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Homemade Isoprinosine/Immunovir

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by cfs since 1998, Nov 13, 2009.

  1. starcycle

    starcycle Guest

    I tried some inosine today, and seemed to feel better from it, with slightly less fatigue and a seeming reduction in swollen gland feeling. I got a little nauseated this afternoon though, not sure if it was from that or something else. I think I'll try it again tomorrow.

    Aside from possibly being an immune modulater, the uric acid formed from the inosine is supposed to be a potent scavenger of peroxynitrite, which, if true, I would suspect to be the cause of immediate small improvements rather than any changing the immune system, which I would suspect could take longer. But that's just a guess.

    My WBC is chronically low (<3.5-4) ever since first having the chemical injury that started all these health problems, but I haven't had it tested since this immune aspect of the chronic fatigue happened. I was getting it tested every 3-4 months to track the thyroid levels (I developed hashimoto's a couple years ago also, from the immune problems related to the chemical injury), but since getting CFS I don't know if I'll get tested again. If I don't start improving I think I'll just let the thyroid worsen until it kills me rather than live with this level of CFS for the rest of my life. It's just not worth it. If I do get tested again while on the inosine, I'll try to remember to post the results here.

    If you want to raise NK and cytotoxic T cells, the medicinal mushrooms might be good to try (reishi, maitake, shiitake, cordyceps, etc.) Those are known to raise NK cells. I also found this yesterday on medline, a chinese herb called Tai Zi Shen (Pseudostellariae). I think it might be worth a try.

  2. Hysterical Woman

    Hysterical Woman Senior Member

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    Welcome Starcycle

    Hi Starcycle,

    Welcome to the forums. That's for posting your information. Could you share with us what kind of chemical injury you had that started you down this road?

    Take care,

    Maxine
  3. Marylib

    Marylib Senior Member

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    for Maxine

    I can't tell you about immune system tests before or after isoprinosine since we can't get those tests here. I guess maybe a white blood cell test, but mine was normal last time. Don't really have access to others.
  4. Hysterical Woman

    Hysterical Woman Senior Member

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    Marylib

    Hi Marylib,

    Thanks for responding. It is a shame that you can't get the tests there, and even tho we have them here, many can't get them because of the cost.:(

    I was able to get some immune blood work done years ago when I was still trying to work, and the values were definitely scrambled - especially NK cells, CD4's, 8's, etc.

    It would be interesting to know if Dr. Cheney actually did immune system testing for his immunovir patients and then with the inosine patients. Otherwise, how would one know if their immune systems are actually getting better?

    BTW, I have always wanted to travel to New Zealand! But unless I gain the ability to stop time, get a "cure", and win the lottery, there is probably not much chance of me doing that now.

    Take care,

    Maxine
  5. garcia

    garcia Aristocrat Extraordinaire

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    Hi Cfssince98,
    someone else from the US tried to order some isoprinosine from goldpharma, but didn't know how to proceed when it wouldn't let her continue (after selecting US as her country).

    I don't know if its a bug in their software, or that they don't deliver to the US. If you find out let us know as I'm sure many people from the US would prefer those prices if possible.

    garcia.
  6. starcycle

    starcycle Guest

    Hi Maxine - toxic fumes from a carpet + gas stove exposure did it to me. Mercury poisoning was ultimately found to be at the root of it.
  7. Hysterical Woman

    Hysterical Woman Senior Member

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    Starcycle

    Hi Starcycle,

    Sounds like a nasty toxic "cocktail". I am always interested in the toxicity aspect of this illness. I was working at a hazardous waste disposal facility when I became ill.:(

    Thanks for sharing your story with us. Please keep us informed as that what you are trying and what impact it has on you.

    Good Luck,

    Maxine
  8. cfs since 1998

    cfs since 1998 *****

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    They deliver to the US as I just received my order a few days ago (took a little over a week I think). So it is apparently a bug/glitch. Just select a different country and then select United States again. It took me some time to figure out...it didn't say they didn't deliver to US anywhere on the site and since they have a conversion to US dollars and US option on the shipping address, it didn't make sense, so I just fooled around with it until I got it to work. Someone should probably email them and tell them it doesn't work right.
  9. Hysterical Woman

    Hysterical Woman Senior Member

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    cfs since 1998 - another side effect

    Hi CFS Since 1998,

    You had asked me earlier about what side effects I was having with the inosine and I responded to that question. However, there is another one I forgot to mention because I am getting so used to it, but it might be important so I bring it up now - sores/ulcers inside of my nose (I know, disgusting).

    I first had sores/ulcers inside my mouth when I started taking olive leaf. They were annoying and I mentioned it to my local CFS friend who sees Dr. Cheney. She said she had the same thing when she started immunovir and that she complained to Dr. Cheney about how uncomfortable it was. He asked her to hang in there with those symptoms because it meant that the immunovir was "working". So I also tolerated that side effect hoping that it meant the same thing for the olive leaf. After about a week on olive leaf they went away, but would come back every time I increased the olive leaf dose. The last couple of times I increased the olive leaf, the ulcers/sores didn't come up in my mouth, but inside my nose.

    When I started the inosine, the ulcers/sore came back in my nose. They go away and come back but don't stay very long. I am not sure if they are more prevalent when I am on the 4 pill dose week as opposed to the 2 pill dose week because I try to ignore them when they occur hoping that the inosine is helping.

    I have no idea if the ulcers/sores come from the ebv & cmv in my heart tissue is working it's way out of the body? Guess guess guess - the name of the game.

    Good luck with your continued experiments and let us know how you are doing.

    Take care,

    Maxine
  10. Hysterical Woman

    Hysterical Woman Senior Member

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    Prevention of patients obtaining immunovir??

    Hi cfs since 1998 and all,

    Beckster posted on another thread that the new proposed health care reform bill would prevent patients from ordering drugs from outside the U.S. How would that impact those of you who are getting immunovir?

    Do you guys think this will really happen? I wouldn't pretend to be able to understand what is currently going on in the health care bill debates.

    Thanks,

    Maxine
  11. Hysterical Woman

    Hysterical Woman Senior Member

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    Hi Minimus,

    If you could, please update as to whether you were able to take some DMAE powder to your appointment with Dr. Cheney to have him run it with the echocardiogram.

    Thanks!

    Maxine
  12. sela

    sela Senior Member

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    are there any updates on inosine treatment?
  13. dsdmom

    dsdmom Senior Member

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    I just started Imunovir today and it is giving me a horrible headache. I did not even take the full dose - has anybody else had this issue? Does it go away? I feel icky too - like glands hurt and I just feel sick. But the headache is the worst part.
  14. dsdmom

    dsdmom Senior Member

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    Hi cfs since...
    Any update on your progress with this? I just read your blog (very impressive) and posted a comment that I'll repost here...could you take the 2 ingredients you have found to a compounding pharmacy and ask them to put them in a capsule form at the right ratio? I don't even know if they would do that or if a capsule form would be ok...just trying to figure this all out. I spoke w/ Nancy Klimas today and she thought that the gluten in the imunovir is what caused my terrible headaches. If that's the case, I can't take it. I guess they used to make a gluten-free version but don't any longer. This is so frustrating since I really want to be able to take this so am trying to figure out if there's a way to make it myself like you have...

    How have you measured out the grams?
  15. cfs since 1998

    cfs since 1998 *****

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    I wasn't aware there was any gluten in immunovir. Does the form you were taking come in capsules or tablets? If your form comes in capsules maybe the gluten is in the capsule and you can empty them out and take it that way?

    I still think the headaches might be from a herx/brain inflammation type thing. Is it the same type of headache you get when you eat gluten or is it a different type of headache?

    I am not taking the "homemade substitute" because I found there were side effects of the DMAE component which I didn't have with the actual drug. This side effects I had were mainly restlessness/inosmnia and anxiety. It also tastes sour because of the tartaric acid which is in the DMAE.

    Be aware that if you do this you are a guinea pig. I would have an NK cell function assay done before and after to see if its actually doing anything, since it's not quite the same substance as the one in immunovir.

    As far as measuring, I simply dissolved the components in water. I think I made a few days worth at a time so that I wouldn't have to use odd fractions of teaspoons. If you want help with the measurements you can PM me. If you need capsules (eg for convenience) I suppose you could call compounding pharmacies and ask, I do not know whether they would do it or not. Yyou might be able to do it yourself if you got the correct size empty capsules.
  16. dsdmom

    dsdmom Senior Member

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    The Imunovir is in tablet form, so I can't empty it out unfortunately. I spoke with the distributor today and he said he was unsure why they switched to manufacturing with a gluten filler, but that it had extremely small parts per million of gluten in it - should be fine for many people but for some it is not. The headache is similar to what I get with gluten - in fact I had horrendous headaches for a long time and when I cut gluten out (among other things) they improved greatly. Of course there is the chance it is not related to gluten at all and I may find that out when I try inosine.

    In the meantime I guess we are going to give LDN a try first. I had my follow-up call with Nancy Klimas today and went over my blood work - NK tests and all. She wants a repeat of them in 4-6 months so it will be good to have it monitored.

    I really hope that I can eventually take imunovir - but only time will tell.
  17. garcia

    garcia Aristocrat Extraordinaire

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    My personal opinion is that the headache is not related to gluten. The tablets I have are marked as being "Suitable for people with ceoliac disease", so as the distributor said it must contain only a tiny amount of gluten.

    Headaches are listed as a possible side effect of the medication, e.g. see here:

    http://www.medicines.org.uk/emc/medicine/1235/SPC/Imunovir#UNDESIRABLE_EFFECTS

    Inosine doesn't have the same effect on the body as Imunovir, so if you don't react to inosine it won't tell you anything.

    My advice would be to give imunovir another try. This time maybe start at a very low dose and build up slowly. Also drink plenty of water.

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