How long before improvement with valcyte?

[copi2k]

hello,

i would like to know about the treatment with valcyte:

1. which viruses did you treat?
2. which dosage of valcyte did you take?
3. how long did it take to see improvement on valcyte?


best regards

 

[minkeygirl]

I've been on 450 mgs about 7 weeks for CMV.

I upped to 900 but side effects are too bad to tolerate. I am going to try 675 once I get lab results and see if I can manage on that.


So far nothing noticesble although I did feel better on 900

There are a lot of threads about this. @Butydoc had some updates. @leokitten Also @heapsreal

 

[copi2k]

I hope some more will reply..

I startet 10 days ago with valcyte.. but i took valcyte 2 years ago for 5 months. But i could not tolerate a good dosage.. i took in the beginning 2x1 valcyte a day.. but had to reduce to 1x1 a day because i could not handle the side effects or herx or what ever it was. But very important, even on 1x450mg valcyte my CMV titers went downwards.. i measured them 3 times. In the beginning i had very high titers of 65 (over 2 = positive).. but it was not a normal test on IgG or IgM.. it was a lymphocyte transformation test.. it measures how strong your immune system is reacting to different antigens.. for example for cmv ebv hhv6 etc. Ebv and HHV6 were normal.. about a score of 6, this is showing a positive reaction too, but it is necessary to hold the infections in latent stage. A titer of 65 shows very strong reaction and so possible reactivation. At the End of the 5 Months my CMV titers were 17.. but then i went off valcyte and did only 1 months of 1500mg valtrex a day. Last time the test showed that my CMV titers raised again from 17 to 27.. thats why i actually taking valcyte again.
The first 4 days i took 1x1, 2x1, 1x1, 2x1 and then constant 2x1 a day.. First week i recognized immediate improvement of symptoms.. but now since 3 days my symptoms increased again until yesterday and are starting to dimish again..

Im wondering about this up's and down's ... last week i thought wow.. big improvement.. now this thing is startin to roll in positive direction. But ok.. i think in the beginning there will be flares .. i hope that these flares will disappear in 2-3 weeks.

 

[heapsreal]

Most people who get mono , not cfs, can take 6 months before they feel better. Guessing the infections is controlled within weeks by the immune system but the damage and drain on the
Body is why it takes a healthy person a long time to recover.

so i think in cfsme once the viral load is down to normal and kept down, we then ppossibly have to also go through a period of time like a mono recovery.

I took valcyte for approx 18months but i dont think i got any more improvement from valcyte after the 6 month mark. Most of my time was just on 450mg a day plus famvir. I did use 900mg for several months and got more improvement.

I remained on valcyte for so long mostly because i was scared of a relapse. But i have mostly maintained things by staying on famvir. Still having ups and downs etc but i think famvir reduce the time i spend down by quite alot compared to pre antivirals .

Its not the be all and i think we need to work on improving other things like hormones etc. Another things is dr lerner found that many with these viruses that didnt improve on avs, that they probably had a co existing bacterial infection like lyme or mycoplasma etc that also needed treatment .

I think that your cmv titres coming down is promising and maybe consider using famvir post valcyte as well. I would consider trying a broad spectrum antibiotic like doxycycline for a few months as a trial . Its possible to have a bacterial infection going on as research shows cmv itself is immunosuppressive and could let other bugs in.

nothing is black and white , also we dont know how anyone will respond unless they have a go.

good luck.

 

[copi2k]

hey heaps,

7 years ago, when the cfs started.. i was first diagnosed with lyme. But my blood labs on lyme were not really positive, only 1-2 tests were slightly positive. In the beginning i had the OspC band IgG positive in the immonoblot.. but this was the only band i was positive for. I've read different papers for diagnosing lyme and all papers suggest that there have to be a minimum of 2 bands in the immunoblot for lyme.. i never had 2.. and another test with Borrelia-Antigen was negative too. So my LLMD 7 years ago put me on antibiotics based on my symptoms (i had NO fascialparesis or painful swollen joints etc.).. 3,5 years i took different antibiotics for lyme.. different protocols and nothing changed so far that time. The last test i done showed no single band in the immunoblot and the IgG was not very high positive.. everything negative. So.. maybe lyme was a culprit too in the beginning.. but i think because of the treatment with antibiotics that there is no more symptom caused by lyme maybe.
I am not only positive for CMV.. but also for EBV because i have very high immediate early antigen (BZLF1) titers which indicate a lytic infection.. reactivation. The thing I am wondering about too is, that my immunsystem is not fighting the HSV1+2 virus..there is no reaction to it. I never had herpes too.. but my friends have herpes and we shared a lot of cups when drinking beer for example.
I'm wondering if the virus is in a region, where the immune system can't reach well and thats why it takes so long to recover. A doctor here in germany has some patients which are immunocompetent (so.. no immunedefect) and showing active CMV infection which is lasting 1-6 months.. when he treated this patients with valcyte, symptoms gone away within 2-3 months.

I want to take the valcyte until the antigen-test on cmv is showing normal activitiy like on EBV or HHV6.. then i want to switch to famvir (which i prefer) or valtrex.. the famvir would be like 2x500 or 3x500 a day.

 

[heapsreal]

@copi2k
it could be worth adding famvir while on valcyte if hsv 1 and 2 is present and titres not improving, also ebv i guess. An option. Some in the past found valcyte would lower cmv and hhv6 but not other viruses so they would add famvir or valtrex for those.

sounds like u sorted lyme?? Always worth keeping an eye on it i guess. I think we can be a soup of infections .

I don't have an answer but its worth trying to improve nk function and immune system in general.

its a constant battle ? ??

 

[copi2k]

@heapsreal

yeah i will add Famvir ass soon i'm going on 1x1 valcyte a day.

Lyme is sorted but the last test was 2 years ago .. next months I will do another test that will hopefully confirm, that there is nothing to care about.
The weird thing is, that my NK-Cellfunction is very good.. you know about CD4 and CD8.. I remember, that you said that your CD8+ always were high because of the viruses.. that means your immunsystem is cellular responsing to the virus.

My CD4 and CD8+ cells are low.. a little under the lower reference range. Thats strange, because the Response to Antigens is positive.. also the IgG's are positive.. but cellulary my immunsystem does not care about the viruses because CD4 and CD8+ are at the lower end of reference range.. on the other hand my neurtophils are low and monocytes are high, which indicates a chronic virus infection.

I think everyone is different and has to choose one direction.. 7 years ago, I've chosen the wrong way, the lyme way.. today i think (because i had enlarged lymph nodes and inflammed tonsils and high positive early antigen titers on EBV) that Viruses.. especially EBV anc CMV have been the main culprit

Edit: do you know if Famvir is working on CMV also?

 

[heapsreal]

@heapsreal

yeah i will add Famvir ass soon i'm going on 1x1 valcyte a day.

Lyme is sorted but the last test was 2 years ago .. next months I will do another test that will hopefully confirm, that there is nothing to care about.
The weird thing is, that my NK-Cellfunction is very good.. you know about CD4 and CD8.. I remember, that you said that your CD8+ always were high because of the viruses.. that means your immunsystem is cellular responsing to the virus.

My CD4 and CD8+ cells are low.. a little under the lower reference range. Thats strange, because the Response to Antigens is positive.. also the IgG's are positive.. but cellulary my immunsystem does not care about the viruses because CD4 and CD8+ are at the lower end of reference range.. on the other hand my neurtophils are low and monocytes are high, which indicates a chronic virus infection.

I think everyone is different and has to choose one direction.. 7 years ago, I've chosen the wrong way, the lyme way.. today i think (because i had enlarged lymph nodes and inflammed tonsils and high positive early antigen titers on EBV) that Viruses.. especially EBV anc CMV have been the main culprit

Edit: do you know if Famvir is working on CMV also?

There has been reports from others here that show famvir does work towards cmv/hhv6.

if your immune tests generally are low, then possibility its immune exhaustion . This occurs frequently in hiv and hepatitis , so why not cfsme too.

google immune exhaustion as info on hiv and hepatitis etc treatment seem to be aimed at treating current infections .

I would guess that hormones would be low so might be worth looking into as they can help improve this immune exhaustion .

 

[heapsreal]

Adding famvir to valcyte might be a way of treating cmv/hhv6 without needing to increase valcyte dose especially if one gets alot of side effects.

its just a theory of mine rather than any info or experience i have read. But worth a shot.