work roster i worked 5 ten hours shifts 1 day off then 4 ten hour shifts, now have a few days off. i feel tired but after a good nights sleep i will be fine. pre valcyte i wouldnt have made 5 days, 4 if i was lucky and then be supine for a few days afterwards trying to recover. I havent had a sick day from work in over 5 weeks, thats a record for me, plus on days off im doing a few things and light exercise.

A big thanks to my valcyte supplier.

cheers!!!

 

[heapsreal]

still have intolerence to alcohol, had a few beers with some old work mates nothing huge. i was ok while still drinking but when i stopped i started to feel crappy. I know not suppose to drink on valcyte and havent had a drink for ages but thought i would give it a try since i have been feeling better. Lesson learnt lol.

 

[john66]

Heaps, I still have to learn the same lessons over and over. Glad you are doing better. I worked too much on Wednesday, and the crash came on so fast-I had to have a freind wheel me out of Home Depot and help me into the car. When I crash that hard-I close my eyes and it looks like a strobe light is flashing, and digestion goes very quickly. It feels like my stomach inflates. I had a couple of good days prior to this and wham, like clockwork, I get my ass handed to me. Lesson not learned.

From what I have read on Jack Kruse's site, I think this all originates in the brain/ gut which I am inclined to believe. I wish I could give a more detailed summary but I am fried right now. Undcvr explained this so well in a post a few weeks back. Are your liver function tests OK while on V?? Have you ever noticed kidney issues on creatine??

 

[heapsreal]

Heaps, I still have to learn the same lessons over and over. Glad you are doing better. I worked too much on Wednesday, and the crash came on so fast-I had to have a freind wheel me out of Home Depot and help me into the car. When I crash that hard-I close my eyes and it looks like a strobe light is flashing, and digestion goes very quickly. It feels like my stomach inflates. I had a couple of good days prior to this and wham, like clockwork, I get my ass handed to me. Lesson not learned.

From what I have read on Jack Kruse's site, I think this all originates in the brain/ gut which I am inclined to believe. I wish I could give a more detailed summary but I am fried right now. Undcvr explained this so well in a post a few weeks back. Are your liver function tests OK while on V?? Have you ever noticed kidney issues on creatine??

Kidney/liver function has been good. get results of my next round of labs next week. I have been on av's now for a few years and i think taking NAC the whole time may have helped with protecting the liver.
I am feeling abit run down after my long haul of shifts, i think it was too much so might take today off yet. need some more time to chill and recover.

jack kruse has some interesting theories, can be hard to get your head around too. leptin/insulin resistence info is good/interesting. i check his site every so often.

cheers!!!

 

[SOC]

still have intolerence to alcohol, had a few beers with some old work mates nothing huge. i was ok while still drinking but when i stopped i started to feel crappy. I know not suppose to drink on valcyte and havent had a drink for ages but thought i would give it a try since i have been feeling better. Lesson learnt lol.

Taking something to help your liver process that, I hope...? Valcyte + alcohol can be quite the challenge to your poor liver.

 

[heapsreal]

Taking something to help your liver process that, I hope...? Valcyte + alcohol can be quite the challenge to your poor liver.

I took a couple extra NAC before i went out and more when i got home to help the ol liver. I wish i could say i got rolling drunk and had a good time, atleast i would have got some benefit from it. Its crap when u cant have a couple of social drinks without feeling like crap. i will have to stick to my pepsi max. I dont think the past fortnight at work helped me, although i got through it, im now paying for that. now time for agressive resting.

cheers!!!

 

[SOC]

I took a couple extra NAC before i went out and more when i got home to help the ol liver. I wish i could say i got rolling drunk and had a good time, atleast i would have got some benefit from it. Its crap when u cant have a couple of social drinks without feeling like crap. i will have to stick to my pepsi max. I dont think the past fortnight at work helped me, although i got through it, im now paying for that. now time for agressive resting.

cheers!!!

Smart man.

It's impressive that you got through that crazy work schedule. Sucks that you can't have a couple of social drinks, but after the week you had, maybe it was as much the work as the alcohol. Good luck!

 

[heapsreal]

the crazy work schedule eventually nailed me as i woke up feeling like someone had hit me with a brick, neck glands painful, weak, unable to lift my arms up, just like a ebv/cmv reactivation. That was 2 weeks ago and i increased my famvir dose to more smaller doses throughout the day, still on valcyte at night. Last few days im feeling ok, abit bla still but moving forward again. I was a bit pissed off when i woke up like i did.

Doctors visit today, went ok, got my viral tests done, it said igg to past cmv infection, no viral titres, bloody idiots, thats what i wanted. So we have decided to try and increase valcyte dose to 2 tabs a night and stay with famvir in the morning, so when i wake up tomorrow i will either feel like i have been hit by a bus( likely), fantastic(unlikely), nothing(highly likely). Liver function test was spot on, so 4 yrs of antiviral use hasnt harmed me, yet??

We discussed ways to improve immune system and he said this is probably why my sinuses come back whenever i stop the doxy. He recommended a very expensive supplement that i just couldnt keep up using chronically, immunovir is in the affordable range, then other herbal things mainly the mushrooms like AHCC.

cheers!!!

 

[SOC]

heapsreal -- FYI Jarrow AHCC is on super sale at iherb
http://www.iherb.com/Jarrow-Formulas-AHCC-500-mg-30-Veggie-Caps/15326

 

[heapsreal]

2 days on higher dose and not feeling too bad from it. After the first day i felt abit fuzzy in the head, ears felt like they were burning and had a mild headaches the last 2 days but nothing that is really troubling me. So its stirring something up. I think taking my valcyte at night helps avoid some symptoms as i sleep through any possible symptoms flares from it with the help of my sleep meds. Stamina at work not too bad.

cheers!!!

 

[john66]

Keep those fingers crossed, glad you are doing better. J

 

[heapsreal]

Been a week at the higher dose of valcyte(900mg) and the last few days the brain fog and the brain sizzles have been increasing to a level the is abit more then uncomfortable and that extra fatigue. Feels similar but not as bad as my couple of initial trials of valcyte at the start of the year, I had sinus troubles back then which didnt help and i seem to have some now, maybe IRIS, my immune system is kicking up a notch. Had a horrible time trying to sleep last night and woke up in the middle of the night with racing ticker and hot sweats. So im going to lower the dose to 450mg for a day or 2 to give my little brain a rest. I think if i keep doing these types of 900mg runs and the back off to 450mg when i feel i need a break, eventually i will be able to tolerate the higher dose of valcyte all the time. So im taking this as a good sign as its stirring things up.

I have ordered immunovir so hopefully get it in the next week or two, that will be interesting adding it to the mix.
It sux, i manage to make it through the working week and now on days off im knackered??? --it happens

 

[heapsreal]

The increase in symptoms has gone after a few days at a lower dose of valcyte and i have gone back up to 2 tabs again. What i also did after first dropping the dose and not noticing much was also to drop the pregenolone cream as well. In the past it has had a similar effect of increasing symptoms too if i have been on it for awhile. So it might have been a combo of these things that was working against me. I think sometimes pregnenolone can build up in your system too, so i think i may need to take regular breaks from it, although it does seem to help with energy and cognitive stuff as well as joint stiffness etc.

Its hard to judge whats is doing what sometimes but i think juggling things and dropping some things for awhile can help. I think with us our body doesnt like to feel normal so if we get close to that our body chucks a wobbly just to put us off course, thats scientific jargon - chucking a wobbly, .

We will see how i go back on the 2 valcyte and if symptoms increase again within a week i will knopw its the valcyte, later on i will add the pregenolone back to see if it does something. I am leaning towards an IRIS/die off type effect as last night i increased the dose and today im getting painful neck glands again and post nasal drip is really bugging me, stirring something up. I have also had to slightly increase my sleep meds as its been harder the last couple of weeks to sleep. We all hope that when on a certain treatment that when symptoms increase its a sign of things to get better, well it bloody better .

Still waiting for my immunovir which hopefully should be here by the end of the week, plus i have a few other goodies(primiracetam, oxiracetam) on the way that i can experiment with that may help energy/brain fog.

cheers!!

 

[maryb]

Heaps I really admire how you've got a handle on so much of how meds work. combinations etc. Reading of your experiences is certainly a learning curve for me. You're so right about different combos etc. I would say to people don't dump the meds and suppl;ements if they don't work first time. For example I tried Samento several years ago, I couldn't even tolerate 1 drop a day, I started again a couple of weeks ago and am now up to 9drops daily. I've been on an a/biotic regime over the past 18months so maybe that's done something.
Hope the Valcyte trial continues well.

 

[SOC]

@heapsreal~
Have you given any thought to antiviral resistance with going on and off antivirals and/or taking low doses? It would be nasty to end up with a resistant strain of one of these herpesviruses.

 

[heapsreal]

@heapsreal~
Have you given any thought to antiviral resistance with going on and off antivirals and/or taking low doses? It would be nasty to end up with a resistant strain of one of these herpesviruses.

Hi SOC,
I have been on famvir consistently now for a few years but did come off a few times after a 12 month period to see how i would go which was backwards, going back on them brought slow improvement. the valcyte i did at the start of the year i dont think would be long enough to cause any problems. My recent dosage changes i didnt come off the valcyte but just lowered it for a few days to see if it was something to do with the meds. I dont really know, its possible. I suppose its possible if one stayed on antivrals for a long time to become resistant. im just going to stay on the valcyte for another 5 months at that point i will reassess about going off antivirals but i am still getting some mileage out of them.

 

[heapsreal]

I think maybe the secret to keep these viruses down once off antivirals is improve nk function and t cell function which im hoping to do with immunovir. I think improving my immune function is also going to help my sinus issues and be able to stop abx, i hope??
Vli in the other thread u mentioned not making antibodies, im not sure some of the immune modulators that improve nk and t cells would help with this as its the b-cells that make the antibodies, but that is just a guess. I assume if nk/tcell function is good then that might be enough to keep many of these viruses latent, maybe?? b-cells would be good as it would make specific immune cells to attack those specific viruses??

 

[SOC]

Hi SOC,
I have been on famvir consistently now for a few years but did come off a few times after a 12 month period to see how i would go which was backwards, going back on them brought slow improvement. the valcyte i did at the start of the year i dont think would be long enough to cause any problems. My recent dosage changes i didnt come off the valcyte but just lowered it for a few days to see if it was something to do with the meds. I dont really know, its possible. I suppose its possible if one stayed on antivrals for a long time to become resistant. im just going to stay on the valcyte for another 5 months at that point i will reassess about going off antivirals but i am still getting some mileage out of them.

I'm more concerned about stopping the weaker virus from replicating, but not getting at the stronger elements of the virus because the dosage isn't high enough -- or going off periodically lowers the amount of antiviral in the body. That would allow those elements of the virus that are more resistant to the antiviral to propagate until one has a virus that is completely resistant to the antiviral. This is how antibiotic resistance has occurred.

I heard from a reliable source that there are already herpesviruses becoming resistant to Valtrex in areas where there is high use among people less likely to use it as directed (eg sex workers and their customers).