Famvir hhv6

[heapsreal]

i have had some success with over the counter eye drops for infections(not antibiotics but like an antiseptic i suppose) but not long lasting. Im forever putting in redeye drops as i look like a druggy if i dont, i have taken breaks from these but it doesnt make a difference. I was told it was a rebound response to the eye drops, yeah right. I have since ordered and waiting for antibiotic eye drops called norfloxacin, will keep u informed on how it go's. The general public have know idea how hard it is to get good treatment, no wonder alot of us treat ourselves to a certain degree.

 

[nventor]

treat ourselves is absolutely correct, I don't understand all the medical lingo and do not have the time nor interest to do so. I can however read what other people are doing and how doctors are treating them, that seems to be a reasonable approach to me. I tend to pay more attention to the docs from the universities, take what I read to my good old GP that knows me, talk about it and try to be careful, but do something. The ID's I've seen want to do nothing, totally unacceptable.

 

[m1she11e]

Just thought I would join the red eye club here as well. I was 15 when I got sick and was very healthy one day and sick the next. (Have we heard THAT story before?) One of the first symptoms I remember was having these awful red eyes. My mom "alternative healthed" everything so I got supplements and some kind of herbal eye drops made of god only knows what. I was not taken to doctors so I was never diagnosed or treated with Rx's. Eventually the extreme redness eased but they are still always red and watery to some degree. The redness has become a guage as to how sick I am feeling. On good days they are so much clearer. I also suddenly got pressure and pain behind my right eye about 10 (or so) years ago. The right eye muscle always feels like it is straining and it is hard for me to make eye contanct while some one is talking. It is awful! When it is at its worse that eye itches and is very red. There has never been any kind of a diagnosis though. I would LOVE to get this eye thing under control. Just one more ridiculous symptom that has gotten in the way of my life!!!

 

[nventor]

Michelle,

Valcyte after a couple of weeks has worked miracles for the red eyes. (CMV) I posted to you what else I take, the red eyes go back 12 years, this has been the first real improvement. I think its the CMV.

Best,
Roger

 

[heapsreal]

Thats great news. I wouldnt mind trying the valcyte but price as well as finding a doc who knows much about it is a problem here in australia. I have improved alot on famvir but feel theres just something holding me back, i think famvir is just not hitting it quite hard enough. Hope u keep improving, keep us posted.

cheers!!!

 

[nventor]

Heaps,

The Famvir worked well for me also, but when I began Valcyte both of my eyes turned vampire red for about a week, then cleared. When I increased the dose to a 4 tabs 1800Mg. daily, same thing happened, then cleared and now I'm probably as well as I felt in years. I truly think it was the active CMV that was the last major infection to clear. All other titres have gone done considerably, but I was still very positive for CMV Igm/active , meaning the Famvir and Immunivor may have helped, but did not resolve it.

I'm so glad I did not listen to many of the ID's I saw and my PCP helped me throw everything at these virus's but the kitchen sink.
Best,

Roger

 

[m1she11e]

Wow Roger, good to hear! So it sounds like you are not only tolerating Valcyte this time around but actually improving. My CMV went up while on Famvir even though my HHV6 dropped. Valcyte may be my last step to clear things as well. I may have to use it anyway because my insurance WILL pay for Valcyte even though it is way more expensive than Famvir. So glad to hear the red eyes are clearing up. You have me thinken now...(To Valcyte or not to Valcyte...)

 

[nventor]

Hi Michelle, if your insurance co. will pay, that's a Wow. Mine does one time and then bitches the next refusing to pay saying they are already paying for an antiviral (Famvir). So, make sure they will pay for both and be prepared to pay for one. If you have to make this choice as I did, choose Famvir, Valcyte is around $5000. per month, 900mg. a day. Also, I ramped up slowly starting with 1 pill (450 mg.) a day for a week, up to two a day for a week, then to three. I tried the four as presc. by Roche, but that was too much. I will do the three and maybe after a month drop to a maintenance dose of two a day for a while. Roche says dosing for CMV Retinitis is 1800mg for 21 days, which I did not have.

Also, read about the symptoms for CMV, I was text book, not just the eyes but fatigue, and awful muscle, joint and flu like pain. All the time thinking it was the other virus's, but now I'm sure it was the CMV.

Best,
Roger

 

[heapsreal]

I just saw my doc today and questioned him about my eyes and he said yes it could be cmv, but i wouldnt be able to get valcyte for it because its not covered here in australia unless its hiv or organ transplant related. Out of pocket is just way to expensive like $15G for 3 months. But he did write me a script for acyclovir eye ointment and said it could help, fingers crossed, will keep u guys informed.

cheers!!

 

[nventor]

Okay, but I don't get it with insurance/gov. health care coverage, what difference does the infections' origin make? If you have CMV it sure seems that the treatment wouldn't differ, Valcyte is label
approved here in the US only for CMV, at least that the way I read it.

Good Luck,

 

[m1she11e]

How about the Roche Compassionate care program? (I think that is what it is called??) Since I have not worked for 2 years, I qualify for FREE Valcyte. I know that many have gotten Valcyte that way. I did get my Famvir covered finally so I will be going back on 500mg, 3X a day to see if that will touch the CMV at all. We also want to see if the HHV6 stays down or even drops some more. If not, I will probably go down the Valcyte road and will most likely go through the Compassionate care program.

Hope the eye drops to the trick btw and you dont even need Valcyte Heaps!

 

[nventor]

Hi Michele,
I'm on 250mg twice a day, how long will you be on 500mg three times daily?
p.s. since my last post I kind of crashed and burned, gotta love it.
Best,
Roger

 

[heapsreal]

its a game of ups and downs, lol. I was on 250mg twice a day like yourself but to try and save money i have added another drug called probenecid and cut my famvir dose to 250mg once a day.probenecid is a gout medication also used with antivirals and antibiotics to increase blood levels and half life of a drug, it does this by slowing down the renal excretion of some drugs. So hopefully my one dose of famvir will reach a higher blood level and last longer in my system. If u want a higher dose then 250mg twice a day, adding probenecid to it will help with this without having to pay for more medication.

U would think with all the good press we're giving famvir that they would give us some freebies, lol.

cheers!!!

 

[m1she11e]

The doctor who treats alot of people with all of these virus' without using Valcyte is Dantini in Palm Coast Florida. He isnt my doctor because he doesnt take my insurance. He usually starts with Famvir at the 500mg, 3X a day and keeps them on that dose for at least a year. I will stay on this dose for at least 3 more months and my doctor will test my HHV6 and CMV again. I dont mind being on Famvir for as long as needed as it doesnt seem to be too hard on the body. I dont need on going labs or anything.

Yes, Famvir does owe us!!

 

[heapsreal]

are u not doing valcyte? My lymphocytes came down after 12 months of famvir but then i changed to valtrex and went backwards, hind site i wouldnt have done that. But my numbers came down with 250mg twice a day, 500mg 3 times a day sounds interesting but out of my price league. There are a couple of canadian online pharmacy's that sell valcyte quite cheap, im might put out a thread on them and see if anyone else has used them. I tried searching the roach compassionate program but cant find anything here in australia, i think the govt have a tight grip on that sort of thing.

cheers!!

 

[m1she11e]

No, I am not on Valcyte. I tried to start it about a year and half ago and I just got too sick. I never even took more than maybe 15 pills. I got sick after the first one even. We kept backing me off. I couldnt even handle one pill a week. My doctor said it was because my HHV6 titers were so high and it was die off. YET, Famvir brought HHV6 from 65 times greater than positive to 3. (no "die off.") Now I have had the month break due to insurance. Im hoping Famvir at this dose again will do the trick. If not, I will consider the Valcyte again. It was a very bad experience for me and I still have not fully recovered from it.

Good luck on on that search for the best Valcyte "deal." I still have about 100 pills sitting in my "meds and supplements that bombed" box.

 

[slayadragon]

I've been on Valcyte (900 mg) and Famvir (1000 mg) for a year. I thought it helped a lot. (Note I was just able to take these pills because I was in a really clear area in terms of toxic mold. I say this because I'm not encouraging others to try them in a worse place.....they'd have made me too sick then.)

Anyway I just got back test results. Elevated HHV6 (640) and reactivated EBV, high enough to have gotten me into Montoya's 2007 study. So apparently they've not done the total job.

Should I consider increasing the dosage of one or both?

Thanks, Lisa

 

[heapsreal]

gee, i would have thought with those doses hhv6 and ebv would have come down. Have u tested positive to xmrv? I would look at adding an immune modulator first and get your immune system working, something like immunovir or cycloferon. keep us posted.

cheers!!!

 

[nventor]

Lisa,
Thats mind wrenching, a year? I planned on maybe two months of Valcyte, (three weeks at 1800mg.) 900mg. rest, and I also take 500mg Famvir, Immunivor and trans Factor 200 and draino.
3 antibiotics. misc. supplements.

Anybody selling crack cocaine?
roger

 

[slayadragon]

Lauricidin is a coconut oil derivative that is supposed to dissolve the coating on viruses. It's tiny pellets, 1/2 the size of a grain of rice. The package directions say 100 pellets per day. Most CFSers I've heard from have a hard time taking more than one to start out with.

I decided to try three. This made me dizzy and sort of catatonic for two days. Today I feel great - as much energy as a normal person. More, maybe.

So this may be what I need. Better than adding another drug. I'll play with it and see what happens.

The people I've heard of who've benefited from antivirals very much all have been on them for at least a year. Gains may take 18 months to really set in, it seems.

Aren't we weird people?

Best, Lisa