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Post antiviral/valcyte relapse

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, Aug 8, 2013.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I read yesterday where Dr Peterson is finding this an issue with many antiviral responders. I suppose the idea of antivirals/valcyte is that we lower the viral load and hope that our immune system recovers so that when we stop valcyte that our immune system can keep these viruses down. But my self and i think others this doesnt happen, so i think i have relapsed 2 months post valcyte.

    Dr peterson mentions ampligen with valcyte where the ampligen keeps the immune sytem going post valcyte and thus keeps viruses down. I did use imunovir at one stage on valcyte but stopped as i didnt see alot of improvement but then again i had improved alot that improvement wouldnt have been seen. hind sight i should have stayed on imunovir. Many stay on another antiviral like famvir or valtrex. For me i just dont think famvir is strong enough but i think it does help some. Maybe its worth trying valtrex/famvir combo but i will put that on the back burner for now.

    So searching for immune supps with some type of science behind it and thats within reach doesnt leave alot of options. Heres a quick list, please add more ? imunovir, cycloferon, LDN, GcMAF, nexavir, inosine, AHCC. Many of the herbs just dont have alot of hard core science and arent recommended by many of the cfs guru's, but i am using an astragalus formula at the moment.

    So my current plan is that i have ordered more imunovir and started some LDN. I have tried to order cycloferon but seem to have issues there. The MAF would be great but its out of my price range for now. We will see how things pan out on this. I get results soon of some immune testing. My thoughts are to use the immune mods for a month or so and see if things improve and then maybe add the valcyte back for another 6 months and keep the immune mods onboard, which probably means forever.

    NK function testing i have had in the past should it was crap and i have 2/3 thirds of my tests showing mild neutropenia. Valcyte can worsen this which i think it did with me and the reason for ongoing sinus issues. So valcyte can help viral issues but may cause issues with bacterial issues if neutrophils drop??

    I wish i had saved it but i didnt, but i recall dr montoya saying that those who relapsed off valcyte responding again when placed back on valcyte. So its definately on option and maybe need to stay on it longer. It would be interesting to find out if there is some other type of dosing regime to use as a maintenance treatment eg lower doses or some type of alternate dosing which could help reduce any risks of long term side effects. or they could just make a new safer drug, that would be nice???

    There was something posted recently where it was more of a hit'm hard and get out quickly type dosing for valcyte. 9 weeks? I think it has merit as i think the gains made on valcyte taper off after a few months, thats my experience anyway. SO maybe then its time to hit the immune mods or some type of low dose maintenance valcyte??

    So these are some ideas floating around my head amongst the fog the last few days that i will talk over with my 10min docs appointment soon. I would like to hear peoples opions and from those who have relapsed post valcyte. Maybe things they would do differently?

    cheers!!!
  2. aquariusgirl

    aquariusgirl Senior Member

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    Sorry to hear this. I have found inosine helpful. Gcmaf is more tricky...cos of inflammation. Can only tolerate low doses. Some people like reishimax (mushroom extract).

    How much have you relapsed?
  3. RUkiddingME

    RUkiddingME Senior Member

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    Oh heaps its breaking my heart to read this!! :( I hope you bounce back and soon! I'm just started month 8 of Valcyte and up until a week ago was doing great and even enjoyed a vacation but have been going downhill since and I am back in bed. I will update my blog as soon as I am able, right now I can barely type. I have to stop forgetting that I am alive but not aloud to live lol otherwise it's payback. On a good note, about two weeks ago I started being able to have my eyes open in a car!! I really hope the immunovir helps you get back on track. I am supposed to be on the Valcyte 900 mg daily for another 4 months at which point I will be scared to death to stop it. Best of luck to you, I'm keeping my fingers crossed that this is just a temporary set back for you!
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hard to say at the moment. The last 3 days i have just felt sick and brain fogged so just vegetated or maybe call it aggressive resting. Today is ok, i have had to do stuff around the house for daughter birthday party, so somewhat good timing, see how i feel tomorrow. I did have a few issues with increasing pregnenolone doses but sorted that. Im not bedridden thank goodness and im still functioning just feeling constant crappy which i didnt have on valcyte.

    cheers!!
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    RUkiddingME i was scared to death of relapsing once off valcyte as well. I made some good improvements but also on the other hand so concerned of long term side effects of valcyte. Hind sight i would be trying something to boost the immune system before stopping valcyte. Im hoping i have caught it early enough and dont need valcyte. Something i thought would have helped and may have to a certain degree, but obviously not enough, was getting all my hormones sorted. I was hoping it was going to help me be more resiliant. I think the hormones balanced made me more functional while on valcyte. Dam viruses though dont care i guess.

    Like your profile pic, always gives me that inner giggle,
    cheers!!
    alex3619 and RUkiddingME like this.
  6. madietodd

    madietodd Senior Member

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    Aaarrgh! Good luck sorting this out.
    heapsreal likes this.
  7. lnester7

    lnester7 Seven

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    Sorry heaps. I think you are in the right track, I would give LDN and inosine a try, the only thing I will tell you is that with inmune modulators you have to watchout not to go autoinmune. I told you I will try to find out how to know when one does because of medication, the doctor told me if it is because of meds, she can reverse it. Buit something to consider when doing treatment unmonitored.
    heapsreal likes this.
  8. Omar88

    Omar88 Senior Member

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    Sorry heaps to hear this, but every good CFS doctor use a combination of antivirals and immuno modulators and to keep the balance and for me i will try the GcMAF with the Valcyte,,
    Dr Peterson use immunoglobulin with antiviral injections and he saw a very good results
    heapsreal and vli like this.
  9. jstefl

    jstefl Senior Member

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    Sorry to hear that Valcyte didn't last for you.

    I took Valcyte for 8 months, and stopped just about exactly 5 years ago. Since then I have retained all the gains. My biggest problem pre Valcyte was low pulse and blood pressure, and brain fog with headaches. I was taking Midrodine when I started Valcyte, and was able to quit before I was finished with the Valcyte.

    Since I stopped, things have remained pretty much the same as they were 5 years ago.

    Over the years I have tried many different things including Oxymatrine/Equilibrant, LDN, Valtrex, and methylation. All have helped to some degree, but I still am far from 100%.

    If I had it to do over, I would stay on Valcyte for a longer time. I remember that at a conference in 2008, Dr. Lerner said the he kept patients on Valcyte until they were" cured". He mentioned that he had one patient on Valcyte for 7 years!

    John
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Omar88 i would love to try immunoglobulins but i cant get them here unless i have an obvious defiency and off label are like $1000 an infusion so ive been told. Im going to look into gcmaf further though.

    jstefl thats good u have maintained your valcyte gains a bugger u cant get to 100%, sometimes i wonder if one has had this illness for any length of time then 100% is out of reach, maybe im asking too much??

    Valcyte long term would be an option but i dont think its good for my white blood cells although there is a drug for that but again u have to have cancer to get it. There seems to be things out there we could benefit from but are out of reach because i/we dont fit into a certain group?? Im hoping the LDN and immunovir do the trick??

    cheers!!
  11. jstefl

    jstefl Senior Member

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    Heaps

    I know for certain that enteroviruses are a part of my problem. I had a sample sent to Dr. Chia, and he sent a picture of the stained sample showing that more than 50% of my cells contained enteroviruses. Follow up testing at ARUP labs showed two coxsackie and one echo virus present.

    I started taking Oxymatrine five years ago, and switched over to Equilibrant after it came out. Unfortunately, the Oxymatrine has had limited success for me. It has reduced my need to take Zantac, but I don't notice a big difference in the way I feel otherwise. I know that Dr. Chia, and his son Andrew are working with the pharmaceutical companies to develop a drug, but I don't see that happening soon.

    Interestingly, I noticed that my stool changed from a very dark, almost black color, to a normal brown color while I was on Valcyte. I asked Dr. Chia about this, and he said that Valcyte has absolutely no effect on enteroviruses.

    I also had an interesting experience about 6 years ago that has me feeling that enteroviruses are a big part of my problem. I had a PET scan that showed a polyp in my colon. I was given a powdered prep, and was told to mix it with water, or any liquid that was not red. I used lemon flavored Gatorade. I soon realized my mistake, but I finally finished the entire amount, and had a terrific stomach ache. The next day the polyp was removed, and I went home happy. A few days later, I noticed that I was feeling a little better. For the next 10 days I was feeling better every day, then, all of a sudden, I was back to my miserable self.

    I repeated the colonoscopy a year later, but used water with my powdered prep. No change that time. I had a part of my colon removed shortly after that, again, no change. I have been thinking about this experience quite a bit, since that was my only remission in 23 years. Just the other day I was watching a youtube video about methylation, and the presenter suggested that citric acid was helpful. I have been drinking Limeade daily since then. Lime is supposed to be a good source of citric acid. I haven't noticed any dramatic results yet, but I like it, and will continue for a while.

    Since I hit my low point, I have come back a long way. In 2005, My blood pressure had dropped to 80/50, and my pulse was 50. I could barely stand, and spent the better part of each day in bed. As I said, the Valcyte helped a lot, and the LDN, methylation, and Oxymatrine helped too. Today, I am able to spend three 10 hour days a week watching my young grandsons, and manage to do the chores around the house, including shoveling snow, cutting grass, cooking, and even find time for my hobbies. It really helps that my grandsons nap for a few hours in the afternoon, and I have a day off in between that I use for recovery.

    I do believe that, while a "cure" may be a way off, great improvements are possible. For me, I am trying to find the best combination of methylation supplements. I was on Rich's basic protocol for a while with minimal results, then added SAMe, L-Carnitine, and a few others, and immediately noticed big gains. I will keep trying to find the best combination for me.

    John
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  12. perchance dreamer

    perchance dreamer Senior Member

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    Heaps, have you ever tried beta glucan? I've been on 700 MG a day for over 2 months now, and I'm very slowly making progress. When I say slowly, I mean what seems to be a glacial pace at times.

    The main thing I've noticed is that I've been able to slowly increase supplements such as lecithin and ribose that make me feel better during the day. Before beta glucan, even the most minute amounts would wreck my sleep.

    Beta glucan is supposed to help NK cell function and TH1/TH2 balance.
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    A few weeks before comming off valcyte i took beta glucan and colostrum for 2 months, so it didnt seem to help. I used NOW brand maybe a different brand would make a difference??
    Im looking at a few things and have mentioned them in the past but AHCC i am yet to try mainly due to cost. But im considering it and it looks like it costs the same as immunovir over a 2 month period. 3000mg a day for 2 weeks and then 1000mg a day as a maintenance dose. I think AHCC is a form of glucan or from mushrooms anyway. Medicinal mushrooms seem to get a good rap on the internet. AHCC is climbing on my list of things to try after i do 2 months of imunovir.

    cheers!!
  14. perchance dreamer

    perchance dreamer Senior Member

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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I used the 250mg strength 2 tabs twice a day, so 1000mg. I saved that link thanks. Do they have other products you would recommend?

    As for AHCC vitacost seem the best priced i have found so far 500mg x 60 for $45, most are priced around $60 plus, i have been told that AHCC mostly comes from the one supplier??
  16. jstefl

    jstefl Senior Member

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    I am aware of one person who claims to be greatly improved by the use of a combination of beta glucan and AHCC.

    I was taking the combination for a while, but stopped due to the cost. If I can find the funds, I will restock.

    I do remember him mentioning that the beta glucan from Europe is somehow better and different from that available here, but I am pretty foggy on that.

    This person was able to return to work, so there may be some merit to this treatment. I stayed with the combination for several months,but didn't notice any great difference, and put my cash toward methylation supplements instead.

    John
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  17. RUkiddingME

    RUkiddingME Senior Member

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    Don't forget the coconut oil! :) I always forget to take the stuff by spoonful (anti-viral properties and tons more! Two days ago I noticed psoriasis on my elbows! What the hell? Sure enough the coconut oil is supposed to help that so at the same time I rubbed some on my elbows,face, arms and swallowed two spoonfuls! Lol. I have been on LDN for over two years and before I stop the Valcyte will hopefully convince someone to put me on Immunovir, my doc says it might only increase my NK cells by 30% which is not enough but heck I only have 9 of them so ill take the 30%!! A friend of mine went from like 2 LU30 NK to 60 in a year on the stuff, full dose one week, half dose second week, weekends off and third week off. She felt like crap at the beginning on the stuff. I was told a lot of people feel sad the weekends that they are not on it.??
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    hopefully with a few immune mods my nks go up, so im using ldn now andwaiting for immunovir. When i finish immunovir im going to order the ahcc and start off with 3grams a day for 2 weeks and then just the 1 gram a day for a total of 8 weeks and then back to immunovir or something like that.

    Just woke up and had a crappy nights sleep due to leg pains. Have just finished days off and about to leave for work, feeling like crap and have 10 hours in front of me aaarrgghh. I hate feeling like this, its a big tease after improving so much, just get frustrated. soldier on.

    cheers!!!
  19. jimells

    jimells Senior Member

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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Doing better thanks for asking.

    After reading my last post in this thread it says i started LDN, it didnt last long as i was using pain killers with codeine in them so stopped the LDN. I think its been about 3 weeks since i have gone back on valcyte and feel better for it with reduced headaches fatigue etc although im still a few paces behind where i was before stopping valcyte a few months back.

    So i think valcyte is a good fit for me mostly although it is lowering my neutrophils which isnt good for sinusitis and other bacterial infections. Today some of my supps arrived one which is lithium orotate which i am using to increase my neutrophil count, its supposedly helps protect the brain from over production of nmda but thats just an added bonus for what im using it for. My inosine still hasnt arrived as im hoping this increases my nk numbers.

    I think my overall plan is to stay on valcyte(currently 450mg) with famvir until my t-cells all test normal and neutrophils come up and to maintain this for a few months before considering stopping valcyte again, unless i still have issues with neutrophils?? I cant get viral titres tested here so use the t cell tests as a guide, they were still activated slightly before stopping the valcyte so i guess the cmv wasnt supressed enough. If the lithium orotate increases my neutrophils enough i will consider increase my valcyte dose too.

    nothing seems straight forward i guess, but just keep plodding along:thumbsup:
    SOC likes this.

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