Trying valcyte again, so far so good

[vli]

I would say i was a 6 before valcyte going by dr lerners scale and as long as sleep and sinuses are ok im probably a 7 and an 8 if i dropped 1 work day a week and or well rested. I still can easily over do it so its still important to pace myself. pushing myself could easily wreck my sleep and drop me to tv bound, so i have learnt a few times. Maybe another 4 months can help me to stabilise myself??

so u're basically saying in six mos of val., u feel u've only improved by one point on dr lerner's scale???

 

[heapsreal]

so u're basically saying in six mos of val., u feel u've only improved by one point on dr lerner's scale???

Currently with my sleep and sinuses treated i would be an 8, so 2 point improvement from 6 points on famvir and was originally a 3 before any antivirals, 1-2 points doesnt sound like much but its additive to the other things i have done. I think if i just started valcyte when at a 3 i would have improved to an 8 which would be a 5 point improvement, but also 12 months after starting famvir i did get to a 9 where i was working full time with no problems and able to exercise reasonably hard but eventually crashed i think because i didnt really look deep enough into other aspects of being healthy. I think the secret is having a strong enough immune system and hormonal system to maintain these gains. When i was a 9 my nk function was still very low, so i think this makes us prone to being up and down.

This is the reason why im trying to fix my sleep and strengthen my adrenal hormones so i can function and recover from activity.Its an up and down type of illness but my ups are higher and my lows dont last as long when on antivirals. Im currently sitting here with my boots on and about to do a short work out, so at the moment have some energy in the tank. I have gone through periods where i have been able to exercise before but i do seem to crash after a few weeks at most. I suppose its testing the waters when exercising to see how my body will recover from it.

I think if one has had this illness for any length of time then it takes its toll on other parts of the body, so even if we think an infections is the main problem we still need to clean up the damage left over from it. I do believe that cfs/me does also cause and adrenal fatigue/dysfunction from the chronic stress of this illness, so even if the infection is gone we still need to overcome things like adrenal dysfunction and sleep dysfunction to be able to fully recover.

My adrenal hormones were low, my dhea had bottomed out and my morning cortisol was only just in the normal range. dhea and pregnenolone supps have improved this and its only this year that i have really got on top of it. Sleep problems have been helped greatly by lowering night time cortisol with phosphatidylserine and a few other nutrients as well as sleep meds. When i was a 9 after 12 months on famvir i wasnt treating the above to any great degree which i think is the reason why i went back down and didnt maintain my gains. Maybe cmv infection went deeper??? but now i think the valcyte has hit the cmv harder and im hoping the other measures make my body stronger and resistent to crashing. Im currently using immunovir to strengthen my nk function and i take a boat load of antioxidants.

I dont think we can rely on one treatment like antivirals to fully help us recover but we need to treat it in a variety of ways, well thats my plan anyway. The things i have treated are abnormalities my doc has found in testing as well as treating my worst symptoms.

 

[heapsreal]

so u're basically saying in six mos of val., u feel u've only improved by one point on dr lerner's scale???

http://www.treatmentcenterforcfs.com/energy_index_score/index.html
2 points on lerners scale can be the difference between not working and working part time or working part time to working fulltime. AT an 8 out of 10 im reasonably symptom free if i dont over do things but a 6 out of 10 i still have alot of symptoms like headaches, brain fog etc etc. i dont fit exactly into lerners scale as i couldnt work reduced ours in a day eg 4-6hrs the option wasnt available, i pushed myself to work 10 hour shifts but only did 2 a week and even then took sick days as well, the rest of my time i say i spent in bed not sleeping(i think they call it resting).

So not just antivirals but also other treatments have improved me from a 3 out of 10 and feeling like crap to an 8 out of 10 relatively symptom free if i stay within my boundaries. Like i mentioned before even at a 6 i still had alot of symptoms and its a matter of pushing myself to work and function with aggressive resting when not working.

 

[niall]

I am still taking famvir 250mg a day while on valcyte and will continue valcyte at 250mg twice a day when i finish the valcyte and hopefully keep the improvements i have made??

Thanks Niall

Presumably, you meant to say that you will continue on Famvir when you finish the Valcyte and that sounds like a good strategy. I have been taking Famvir 250mg/day for almost a week after the 125/day build up. I am functioning at about a 70% capacity and continue to feel fairly normal with lingering myalgia, headache and sore throat. Not the terrible feeling of myalgia and debilitation that comes with high viral titers which I had practically all the time before Ampligen. Such a relief to have that dog off my back. I am hoping that the pulsating sound in my left ear will go away in time as the Famvir further reduces the herpes viruses in my blood and brain. I will post again if I notice any changes in my condition.

 

[snowathlete]

from a 3 to a 8 through any treatment is pretty fantastic. I'm pleased for you Heapsreal. I hope that if i start anti-virals I have the same sort of gain. I am probably not as bad as a 3 to start off either.

 

[heapsreal]

Presumably, you meant to say that you will continue on Famvir when you finish the Valcyte and that sounds like a good strategy. I have been taking Famvir 250mg/day for almost a week after the 125/day build up. I am functioning at about a 70% capacity and continue to feel fairly normal with lingering myalgia, headache and sore throat. Not the terrible feeling of myalgia and debilitation that comes with high viral titers which I had practically all the time before Ampligen. Such a relief to have that dog off my back. I am hoping that the pulsating sound in my left ear will go away in time as the Famvir further reduces the herpes viruses in my blood and brain. I will post again if I notice any changes in my condition.

Thanks for correcting me niall, yes i will stay on famvir a while longer when i finish valcyte.
I would say i still felt like i had a lot of symptoms until i got to an 8 out of 10 on dr lerners scale. Even at a 6 i would say i was still feeling like crap but at an 8 things are good, stamina is good, some stiffness in the muscles, sleep is still abit hard, but i can exercise a little and daily no daily headaches and dog tired feeling. I still think its important to pace yourself, i still feel like if i pushed myself to hard then it wouldnt be a good thing. Im getting there though.

cheers!!

 

[niall]

Thanks for correcting me niall, yes i will stay on famvir a while longer when i finish valcyte.
I would say i still felt like i had a lot of symptoms until i got to an 8 out of 10 on dr lerners scale. Even at a 6 i would say i was still feeling like crap but at an 8 things are good, stamina is good, some stiffness in the muscles, sleep is still abit hard, but i can exercise a little and daily no daily headaches and dog tired feeling. I still think its important to pace yourself, i still feel like if i pushed myself to hard then it wouldnt be a good thing. Im getting there though.

cheers!!

I remember that Dr. Rey said that when I achieve viral latency, she will probably maintain me on 125mg of Famvir for an indefinite period of time, which I took to mean until a better treatment is developed for our illness. The problem of recurrence of high viral titers is, in her view, very likely. So keep that in mind for the long term future.

 

[heapsreal]

I remember that Dr. Rey said that when I achieve viral latency, she will probably maintain me on 125mg of Famvir for an indefinite period of time, which I took to mean until a better treatment is developed for our illness. The problem of recurrence of high viral titers is, in her view, very likely. So keep that in mind for the long term future.

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!!

 

[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!!

How much Imunovir are you taking? How does it make you feel? My natural killer cell function is within the normal range and I was quite relieved that Dr. Rey didn't put me back on Imunovir as it made me feel bad. A bit like that the cure is worse than the condition.

 

[heapsreal]

How much Imunovir are you taking? How does it make you feel? My natural killer cell function is within the normal range and I was quite relieved that Dr. Rey didn't put me back on Imunovir as it made me feel bad. A bit like that the cure is worse than the condition.

I have just increased the dose to 3 tabs twice a day, when i started on 1 tab twice a day i felt yuk from it, but now i dont get any negative effects from it. At the moment i cant really tell if its helping or not, this could be because the valcyte has helped me alot?? my nk function was very low and was measured in a study but now i dont have access to nk function testing unless there is another study.

So u were on immunovir and it improved your nk function, is that right but now u dont need it??

 

[niall]

I have just increased the dose to 3 tabs twice a day, when i started on 1 tab twice a day i felt yuk from it, but now i dont get any negative effects from it. At the moment i cant really tell if its helping or not, this could be because the valcyte has helped me alot?? my nk function was very low and was measured in a study but now i dont have access to nk function testing unless there is another study.

So u were on immunovir and it improved your nk function, is that right but now u dont need it??

Yes, my NK function was in the normal range before I started the Ampligen and I can only attribute that to the Imunovir. I guess the Ampligen built on that so I had a good outcome from the treatment.

 

[vli]

I guess the Ampligen built on that so I had a good outcome from the treatment.

But I read somewhere that you didn't feel ampligen had as strong antiviral effects as might have been touted right?

 

[niall]

But I read somewhere that you didn't feel ampligen had as strong antiviral effects as might have been touted right?

I think its performance depends on the individual patient being treated. Ampligen stimulates the patient's own antiviral pathways. It does not target specific viruses. Ideally. a patient should receive an antiviral medication targeting herpes viruses while also receiving Ampligen. However, I spoke to a representative of Hemispherx and, contrary to that which has been previously stated, this is not allowed. She told me that the patient must stop the Ampligen and go on the antiviral medication. Then the patient may go back on Ampligen after stopping the antiviral.

 

[heapsreal]

I think its performance depends on the individual patient being treated. Ampligen stimulates the patient's own antiviral pathways. It does not target specific viruses. Ideally. a patient should receive an antiviral medication targeting herpes viruses while also receiving Ampligen. However, I spoke to a representative of Hemispherx and, contrary to that which has been previously stated, this is not allowed. She told me that the patient must stop the Ampligen and go on the antiviral medication. Then the patient may go back on Ampligen after stopping the antiviral.

I think the makers of ampligen are wanting it as the sole treatment, no av's as they want to see how effective it is on its own. I think if one is in the herpes subgroup then adding av's to amp would surely be a good thing, 1+1=3 type of thing.

 

[heapsreal]

Nine months on valcyte and everything is going well, managing well at work, do some exercise etc being on immunovir may be helping but hard to tell as I'm doing well with valcyte. Sleeping well mostly which I mainly put down to using phosphatidylserine. My only issues are still sinuses but if I keep rinsing them, nasal steroids and increase abx dose when i need too I'm doing ok, but I will talk further options with my doc i see in a couple of days. I will also talk with him about how long to stay on valcyte, stopping valcyte is scary thought as one doesn't want a relapse, but also scary being on a med like this for a longtime. It's promising to see people functioning well long term on val without any issues, as long as a couple of years. Maybe a maintenance dose of one tab a day is an option along with my low dose famvir???

Cheers!!!

 

[vli]

Ideally. a patient should receive an antiviral medication targeting herpes viruses while also receiving Ampligen. However, I spoke to a representative of Hemispherx and, contrary to that which has been previously stated, this is not allowed. She told me that the patient must stop the Ampligen and go on the antiviral medication. Then the patient may go back on Ampligen after stopping the antiviral.

Yes, this is exactly what happened to me and partly why I've stopped, and am leaving the US on 1/31. I know valcyte did not work that well for you but it's what I wanted to start.

 

[heapsreal]

I have 2 months to go and that will be 12 months on valcyte. Still feel good. Just had about 4 weeks off immunovir where i took cycloferon to help improve immune system. Monday i stop cyclo and start immunovir again, mon/wed/fri 3 tabs twice a day and tues/thurs 1 tab twice a day. Still on famvir and will continue after i stop valcyte, will also continue immune modulators as well.

It seems like ages since i have done any testing and will get some done soon and get results end of march. iM HOPING TO SEE CD8 T CELLS DOWN TO NORMAL WHICH IS MY GUIDE TO viral load and has been above normal range ever since i tested it. My nk function has been low but cant test it now but will get numbers tested, its always been in the low normal range so hoping the immune mods have increased nk numbers to high normal.

Im probably at an 8 out of 10(dr lerners fatigue scale) from a 3 pre any antivirals which would be almost 3 yrs ago now i started on famvir. Im working full time and managing well, usually buggered by the end of the working week but a sleep in usually helps that. Do some small amount of weight training once or twice a week, nothing strenuous but going ok. Generallly if im well rested and my activity is low as in watching tv etc and very basic stuff im almost symptom free, symptoms only pick up if very active but seem to recover ok from it with a good sleep and a rest day. Im slowly going to increase my activity level. pre antivirals i felt sick all the time, head pounding, feeling wiped out, activity would just wipe me out for several days, brain fog etc etc. Sleep is still an issue but i have it managed with medication which was hit and miss pre antivirals, so i think the av's have helped me in this aspect but not a complete fix there, phosphatidyle serine has also been a help for me with sleep. I also think adrenal dysfunction is a secondary issue for me and pregnenolone and dhea have helped there. Going to talk to my doc about low dose hydrocortisone when i see him next.

In a couple of month time i will post some lab results. So for me good things have come from antivirals.

cheers!!

 

[RUkiddingME]

I have 2 months to go and that will be 12 months on valcyte. Still feel good. Just had about 4 weeks off immunovir where i took cycloferon to help improve immune system. Monday i stop cyclo and start immunovir again, mon/wed/fri 3 tabs twice a day and tues/thurs 1 tab twice a day. Still on famvir and will continue after i stop valcyte, will also continue immune modulators as well.

It seems like ages since i have done any testing and will get some done soon and get results end of march. iM HOPING TO SEE CD8 T CELLS DOWN TO NORMAL WHICH IS MY GUIDE TO viral load and has been above normal range ever since i tested it. My nk function has been low but cant test it now but will get numbers tested, its always been in the low normal range so hoping the immune mods have increased nk numbers to high normal.

Im probably at an 8 out of 10(dr lerners fatigue scale) from a 3 pre any antivirals which would be almost 3 yrs ago now i started on famvir. Im working full time and managing well, usually buggered by the end of the working week but a sleep in usually helps that. Do some small amount of weight training once or twice a week, nothing strenuous but going ok. Generallly if im well rested and my activity is low as in watching tv etc and very basic stuff im almost symptom free, symptoms only pick up if very active but seem to recover ok from it with a good sleep and a rest day. Im slowly going to increase my activity level. pre antivirals i felt sick all the time, head pounding, feeling wiped out, activity would just wipe me out for several days, brain fog etc etc. Sleep is still an issue but i have it managed with medication which was hit and miss pre antivirals, so i think the av's have helped me in this aspect but not a complete fix there, phosphatidyle serine has also been a help for me with sleep. I also think adrenal dysfunction is a secondary issue for me and pregnenolone and dhea have helped there. Going to talk to my doc about low dose hydrocortisone when i see him next.

In a couple of month time i will post some lab results. So for me good things have come from antivirals.

cheers!!

That's absolutely fantastic Heaps. It's no nice to see some people are getting better!! From a 3 to an 8 is wonderful and thanks for sharing your experience with us!

 

[undcvr]

Are you detoxing while on the Valcyte ? I thot we talked about that.

 

[maryb]

Wow heaps that is fantastic news, you've worked really hard to get where you are with it all I know though, I suppose it has helped having a supportive doctor, can't remember do they know what your a/viral regime is?Fingers crossed for your lab results hope they show things have improved, you're an inspiration