Help deciding whether to take imunovir

[lyonsden10]

My doctor is insistent that Imunovir is the only way to get my killer cell activity to rise from 8%. I have yet to find anyone who has really been successful with it. There seem to be few studies on it.

I am extremely chemically sensitive and reacted badly to inosine from the health food store. My worst symptom is dizziness and i read that Imunovir can increase that. Plus, I have interstitial cystitis and the whole uric acid increase concerns me. And I have heard about wicked migraines, and already suffer from those.

It seems to me that stress reduction can help increase the activity. And there must be other alternatives. I cannot believe there are no choices.

My doctor refuses to retest my killer cells unless I take the medicine, but I think it may be improved due to other things I am doing.

I'm really struggling with this so if anyone has some insight, I would love to hear it.

Thanks!

 

[miranda]

any physician that tells you s/he won't test you unless you take something that you are sure will cause more harm is not an MD you want to continue working with...find someone new. I've heard Immunovir has worked for many patients and not for others. There are natural immune supplements you might to consider - wild grown Reishi mushrooms, available at Chinese stores and in health food sections where indoor grown Reishi mixed with other mushrooms is sold in capsules; there are plenty of immune boosting supplements for NK cells.

 

[ukxmrv]

I've been fine with Immunovor. Chemically sensitive with many meds and supplements that I cannot tolerate. Bloods tests for uric acid have been done and are OK.

Not found other ways to help my immune system. Loads of stress reduction things have not helped. Supplements have not helped. Mushrooms a total no/no for me.

Good luck in finding alternatives. We are all different and something out there may work better for you.

XMRV

 

[floydguy]

I just started taking it. So far no problems. FYI, I am generally tolerant of most medications with the exception of those that aid sleep like Ambien.

 

[dsdmom]

I don't think you'll know unless you try. Unfortunately I'm one of the ones that could not tolerate it. I tried it twice, at very low doses. The first time I had horrible headaches and the second time made me just feel horrible all over. I decided it wasn't worth it. But again, there are others who have done well with it. Why don't you try it at a very low dose and just see how you do?

 

[maryb]

I agree with dsdmom you wont know until you try it, at a small dose I would suggest.
It made me feel quite ill and I went downhill or a long time following taking it for only 2 weeks, was it a coincidence I don;t know. I you really don't want to take it dont then just tell the silly doctor you have taken it and he'll do the re-tests you want, play them at their own stupid games.

 

[heapsreal]

The only way your going to know is to try it really, plus i think alot of people dont use it because its so dam expensive, if u can get it cheaper or insurance covers it, go for it. There is a thread on cycloferon which is a med that improves nk function, its quite cheap and a few of us now are using it, some of us are feeling better from it and a couple are getting a reaction from it, possibly because its reving up their immune system, its under the antiviral posts.

My doctor is insistent that Imunovir is the only way to get my killer cell activity to rise from 8%. I have yet to find anyone who has really been successful with it. There seem to be few studies on it.

I am extremely chemically sensitive and reacted badly to inosine from the health food store. My worst symptom is dizziness and i read that Imunovir can increase that. Plus, I have interstitial cystitis and the whole uric acid increase concerns me. And I have heard about wicked migraines, and already suffer from those.

It seems to me that stress reduction can help increase the activity. And there must be other alternatives. I cannot believe there are no choices.

My doctor refuses to retest my killer cells unless I take the medicine, but I think it may be improved due to other things I am doing.

I'm really struggling with this so if anyone has some insight, I would love to hear it.

Thanks!

 

[doug]

I took Inosine with DMAE (similar to Immunovir) and it really helped. Taking L-Arginine at the same time could also have increased the anti-viral effect. Doses I took were milder than what Dr. Cheney recommends.
Here's a link to a past topic where I discussed this: http://forums.aboutmecfs.org/showth...atments-have-CURED-people&p=118302#post118302
If you are chemical sensitive, possible your body detoxification is overloaded or not working well and this is why you can't tolerate some supplemements. Another thing to consider is Celiacs disease. You should also not take Inosine or Immmunovir if you have problems with gout, and your Dr. can order tests for uric acid levels.

You can build up your detox ability with vitamins, antioxidants and glutathione promoters before starting on anti-bacterials or antivirals so toxins from viral or bacterial die off will not effect you as much. Some vitamins, supplements and antibacterials also are heavy metal chelators. Metals and toxins will get reabsorbed in your intestine and redeposited unless you also take dietary fiber to bind and help eliminate. Other things to increase immune system and natural killer cells include low dose naltrexone, astralagus, probiotics, transfer factors, message.

 

[lyonsden10]

Thanks for all the feedback - am trying and...

I never got email that there were responses and I'm so happy to hear from others about this!

I started on 1/8 of a pill on Monday and have taken a single 1/8 dose each day. So far, I'm not doing well even with that tiny dose. Having some tightness with breathing, increased dizziness, flu-like symptoms with headache throbbing and body aches, increased brain fog.

I am truly trying to be a compliant patient, but I just think this is not the right medication for me. The doctor puts a lot of fear in me, not to mention the fear I put into myself.

She is not encouraging about the mushroom therapy. I don't even know if I can take that. To me, I really think stress reduction could be key. I've read a lot about stress and the immune system.

Anyway, I'm reading all your comments with a lot of thought and wrote to my doctor today to let her know how I was feeling.

Thanks!

 

[Marg]

I never got email that there were responses and I'm so happy to hear from others about this!

I started on 1/8 of a pill on Monday and have taken a single 1/8 dose each day. So far, I'm not doing well even with that tiny dose. Having some tightness with breathing, increased dizziness, flu-like symptoms with headache throbbing and body aches, increased brain fog.

I am truly trying to be a compliant patient, but I just think this is not the right medication for me. The doctor puts a lot of fear in me, not to mention the fear I put into myself.

She is not encouraging about the mushroom therapy. I don't even know if I can take that. To me, I really think stress reduction could be key. I've read a lot about stress and the immune system.

Anyway, I'm reading all your comments with a lot of thought and wrote to my doctor today to let her know how I was feeling.

Thanks!

I have been taking Imunovir sincre August. I have had bouts of feeling fluey but that means it is working. I Take 1 pill twice a day with the weekend off. I did not have a bit of trouble with it and I do not take meds well at all. I think the only side effect I read about was in increase in uric acid. So far so good. I do not know when I will be tested. I still have 150 left to take. I was very, very sick when I started and am feeling much better even when the fluey stuff hits. Everyone is different though.

 

[Marg]

Help deciding whethere to take Imunovir

I have been taking Imunovir sincre August. I have had bouts of feeling fluey but that means it is working. I Take 1 pill twice a day with the weekend off. I did not have a bit of trouble with it and I do not take meds well at all. I think the only side effect I read about was in increase in uric acid. So far so good. I do not know when I will be tested. I still have 150 left to take. I was very, very sick when I started and am feeling much better even when the fluey stuff hits. Everyone is different though.

One more thing...maybe what you are experienceing is die off or the toxins from it.

 

[lyonsden10]

Thanks. Well, the dr. Had me dissolve a tiny piece in water and just take a tbsp. I agree that some of the symptoms may be dieoff, but difficulty breathing is unnerving and i think that is more of an allergic reaction. I will try one more week on the tiny dose unless the breathing issues get worse.

This is great information. Thanks to you all. I don't expect to feel better, but yes, I do expect my NK activity to increase.