Dr. Bateman answers IOM questions from the community: Part 2
Clark Ellis brings us Part 2 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community …
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getting worse from imunovir?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by leaves, Jan 6, 2011.

  1. richvank

    richvank Senior Member

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    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
     
  2. merylg

    merylg Senior Member

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    Sydney, NSW, Australia
    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
     
  3. health_seeker

    health_seeker

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    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.


     
  4. health_seeker

    health_seeker

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    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?

     
  5. niall

    niall

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    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.
     
  6. Marg

    Marg Senior Member

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    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.
     
  7. health_seeker

    health_seeker

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    Niall:

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

    niall

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    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.
     
  9. 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.
     
  10. OverTheHills

    OverTheHills

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    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
     
  11. redaxe

    redaxe Senior Member

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    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.
     
  12. Mij

    Mij Senior Member

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    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 likes this.
  13. redaxe

    redaxe Senior Member

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

    Mij Senior Member

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    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.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    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.
     
    minkeygirl likes this.
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)

    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 .
     

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