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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"Exercise Tests Suggest Autoimmunity..." Cort Johnson

Discussion in 'Latest ME/CFS Research' started by Diwi9, Aug 16, 2017.

  1. Diwi9

    Diwi9 Senior Member

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  2. Mary

    Mary Senior Member

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  3. Hip

    Hip Senior Member

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    David Systrom's research interested might throw some light on your lung condition, @Gingergrrl. Autoantibodies causing constriction in blood vessels.

    Cort's article says:
     
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  4. Diwi9

    Diwi9 Senior Member

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    I'm with you, waiting for the less brain fogged brainiacs to digest this and tie it all together.

    @Cort - Thank you for all of your hard work and outreach!
     
  5. NelliePledge

    NelliePledge plodder

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    sounds really positive I wonder if the drug he's using Mestinon has been tested at Stanford
     
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  6. Diwi9

    Diwi9 Senior Member

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    Wikipedia states that it has been implicated in Gulf War Illness. Wikipedia
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for tagging me @Hip and I just read the study. I am fairly certain at this point (along with my doctors) that a major part of the breathing issue for me was autoantibodies affecting my diaphragm/muscle strength and also autonomic in which I did not get adequate blood perfusion to my lungs and heart when I stand/walk.

    Would these two things match with the findings of the study or be a different issue? There does not appear to be any issue with my actual lung tissue based on yearly high resolution lung cat scans (which I do b/c the calcium autoantibody that I have links w/small cell lung cancer which so far, I do not have). The study said that Dr. Systrom tests patients for the paraneoplastic autoantibodies which I think is phenomenal and I wish everyone could get tested on these like I did as these were the turning point (for me) that led to pursuing IVIG and Rituximab.

    My breathing is significantly better and I can walk in my apt without wheelchair multiple times throughout the day. I will update my Rituximab thread re: that issue to not take this off track. My ability to stand/walk is not even close what it was pre illness but it already exceeds anything that I thought I would ever achieve. I have no doubt that autoantibodies damaged autonomic nerves like the study quotes so I guess it does match? I find most studies very hard to determine if they are causal for me.

    This is the part that does not seem to match my case b/c Midodrine and vasoconstrictors help me and I do horribly with vasodilators or anything that drops my already low BP. My docs think that Midodrine allows more blood to go to my lungs/heart when I stand due to "preferential perfusion" vs. staying lower down in my feet.

    Also, the article mentioned that Mestinon was helpful for the patients but I had a horrible reaction to 1/8 of a Mestinon in which I almost went to the ER for respiratory depression in 2014 and will never take it again. But others do great with it like I do with Midodrine. I wish I knew why!
     
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  8. echobravo

    echobravo Keep searching, the answer is out there

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    Finally, some hope!

    After deabilitating fatigue struck in 2012, the worsening of my condition these last two years or so has mostly been related to the autonomic nervous system, i.e. POTS, O.I., Dysautonomia.

    Could a rampant onset of autoimmune reactions in the body targetting the ANS, be due to a chsin if events like; taking antibiotics, causing dysbiosis and yeast, leading to a leaky gut, with LPS and other foreign substances entering blood/lymph system, finally causing autoimmune reactions. At least for each round of antibiotics (2000, 2007, 2012) my health got worse, espec. wrt fatigue. Or is it more likely that a virus is the trigger?

    @Hip and others..would the ANS be permanently damaged? Or are there ways to improve it.."repair" it?

    Are there any measures I could take on my own to reduce these ongoing autoimmune processes? Even if I live in Norway, I have no hope of getting access to Rituximab treatment any time soon..

    > autoantibodies to acetylcholine

    Where can one get this tested?

    Thanks @Cort for making this available.
     
    Last edited: Aug 16, 2017
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Cell Trend lab in Germany and you can send the blood from anywhere in the world although easier from Europe than the U.S. Some will say it is not a valid test but I believe it is as does my doctor.
     
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  10. echobravo

    echobravo Keep searching, the answer is out there

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    @Gingergrrl Good to know. The germans probably do good lab work.

    BTW, you have had good results on IVIG, right? How do you see its positive effects in the light of Systrom's findings?

    Sorry, haven't researched IVIG yet, but recent tests showed that I had low IgA and IgM in addition to low levels of B lymphocytes.. Would these findings in any way make me a candidate for an IVIG treatment? Anything else I should test?
     
    Last edited: Aug 16, 2017
  11. Gingergrrl

    Gingergrrl Senior Member

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    I have had amazing results from IVIG but I lack the science background to even dream of explaining how it relates to Systrom's findings. My only thought is that his findings point toward autoimmunity, I have a million autoantibodies, and the autoimmune dosing of IVIG was the first treatment in 4+ years to start to give me my life back.

    I have now done two doses of Rituximab (it's been exactly two weeks since the second dose) and I continue to have more improvements. But I also continue to do IVIG so it is virtually impossible for me to say (with the latest improvements) what is from IVIG vs. Ritux?

    I was not low on any of those and my guess is if you are low, then you might be more of a candidate for low dose IVIG for immune deficiency vs. high dose for autoimmunity (what I am doing). Your doctor would need to run tests to sort it all out. I started low dose b/c we did not know if I would be allergic, or how I would handle it, and slowly increased over 4-5 months to the high dose.
     
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  12. echobravo

    echobravo Keep searching, the answer is out there

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    @Gingergrrl so uplifting to read about the improvements you have had already:)

    Is using high dose IVIG against autoimmunity in general inspired by the RA protocol (Jonathan Edwards)?

    I have had probably had several autoimmune attacks over the last 20 years; low B12 (parietal cells?), low thyroid (Hashimotos?), intense upper back pain (Becterev?), Lupus antibodies found. Who knows what else ..causing symptoms of POTS, O.I., dysautonomia, brain fog, cognitive decline, memory problems, coordination problems and so on. It feels like I am "under attack" in so many parts of the body - maybe it is a "perfect storm" of autoimmune reactions? Will definitely look into high dose IVIG treatment. Thanks!

    > Your doctor would need to run tests to sort it all out.

    Doctor's here know little and can't do much. The (very frustrating) Norwegian health care system "locks" you to use only one "assigned doctor" and if you want to see a specialist you have to be referred by "your doctor".

    Which test would you recommend that I ask for? Cell trends?
     
    Last edited: Aug 16, 2017
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  13. Hip

    Hip Senior Member

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    I think it would be a different issue, but I have not read anything more than just Cort's article.



    Not to my knowledge; once the autoantibodies that are blocking the transmission of nerve signals are gone, normal functioning would likely resume.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much.

    To the best of my knowledge, using high dose IVIG for autoimmunity is a standard protocol and has no connection to the RA autoimmune protocol that Dr. Edwards created with Rituximab.

    I have very low B-12 but just tested negative for Pernicious Anemia which included parietal cell antibodies so it's low for another reason. I've had Hashimoto's since 2013. I do not have back pain and am not sure what Becterev means? I am negative on Lupus autoantibodies but if you test positive for them, would they not treat you for that in Norway (since Lupus is usually recognized by all mainstream doctors)?!!!

    That is a good description and I felt like my body was "under attack" prior to starting these treatments.

    Is it an option for you to have treatment at Kolibri? I do not know about the referral process, and had been chatting via PM with two patients who were going to Kolibri from other countries, but once they left, I have not heard from them again and hoping they are okay.

    You do not need a doctor to order the Cell Trend tests. In the U.S., at least in my state, I did need a doctor to write a note authorizing the blood draw but once I had that, I took the note and the lab req from Cell Trend to a specialty lab and did the tests privately and sent to Germany with Fedex Overnight International.

    I truly believe that this is what is happening in my case and b/c the autoantibodies are no longer blocking my autonomic system, muscle strength, and breathing, I am becoming closer to who I was pre-illness. @Hip, in your opinion from all your research, do you believe this will maintain itself after I stop IVIG and Ritux? I know you cannot predict the future, but am curious to hear your thoughts (and you can be honest, it will not upset me). I have not had an allergic reaction to a food or smell in over one year so it seems like this part of my illness is gone forever vs. the rest of my improvements are much newer and may truly be temporary. I have no idea.
     
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  15. echobravo

    echobravo Keep searching, the answer is out there

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    That is very encouraging!

    So even if autoimmunity is attack on "self" (your own tissue), it doesn't necessarily mean that autoimmunity affecting the ANS will actually destroy tissue, but rather block the signalling?
     
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  16. echobravo

    echobravo Keep searching, the answer is out there

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    Ok, sorry for mixing that up.

    Looks similar..

    Have you tested for H.Pylori? Might affect B12 uptake. Turned out I had the bug.

    Did you take antibiotics in the past? Any gut issues; low motility, dysbiosis, yeast, sibo, food intolerances, leaky gut? CSA stool test found overgrowth of resistant Klebsiella pn. and Strep species. Was craving sugar. Couldnt eat grains. Became histamine intolerant (MCAS?).

    Bechterew is the same as ankylosing spyndolitis, I think. Can be caused by Klebsiella pn.

    Actually, I was referred to a specialist, but upon re-testing she found the antibodies to be too low for a Lupus diagnosis.


    I have talked to them, but I cannot afford it, since I am unable to work and have spent all my saved money to try to get well. The Norwegisn state surely won't cover treatment at Kolibri and it is still not common here to have additional health insurance.

    I would be interested to know if you hear from the two patients who went to Kolibri.

    So, the Cell Trend is the most important one should test for? Other things you would recommend to test for to verify (prove) that I would benefit from IVIG and/or Rituximab treatment?
     
    Last edited: Aug 16, 2017
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I tested for H Pylori in 2014 and was negative but never did it again.

    Yes, I took them constantly as a child and teen for tonsillitis and then had horrible reaction to Levaquin at age 39 which started my entire illness. Have not taken an antibiotic in six years.

    Yes, I developed acute MCAS in early 2015 and for several weeks became allergic to all food but water until I was hospitalized. I suffered w/MCAS reactions for about 1.5 years until I went into remission w/IVIG.

    That's too bad and rheumy's are so quick to dismiss autoantibodies that are "too low".

    I sssume they had computer access at home but once they got to Norway and started treatment they had no internet.

    I definitely would not say it's the most important thing to test for and it will not be relevant to everyone and some people have tested negative on all nine antibodies. I don't think anything could "prove" you would benefit from IVIG or RITUX and there is still a lot of guess work and trial & error.

    But my understanding is that if you have lots of autoantibodies AND are a responder to high dose IVIG than there is a good chance that you might be a responder to Ritux.
     
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  18. Murph

    Murph :)

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    Vascular theories of ME/CFS are good because they can unify the many and diverse body-wide problems we have: blood goes everywhere, from the brain, to the muscles, to the gut! (The individual differences being caused by genetic and epigenetic factors, of course.) They explain POTS well too.

    For me a key aspect of vascular theories is shear stress.

    Blood vessels should open up in response to high blood flow and contract when blood flow is weaker. The signal is 'shear stress'. When blood pressure is high the vascular walls feel high shear stress and so they dilate.

    @Cort writes :

    The authors proposed that the receptors on the endothelial cells that cause FM patients’ blood vessels to dilate have been so overstimulated over time that they’re not responding to signals to dilate anymore. That leaves them constricted and results in reduced blood flow.

    Endothelial cells are immune modulating cells. If they experience ongoing and unremitting shear stress they might well assume something is wrong and call in an immune response. This would explain PEM beautifully: When we move we get increased blood flow, increased shear stress and an increased systemic immune reaction that gives us flu-like symptoms.

    (Interestingly one signalling molecule emitted by endothelial cells under shear stress is none other than TGF-beta: https://www.ncbi.nlm.nih.gov/pubmed/9481408)

    This theory proposes a two-phase immunity problem to explain the two phase nature of ME/CFS. Phase 1 is an autoimmune problem that screws up your endothelial function (and maybe other things) giving you the chronic background condition. Phase 2 is how your screwed up endothelium reacts when you try to exert yourself: it experiences shear stress and causes an acute immune reaction. (nb, by the thousandth onset of PEM, this might not look like a normal person's acute immune reaction)

    I also like endothelial theories because they let me explain a weird feature of my own personal experience: Both booze and sports give me post-exertional malaise. The link between alcohol and exercise was for many years completely opaque to me. But an obvious link is their effect on the vascular system - they are both vasodilators, i.e. they open up blood vessels.

    Endothelial theories fit well with the work of Australian Professor Chris O'Callaghan whose thoughts on the subject have been useful to me, particularly his suggestion to drink a lot of water and eat a lot of salt.:
     
    Last edited: Aug 17, 2017
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  19. AndyPR

    AndyPR Cookies for Tired Sam

    Cort says
    I believe I'm right in saying that Ron hasn't said this, he's said that it could be but that it also could be other things, nothing has been proven yet?
     
  20. Sasha

    Sasha Fine, thank you

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    @Jonathan Edwards - This may be a daft question but if ME and/or OI is/are caused by autoimmunity (Systrom in Cort's article says that antibodies to acetylcholine are showing up in his tests), and if peanut allergy can be cured by having patients eat small amounts of peanut flour combined with high doses of Lactobacillus rhamnosus:

    ...then could our autoimmunity to acetylcholine (or whatever the culprit actually proves to be) be treated by ingesting small amounts of it with high doses of Lactobacillus rhamnosus?

    I'm guessing the answer is 'no' but can't resist asking the question. :)

    [I lurk these days :ninja: but still enjoy reading the forum on and off, and seeing you all in action!]
     
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