getting worse from imunovir?

leaves

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I was thinking that my deterioration in the last 6 months could be due to the imunovir. I was blaming LDN for that. Any (bad) experiences?
 

alice1

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When I was at 3 mgs of LDN I stopped taking a lot of my other meds and Imunovir was one of them.I felt off and jittery.
As heapsreal wrote stop for awhile and see what happens.
 

FunkOdyssey

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I took LDN in isolation, and it definitely made me worse. So I would have absolutely no reservations about blaming LDN.
 

leaves

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Yes I stopped taking it today..
the thing is I have stopped LDN 4 months ago and I am still so much worse than I was. I guess that if LDN is to blame that this means permanent set back, and that is not something that I'd like to think of. So here is hoping that stopping imunovir helps...
 

maryb

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Hi leaves - I took Immunovir about 3 years ago,when I began taking it I was feeling quite well, even after the first dose though I headed downhill and so it continued, after 2 weeks I stopped, was it the Immunovir I really don't know but I would never take it again, my symptoms seem to improve at the same time every year towards end of summer September/October and then I deteriorate again and it was about that time.
I'm in the up-regulated immune system camp so could be a connection there, do you get every cold/virus going or like me the opposite?
 

leaves

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Thanks for sharing your experience. I never get colds so I guess I'm upregulated too. Did you notice any direct improvement after stopping ?
 

leaves

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Laurel did you improved back to your old level after stopping? How long did it take for you to improve?
 

LaurelW

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Yeah, my old level wasn't good, but it was better than being on the Immunovir. I'd say it took about a month to get back. The main symptom I got from the Immunovir was increased pain, which I have all the time, but it was pretty relentless and unbearable then. Manageable now with occasional doses of ibuprofen and lots of warm baths, which also help my OI.
 

Mij

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I took Immunovir for three months last winter and it made me much worse.
I took Immunovir for 3 weeks and it gave me a complete relapse, I went into a complete viral/neurological state. I never went back to base after discontinuing and aquired more symptoms that I never had before. Not for me.

Mij
 

floydguy

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Any good reports on Imunovir? I am literally about ready to start taking it. I am certainly going to monitor very closely. Thanks for the heads up.
 

maryb

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Leaves don't want to depress you but it was actually about 12 months before I improved after taking the Immunovir, It just kept going on and on, I thought I was never going to improve again but I did, keep on taking what feels right is my advice, I don't do herx, I just stop whatever it is my body is objecting to, maybe I won't ever get better that way I dunno but at least I have some quality of life, I potter about etc etc.
 

alice1

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I wouldn't suggest you don't take it floydguy but start at very doses and see how you react to it.
There are people who've had very good experiences but as we're all so different it's important to monitor yourself so you can catch it early if doesn't agree with you
Good luck!
 

Mij

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Wow Mij,
Thats... Terrible. How long ago did you take it?
Oh around 8-9 years ago. I also want to mention that don't assume because you are feeling worse that it is a good thing or herx type effect because it is not.

After taking my dose I would feel nauseous as if I was going to pass out.

Mij
 

Riley

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Oh around 8-9 years ago. I also want to mention that don't assume because you are feeling worse that it is a good thing or herx type effect because it is not.

After taking my dose I would feel nauseous as if I was going to pass out.

Mij
I totally agree with this. Not specifically with imunovir, but treatment in general. I personally have never felt worse and then gotten better. Everything that has made me worse immediately made me worse permanently, and vice versa.
 

Mij

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Another thing, Riley, my ME specialist told me this was the case with all of his patients; once they had a relapse or negative experience with meds, supplements etc. they just stayed worse off in the end.

Mij
 

richvank

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Hi, all.

You might be interested to know that so far only 6 people have rated Immunovir on the CureTogether.com site:

http://www.curetogether.com/chronic-fatigue-syndrome/treatments/

It looks as though these ratings ranged over the whole spectrum from making things a lot worse, to having no effect, to giving major improvement. There seems to be a wide variation in the response of different people to Immunovir. I hope more people will sign in at CureTogether.com and take the survey of treatments for CFS there. The more data we have, the better.

With regard to the notion that one has to feel worse first, before feeling better on a treatment, I used to be very leery of this idea. However, experience over the past three years with the methylation treatments has convinced me that at least in the case of this type of treatment, this idea is valid. The reason seems to be that restoring the methylation cycle to normal operation brings the immune system and the detox system back up as well, and that starts the process of killing accumulated pathogens and mobilizing stored toxins. These processes can indeed cause a person to feel worse. However, I don't think there is a way to get rid of these pathogens and stored toxins without experiencing some unpleasant symptoms for a while. Quite a few people have testified that this has been their experience, but things do improve after these problems are cleared out. More information on this treatment and the biochiemistry behind it can be found at www.cfsresearch.org until the end of this month. Click on CFS/M.E. and then on my name.

Best regards,

Rich
 

leaves

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:(( I do not want to stay like this. I want to get BETTER
Jeesh why cant things be easy, and meds be working