getting worse from imunovir?

[richvank]

Out of curiosity, am I the only one who can't increase his DHEA-S number despite taking large doses of DHEA? I tried taking up to 100 mg a day, no change whatsoever in my results. DHEA has an extremely short half-life and the liver sulfate it to store it btw.

My guess is that a methylation block had something to do with this, don't know if it makes sense. Could have mean that it was converted rapidly to metabolites in my case.

Hi, gu3vara.

Some people with ME/CFS are low in sulfate. This is also true in autism, as published originally by Rosemary Waring. In both these disorders, there is a partial block in methionine sythase in the methylation cycle, and this causes too much of the homocysteine to be lost from the methylation cycle and instead to enter the transsulfuration cycle and pass through sulfoxidation to make sulfate, which then is excreted in the urine. The sulfate transporters in the kidneys can be blocked by mercury or other toxic metals, which build up because of glutathione depletion, and thus not enough sulfate is retained to do several important jobs, including sulfating DHEA, sulfating a range of toxins as part of Phase II detoxication, including phenols from certain foods, and supporting the cartilage in the joints. Some people take Epsom salt baths to raise their sulfate. Most can tolerate them, but a few can't. I suspect that these people have sulfate-reducing bacteria in their gut that convert sulfate to hydrogen sulfide, which is toxic at high enough levels. Fixing the methylation cycle block is the longer range solution to the sulfate deficiency problem.

Best regards,

Rich

 

[merylg]

Hi, gu3vara.

Some people with ME/CFS are low in sulfate. This is also true in autism, as published originally by Rosemary Waring. In both these disorders, there is a partial block in methionine sythase in the methylation cycle, and this causes too much of the homocysteine to be lost from the methylation cycle and instead to enter the transsulfuration cycle and pass through sulfoxidation to make sulfate, which then is excreted in the urine. The sulfate transporters in the kidneys can be blocked by mercury or other toxic metals, which build up because of glutathione depletion, and thus not enough sulfate is retained to do several important jobs, including sulfating DHEA, sulfating a range of toxins as part of Phase II detoxication, including phenols from certain foods, and supporting the cartilage in the joints. Some people take Epsom salt baths to raise their sulfate. Most can tolerate them, but a few can't. I suspect that these people have sulfate-reducing bacteria in their gut that convert sulfate to hydrogen sulfide, which is toxic at high enough levels. Fixing the methylation cycle block is the longer range solution to the sulfate deficiency problem.

Best regards,

Rich

Hi Rich,

If one also has a genetic mutation of the NaSi-1 gene giving rise to a faulty sulphate transporter protein, then this adds to the whole problem. There is then a loss of sulphate through kidneys and gut. Will an Epsom Salts bath to raise Sulphate help in this case?

meryl

 

[health_seeker]

Hi Melster:

I absolutely agree with you. I don't think I would be doing as well if I was just relying on Immunovir to modulate my immune system. I'm also using Thymic Protein and I'm taking generic Diflacon to knock out systemic fungal/yeast infection which I think is causing a lot of my problems and further hampering my immune system.

I think Immunovir is a good option but in case of "resistance" effects you can always modulate with different substances and "cycle", there is so many more immune-modulators such as LDN, Cycloferon, Graviola, Andrographis, Thymus Protein and many more.. cheers

 

[health_seeker]

Hi Niall:

Thanks for posting. This is good information. I think your theory of the body becoming resistant to the immune modulating mechanism with prolonged use makes a lot of sense. Sadly there are just no magic bullets here for us are there. I wonder how long I will feel well before my immune system crashes again. From the start I've been doing two months on and one month off. Out of interest, before you started on Immunovir what viruses were you positive for and what were your levels?

I have been on Imunovir four times since 2006, each time for six months duration. The first time I took it, I had a decent response to it in that I got back much of my energy but still had the reddened irritated throat. My immune system crashed after eight months of stopping it when I returned from vacation. Each time I took it thereafter, I had a poorer response from it; only getting some more energy but no relief from symptoms, otherwise. Since I have CFS and fibromyalgia, I think that the Imunovir significantly increased my body pain, especially when I was on the week which required taking 500mg (two tabs) three times a day. I now think that my diminishing response could be due to the fact that my body is becoming resistant to the immune modulating mechanism of the medication. So the next time I take it, I plan a course of therapy with three months on the medicine and one month off, then another three months on and one month off. I will also reduce the second week of three grams a day Monday through Friday to three grams on Monday, Wed. and Fri. and 1.5 grams on Tues. and Thurs. to help reduce the overall body pain. In fact, I did the reduction of dose the last time I took it and was not in quite as much pain as before.

 

[niall]

Hi Niall:

Thanks for posting. This is good information. I think your theory of the body becoming resistant to the immune modulating mechanism with prolonged use makes a lot of sense. Sadly there are just no magic bullets here for us are there. I wonder how long I will feel well before my immune system crashes again. From the start I've been doing two months on and one month off. Out of interest, before you started on Immunovir what viruses were you positive for and what were your levels?

The resistance theory is not mine. I learned about it on one of the Phoenix Rising forums where I am continually amazed at how well informed contributors are. I do not know the levels of the viruses which Dr. Klimas checked in 2005 but do know that EBV and HHV6 were elevated. I am negative for CMV so at least I don't have to worry about that nasty little pathogen. As for magic bullets, I am participating in the Phase 3 clinical trial for FDA approval of Ampligen which Dr. Klimas, among others, is conducting. This morning, I received the second dose of 400mg(the first four were 200mg) and thus far, I am tolerating the medicine well. It is too early to tell if the medicine is helping me. I must say that, overall, I do not feel nearly as bad with the Ampligen as when I was taking Imunovir. I am told that Hemispherix Biopharma is working on an oral form of Ampligen so that is cause for hope amid all the suffering and lack of effective treatments. I am going to take a bit of a rest now as I have been cautioned not to push myself too hard during this critical time.

 

[Marg]

I am doing very well on Imunivior. This is a different spelling wonder if it is different. I get it from Riverx in Canada. I have been taking it since a year ago in a August. My EVB which was very high is almost to normal, HHV6 not quiet as good as EVB but much better. The natural killer cells which were only operating at 5% are now on the low side of the normal range. The cytokines are still high...looking for something they cannot find, I guess.

I started at 500 Imunivor once a day and now take one in the morning and one at night, I do not take it on the weekends.

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.

Good luck! Give it a good try.

I suppose it is the same old story, some things work for some people and not others. I was very, very sick with EVB and HHV6. I do not feel a bit sick now, still have some pain though and sleep is still not right.

 

[health_seeker]

The resistance theory is not mine. I learned about it on one of the Phoenix Rising forums where I am continually amazed at how well informed contributors are. I do not know the levels of the viruses which Dr. Klimas checked in 2005 but do know that EBV and HHV6 were elevated. I am negative for CMV so at least I don't have to worry about that nasty little pathogen. As for magic bullets, I am participating in the Phase 3 clinical trial for FDA approval of Ampligen which Dr. Klimas, among others, is conducting. This morning, I received the second dose of 400mg(the first four were 200mg) and thus far, I am tolerating the medicine well. It is too early to tell if the medicine is helping me. I must say that, overall, I do not feel nearly as bad with the Ampligen as when I was taking Imunovir. I am told that Hemispherix Biopharma is working on an oral form of Ampligen so that is cause for hope amid all the suffering and lack of effective treatments. I am going to take a bit of a rest now as I have been cautioned not to push myself too hard during this critical time.

Niall:

I wish you the very best of results and really hope that you get some lasting improvement on Ampligen.

 

[niall]

Niall:

I wish you the very best of results and really hope that you get some lasting improvement on Ampligen.

Thank you. I am optimistic of significant improvement. I was told by one of the doctors conducting the study that, since I have responded to Imunovir, there is a good possibility that I will also respond to Ampligen. I will post changes good or bad as time progresses.

 

[Frankie Dene]

6 years ago I started imunovir and after 18 months, taking 2 tabs 3x perday I became normal. I had been extremely ill but when I started had improved quite a bit, still not able to look after myself. For 5 years I lead a normal life - to the gym etc, exercise relapses had been my main symptom but it seemed I could do anything and not relapse. However I came under a lot of stress 3 years ago and was taking only 2 per day (for 2 years) and had a big relapse and back to bed for 18 months. Back on imunovir 6 per day (now 3rd year) but don't know if it is doing its magic again. Have improved twice but relapsed both times after exercise - for 18 months or so. Now taking LDn (12 weeks) and am feeling better but still really weak. Who knoows if it works or what works but it was wonderful to be normal and I really did feel it was the imunovir!
I say don't give up too soon as I didn't feel the benefits for at least a year - but I also didn't have any negative symptoms either.

 

[OverTheHills]

I too have responded really well to imunovir. Its early days yet, I am in my 8th week and felt some improvement right from week 1, although I was told not to expect that. I have had no real side effects either. I think I will start a new thread because postive experiences with imunovir is a bit Off Topic for this one and also people might not see it on a long thread.

OTH

 

[redaxe]

Don't stop the immunovir! The sick feeling is the herkzheimer's reaction - that means feeling like you are going to die is good because lots of bad things are dying in tiny toxic explosions that your body has to clear out. Dr. Klimas in Miami explains it better, but when I told her I felt like I was going to die, she said it was good because that meant the medicine is working. Immunovir is like the terminator - it does the job, but lots of dead bodies are left lying around for the cops to clean up; a.k.a. toxins that your white blood cells have to clean up. Just imagine evil bugs dying a cruel death, and you begin to think you must be feeling better than they do.

This is the real conundrum. It seems that Isoprinosine is causing that sick reaction in me so I've decided to stop it when those symptoms arise. The thing is, is it a sign of a herxheimer or mild IRIS reaction (where a suppressed immune system is working better) or is it just amplifying an autoimmune response - which may or may not be associated with an infection?

If there is autoimmunity then putting more fuel on the fire is probably going to be a very bad idea. I get the impression that some parts of the immune system are weak, others may be malfunctioning from viral interference and causing damage.
I don't know if we know enough about this drug to really say that a bad reaction is a good thing. I don't think we're gonna get more answers until the Open Medicine Foundation gets their big patients trials going that focus on the most severe patients and find biomarkers that explain what is actually going on and to recognise patient subsets.
Maybe I should look at other immunomodulators like LDNaltrexone although its probably the same story there.

 

[Mij]

This is the real conundrum. It seems that Isoprinosine is causing that sick reaction in me so I've decided to stop it when those symptoms arise. The thing is, is it a sign of a herxheimer or mild IRIS reaction (where a suppressed immune system is working better) or is it just amplifying an autoimmune response - which may or may not be associated with an infection?

Be careful, it's not necessarily a good thing. I had a terrible relapse with Imunovir. I went from 80-90% improved back down to around 40% and it took yrs to finally feel somewhat better- but I never went back to baseline. I believe It was a severe IRIS reaction for me, HHV6 and EBV went sky high.

 

[redaxe]

Be careful, it's not necessarily a good thing. I had a terrible relapse with Imunovir. I went from 80-90% improved back down to around 40% and it took yrs to finally feel somewhat better- but I never went back to baseline. I believe It was a severe IRIS reaction for me, HHV6 and EBV went sky high.

May I ask if you were taking any other immune drugs or antivirals at the time and how much Isoprinosine were you taking?

 

[Mij]

Hi @redaxe I was not taking any other medication at the time. It's been 14yrs so I can't recall the dosage, the first week I was fine, but when I increased the dosage the second week I was very nauseous/faint like right after I took it. I continued to take it but got gradually got worse starting with upper back soreness so that I could not lie on my back, then within 3 weeks I progressively worse with viral symptoms. One day I got up and felt sore/achy/depressed like and just brushed, later that afternoon I could no longer walk- my legs went stiff and weak. My legs felt like stiff frozen sticks, it was as though I had no blood circulation in my legs. It was scary. The virologist advised me to discontinue.

 

[heapsreal]

Just a thought but the recommended dose is 6 tabs a day alternated with 2 tabs a day week about with weekends off.

many initially struggle with the top dose so they back the dose down. A few have just stayed at the lower dose all the time so 1 tab twice a day. Very gradually built up to 6 tabs a day. Some i know could go past 4.

i guess after several months, nk testing should be done and if its having no effect on improving this marker than consider other options??

Just a thought.

 

[heapsreal]

The resistance theory is not mine. I learned about it on one of the Phoenix Rising forums where I am continually amazed at how well informed contributors are. I do not know the levels of the viruses which Dr. Klimas checked in 2005 but do know that EBV and HHV6 were elevated. I am negative for CMV so at least I don't have to worry about that nasty little pathogen. As for magic bullets, I am participating in the Phase 3 clinical trial for FDA approval of Ampligen which Dr. Klimas, among others, is conducting. This morning, I received the second dose of 400mg(the first four were 200mg) and thus far, I am tolerating the medicine well. It is too early to tell if the medicine is helping me. I must say that, overall, I do not feel nearly as bad with the Ampligen as when I was taking Imunovir. I am told that Hemispherix Biopharma is working on an oral form of Ampligen so that is cause for hope amid all the suffering and lack of effective treatments. I am going to take a bit of a rest now as I have been cautioned not to push myself too hard during this critical time.

Hi niall,

This is an old thread that has been bumped up and noticed your post that you were just starting ampligen. 4 years on do you have anything you can share with us ? Hopefully recovered with no relapses.

cheers .

 

[Thomas]

@niall yes I'd love to know how the Ampligen went etc? If you could share some information that would be much appreciated

 

[Thomas]

Imunovir, which I thought would be a benign treatment at worst, absolutely kicked my ass from the first dose. I quit after a week. I probably started too high but but regardless I wasn't ready to bear that kind of symptom flare and relapse for a few weeks or months before seeing any improvement, which said improvement may have never came.

I may get back into Imunovir at a later date but right now, no thanks.

 

[koco]

After a few days on Imunovir for complex immune deficiency issues, I became very ill with what feels like a terrible flu. I spoke with my specialist at NSU's Institute for Neuro Immune Medicine (Nancy Klimas' clinic) today and she told me to discontinue the drug. She explained to me that since the drug boosts the immune system, it can also exacerbate any autoimmune issues. In my case, this means allergies and asthma. Now, I'm taking a medrol pack to try to get the asthma under control. I wanted to share this with the community. I am glad I thought to call my doctor and give an update because I was hoping I was just herxing and that I'd be better after I went through it. If you're suffering on Imunovir, scrutinize whether or not it's an autoimmune reaction and if it is, Imunovir will continue to make you sick. Good luck!

 

[koco]

After a few days on Imunovir for complex immune deficiency issues, I became very ill with what feels like a terrible flu. I spoke with my specialist at NSU's Institute for Neuro Immune Medicine (Nancy Klimas' clinic) today and she told me to discontinue the drug. She explained to me that since the drug boosts the immune system, it can also exacerbate any autoimmune issues. In my case, this means allergies and asthma. Now, I'm taking a medrol pack to try to get the asthma under control. I wanted to share this with the community. I am glad I thought to call my doctor and give an update because I was hoping I was just herxing and that I'd be better after I went through it. If you're suffering on Imunovir, scrutinize whether or not it's an autoimmune reaction and if it is, Imunovir will continue to make you sick. Good luck!

Update: I was quite sick for over three weeks, but am finally recovered.