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If CFS may have autoimmune aspects to it, is it dangerous for us to take immune modulators?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Frustrated, Apr 24, 2017.

  1. Frustrated

    Frustrated

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    I've been treating mine as chronic viral infection as it started with a bad long lasting virus that I never recovered from, so have been taking th2 to th1 modulating herbs. But I've been thinking, if this disease is autoimmune like how I've heard some people say, then are asking for trouble if we take things that ramp up our immune response?
     
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I don't think there is such a thing as ramping up the immune response really, or shifting from Th2 to Th1 for that matter. Popular immunology is full of bogus concepts like these. I would not interfere with the immune system except in very specific ways for very specific reasons. If an app on your computer is dodgy you are not going to achieve much by ramping up (or down) the light level on the screen - that is pretty much what we are talking about. You need to delete the app and download a better one.
     
  3. Mij

    Mij Senior Member

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    I was doing ok until I started taking immune modulators which caused me a complete relapse, I never went back to baseline after that and I believe it changed the path of my illness. I also developed OI after that.

    During the onset of relapse, latent viruses re-activated (HHV6 and EBV).

    Unless you understand what is going on with your immune system you should practice caution.
     
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  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Great analogy. Almost every patient I discuss treatment with thinks that the problem is a "overactive" or "underactive" immune system, and have often been told this by doctors too. This probably heightens the chance that people will be willing to try a lot of undocumented treatment as well, as so much claims to either "strengthen" or "calm down" the immune system.

    What kind of computer process is ME/CFS? Maybe a trojan horse, hijacking our apps and changing their function? Stealthily, without intent, leaving abnormalities thats not traceable to its creator..
     
    Last edited: Apr 24, 2017
  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, I wrote a chapter in a book called Molecular Autoimmunity about autoimmune diseases being due to Trojan Horses - an excellent analogy!
     
  6. Hugo

    Hugo Senior Member

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    What kind of immune modulators did you use?
     
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  7. carol53

    carol53

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    I have been on immune modulator drug Ampligen since 2010 and it has been life changing. Much better function and quality of life. Too bad it is not FDA approved so that others could benefit. It is not for everyone, but for those who respond, it is amazing.
    The open label clinical trial is under cost recovery so those in this trial must have lots of $ to receive the drug. Talk to the FDA.
     
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  8. Mij

    Mij Senior Member

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    Imunovir
     
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  9. Mary

    Mary Senior Member

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    There's a difference between immune modulators and immune stimulators. The theory is that modulators do just that - modulate the immune system - e.g., if it's overactive, then immune modulators will tamp it down and vice versa, whereas an immune stimulator (e.g., Echinacea) will only stimulate the immune system. To my mind, this would indicate a possible role for immune modulators in autoimmune illnesses. The first study I link below talks about andrographis, described as an immune modulator, helping alleviate symptoms of rheumatoid arthritis, an autoimmune illness.

    I'm not going to get into the discussion about whether there even is such a thing as ramping up or tamping down the immune system. I don't know enough. But - I have had good results with andrographis, which is described as an immune modulator. I had been chronically sick for years with a sinus infection of some sort - it would flare up every time I crashed, and I was crashing generally once a week (from doing too much, e.g., doing the dishes and laundry on the same day, or grocery shopping,. not really things I can stop doing). Anyways, the end result was I was sick 90% of the time, and only very slowly would recover, only to crash again.

    I started taking andrographis after my sister (who does not have ME/CFS) recovered from a very nasty sinus infection. She'd already been on 2 courses of ABX and then a week or 2 later relapsed quite badly. She had literally been sick for weeks, and after starting the andrograpis complex, was amazingly better in 2 days.

    So I gave it a try, starting a few months ago and within days was feeling better, and only once have gotten as sick as I was before (after a major crash), but even then I recovered from that much quicker then before.

    Another effect I attribute to andrographis is that my thyroid seems to be working better. I noticed an increase in energy after starting the andrographis, and my eyelids got less puffy (are hardly puffy at all any more) and puffy eyes can be one symptom of hypothyroidism. Anyways, I've been able to cut my thyroid med by 25%.

    Here are a couple of articles on andrographis and plant-based immune modulators in general. @Jonathan Edwards, I'd be interested to know what you think about the study showing that andrographis may be helpful with rheumatoid arthritis (the first one linked below) - I know the research is scanty, but that's part for the course with herbs.

    https://www.ncbi.nlm.nih.gov/pubmed/19408036

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4548092/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3619690/
     
    Last edited: Apr 24, 2017
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  10. carol53

    carol53

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    Hemispherx restricts us since it is still a stage 3 clinical trial but thanks for the suggestion. I have used several antiviral like Valcyte,Valtrex and the dreaded Vistide. Using a combo of Ampligen and Vistide in 2015 brought me close to normal function. Unfortunately, no treatment protocol seems to work forever. I have also used ivig/gamma globulin as quick fix.
     
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  11. carol53

    carol53

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    I am not one of the "one day I got sick and never recovered" people. My initial diagnosis was autoimmune vasculitus.I had positive ANA. I was able to work for 4 years until everything I tried stopped working.
    I will check into the herbs, thanks for the links. Something natural is preferable to pharmaceuticals if it really helps.
     
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  12. Rossy191276

    Rossy191276

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    Jonathan would you consider LDI for Lyme a specific way for specific reason and do you think the theory behind this treatment has the potential to be effective?
     
  13. Frustrated

    Frustrated

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    Then how would you explain things that have actually been shown to increase Th1 levels and induce interferon, increase NK etc.?
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    There is no scientific meaning to the term immunomodulator, other than just a general term for something that alters immune activity - like rituximab for instance. The use of the term in complementary medicine has no scientific basis. There is nothing that makes things go up when down and down when up!!

    The study on rheumatoid arthritis basically says it did not work. It is dressed up in wording that makes it look as if it might have worked a bit but you only dress things up like that if it did not work - otherwise you provide the results that show it works. Being a herb has nothing to do with it because this is a proper randomised double blind controlled trial - just like for any other drug. The problem is not the methodology. They did a good trial, but the trial showed it did not work.
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Such as ?

    Sure you can induce interferon production but that is not an immune shift between TH1 and TH2, it is just increasing interferon levels. What is a 'Th1 level'? I have never heard of such a measure. NK cells are neither Th1 nor Th2, they are NK.
     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    From what I remember of looking into LDI the theory behind it is nonsense. If I remember rightly it is supposed to be some form of desensitisation. I cannot see how that would help with a bacterial infection. There is a huge amount of scam 'immunology' out there as far as I can see and this is almost certainly one.
     
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  17. eljefe19

    eljefe19

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    @Jonathan Edwards Prof Edwards, we've been trying to get your opinion on this paper I found on B cells and amongst other things, the drug rapamycin.

    I found the following quote after skimming this lengthy paper;

    With the consent of my doctor we are going to try it, measuring immune markers along the way. I have several abnormally high autoantibodies against adrenergic and muscarinic receptors, and hopefully Rapamycin might be a MUCH cheaper way of achieving similar means as Rituxan. Any thoughts?
     
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    If rapamycin blocks B cell receptor driven B cell proliferation it is a potential approach for autoimmune disease. I do not know if it would be cheaper than rituximab. I presume you would have to give it continuously more or less long term.

    At the moment it is unclear whether antibodies to adrenergic receptors and muscarinic receptors mean much. Antibodies to muscarinic receptors have become notorious for being non-specific. However, it is possible that in some cases they are important.

    The concern about inhibitors of B cell receptor driven signalling is that if it is modest then the bad cells may not be affected but useful cells may al die off, with the result that the bad cells get a clear run. However, one gets nowhere by being put off by all reservations. I would much prefer to see any use of rapamycin in ME/CFS in a formal trial setting so that others can benefit from the results but I realise that you and your doctor are entitled to make your own decisions.
     
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  19. Mary

    Mary Senior Member

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    First, thank you for your response. I appreciate very much how generous you are with your time and knowledge to the ME/CFS community.

    I'm not a scientist or statistician (obviously I'm sure! :whistle:) - anyways, could you make sense of this for me then:

    I'm not asking you to interpret each item, but if you could do just one, that would be great. I don't understand the numbers but the authors seem to be saying that there was a positive response on number of swollen joints, grade of swollen joint, etc. Are you saying that the numbers don't show that, or that the improvement (if any) is too small to be significant?

    Also, what do you make of the statement that "it was associated to a reduction of rheumatoid factor IgA, and C4."

    Thanks for your help!
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    What they found is that for lots of measures the results after the treatment were significantly better than before. But they have already told us that there was no statistically significant difference between treatment and control for the primary chosen outcome measure. Moreover, they deliberately tell us nothing about how much all these measures improved in the control group. If there had been a statistically significant difference in improvement in measures between treatment and control groups they would have given us that analysis, and it would have been of considerable interest, but they choose not to give us that. So what they are observing is the well known phenomenon of 'regression to the mean' or, less technically, that people entered into trials tend to show improvement whether you treat them or not because they tend to get entered when they are at their worst, for obvious reasons. Without a comparison to controls these figures tell us nothing and if deliberately presented without comparison to controls you can be pretty sure there was a reason - no difference.

    I good journal referee twenty years ago would not have accepted an abstract written like this. They would see that useless information is being presented as if it meant something. Unfortunately, nobody cares any more and so readers not familiar with the complexities of data presentation are fooled into thinking something was found.

    The bit about rheumatoid factor and IgA is subject to the same argument. This is not a placebo response, it is an artefact of fluctuating disease and trial recruitment.
     
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