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Anyone have experience from Isoprinosine

redaxe

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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.
 

Hip

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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.

I did not feel good at all the first few months but Dr. Klimas told me that meant the immune system was doing something. I cannot remember how long it took to start feeling better 4 months at least.
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.
 
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Hip

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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?
 

halcyon

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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?
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.
 

Hip

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Are you taking both oxymatrine and inosine at the same time, on occasion? That's something I have considered doing.
 
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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.
 

Ema

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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.
 

heapsreal

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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

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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.
 

SOC

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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

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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.
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.