1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Starting Famvir

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Live And Let Die, Apr 1, 2011.

  1. m1she11e

    m1she11e Senior Member

    Messages:
    313
    Likes:
    91
    Florida
    I go round and round with this REST, REST, REST or CRASH thing... I do know that when Montoya was treating the virus' with Valcyte he told people to rest even when feeling better. That does make sense when the body is trying to recover.

    With that said, I have been sick for SO long. I was sick LONG before they talked about staying within your "energy envelope" and "PEM" and "push, crash."
    I have always took very good care of myself and slept a lot at night and often took naps. Until the last few years I worked full time too. I believe that enjoying my good days or hours kept my mental state bearable. I think the more I lay around the more exhausted and angry I become. Working at all makes me feel some what productive and that is SO important too. I really think there is a happy medium and we are all different but I never would regret a fishing trip or a few beers and a great evening. If I dont have these times, and I did crash so badly for about a year where I didnt have them at all, the despair becomes worse than the illness.

    Im glad you are having some good days LIVE and LET DIE. I cant say Famvir has changed my ratio of good to bad days. I still take it and will continue. I just think we know our bodies and sometimes everyone warning of us of impending crashes may not be doing us so much good.

    Hope you are back out fishing soon!!!!
     
  2. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    You know what, you are right. Florida is my home, I was born in Orlando and the "advice from home" is welcome anytime. Thanks M1she11e.

    I love fishing, and the concert was Carlos Santana. So I crashed drinking beer listening to a legend killing it on his guitar at the Hard Rock Casino in the middle of Las Vegas, yep I guess I'll take that.

    I will note that I am feeling better and probably not in an extended crash, just took 3 days to get over the alcohol/concert. This is progress.
     
  3. m1she11e

    m1she11e Senior Member

    Messages:
    313
    Likes:
    91
    Florida
    This was an opinion from your home town, not advice!! (Eeeek!) I lived in Montana for many years and I love to fly fish. If that isnt healthy for you, I dont know what is. (Opinion here, once again...) Havent been anywhere near fishing since moving to Orlando 6 years ago.

    Three days is barely a crash at all! Good for you. I hope the Famvir is knocking out some of the evil virus' and you will continue to have more concert and fishing days and less staring at the same four walls days.

    I have found (this is an FYI and doesnt really belong in your thread) that when I take a second muscle relaxer (my choice for sleep) around 3 or 4 in the morning I will sleep until around 10. This gives me around 12 or so hours of hard core deep sleep. (Flexeril allows the deepest stages of sleep unlike many sleep meds) My doc said it was okay to do a couple of times a week. Anyway, when I do it, I feel SO much better the next day. When I am going through a few days of feeling like Im in a trash bag moving through quick sand, I will hit the double dose of muscle relaxers and it seems to really pull me out of it. Maybe I am pressing a reset button???

    Okay, all out of my opinions for the day... :))
     
  4. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    A good opinion is often solid advice.
     
  5. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    Day Whatever.

    Yeah it's one of those days. I haven't gotten to where I was pre concert yet, however I have been asking around and some suggest this may be an IRIS response. I was under the impression that one gets worse right off the bat with AV's and they gets better. In my case, I had steady decrease in symptoms for the first 3 weeks and now seem to be at baseline (my normal cfs symptoms). But even now it's a bit different. Over the past week my want to go to sleep has increased. I'm sleeping more like a rock, not that it's any better quality, but it's harder for me to get up in the mornings.

    I did drive down to Lake Mead last night to do some catfishing. The hour and a half drive was a lot worse than it was a couple weeks ago. I almost turned around and went home but didn't. I've heard an hour of fishing adds an hour to your life so I continued on. It was alright, good to get out there. My fishing buddy caught a little 2-3 pounder and I hooked one but he got off somehow. He was ON for a good 10 seconds. Now THAT is a sickening feeling ;) But it happens to the best of them.

    I've got another week and a half of the Famvir trial left. I'll ask my dr to keep me on a maintenece dose as I'm pretty sure he won't let me have another 6 week 3x 500mg trial.
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,791
    australia (brisbane)
    You know i think everyones response to av's seems different. I didnt get an IRIS till months down the track, well what i thought was an IRIS, different to my normal cfs crashes. But initially i didnt really notice any improvement only that i didnt seem to crash as often or as hard, then 4-5 months i started feeling better and then i got the IRIS. But this is my second time on famvir. The first time was 12 months on famvir and i improved quite abit with no IRIS type syndrome, my mistake then was changing to valtrex, should have stayed on famvir but s-it happens i guess, lol. Personally i think if antivirals help then u will have to be on them for a few years, i take 500mg once a day now and it still helpful.

    good luck cheers!!!
     
  7. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    I'm back to the point of overall malaise. The typical afternoon crash isn't quite as tough as they normally are but it still sucks. Everything is blah and "meh".

    I've been thinking a lot since the latest XMRV study came out and have a few thoughts on CFS overall. If this was a viral disease (xmrv or otherwise), we would continue to get worse one would think. Left untreated don't all diseases get progressively worse? Thinking back, I was a lot worse when I first got sick (12 years ago) than I am now and if anything it's just the same cycle of symptoms for me. Yes, Valtrex did a little, Famvir did something cool for 3 weeks but idk, I just think (in my uber lay opinion), it's got to be something more. Yes, if you take a ton of antivirals for years you'll feel better. I buy that in its conceptual form but don't have the money to go that route. Another question is, if this was a viral infection, how did we get it? I think sexual transmission is out. CFS and it's onset are all over the board as far as demographics go. If it was a STD, I think it would be pretty obvious. Another stigma from the past is that this is a "unattractive, middle aged woman's" disease. Obviously this isn't the case. I'm 29, male and once upon a time was really, really, ridiculously good looking. . . ;)

    Now think symptoms. Most of us share the same core symptoms but the statement "we are all so different" comes up constantly in terms of treatment success/failure. That's probably because we aren't going in the right direction. How, for the same condition, can one person almost fully recover on antivirals and another can not, with the same herpes virus infections and same duration of illness? And to boot EBV and HHV6 are a non issue for the general population.

    Ok, so its an immune problem. We think back to retroviruses. XMRV doesn't look very good and has anyone felt any better at all using a trial of antivirals? Of course, maybe it is a RV but still my questions of transmission come back up. My bloodwork doesn't look all that bad really. If we were severely immunosuppressed as a whole, our bloodwork would show it I'd think.

    Ok, so it's a psychological problem. No, however being sick for so long does mess with your head. GET will not help at all and CBT might help a little. A good friend is better.

    So I think it has to be a hard wire problem. Some system or something isn't working properly. I'm starting to see all these things like reactive viruses, immune issues, ect as symptoms.

    I don't know if they are doing these studies or have in the past but why not start "inducing crashes" and studying the person then? Hell, I'd be first in line for you guys, I'll push myself all the way to exhaustion for the sake of CFS science, both mental and physical. I've done it many many times anyways.


    I'll just reiterate that I'm speaking in generalizations and may or may not have any idea what I'm talking about. . .
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,791
    australia (brisbane)
    So are u feeling discouraged on antivirals? I dont think there the silver bullet but i think they can help improve u by a couple of points eg from a 5/10 to a 7/10. I think these viruses are co-infections because our immune system is down as like u said these viruses are non events in healthy people, should we treat them, i think so, its going to help reduce your viral load and free up your immune system to go after other bugs/infections, maybe reason why your feeling so bad at moments. Also dr lerner has found those that dont respond have other bacterial co-infections that need antibiotics etc.

    Personally i dont think u have given it enough time to make a good judgement, 6 months on av's i think before saying its not effective. But it comes down to your personal choice and budget, can u wait 6 months on av's for an improvement of 2 points? can u afford it? Do u think its worth it? Avs are a peice of the jigsaw puzzle as are looking for other infections as well as trying to strengthen the immune system, treating adrenal fatigue and pacing. Its the sum of all its parts, it takes time and like everything in cfs its dams frustrating.
    There are plenty of studies showing improvement on av's although 100% cures are rare, just need to keep plodding along for 6 months and then make a desicion. Personally i know they have helped me and if i go off them i feel like crap and go backwards 2 or 3 points and i hate that feeling, im still chasing more improvement but i just dont want to go backwards aaarrrgghhh, im keeping my head above water now.

    cheers!!!
     
  9. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    Man that post was just venting overall. I had to let it out somewhere is all.

    Don't get me wrong, I'd be very very happy with a 2 point jump overall. It is well worth it. I saw a 2-3 (I dare say almost 4?) point improvement in 3 weeks and while it was an amazing ride, it went away overnight. I'm not feeling discouraged on antivirals. I'd like to continue on Famvir for at least 6 months if not more to make a proper assessment. I'm not even looking for a cure at this point. If I can get it to a manageable point, I'd be happy.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,791
    australia (brisbane)
    Thats cool, thought you were venting, just trying to give u some encouragement to keep going, hopefully u look back at this post and see how much u have improved. The ups and downs always get to us even when we are improving.

    cheers!!!
     
  11. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    6 weeks

    So I didn't fully recover but have had slight improvements. My doctor has agreed to continue me on Famvir for a while. He hopes that I'll be able to get the viruses down enough so that I take Famvir as needed (which sounds similar to the famvir recovery story I read on here a while back). I asked for Valium for the generalized anxiety and overstimulation and he rxed me Klonopin instead. I didn't really want to take Klonopin due to the addictive nature but thats what he said was the best. He spoke to come collegues of his at Stanford University and the general concensus is that Klonopin is the best. I also got some Flexeril for the terrible leg pain, tension, twitches that have gotten worse over the past few months.

    While he isn't a CFS specialist, he's very down to earth, attentive, takes what I say as truth and is, in general, a rock star.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,791
    australia (brisbane)
    cool, sounds like your on the right track, ie training your doc well, lol.
     
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Had you ever seen that kind of improvement on treatments before?

    What does your doctor think about the up and downswings?

    Try and stay as happy as possible! Emotions ie stress do effect immune functioning. Glazer has shown that herpesvirus reactivation occurs even in healthy people under stress...that suggests that stress depletes immune functioning. Maybe Famvir only goes part of the way for you and it needs help. Dr. Peterson,by the way, is checking our a new herpesvirus drug he thinks will the be cats meow for people with these infections....

    It seems like most people in my circle use Klonopin....it's amazing how many people use it... appears to be the most used drug in ME/CFS...
     
  14. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    I spoke to my doc about the ups and downs ect. He said herpes viruses are incredibly hard to treat in the first place. I took klonopin for the second time last night. I'm going to cut back to 1mg instead of 2. If I take a 2mg, I'm able to fall alseep in 10 minutes. This hasn't happened ever in my life. The anti-anxiety benefits seem to last for the most part of the next day. I'm not going to recommend klonopin or flexiril to anyone because it is really powerful stuff. I hear the half life is 18-50 hours on it!

    Some of the ups and downs lately might be due to the NBA playoffs (just kidding, but not really). My Magic disgusted me yet again with a dismal performance (Of course I crash everytime I hear Howards going to be traded to whatever team). If its the Celtics, I will have no choice but to become a Celtic fan. If it's the Lakers, well, there are a lot of tall buildings here in Vegas. . .

    The Lakers got swept (which makes me weally weally happy) and I hope the Heat (love D. Wade, can't stand Lebron, dont' care about Bosh) get beat by the Bulls. I'd like a Bulls/Dallas final. Happy either way, watching D. Rose and company play beside themselves is super fun and Kidd/Nowitzki just deserve a ring. They remind me of the Stockton/Malone Jazz team who really deserved to get a ring but it just didn't happen. Great year in NBA all around. Better than it has been in a long time.


    What is the new drug he is trying?
     
  15. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Cort, do you know the name of the new drug Dr. Peterson is trying or when he will be done with his study?

    Live and Let Die - I have been on valcyte, valtrex and doxycyline for 3 years. I have improved 3 points and remain steady with that improvement. I went from a 1 1/2 to 4 1/2. I still can't sustain, but at least I have some good days where before I had zero. Hang in there with the famvir. My doctor just switched me from valtrex to famvir for insurance reasons. It takes awhile to really see the benefits of the anti-viral treatment. I would say a minimum of 6 months. Everyone I know who has taken anti-virals were on them for at least a year. The one with the most success was the youngest girl. She thinks she's completely cured. From watching all of this, it does appear the younger people have a better chance of more improvement.
     
  16. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    I do have insidious improvements most days I think. The Klonopin is taking the anxiety way way down so I'm much better at considering my symptoms in a more objective manner.

    I'm 29 and I think because I have forced myself over the years to be active, maybe that has helped. Dr Lerner said I was a 2.5 on his scale (pre antivirals) but I don't think I was that bad in general. I was a solid 4 or 5. If I can get to an 8, well, that's the stuff dreams are made of.
     
  17. Grape Funk

    Grape Funk Senior Member

    Messages:
    113
    Likes:
    0
    USA
    The drug peterson is using in trial is basically an oral form of cidofovir, plus additional benefits. Its called chimerix.

    http://www.clinicaltrials.gov/ct2/show/study/NCT01143181?term=CMX001&rank=3

    How old was the girl you are referring to KC, and how long/bad was she sick? I have heard those rumors of younger the better, but ive never heard a definitive age. I myself have been on famcyclovir and valacyclovir for a month now with nothing notable yet. I also get extreme sinusitis and in the mornings im always coughing up dark yellow mucus, but thought it might be because of the EBV and company. I was gonna wait to ask for doxy but now im not so sure if i should.

    Live and let die, i feel ya on the bball, im still pissed about the sixers coming short of the heat. Idk if you watched the series but it was a lot closer than 4-1.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,399
    Likes:
    4,791
    australia (brisbane)
    Oral cidofovir looks really good, I hope it doesnt take long to get to market and its not rediculously expensive, but thats asking too much.
    Anyone have a good source of Valcept, its suppose to be the generic version of valcyte. I have seen it priced at $1000 a month taking 2 tabs a day and abit cheaper as u order larger orders. Still too expensive for me but would love to give it a shot.

    cheers!!!
     
  19. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Grape Funk - The girl got sick around 16. She was sick for 2 years. She started out as a 4 or 5. She started with Dr. Lerner around 18 and she is now 20. She is working full time. She considers herself cured. She goes to the same doctor I go to in Central Ohio. She still sees Dr. Lerner.

    I was on anti-virals for at least 6 months or longer before I noticed any improvement. I am in my mid-fifties. I would stay on anti-virals. The doxycyline is for the mycoplasma infection.
     
  20. Live And Let Die

    Live And Let Die Senior Member

    Messages:
    104
    Likes:
    3
    Las Vegas
    I sneezed upwards of 100 times today. Never in my life have I sneezed that much. Started a few minutes after I woke up.

    lol, just thought I would share.

    Buuut, I got a TON done today. I was active the whole day, time flew by. Now if I can just string a couple of these days together. . .
     

See more popular forum discussions.

Share This Page