Nexavir Experiences Please?

[sandralee]

My daughter and I have a script for Nexavir, and were trying to decide whether or not to go ahead.

As the cost of this product is so high, we cant adopt our usual what have we got to lose attitude, when trying new treatments.

I would greatly appreciate any feedback, both positive and negative, on your experiences with Nexavir. In particular: Did it help, and if so, in which ways? How long was it before you noticed any improvement? What dosage and frequency Were you using? How long do you have to be on it? Were there any side effects?

Were both currently on Rich VanKs methylation protocol, and are addressing gut issues with antibiotics and probiotics.

This is such a hard decision because of the financial Burdon, but I will try anything, particularly for the sake of my daughter. That said, any decision to proceed must be an informed one, and not made out of desperation.

Thanks in advance for any responses. The wisdom and generosity of you all here is truly amazing.

All the best,

Sandra

P.s. Apologies for any delays in responding to posts, as I actually find posting very stressful and energy draining. Written communication was not my strong point even before the onset of ME ?.

 

[heapsreal]

When i looked into nexavir it was extremely expensive and from what i read about it, it wasnt helping people as much as the price correlated with the product ie something that expensive i thought should have been getting better results. I think i would look into antivirals or the immune modulators like immunovir or cycloferon. Thats just my experience. Plus i think it will take a few different treatments together not one single thing will turn cfs around, i see your treating a few different things which is the go.

Hopefully you get some positive replies from people who have used it.
good luck,

cheers!!!

 

[sandralee]

Hi Heaps,

I was on valtrex for 6 months a couple of years ago, but it didn't help. Maybe the dose was too low, or the duration was too short. I don't know.

I was attracted to nexavir for it's low side effects, as both my daughter and I react badly even to most innocuous supplements.

I had previously looked into immunovir and cycloferon before, and can't honestly think why I discounted them. I will give them another look.

Thanks for your suggestions.

Sandra

 

[*GG*]

I think i would look into antivirals or the immune modulators like immunovir or cycloferon. Thats just my experience.

Hopefully you get some positive replies from people who have used it.
good luck,

cheers!!!

How about Low dose naltrexone (LDN)?

GG

 

[sandralee]

Hi Ggingues,

I've looked into LDN, but didn't like the reported side effects, and the difficulties experienced by many in establishing a satisfactory dosage. I also don't have fibro pain.

I'm already struggling to find a side effect free dosage on the methylation protocol, and just couldn't handle another problem at this point.

thanks for your reply. Much appreciated.

Sandra.

 

[heapsreal]

Hi Heaps,

I was on valtrex for 6 months a couple of years ago, but it didn't help. Maybe the dose was too low, or the duration was too short. I don't know.

I was attracted to nexavir for it's low side effects, as both my daughter and I react badly even to most innocuous supplements.

I had previously looked into immunovir and cycloferon before, and can't honestly think why I discounted them. I will give them another look.

Thanks for your suggestions.

Sandra

I just mentioned other things as i know nexavir is expensive as i looked into it myself, i just couldnt find too many people that had used it.
As for antivirals, it depends what viruses you test positive for and what antiviral is most appropriate, 6 months is a good gauge if the particular antiviral was going to help and u should have know by then if it was helping , longer periods are needed to make permanent inroads though. Other antivirals like famvir or valcyte have a wider range of use then valtrex and might be worth looking into. But u cant go wrong using something to strengthen your immune system. Maybe nexavir and an antiviral??

If u try nexavir let us know here how you go.

cheers!!!

 

[sandralee]

Hi Heaps,

I looked into cycloferon again through the thread you started, and I actually think it might be a goer for me.

I was under the misapprehension that it was only administered by IM injenction, but now I know it's in tablet form as well. Nexavir is subcutaneous which I can handle, but self administered IM,no way. Too much of a chicken .

Anyway I'm sending off for the cyclo tablets, and I intend being the guinea pig, before we'd consider it for our daughter.

Thanks so much for this recommendation.

Sandra

 

[soxfan]

I was on Nexavir for 2 months (April and May 2011). It did absolutly nothing for me. I didn't have any side effects or postive effects. I started with the injections but they were too painful (the preservative made it hurt while being injected). So the doctor told me I could try it as a gel which my husband compounded. It had great absorbtion but smelled terrible. It was expensive plus paying for the needles etc. I decided after two months to quit.
My doctor agreed saying that if it is going to be of any help it won't take long..(Dr. Komaroff).
I had high titers to EBV and HHV6 which is why he wanted me to give it a try. Personally I haven't read of it helping anyone...I wouldn't bother with it.
You can PM if if you have any other questions about it.

Also it is not a subcutaneous..or rather shouldn't be because there is so much volume it will hurt much more than the IM which really didn't hurt. It was the solution itself that was painful. My doctor advised me not to do subcue because it would expand the muscle too much when trying to inject it all in.

 

[sandralee]

Hi Soxfan,

Thanks for telling me about your experience with nexavir. A firsthand account is invaluable.

The issues with subcutaneous administration alone, would certainly knock it out of the ball park for me.

All the best,

Sandra

 

[Sushi]

I was instructed to pull up a pinch of tummy fat (away from the navel), and inject is straight down with a half inch 30 or 31 gauge needle. Then to push it in very slowly. This is another technique of subcut.

It doesn't hurt this way. I am not bothered by the preservative. It is true that some don't respond to nexavir but others have found it very helpful.

Best wishes on your decision.

Sushi

 

[sandralee]

Hi Sushi,

Thanks for the alternative technique. I certainly have a lot to consider.

All the best,

Sandra

 

[soxfan]

I decided to try the Nexavir because Dr. Komaroff had wanted me to. He did say if his patients respond it is fairly quickly..within a month. I will give just about anything a try even though it was expensive and didn't do a thing for me.

I will say that the IM really didn't hurt and maybe at some point I could have become use to the stinging but since I had an alternative which the doctor said was acceptable then I went ahead and tried for 2 months.