Post Valcyte Fatigue: Has anyone else experienced this?

[zxxxz]

In a nutshell, tested positive for EBV, HHV6 and Varicella Zoster & low Natural Killer cell function by Dr. Kogelnik. I was prescribed Valcyte at 1800mg per day for 3 weeks followed by 6 months of 900mg day.

It was well tolerated and during the 5 month mark I was able to walk for 25 minutes twice a week a positive sign of improvement.

Suddenly at the 5 month mark depression & very heavy limb-tired, fight to stay awake symptoms came on. It was very bad. I stopped the Valcyte and thankfully these side-effects went away. Felt pretty good.

Blood tests showed one of the liver enzyme elevated & triglycerides sky high. Indications of fatty liver.

Post Valcyte

Within a week of stopping the Valcyte my energy levels dropped and I was back to the type of fatigue I would associate with CFS. The sort of thing where one has to monitor their energy envelope & must refrain from too much activity. Walking around a large store brings fatigue of the sort that requires resting. Too much exertion requires a crash nap... which is that sort of sick sleep...

My question: I am surprised that I took this step back to where I was 18 months ago. I had improved beyond this sort of thing in the time before starting Valcyte. Has anyone else experienced this sort of relapse upon stopping an anti-viral?

If so was it temporary; how did you take a positive step forward again?

 

[heapsreal]

Ialso used famvir and have stayed on famvir but after 12 months of valcyte I stopped and 2 months later relapsed so went back on valcyte for a further 4 months. Stopped recently due to liver enzymes and neutropenia worsening.

Neutropenia seems to be causing ongoing sinus issues so need to raise neutrophil count. So far thingd are ok but I will wait till I get past the 8 week post valcyte mark first. As I said im still on famvir to help keep viruses suppressed and this time im on inosine to hopefully increase nk function.

I think getting nk function up and keeping it up is maybe the secret to avoiding post valcyte relapse.

Also increased my nac dose for a few months until liver enzymes come down too.

Cheers

 

[zxxxz]

I've had sinus issues as well over the years. They can bring phantom smell sometimes. I would suggest colloidal silver nasal flushes. Described here -> http://www.colloidsforlife.com/silver_Sinus_Infection_Sinusitis.html

I was told that Varicella virus can be active in the nasal passages so I use these flushes/floods as an anti-viral as well. It always works for me. You might find it helpful as well.

After I made the post here I remember that I took 500mg of Imunovir (Isoprinosine from brandmedicines) every day with the Valcyte but stopped it for some reason two weeks before stopping Valcyte. Maybe that's why I ended up feeling poorly. I went and took a tab of Imunovir an hour ago & feel better.... I think Imunovir is the one thing that consistently helps.

Dr. Kogelnik told me if he had a drug that would boost NK cell function he'd give it to every patient because it was the single unifying constant among his patients. But for some reason he didn't much believe in what's out there... calling them nutraceuticals and saying a 1-3% gain isn't good enough when we need to have 100% increases.

For the liver I'm using Milk Thistle. Alpha Lipoic Acid (ALA) is too strong for me but might work for you. I wish I could deal with it's acidity. I might use NAC as well.

Thanks for replying. ...I didn't get the big CURE from Valcyte... but maybe I should cut back & use just 450mg/day while trying to boost NK function. Maybe switch to another anti-viral. Kogelnik said that Valcyte had the best penetration power and that's why he prescribed it... not the most potent but the best at getting into the cells.

 

[heapsreal]

I think the 100% cure is rare but many who fit the herpes sub group can make good improvements. It's Definately helped me but still have symptoms. I'm able to treat sinus infections but it just returns when treatment stops which is why we think it's related to the neutropenia from valcyte. The onset of the sinus issues was just prior to starting valcyte.

I guess we have to try something to increase nk function but like u say there's not a lot of things that work for everyone. I think it's possibly the secret to keeping gains from antivirals.

Doses of immunovir are generally higher then 500mg, upto 3000mg in divided doses with doses varying and two days off a week.

Be interesting to hear from others who responder well to valcyte and to know if or how long they have maintained their improvements and if they did anything special like immune mods etc

Cheers!!!

 

[DREBS]

ZXXXZ I'm in the same boat (Post-viral fatigue) with super high HHV-6, EBV, and Parvo B-19 antibodies.... However I am taking a different approach to it. Have you ever got your methylation mutations tested or had the methylation pathways analysis done through seeking health. Reasoning being if you have a methylation block like so many on this site your body will not be able to silence the expression of those viruses. Methylation has many function in the the bosy such as detox, neurotransmitter production, repairing DNA and RNA which is where it is vital in supperssion of the expression of viruses in your body. If your methylation cycle is down the Valcyte is not going to be enough on it's own to wipe out the virus, it suppresses it but eventually the virus will beat it if you not methylating. I suggest you look in to methylation for your key. Why did we get a virus millions of americans get but it really messed us up? Beacuse of our genetics aka Methylation Mutation.

 

[Christopher]

ZXXXZ I'm in the same boat (Post-viral fatigue) with super high HHV-6, EBV, and Parvo B-19 antibodies.... However I am taking a different approach to it. Have you ever got your methylation mutations tested or had the methylation pathways analysis done through seeking health. Reasoning being if you have a methylation block like so many on this site your body will not be able to silence the expression of those viruses. Methylation has many function in the the bosy such as detox, neurotransmitter production, repairing DNA and RNA which is where it is vital in supperssion of the expression of viruses in your body. If your methylation cycle is down the Valcyte is not going to be enough on it's own to wipe out the virus, it suppresses it but eventually the virus will beat it if you not methylating. I suggest you look in to methylation for your key. Why did we get a virus millions of americans get but it really messed us up? Beacuse of our genetics aka Methylation Mutation.

Possibly.