The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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What are the commonly available immune modulators?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Nov 16, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    Someone recently posted asking about commonly available natural anti-virals which made me curious to ask about the common immune modulators? I am not sure if any of my current regime fits into the immune mod category (except for Epicor?) and if this is something I should add? I have Hashimoto's and don't want to worsen the autoimmune component. When I asked my doctor about Immunovir, he said it is not sold in the US and not regulated for safety and he did not recommend it for me.

    I guess I have a few questions-

    1) How exactly does an immune modulator work and how do I know if a medication or supplement fits into that category?

    2) What are the ones that PWC's most currently take?

    3) What effects do you guys notice (good, bad or indifferent?)

    4) If I have Hashimoto's would that rule out immune mods for me?

    5) Are these a short or long-term treatment?

    Thanks in advance for any info and no info is too basic (assume I know nothing LOL.)
     
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Dear Gingergrrl,
    An immune modulator is just anything that shifts the way the immune system behaves, in any one of a hundred different ways - steroids, neurofen, methotrexate, cyclophosphamide, cyclosporin, vaccine adjuvant, gold, sulphasalazine, plasmapheresis, rituximab, colchincine, chloroquine, minocycline, anti-thymocyte globulin, IVIG, Campath-1H, alcohol, exercise - the list is endless and each one is doing something different.

    I wouldn't personally recommend any of them for PWME just yet - except maybe neurofen! If there really is an immune problem then presumably anything is as likely to make things worse as better since we do not know whether it's up or down in the first place.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @Jonathan Edwards What is neurofen, I have never heard of this? The immune mods that I keep hearing about are Immunovir, Inosine, and Equilibriant but was curious if there were others? I think Epicor (what my doctor recommended) is an immune mod but was not positive? I didn't realize all of those things you mentioned were immune mods (and some of them I have never heard of!)
     
  4. Mary

    Mary Senior Member

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    @Gingergrrl - I had good results with a product called Moducare. It's made from plant sterols and sterolins. Here's an article: http://www.moducare.com/pdfs/moducare-summary-of-research.pdf
    and here's another one: http://drhoffman.com/article/plant-sterols-and-sterolins-potential-immune-system-modulators-2/

    After several weeks of taking it I realized I was not getting as sick each time I crashed, and was getting over being sick quicker. It was quite noticeable. I took Moducare for about a year and then realized it seemed to have reached its usefulness, I had reached a plateau, so I stopped taking it. But am very glad I found it.

    I had read that plant sterols were supposed to be useful but had no results from sterols alone. However, after I started taking Moducare, a combination of sterols and sterolins, my immune system started functioning better - I was able to get well quicker from my recurring infection. It is the first product (after years of trying various things) that really helped my immune system. And, I had no bad side effects.

    If I were to wait for mainstream medicine to help my immune system, I'd still be waiting. As it is, I keep trying new things, after doing my own research, and start slowly, in case I react badly to something.

    Mainstream medicine is not going to invest a lot of money in studying plant sterols and sterolins, or in nutrition in general, because in general there are not millions to be made. It's unfortunate but true.

    Mary
     
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  5. liquid sky

    liquid sky Senior Member

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    Neurofen is just Ibuprofen.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Mary This is so weird, I actually took Moducare earlier this year and it was the first product that my former naturopath recommended back when we both thought that my full diagnosis was Hashimoto's (before we knew I had ME/CFS.) She felt it would help regulate the thyroid stuff and I took it for a while but stopped b/c I never felt any improvement (but never noticed anything bad from it.) I didn't even know that it was an immune modulator! Once she saw that I had re-activated EBV, she switched me to Monolaurin, Maitake Mushroom and a bunch of other stuff.

    I literally never get colds, flu, fever or anything like that and the last time I was sick (in that way) was Jan 2013 which I now suspect was the re-activation of EBV.

    Are there immune mods for people who do not get colds/fever but that can help to augment the anti-viral treatment or am I interpreting their function incorrectly?

    How weird, I've never heard of Neurofen! Is it just like Advil? And if so, why would Advil be an immune modulator?
     
  7. Ema

    Ema Senior Member

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    Nurofen is what the Brits call Advil.

    Almost all the NSAIDS seem to have effects beyond pain relief. I was reading a few days ago about ibuprofen and inducible nitric oxide synthase from the thread on nitric oxide.

    Also, ibuprofen may contribute to a leaky gut so I would be extremely moderate with it.
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @Ema thanks for explaining and I never take Advil or anything in that class b/c it bothers my stomach and can potentially cause heart problems. I just did not know they were considered immune mods!
     
  9. halcyon

    halcyon Senior Member

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    Immunovir and inosine are different forms of the same thing. Proboost (aka thymic protein A) is another one I've seen discussed here.

    As Dr. Edwards mentioned, taking one just because may not be a great idea if you don't know where you're starting from. Stimulating an already activated immune system could throw fuel on a fire you may not want burning in the first place. With that said I believe that immune modulators do have a place in treating this disease, depending on what's apparently causing it.

    I'm currently taking Equilibrant for a confirmed chronic enterovirus infection. I believe in Dr. Chia's research and I think he has clearly demonstrated that interferon can help treat chronic enterovirus, and the oxymatrine in Equilibrant causes interferon to be produced in the body. For enterovirus the choice is pretty clear, either do nothing and remain sick or take Equilibrant. For other chronic infections, Equilibrant may not be the right thing to take, it's hard to know.

    It's too early to tell for my Equilibrant trial. I have noticed some slight improvements, but I've also been at a very low point that began weeks before I started on Equilibrant. I've found it to be extremely potent. I went from 1/4 pill to 1/8 to 1/16 and that was still too much. The pieces became too small to split in the pill cutter, I have to grind them up and measure the dose on my scale. 1/16 of a pill is about 60mg, I'm currently taking 10mg.

    I have seen it repeated here that Dr. Chia doesn't recommend Equilibrant for folks with confirmed autoimmune issues.

    For enterovirus and Equilibrant treatment, it's long term. 1-2 years and possibly an indefinite maintenance dose.
     
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  10. Ema

    Ema Senior Member

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    Some NSAIDS also have antiviral properties which is why they are being trialed in the Pridgen studies along with a traditional antiviral.

    I would personally be wary of anything that is immunostimulatory with Hashi's. The good news is that many herbals are considered adaptogenic which means that they will correct imbalances whichever way they fall. The bad news is that there are no randomized clinical trials and there probably never will be unless something can be patented.

    I found inosine to be helpful and if your uric acid levels are low, I would consider that one for sure. That purine pathway seems to be an issue for many of us.
     
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  11. lansbergen

    lansbergen Senior Member

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    Ibuprofen did not help me.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Yes, I'm not recommending neurofen/nurofen/ibuprofen/cuprofen/advil, it is just that it can be good for headaches and is less poisonous (a bit) than most of the others.

    The real point is that 'immunomodulator' does not mean anything particular - it can mean whatever you like to do with some effect on the immune response. I suspect that for the things that get sold as immunomodulators nobody has the faintest idea what the modulation would do in any known disease, let alone ME. Pseudosciencebabble rather than psychobabble I am afraid.
     
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  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Immune modulators is a broad term used, but amongst the cfs/me experts this mostly refers to substances such as ampligen and immunovir which appear to work through their interferon inducing effects. Interferon itself has antiviral properties but is also known to increase nk function.

    Russia and other eastern block countries in the 1960s and 70s discovered/invented many interferon inducers to try and treat the many viral infections that didnt have many treatments available at the time, from the cold virus to hep B/C to different herpes viruses and were shown to have some positive effects.

    I also believe that they were also used with and also after treatment with traditional interferon treatments as they found that with interferon treatments, that there was some negative feedback issues ie they werent producing their natural interferon as well as previously before the use of interferon drugs. Interferon inducers helped avoid this situation by stimulating the patients own interferon production.

    In regards to ebv infections, they have found that this virus can avoid the immune system by somehow turning down the bodies own interferon production, this reduces the actions of the immune system on fighting these types of infections.

    So those with the ability to think with a broad mind and not a narrow view, would notice that cfs experts especially in the research on nk function in cfs/me such as Dr Nancy Klimas and co recommend immunovir for its effects on nk cells and Dr Peterson also, as well as his experience with ampligen, but ampligen is restricted to many due to cost. Dr Chia has had success in using herbal immune modulators to treat chronic enteroviral infections, i assume due to their effects on interferon, as he uses this as an alternative to the drug interferon itself as it can be a hard drug to tolerate and is also expensive. So it appears Dr Chia has found a link between fighting infections in cfs/me and immune modulators that work on inducing interferon naturally.

    SO i guess the concept of immune modulators seems psychobabble amongst those that believe that infections have nothing to do with cfs/me, even though the concept of infections in cfs/me hasnt been unproven. Since the concept of ME has began, the weight of evidence leans heavily towards some type of infectious involvement, be it a trigger or a chronic infection/s, along with some type of immune dysregulation. To call it a coincidence, would be very naive. The psychobabblers seem to be the ones who deny evidence of research over the last 50 yrs or so even though this research has been heavily stifled by lack of funding. I am amazed at the lack of lateral thinking amongst some of the green practioners entering into this field with total ingorance of what has gone on before them in the cfs/me field, which shouldnt be ignored, but this is due to their narrow point of their own view with their blinkers on.

    Im also amazed that nurofen has been mentioned a few times as some type of treatment for ME(symptom management sure but its still not very effective for many of us), and that other treatments that many patients have used for treating infections is brushed aside as a fluke as cfs is an up and down illness, so one probably took the treatment when they were in the upswing of a good spell. Its never taken into account that the patient has tested these treatments out numerous times and can see the pattern of the treatment working and or that those treatments over the long term can improve outcomes even with the ups and downs, as the downs become less so and less frequent and the ups increase. Then some find they regress quickly once they stop a certain treatment. The above is repeated several times. That does not appear to be a fluke to me, its not a hardcore experiment but we have little going on in the big picture doing research for us, so we are forced to find things that work for us.;)
     
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  14. adreno

    adreno PR activist

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    Support your microbiome and you support your immune system.
     
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  15. dan062

    dan062 Senior Member

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    @Gingergrrl: As @Jonathan Edwards points out, it would seem important to know whether your problems are partially to do with your immune system being 'up' (overactive) or 'down' (underactive).

    I would tentatively suggest that anybody with autoantibodies (ANA, RF; this includes me) may have an overactive immune system, and you could possibly do yourself harm by stimulating it further.

    For instance, I've read cautions for people with lupus not to use echinacea for fear of making their disease worse and I can see how this could very easily apply in some of our cases.

    For this reason, I've been sticking with trying to tinker with the microbiome, as @adreno suggests and looking into natural antivirals but it's all guesswork and wild speculation at the moment, unfortunately.

    All the above being said, for the 'immune modulators' that are common, it's probably much the same list as was mentioned in the thread I started, with the addition of the so-called adaptogen herbs (things like ginseng) and echinacea.

    Of those that can be found the most easily, garlic always seems the most obvious choice, despite its noxious odour.
     
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  16. minkeygirl

    minkeygirl But I Look So Good.

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    In the mid 90's when I first got sick, I knew someone who was seeing. Dr. Sudhir Gupta, who is now head of the Immunology Dept at the University of California, Irvine.

    http://www.faculty.uci.edu//profile.cfm?faculty_id=2302

    Back then they didn't have much of a clue (that I remember) what was going on with CFS but his treatment for her was interferon injections. When she was unable to get them, she was seriously sick.

    And to add to what @heapsreal said about people not believing this is infection related, I recently had a huge relapse. I could not keep my eyes open, my throat felt like I swallowed glass, my neck was swollen. I was in a constant fog. I was functioning at maybe 1%.

    I upped my Famvir from 500 mgs/day to 750 mgs/day. Within 2 days my sore throat was gone. Two days later the sore throat was back so with my doctors blessing, I upped my dose to 1000 mgs/day. Within 2 days my sore throat was, gone, the swelling in my neck was gone, I could keep my eyes open. I stayed at that dose for a month then lowered it back down to 750 mgs. I am back to about 99% of where I had been before. And I got to where I had been with antivirals and immune modulators.

    I'd eat rat poo if it would help me. Nothing is to outrageous to try when you have nothing to lose.
     
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I totally understand that but that is different from giving the impression to other people that there is reliable evidence that it is the rat poo that did the trick.
     
  18. minkeygirl

    minkeygirl But I Look So Good.

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    I know for a fact it was the famvir that helped me. I did nothing for a month, then I raise my famvir and I'm better. That's not a coincidence.

    What you seem to fail to understand, is that many of us don't care about reliable evidence. Until you are so sick that you can't function, you will never understand that. If someone has tried something and it has benefited them, then we have nothing to lose to try it.

    If I sit around waiting for people to come up with something that helps, taking years to do testing and studies and trials, closing their minds to things just because they don't think it would work with no evidence to the contrary, and that includes you, I will be completely bed bound, wasting away until I die to weak to feed myself.

    I choose not to do that. So if I want to try rat poo, I will. And FYI, my doctor is on board with me trying anything so I'm not doing this in a vacuum. She supports everything I try because her ego is not threatened by something she doesn't understand. She sees how sick I am. She sees me laying in the dark barely able to speak. I am a real person, not some faceless entity on a forum that she advises with a narrow view of things. It isn't her way or no way.
     
  19. daisybell

    daisybell Senior Member

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    @minkeygirl
    But what if it had made you worse? I do get your stance, but have been reluctant to try anything that I don't know in case it might have an adverse effect....
    However, I have started on LDN, and wish I'd done it before. I've improved lots....
     
  20. halcyon

    halcyon Senior Member

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    I think her point is that when you're at rock bottom there is no such thing as worse.
     
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