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If CFS is an autoimmune disease, could boosting the immune system be harmful?

Discussion in 'General Treatment' started by Waverunner, Nov 1, 2011.

  1. Waverunner

    Waverunner Senior Member

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    After the Norway study, it turns out that CFS could be an autoimmune disease. Therefore I ask myself if treatments especially many supplements could do more harm than good because they strengthen the autoimmune response instead of treating the cause or weakening it. It's very early of course, to make clear statements but are there any ways to figure out which supplements and treatments should be avoided in case someone wants to take into account that CFS is an autoimmune disease?
  2. Esther12

    Esther12 Senior Member

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    I'm a bit wary of lots of supplement type stuff... if they do anything, we don't really understand what impact it will have, if not then they're a waste of money and effort.

    I go for a multivit (everyone takes them... it can't be bad!), fish oil (lots of people take them... probably not bad!) and vitamin D (I can't get out much, so it seems a sensible precaution). I'm far from confident any of them are worth taking though.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Is it autoimmune ie immune system attacking our own cells because these cells contain viruses and retroviruses which our immune system is trying to get rid of or is it attacking cells indiscriminately???
    Thats the million dollar question and also why antivirals just stop replication because if it killed the infected virus then it would kill our own cells that contain these viruses. Like how chemotherapy kills our cells infected with cancer and hopefully kills them before it kills the patient. rituximab is isolated to b-cells, not indiscrimate like other chemo, so more targeted i guess. This is just my guess from what i have read??

    cheers!!!
    Enid likes this.
  4. Tristen

    Tristen Senior Member

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    I learned long ago through trial and error that all immune stimulants and most immune modulators make me worse. Only immune suppressants have brought improvements, but that intervention has not been a wise choice for other reasons.

    Until recently, I've thought this was due to inflammation, rather than autoimmunity. I now believe it's both. So yes, I'm very cautious with anything that affects my immune system.
  5. fla

    fla Senior Member

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    Suspecting that I was in the auto-immune M.E. subset since day one, I've avoided any immune boosting supplements for the exact reason you mention. If I have a missile launcher with a faulty aiming mechanism I certainly don't want to give it bigger missiles.
  6. Waverunner

    Waverunner Senior Member

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    I agree with all the posts here. In the end one has to find out for himself if certain supplements do good or do harm. I really hope however that research speeds up and answers the questions.
  7. Sparrow

    Sparrow Senior Member

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    I think there's also a big difference between supplements that boost the immune response overall, and those that are more targeted to support only certain aspects (in particular natural killer cell function, and the other stuff that seems to be consistently messed up in ME/CFS patients).

    I take all supplements with caution and a close eye on the effects, because I think we're all so fragile that just about anything could be tough on us. I think I'm one of the people who seems to be helped by immune modulators that support Th1 function, though, so I'm still planning to go ahead and explore those further. I tend to feel like if it makes a person feel better, take it. If it feels worse, try to figure out why and consider whether it might be better to stop (obviously some things that are quite helpful in the long run can have rough patches or detox associated with them and are often worth persevering with). The new info will make me a little extra aware, but doesn't change my plans at all really. We already knew that parts of our immune system were overactive, right?

    That said, I would avoid indiscriminate immune boosters (I try to stay away from echinacea, etc.). But I was already leery of those in case they made the Th1/Th2 problems worse. Then again, I know that some people on here have taken them and liked the results. So who knows.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think there's also a big difference between supplements that boost the immune response overall, and those that are more targeted to support only certain aspects (in particular natural killer cell function, and the other stuff that seems to be consistently messed up in ME/CFS patients).

    Good point sparrow, as nk cells are known to fight/destroy cancer cells as well as viruses. Cycloferon is used for rhuemotoid arthritis which is an autoimmune disease and cyclo is known to activate t-cells and nk cells. If concerned about immune stimulants because of autoimmune problems then consult with a doctor is the smart way to do things.

    cheers!!!
    Enid likes this.
  9. mellster

    mellster Marco

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    The fact that there are or have been chronic reactivating viral infections in most patients shows that it is more likely an immune imbalance with deficiencies and overdrive within the different subsystems. And IMO the overdrive in one system results from the deficiency in another, so I tend to lean towards immune modulators - but consulting with a doc if concerned is always a good choice.
  10. alex3619

    alex3619 Senior Member

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    Hi, there are many aspects of the immune system. Supplements and drugs tend to boost one aspect - supplements that target some other part of the immune system may be good. I agree with the advice that the only way to be sure is to test it - nearly everything that has an effect works on some and makes others worse. I am particularly interested in supplements that reduce inflammatory pathways, but they can also have an immune boosting effect. Bye, Alex
  11. sickness

    sickness

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    I always wondered why I got worse when I stopped smoking and drinking. It could have been that these things were depressing my immune system somewhat, and that stopped when they did.

    Just my two cents worth.

    take care, ness
  12. sensing progress

    sensing progress Senior Member

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    that is a really interesting observation/hypothesis! I wonder if any others have noticed that pattern as well.
  13. Tristen

    Tristen Senior Member

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    Not only are individual reactions/responses inconsistent, but I believe the Immune imbalance shifts over time as well; I had marked Th2 up-regulation in the beginning, but don't believe that has remained constant. There has been a progression of changes over the years. Maybe that's due to treating infections.

    I agree with you on reducing the inflammation because this is where I get the most relief. But I'm not so sure about the immune boosting part. My immune system isn't lacking kill power, it's lacking direction. Boosting confusion is only going to intensify the confusion. Need to get to the source of the dysfunction, remove it, and then support the immune system to reset.
  14. kaffiend

    kaffiend Senior Member

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    There are proposed mechanisms for this actually. During infection, it can be the immune response that kills and not the underlying pathogen. With this in mind, some researchers are looking at using nicotine to calm the infection-based "cytokine storm" by modulating what's known as the cholinergic inflammatory pathway.

    Also, ethanol (alcohol) is a potent inhibitor of inducible nitric oxide synthase (iNOS), which is a product of brain (microglial) inflammation. Ethanol and its metabolites have so many widespread effects that it's probably too blunt of an instrument to be used as an immuno-suppressant.
  15. kaffiend

    kaffiend Senior Member

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    I recently had a low-positive ANA result but I haven't felt like chasing that one down, medically. I feel that auto-immunity simply shifts the blame to something else we don't try to understand. I'm finding it to be a self-defeating term, much in the way fatigue is. My goal is plain and simple: To return to 100% of my previous levels of functioning and activity; anything else is a distraction.

    It's a challenge to any "pure" auto-immune perspective that B cells and T cells are latently infected with EBV and HHV-6, respectively.
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I haven't read all the comments. But perhaps immune boosting is not what you want but immune modulating is what you want? I believe Vitamin D is an immune modulator and low dose naltrexone (LDN), I have been on both for the last 2 years and am doing better than ever!

    GG

    PS Have also made other changes and lifestyle/coping changes to reduce my stress and do less so therefore less likely to crash.
  17. mellster

    mellster Marco

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    I have been having similar experiences with LDN and Vit D (and more) than ggingues. I agree that pure immune boosting could be risky but the modulation from LDN is slight and specific (as the low dosage is close to homeopathic levels). Yet I do believe in trying and getting by and better with only as much as needed and scale down the dosage when possible.
  18. endomeister

    endomeister

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    You are right to be cautious about supplements. I discovered through research and personal experience that some foods and supplements are helpful in reducing inflammation and others may incite it.

    I have Behcet's Disease which at least in my case is triggered by HSV1. The virus stimulates an overproduction of TNF-alpha which results in significant inflammation. This autoinflammatory response also lowers glutathione and becomes a 'catch 22' in some patients.

    This is common with other viral illnesses and CFS sufferers.

    For those who are interested, I have a chart with some guidelines / supplements that can reduce (and those that can worsen) these inflammatory problems:

    http://is.gd/B4oJMb

    I hope this is helpful to others with TNF-alpha illnesses (including many CFS sufferers).
    merylg likes this.
  19. Freddd

    Freddd Senior Member

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    Hi Waverunner,

    As far as I can tell CSF/FMS is casued by a combiination of deficiencies in our brains and bodies. Low methylfolate and low mb12 both cause hyper sensitive hyper reactive immune system and the deficiencies are tied to a number of autoimmune diseases. In addition the active b12 protocol can cure the cfs/fms/me in any case.

    http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics
  20. taniaaust1

    taniaaust1 Senior Member

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    Ive noticed that anti-inflammatories seem to help me a little bit. I noticed some improvement when I started taking a sleep aid which is also an anti-inflammatory (Doxylamine Succinate) which is available without a prescription if anyone wants to try it. The boost it gave me, stayed with me at least a couple of weeks after stopping taking it and is still currently with me. (note.. its only to be taken short term eg 2 weeks).

    I personally think that great caution needs to be taken if someone is trying to boost the immune system without knowing exactly what one is trying to fix there and having blood tests done to know.

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