Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Anyone have experience from Isoprinosine

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by redaxe, Apr 16, 2015.

  1. redaxe

    redaxe Senior Member

    Messages:
    230
    Likes:
    301
    Hi.

    So I've been taking Isoprinosine as an immunotherapy to deal with a suspected HHV6 infection (diagnosed by highly elevated antibodies...)

    Now I've been taking it at the 'pulse' doses suggested in this thread here
    http://phoenixrising.me/treating-cf...ndrome-isoprinosine-immunovir-by-cort-johnson

    What I do notice is that on the days when the dose is highest (the 6 pills a day) is that a feel run down with a flu-like feeling. It's not unbearable but it is not enjoyable. It is sortof like a sensation of being shell-shocked or drugged. Honestly it feels very much like how I felt in the worse phase of the illness.
    Other distinct signs is dysfunction of sleep patterns (I go from a 10am-1am to 4am-12pm and it becomes harder to focus on particular tasks).

    Is this likely to be a symptom that the immune system is being unneccesarily over-activated (just throwing out interferons needlessly) or should it be seen as an indication that the medicine is working? I suppose that is an impossible question to answer as it is the old herx vs inflammation debate but if anyone has experience with the Isoprinosine I'd appreciate some feedback.
     
  2. Hip

    Hip Senior Member

    Messages:
    10,375
    Likes:
    16,813
    Apparently in the first few months of starting inosine / Imunovir you generally will feel worse. After that, you may start making headway, and begin feeling better.

    See also these threads:
    Getting worse from imunovir?
    Inosine Reaction


    Note that Dr De Meirleir stated that he felt that the supplement inosine was as effective as Imunovir.
    (Imunovir is just a molecular complex of inosine + the acetyl derivative of the vitamin PABA).
     
  3. halcyon

    halcyon Senior Member

    Messages:
    2,345
    Likes:
    5,491
    I had a fever for 5 days and a sore throat for 11 days after starting inosine.
     
  4. Hip

    Hip Senior Member

    Messages:
    10,375
    Likes:
    16,813
    Are you still take inosine, halcyon, or did you stop after that?
     
  5. halcyon

    halcyon Senior Member

    Messages:
    2,345
    Likes:
    5,491
    I still take it, 500mg a day. Dr. Chia doesn't advise pulsing it like others do.
     
  6. Hip

    Hip Senior Member

    Messages:
    10,375
    Likes:
    16,813
    Is 500 mg the dose that Chia has recommended, or is this just the dose you feel comfortable with? I have heard some people go up to 2 grams of inosine daily.

    Are you noticing any improvements yet at that dose level, or is it too early to tell?
     
  7. halcyon

    halcyon Senior Member

    Messages:
    2,345
    Likes:
    5,491
    That's what's recommended to start, though I think he said 500mg bid is fine too. I have a history of what are likely uric acid kidney stones so I'm scared to go too crazy with it.

    The only thing I've noticed with inosine is that I was suddenly able to tolerate Equilibrant a lot better after starting it.
     
  8. Hip

    Hip Senior Member

    Messages:
    10,375
    Likes:
    16,813
    Are you taking both oxymatrine and inosine at the same time, on occasion? That's something I have considered doing.
     
  9. halcyon

    halcyon Senior Member

    Messages:
    2,345
    Likes:
    5,491
    Yes, 500mg inosine + 1 pill of Equilibrant AM, then 1 pill of Equilibrant PM.
     
  10. lnester7

    lnester7 Seven

    Messages:
    2,576
    Likes:
    3,724
    USA
    Firstable, go slow w that medicine, I got so acidic every soft tissue hole in my body split (cortner of the mouth, and so on..:redface::oops::oops::oops::oops::oops::oops::oops::oops:) so make sure to take water and monitor symptoms, I take tops 3 pills a day (my doctor says that now they think this works best).

    I do not think that alone will combat HH6v. I had high titters to so I take antiviral on top of the IM. if you read the indication is to regulate the inmune system and raise Tcells and NK cells.

    If you are feeling so crappy or you increased to fast or too much too fast. Herxing so bad is not good either.

    I am not doctor just what I know of the med. Good luck.
     
    redaxe likes this.
  11. Ema

    Ema Senior Member

    Messages:
    4,556
    Likes:
    6,563
    Midwest USA
    I never noticed anything from inosine. It did raise my (too low) uric acids levels though.

    Immunovir is different though. I ended up having to stop it because I was getting increased symptoms from it that were tough to deal with on top of a change in antibiotics. I am going to start it again at a lower dose and see if I can tolerate it soon.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    8,971
    Likes:
    8,325
    australia (brisbane)
    I was using immunovir and had stopped famvir for a short while to see if it helped my immune system to function better. It didnt and I got shingles. It may have improved some of my immune function but for me its not worth the price which was costing me $100 a month. If it was alot cheaper I would continue using it.

    now im using ahcc at 6 pills a day which is costing me $50 a month. 1 month down and nothing outrageous to report. I have another 2 months supply so time will tell.

    Hard to find something that really works long term. Im starting to think the immune system can only be stimulated for so long. Maybe good for short term crashes from viral flare ups
     
    minkeygirl likes this.
  13. minkeygirl

    minkeygirl But I Look So Good.

    Messages:
    4,678
    Likes:
    4,651
    Left Coast
    It never did anything for me. In fact I had been on it about 8 months and my NK cell function dropped from 236 to 4 while I was on it.
     
  14. SOC

    SOC Senior Member

    Messages:
    7,839
    Likes:
    16,558
    My daughter takes inosine and has not had any side effects that she's noticed. She's on some kind of pulsing schedule similar to, but different from, the one described in Cort's article. I don't believe she goes all the way up to 6 tablets at any time. Her NK cell function improved significantly since she's been on inosine, so it seems to be working well for her.

    She also takes 2 Equilibrant daily, divided. She has had no noticeable side effects with that, either. She is not particularly sensitive to meds or supplements, though, so her experience may not be typical for PWME.
     
    redaxe likes this.
  15. redaxe

    redaxe Senior Member

    Messages:
    230
    Likes:
    301
    Thanks - I think you're right on that one. I tend to think immunostimulants or immunomodulators are largely worthless on their own unless they are combined with stronger drugs but i just thought I'd give it a try while i'm waiting to get started on Valcyte.

    What I'm thinking of doing is Valcyte + Isoprinosine + Transfer Factor + Shitake/Reishi blend. Although most people that have used Transfer Factor say it doesn't do anything but then again maybe combined with an antiviral it will.

    As I understand it the antivirals don't kill the virus or prevent early antigen synthesis - they only block complete viral replication. As they are low grade infections most of the damage is being caused by early antigens and incomplete viral protein synthesis. The long duration of the drugs is required basically to block full viral replication until the infected tissue dies from apoptosis or is killed by the immune system. Maybe immunostims can help speed up this process at least that is what I'm hoping to achieve.
     
    SOC likes this.

See more popular forum discussions.

Share This Page