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Complicated Valcyte Experience

Charles555nc

Senior Member
Messages
572
I failed trying Valcyte twice before, and now Ive been on Valcyte about 2 months, having to take the weekends off...so 5 days on, severe symptom exaggeration, then 2 days break before doing it all over again. The first couple days on Valcyte, my sleep schedule improved immensely, but then my symptoms spiked later on. I was on Famvir for 3 months before trying Valcyte.

Ive found the .5mg minimum dose LDN every 2 days, helped keep my immune system functioning while Im on the Valcyte, and reducing my symptoms mildly. On my days off the LDN makes me feel great by itself.

I started at one pill a day of Valcyte and have tried several times to up the dose to twice a day. It hurts my nerves all over my body and my symptoms jump through the roof.

Any advice?
 

Charles555nc

Senior Member
Messages
572
Positive for hhv6, cmv, mycoplasma, c pneumonia, epstein barr, coxsackie b virus. Im also on low dose doxy for Rosacea (100mg).
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Maybe stay on one pill a day and small dose of famvir?
Try taking valcyte at night, hopefully that way sleep through some of the side effects, if u use sleep meds this will also help i think??
How long u been on the doxy? it suppose to be effective against the myco and cpn, if on doxy a short time could also be having die off rection from that??
Valcyte die of really sux, hope things improve soon.

cheers!!
 

Charles555nc

Senior Member
Messages
572
Thing is, Im on the 100mg "sub antibiotic dose" doxy for Rosacea, so I dont know if it even effecting the mycoplasma and cpn.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Thing is, Im on the 100mg "sub antibiotic dose" doxy for Rosacea, so I dont know if it even effecting the mycoplasma and cpn.
How long u been on it for?
Generally that dose is bacteriostatic, meaning it stops replication, from what i have read 400mg is bacteriocidal ie kills bacteria?? But also doxy is said to have anti-inflammatory effects which one would think it would help, but this illness never plays by the rules.
 

SOC

Senior Member
Messages
7,849
Maybe go back to the Famvir and go after the mycoplasma, c pneumoniae, and coxsackie b virus? Perhaps then you could better handle the Valcyte....?

Antivirals stop replication; they don't kill the virus. Antivirals depend on your immune system to kill infected cells, so if your immune system is already preoccupied with other infections, the antivirals are probably not as effective.

Antibacterials actually kill the bacteria, so attacking them first has some logic. I had good luck with Clarithromycin for C pneumoniae. Equilibrant took care of my coxsackie b. I didn't have huge antibody titres to either, though. YMMV
 

Charles555nc

Senior Member
Messages
572
I have no symptoms at all from taking the doxycycline 100mg, once a day...

I just had more unusual, but good luck. I started taking 15 drops of food grade hydrogen peroxide in a large glass of distilled water, upon awakening and with no food (and no food for at least an hour afterward), and my symptom spikes from the Valcyte, went down by about 60%. Im also going to re-add famvir...but I wonder whether I was possibly hydrogen peroxide deficient (white blood cells use it)...or had some intestinal infection that is clearing up with the hydrogen peroxide...

If the evil nc medical board wasnt so nazis, I would be able to find a local doctor for iv hydrogen peroxide.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
my valcyte side effects improved alot once i got other issues sorted out, maybe us who get bad side effects all have these other issues we need to sort out first.

good luck.
 

Charles555nc

Senior Member
Messages
572
I had the energy to go through my profile page and start 4 or 5 "conversations" (which I guess are like PMs?) with people :D I messaged you SOC, in particular after reading your whole Valcyte thread.

Im uping my LDN dose to 1mg a day, and maybe can increase my Valcyte dose to 900mg.
 

SOC

Senior Member
Messages
7,849
I had the energy to go through my profile page and start 4 or 5 "conversations" (which I guess are like PMs?) with people :D I messaged you SOC, in particular after reading your whole Valcyte thread.

Im uping my LDN dose to 1mg a day, and maybe can increase my Valcyte dose to 900mg.

Congratulations on finding some energy! :) Good luck with the Valcyte. Keep us posted.