Inosine Reaction

heapsreal

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my thinking on this is starting to change. I and i think others have thought that th1 and th2 is like a see saw its either one way or the other but im starting to think its not that simple. We need to improve both without over or under production but it seems common that cfsers over produce th2 side but i dont think that it includes everyone mainly the ones who seem to adversly react to normal substances etc and increased general alergies etc
 

ukxmrv

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I've not had an adverse reaction to Immunovir (Inosine pranobex) although the Th1/Th2 tests were irregular and my CFS doctor then said that they showed the pattern Dr Cheney talks about.

It may be something more specific to the individual, the set of drugs/supplements or even the set of pathogens we are carrying. Just don't know. I'm not a firm believer in the herx response and anything that has done me good and resulted in a decrease in ME symptoms (and an increase in functioning) has never caused a severe bad reaction at the start. Valtrex worked liked a dream from the start for example. MAF314 had some immediate good results and some transient but tolerable bad ones. Doxycycline for me caused terrible reactions until Valtrex and Imunivor were taken at the same time.

We just don't know enough here. Bad reactions could be IRIS or a herx or something else we don't know about yet. To an extent we are all frailing around in the dark here.
 

Lotus97

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my thinking on this is starting to change. I and i think others have thought that th1 and th2 is like a see saw its either one way or the other but im starting to think its not that simple. We need to improve both without over or under production but it seems common that cfsers over produce th2 side but i dont think that it includes everyone mainly the ones who seem to adversly react to normal substances etc and increased general alergies etc
I agree that it's probably more complicated. For example, some allergic responses are supposed to be a Th2 response, but quercetin is listed as a Th2 supplement and yet it helps people with allergies.

I don't know how accurate this list is, but it suggests that things are more complex.
http://www.healthy.co.nz/ailment/1159-anti-inflammatory.html
SP32-20130311-102204.png
 

ukxmrv

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I don't know if it is really more complex. Another way to look at it would be that there isn't enough evidence to tell us if any of these supplements or drugs are doing any of the things claimed for them. We need evidence that they do what they say in lots of different populations and genetic types.
Therefore taking a drug or a supplement just because it is said to have one action on the say so of a website or doctor with no evidence of what it does for a PWME or CFS could be pointless, harmful or just spot on. We don't know.

Imunovir, has had some published research though. Not enough of course.
 

heapsreal

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I don't know if it is really more complex. Another way to look at it would be that there isn't enough evidence to tell us if any of these supplements or drugs are doing any of the things claimed for them. We need evidence that they do what they say in lots of different populations and genetic types.
Therefore taking a drug or a supplement just because it is said to have one action on the say so of a website or doctor with no evidence of what it does for a PWME or CFS could be pointless, harmful or just spot on. We don't know.

Imunovir, has had some published research though. Not enough of course.
I think this has to do with Alex's 'orange and lemon' theory. there are alot of different treatments and we all react differently to them but the only way to know is to bite in and taste it, some are going to be right and taste like oranges and if like me alot are going to be lemons, i have had my share of lemons, trust me, cost me a few$$$ for lemons. Sometimes if u leave a lemon long enough it can turn into an orange and vice versa. :thumbsup:

An educated guess is the only way to try and sort out between the lemons and oranges before u bite in.
 

Lotus97

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I don't know if it is really more complex. Another way to look at it would be that there isn't enough evidence to tell us if any of these supplements or drugs are doing any of the things claimed for them. We need evidence that they do what they say in lots of different populations and genetic types.
Therefore taking a drug or a supplement just because it is said to have one action on the say so of a website or doctor with no evidence of what it does for a PWME or CFS could be pointless, harmful or just spot on. We don't know.

Imunovir, has had some published research though. Not enough of course.
Another way to look at it would be that there isn't enough evidence to tell us if any of these supplements or drugs are doing any of the things claimed for them.
I could say that about most of the supplements I'm taking:lol:(not just the ones for the immune system)
 

heapsreal

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Another way to look at it would be that there isn't enough evidence to tell us if any of these supplements or drugs are doing any of the things claimed for them.
I could say that about most of the supplements I'm taking:lol:(not just the ones for the immune system)
Generally the supps i use are for general health reason and some backed up by studies done eg q10 has been shown to be low in us and dr klimas recommends supplementing this. Another is carnitine which in studies has been shown to be low. oxidative stress has been shown to be high in us cfsers so antioxidants i think can help slow down disease progression. I personally havent had these tested but going off studies done on cfs?

I think if we supplement for general health and also treat things that are low eg low dhea has been low in myself, then doing this can help us continue fighting this illness.

it would be nice if someone could just put all the answers in our lap:ill:
 

bertiedog

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Just wanted to post my experience of inosine. I have been taking 500 mg x 3 since Tuesday so 3 days and yesterday I started aching very badly and felt very unwell, sort of fluey. I should say I haven't been really well for nearly a month because I have had 2 nasty viruses which my IS doesn't seem to be able to kill off.

I did feel better for a few days but the inosine seems to have changed things for the worse. Today I have just taken one am and just taken another one ( 6.30 pm) so will be interested to see if I start aching again..

I did have 2 packets of Immunovir a couple fo years ago but didn't get these symptoms. I would prefer to take that again but cannot get it without having to see Dr Munro at Breakspear which costs a fortune and isn't really good value for money I feel. I did ask Dr Myhill's secretary if Dr M could prescribe it but they aren't able to get hold of it.

Pam
 

ukxmrv

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Pam, why not order from Goldpharma or one of the other internet suppliers.

I've had Immunovir (Newport) and a couple of generics now and all seem to be the same (I've not had tests to prove this though). A search on the internet said that Newport was now part of Ewopharma and I bought Immunovir with that label last year. Maybe they have re-badged it?

Not sure why Dr M can't get hold of it as I could through my local chemist in London (when I had a NHS script for it). Contact Newport if there is a problem (I've spoken to them in the past and they were helpful then).

http://www.newportpharmaceuticals.com/contact
 
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I took an experimental combination of Inosine- Oxymatrine and Ribavirin. This was a 3 month experiment. Brutal. I ended up in the E.R. with a huge lymph node on the right side of my neck....super sick! That treatment went all kinds of wrong. My immune system has been stuck on fight ever since...I have fevers daily now and I am much worse. Happily....most of us who tried it did not have this horrendous of a reaction...but I am not surprised, I never react normally to any meds. I will not touch that or oxymatrine again...I did not tolerate it and it flipped my immune system even further in the wrong direction...I am happy and even a little envious of the people it did work for...
 

heapsreal

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Do u know if the lymph node was an infection like ebv??
Had u taken any off those immunevmods on there own first before taking all 3 at once?
Thanks for sharing. Its good to hear both positive and negative experiences.
 

Mij

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I took an experimental combination of Inosine- Oxymatrine and Ribavirin. This was a 3 month experiment. Brutal. I ended up in the E.R. with a huge lymph node on the right side of my neck....super sick! That treatment went all kinds of wrong. My immune system has been stuck on fight ever since...I have fevers daily now and I am much worse. Happily....most of us who tried it did not have this horrendous of a reaction...but I am not surprised, I never react normally to any meds. I will not touch that or oxymatrine again...I did not tolerate it and it flipped my immune system even further in the wrong direction...I am happy and even a little envious of the people it did work for...
I took Equilbriant and Inosine daily but didn't have a reaction at all, I also had a bottle of Ribavirin but didn't touch it. I didn't feel any different, good or bad.
I had a terrible reaction/relapse from Immunovir I took years ago after only taking it for 3 weeks and never went back to baseline. Now I leave my immune system alone.
 

knackers323

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Chris and the others, how are you going on the inosine?

Mij, at the beginning you thought it was having an effect. But not anymore?
 

Mij

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@knackers323 I don't think my reaction was to inosine after all. I tend to get neurological viruses (vertigo) every once in awhile and I'm guessing it was not related to the inosine.
I was also starting perimenopause (didn't know at the time) and this was the reason I was feeling hot.

I continued taking it for a few months with no reaction good or bad.
 

knackers323

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Sorry if this has already been answered but is the inosine, the supplement that can be brought from any health food store?

How does this differ from immunovir?

Thanks
 

heapsreal

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I don't even combine it, I just use plain d inosine I buy from Amazon. I felt good on it for a while, then went way downhill and stopped most supplements to start Valtrex and to figure out what was and wasn't working. I keep meaning to give inosine another try, but I'm feeling ok right now and I do to want to screw it up.
I have been taking AHCC for about a month and a half now and I think it may be helping with the flu like symptoms (not so much the fatigue yet). My sister in law read about it and recommended it, it's from mushroom, but very expensive since she said I should try 3 to 5 grams a day. Which makes it about $54 for 10 days worth.