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Valcyte dangers

saint

Senior Member
Messages
218
demeirleir doesn't prescribe valcyte to my knowledge...I think he uses other antivirals such as GCMAF...and he is probably the best specialist in the world.

valcyte is available cheaply in india. they have been making generic valcyte for many years, despite continued litigation by roche.

I think apotex is making it in Canada despite pending lawsuit by roche.
 

saint

Senior Member
Messages
218
Can you please tell me where Dr. Demerleir is located? I never came across his name. I never heard of GCMAF. Have you used it?

Didn't get the Valcyte. Drugstore going to see if the coupon will take money off next week. We have $5,000 deductible on our insurance. Insurance plans are getting worse, with high deductibles.

Wondered if anyone has tried iodine as an antiviral.
 

Daffodil

Senior Member
Messages
5,875
Can you please tell me where Dr. Demerleir is located? I never came across his name. I never heard of GCMAF. Have you used it?

Didn't get the Valcyte. Drugstore going to see if the coupon will take money off next week. We have $5,000 deductible on our insurance. Insurance plans are getting worse, with high deductibles.

Wondered if anyone has tried iodine as an antiviral.

i took valcyte and valtrex, high dose, for 3 years and had no improvement really.

dr. kenny demeirleir has clinics in brussels, norway, and reno, nevada. he is heavily involved in research. he and his colleagues have published papers showing the autoimmune nature of CFS.

i have used gcmaf for a few yrs. it has helped me.
 

Kati

Patient in training
Messages
5,497
Genentech Foundation has a very generous patient assistance program. i have been their recipient for 2 different drugs. They will go out of their ways to help.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Has anyone been able to kill these viruses using oregano oil or olive leaf?
I used large doses of very good quality, high strength olive leaf extract for months and in my case it wasnt of any help at all (I get a lot of viral problems eg reactivity herpes and viral symptoms.. Ive had severe EBV and carry CMV). Good olive leaf extract isnt cheap either thou of cause far cheaper then what you want to take.
 

saint

Senior Member
Messages
218
I'm not sure if I will be offered Valcyte (don't know HH6 status), but I had no idea it requires weekly labs. What are they looking for with such frequent labs? Do all the antivirals require such caution and vigilance?
 

saint

Senior Member
Messages
218
If you can get to see Doc Pridgen, he gave me the meds for free (may God bless him). You can look him up and email him. He's using Famvir & celebrex. Tough on stomach but I keep taking vitamin A & zinc to heal, and drink the real ginger ale - with real ginger in it.
 

saint

Senior Member
Messages
218
Genentech Foundation has a very generous patient assistance program. i have been their recipient for 2 different drugs. They will go out of their ways to help.
Thanks for that bit of info! I will contact them. What drugs do they assist with?
 

saint

Senior Member
Messages
218
@SDSue I agree with you. I'm homebound and will also try pretty much anything. I can't be too incapacitated because I have no help but barring that I'm game.

I haven't tried Valcyte because 1. I can't afford it. 2. Even if I could my doc won't rx it and 3. I can't get to a lab weekly for blood work.

IMO if you have the opportunity to try something that could really help do it.
If you can make the trip, Doc Pridgen gave me meds for free (he is very kind man). I had to travel to Alabama which actually cost less than the Valcyte prescription!
 

saint

Senior Member
Messages
218
I used large doses of very good quality, high strength olive leaf extract for months and in my case it wasnt of any help at all (I get a lot of viral problems eg reactivity herpes and viral symptoms.. Ive had severe EBV and carry CMV). Good olive leaf extract isnt cheap either thou of cause far cheaper then what you want to take.
This is why I like sharing experiences. If olive leaf didn't work for you, then I guess you do need the 'bigger guns' - Valtrex, Famvir etc. so I'm not going to waste money on.

I'm still curious about iodine. Bought some at Vitacost - pretty cheap - been taking that at doses far higher than stated on box. Lugols tore my stomach up - but this stuff tastes like water. Dr. Sircus recommends on his website. It isn't cheap to get sick.
 

saint

Senior Member
Messages
218
All i can say is that vaclyte helped me alot, i used valcyte for about 18months. I stopped valcyte because i think i improved as much as i was going to on it. ANother reason was that my neutrophil count was dropping and probably causing chronic sinusitis. But my bloods were monitored regularly and when im neutrophils got to a point of being too low i stopped. Its taken a little while for my neutrophils to come up but they have to pre valcyte levels and sinuses have improved also.

I think if u look up any med or maybe meds one is on now u will see a list of side effects as long as your arm. These are put out there to cover there arse if any possible issues arise and they can put the blame back on the patient as they new the risks involved.

I had done famvir previously and this helped to a certain degree but valcyte got me just that bit further. Now off valcyte, if i have viral symptoms returning i do a course of famvir for 2-4 weeks. These short courses now work for me as i think the long initial duration i was on antivirals has lowered the infectious load. So hitting these viral symptoms early ie within the first 5 days and hitting them for 2-4 weeks seems to be doing the job. Again short courses started early for herpes infections can stop them in their tracks eg would be something like shingles

I will also say that using immune mods has also helped me post valcyte and i have found that the need for these short courses of famvir are becoming less frequent. But immune mods immunovir and cycloferon which im alternating month about are helping improve my immune function and keeping these infections down.
Thanks for sharing that. Where do you get immune modulators from?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@saint I guess you missed where I said I was homebound so traveling to Alabama is out if the question.

If the doc lived next door to me, then I could see him I guess.
 

saint

Senior Member
Messages
218
Sorry - did miss that. I too am homebound. I "bottomed out" and was at the end of my rope.

Begged dr. to put me in hospital because I was so weak I couldn't stand it. I was so wiped out. On oxygen. I was pretty desperate so my husband agreed to take me. I was bedridden for years - but did make small gains when went to fibro doc & he ran blood tests & I found out what I was dealing with.

Traditional docs are pretty useless when it comes to treating these disorders. I eventually had to switch to a home-care service (some docs smart and re-instituting house calls but you have to search to find one) to get basic meds, but had to cancel many times when going to fibro doc. Just did not have enough energy to travel the 1 hr. ride.

If you get too bad, call 911 - my dr. called for me a few years ago when I couldn't breathe & they came to house and brought me to hospital in ambulance - so no energy output to drain from my empty tank. At least they'll send you home with some pain meds - not good for liver, but some cases necessary to survive.

Although - you still have to be careful in hospitals...lot of money crunches on entire workforce = rising hospital errors. That's why one doc told me there is such an explosion of fms/ cfids - stress, everybody working 2 jobs... those with money & political clout are out of touch with the realities of Joe & Jane Average.

Maybe you can look for a home-care service in your area. At least you might find a doc willing to work with you & prescribe you the meds - and Doc Pridgen will work with your dr. if you want to trial the Famvir protocol. I had suggested to Holtdorf that they do house-calls because the people they are dealing with are usually too sick to leave the house. They just forwarded it to doc who works with them - he is a good dr. - but wish he made house calls.

Maybe if we, as a group, petitiioned these holistic docs, they would agree to make house calls. It's such a hard road, that few understand, unless/ until they've been there. I hope you find the help - I know how bad this gets.

Anybody want to start a petition?
 
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minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@saint I cannot read what you wrote because I can only read 2 or 3 sentences in a row without have a break in the text. I was commenting on Valcyte and why I couldn't see Prigen. That was all.

I've been sick for almost 20 yrs. I'm well aware of what is out there and what I can do.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I understand but as I said, I've been sick for over 20 years, I've been here and other forums for a long time. I know whats available.
 

saint

Senior Member
Messages
218
i took valcyte and valtrex, high dose, for 3 years and had no improvement really.

dr. kenny demeirleir has clinics in brussels, norway, and reno, nevada. he is heavily involved in research. he and his colleagues have published papers showing the autoimmune nature of CFS.

i have used gcmaf for a few yrs. it has helped me.
Thanks - will look up Gcmaf & also see what this docs protocol is.
 
Messages
5
If you can make the trip, Doc Pridgen gave me meds for free (he is very kind man). I had to travel to Alabama which actually cost less than the Valcyte prescription!
I am getting the pridgen drugs from my dr this week hopefully - has it worked for you?