Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME/CFS stopped with outbreak of autoimmune disease

Discussion in 'General ME/CFS Discussion' started by MartinDH, Oct 27, 2017.

  1. MartinDH

    MartinDH

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    Hi!

    I have been a mild case for many years. Then, two years ago, my psoriasis broke out (for the first time). Right after the beginning of the psoriasis my CFS/ME symptoms stopped. They came back a few months ago (while my psoriasis has gone). Now I'm moderate.

    Does anyone have any idea why? I wonder if this is a sign for the condition being linked to the immune system. Kind of a proof? :)

    Thank you all!
     
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  2. Marco

    Marco Grrrrrrr!

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    Strange, intriguing. A little like how some of us feel better on the rare occasions we develop a real cold.

    Perhaps it has something to do with the immune system having something specific to deal with which diverts it from whatever it was (mis)doing previously?
     
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  3. MartinDH

    MartinDH

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    Interesting indeed. And as you mention it: I am having a real cold right now and ME is noticeable better (could work three hours today with having some breaks).

    What I am curious about is if my ME-symptoms will improve or even be gone when psoriasis is getting back (if at all). Because - from my understanding - that would mean that ME is ONLY linked to the immune system. Because: where is the difference between ME-symptoms and those from a really life-threatening infection?! At any rate: My ME feels like having a brutal flu.
     
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  4. Wishful

    Wishful Senior Member

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    I think it's likely that there's a connection. Maybe the t-cells are so busy working on the psoriasis that they divert resources from producing whatever causes ME/CFS.

    That's the kind of special case that might provide useful insights into this disorder. Researchers could probably learn more from studying a case like than than from studying hundreds of typical cases. If only we could figure out how to get such special cases into a lab...preferably before the special event occurs, to compare before, during, and after. :)
     
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  5. ljimbo423

    ljimbo423 Senior Member

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    Hi @MartinDH - I did a little research on how psoriasis effects the immune system. There are basically 2 arms of the immune system. The TH1 arm (innate immunity) and the TH2 arm (adaptive immunity). It seems like psoriasis up-regulates the TH1 arm or the innate immunity. Here is a quote from a study-

    https://www.ncbi.nlm.nih.gov/pubmed/21865674

    As I understand it, when the innate immunity (TH1) is up-regulated, the adaptive immunity (TH2) is down-regulated and vise versa. So it works like a teeter-totter, if one arm is up, the other is usually down.

    If your symptoms are being caused by an up-regulated TH2 immunity, then it could be that a reactivation of your psoriasis up-regulated your TH1. Which brought down your TH2 immunity and brought your immune system back into balance- (teeter totter). Therefore relieving your symptoms.

    I have an up-regulated TH2 which I believe is causing my symptoms but have yet to find anything to down-regulate it or up-regulate my TH1 without substantial side effects. How can I get psoriasis?:D;)


    Jim





















     
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  6. MartinDH

    MartinDH

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    Jim,

    oh god, why did I become a lawyer and not a doctor. But if you want to get psoriasis, then I highly recommend getting a streptococcal infection as it is the major trigger for this disease... best way to find out if you one of the lucky ones.

    But I think there really is a direct link. Does anyone know if there are studies about the coincidence of ME and autoimmune diseases in patients?

    And I think what is really important about my experience is: The whole ME-symptoms disappeared, not only the flu-like feeling.
     
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  7. ljimbo423

    ljimbo423 Senior Member

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    I believe what you are saying and from my perspective it makes a lot of sense. I think the root cause of most cases CFS is from lipopolysaccharides (LPS), from the digestive tract leaking into the bloodstream.

    Once in the bloodstream LPS cause an immune system reaction, hence the flu-like symptoms of CFS. There's a lot more to it than that but I believe that is the root problem.

    I am having very good success with a low carb diet and some herbs to lower the overgrowth of bacteria in my gut. These LPS from bacteria leaking into the bloodstream from the GI tract happens to everyone, usually in very small amounts, which the immune system can easily take care of, without symptoms.

    However, if you have an overgrowth of pathogenic bacteria in the GI tract, a weakened immune system or the integrity of your GI tract lining is compromised or damaged. Then excessive amounts of LPS can enter the bloodstream, causing flu-like symptoms, etc.

    There is a guy named Ken Lassesen that has blogged about this extensively. He developed CFS 3 times and all three times he recovered by treating an overgrowth of bacteria in his gut. He is completely symptom free now and has been for at least a few years or so.

    As long as he stays on a fairly low carb diet and takes some supplements, he remains symptom free! Here is a link to his blog if you are interested. https://cfsremission.com/
    Jim
     
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  8. HowToEscape?

    HowToEscape? Senior Member

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    Sounds like you should get in touch with some researchers looking into this disease. Your case might demonstrate one of the theories happening in fact.
     
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  9. MartinDH

    MartinDH

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    And who do you think might be interested? And how to get in touch with him/her? I am new to PR and not that connected to Nobel laureates ;-)
     
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  10. lansbergen

    lansbergen Senior Member

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  11. HowToEscape?

    HowToEscape? Senior Member

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    Ahh. With my brain fog I don’t keep track of these things very well. There are a handful of people researching, mostly scientistists who have some personal connection to the illness.

    Perhaps if you post in the subforum News&Research / General CFS News you will get an answer from someone who can keep these names straight.
     
  12. Mithriel

    Mithriel Senior Member

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    I have ME as they had in the epidemics, infection with Coxsackie B virus and never recovered though I deteriorated over the years until I am housebound and almost bedbound. I know the exact date I became ill.

    All my symptoms are related to how much energy I use so the CPET testing work has finally explained what has been happening to me.

    We are all different in how things affect us, but I have developed autoimmune diseases over the years and they ALL get worse when my ME is worse. My psoriasis flares up when my ME gets worse.

    I can't remember who, but recently they spoke about 2 groups of ME sufferers they have found; one where the immune system is down regulated after about 3 years and one where it stays overactive. They mentioned psoriasis and MS which affected my eyes in particular about twenty five years ago.

    More research is definitely needed.
     
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  13. Learner1

    Learner1 Professional Patient

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    My ME/CFS doctor calls it a dysfunctional immune system, e.g. one that is both under AND overactive at the same time. He said that if one has one autoimmune disease that one is more prone to picking up more.

    I spoke with Jarred Younger at the OMF Symposium. He's identified 2 subsets of patients, those with infections and those with autoimmunity. Having both myself, I asked him if there was possibly a third subset of patients with infections (and an underactive immune system) and with autoimmunity, too.

    He said absolutely, yes, this subset definitely exists.

    We all are unique in our environmental exposures and genetics, so its likely that all of the above scenarios are valid, which complicates the research.
     
    Last edited: Oct 28, 2017
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  14. MartinDH

    MartinDH

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    @Mithriel Okay. So the question ist whether it is the immune system causing ME or the over- or underactivity of the immune system is only a consequence of ME. Personally, because of the two (or perhaps: three) groups of ME-sufferers, it might be the latter. Or if ME is an autoimmune disease itself (but if that is the case, shouldn't there be any inflammation?)

    @Learner1 Okay, for me it seems to be the total difference. Quite interesting.
    Auto immunity and an underactive immune system is quite common. I know that from other psoriasis sufferers. But what I find interesting is whether the auto immunity group would have better response to rituximab than the other group. Is there any discussion about that? And: I have read from some doctors that they find there is always a chronic infection going on in ME patients. I'm new to this, so personally I have no idea... They didn't find any viruses nor bacterial infection in the hospital... But I'm not sure what they tested.

    EDIT: Sorry, just linked the wrong persons ;-) The text for Learner1 is for Mithriel and the text for Mitrhiel is for Learner1
     
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  15. MartinDH

    MartinDH

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    Hmmm, I don't want to spam the subforum...
     
  16. Learner1

    Learner1 Professional Patient

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    First, I suspect many of us harbor infections of some sort, whether or not our doctors have found them. Many doctors don't bother to look, and others are mistaken in their interpretation of the labs and tell patients they don't have an infection when its there.

    And most of these infections are no longer acute, but rather the chronic, smoldering kind that destroy our health by hijacking resources, damaging tissues, mingling with our DNA and RNA, and in many cases, triggering autoimmune antibodies.

    Mark Davis, at the OMF Symposium, gave s brief layperson's overview of the antibody toolkit we're born with, so that we can create antibodies from building blocks to anything we encounter. Sometimes, the body inappropriately makes antibodies to thins it shouldn't, as in Hashimotos, lupus, etc.

    And some of us are more genetically prone to making antibodies. In going through my health history, my ME/CFS specialist noted I had Hashimotos, celiac, and multiple food allergies and immediately created an action item to see if I had antibodies that have been noted in ME/CFS patients, which I did.

    Depending on the status of these infections and autoimmune antibodies, our level of inflammation may vary, from very little to quite a lot and it may vary through our the body, with more in the brain, more in the gut, or less in other places, for example.

    Therefore, there's no one-size-fits-all solution, its a matter of treating us as individuals.

    As for Rituximab, I'm still learning, but it seems that one needs to clear any infections as much as possible first, then use Rituximab to wipe out the B cells with the troublesome antibodies. That's why a few doctors are starting people with IVIG and antivirals/antibiotics/LDN, then moving to Rituximab.

    None of this is commonplace, its very experimental, and there are significant side effects and risks involved.

    It is worth getting the best diagnosis you can and thoroughly researching all possible treatment modalities as there are situations where the risks can be fatal or at least very damaging. (My current opinion...)

    That's why looking at 10-pass ozone might be a possibility. And then there are various stem cell transplants, which are quite controversial. And a long list of other treatments that may work for some if us, yet not for others.
     
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  17. MartinDH

    MartinDH

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    Thank you @Learner1 for this long answer!
    But I'm not convinced that there is inflammation, or let's say: more than a normal body produces every day, a pathologic inflammation. Because in all autoimmune diseases, chronic inflammation leads to irreversible damage. You can see that with MS (people can't walk again), Rheumatic Arthritis (joints won't work again), Psoriasis (skin loses it's pigments and will stay white where chronic inflammation was) and so on... But in the cases of full remission in ME: People are fully recovered and don't have any limitations.
     
  18. lansbergen

    lansbergen Senior Member

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    I have been saying al along and am still convinced there is inflamation. Just not the kind doctors know.

    Why would damage not be repaired when the disease proces is stopped? Nature has a nice system for it.
     
  19. lansbergen

    lansbergen Senior Member

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    These diseases have no cure only bandages for bleeding.
     
  20. pattismith

    pattismith Senior Member

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