The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Kawasaki disease as an initial trigger of ME and fibro

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Dmitri, Mar 1, 2018.

  1. Dmitri

    Dmitri Senior Member

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    Kawasaki disease is a vasculitis of presumably autoimmune origin. It sounds very similar to my causative event from antibiotics as a child, especially the red, inflammed mucosa. I searched for relation between KD and fibromyalgia and CFS which led to personal reports of patients having lingering symptoms diagnosed as CFS and fibro after the disease supposedly gets resolved, often ignored by physicians who also try to deny any connection.

    https://en.wikipedia.org/wiki/Kawasaki_disease

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  2. Gingergrrl

    Gingergrrl Senior Member

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    @Dmitri So are you thinking that Kawasaki's disease is actually your diagnosis? Or that you have multiple diagnoses? I am very interested in the number of people who were misdiagnosed with ME/CFS but ultimately turn out to have something very similar yet different.
     
  3. Dmitri

    Dmitri Senior Member

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    I think everything may have started with something resembling temporary kawasaki's which left some type of nerve damage, or hyperactive microglia if going by that theory. I also thought about drug-induced lupus, since the antibiotic I was given, isoniazid, is known to cause it. I still believe there's an active autoimmune process going on that is driving neuroinflammation, but the only clues to that are elevated ANA and family history of lupus/sjogrens.

    If prednisone once relieved my symptoms (before the second dose at which it gave me a severe MCAS-type reaction), that's another clue that may suggest it's autoimmune or peripheral inflammation. I've also been taking LDN for two months which is supposed to help a subset of autoimmune and ME patients, but don't feel any response. At least I'm tolerating it, which is remarkable for such a long period of time.

    IVIG is the standard treatment for Kawasaki's, but I can't find official or anecdotal on it being used to treat post-KD "CFS". I would really like to see what effect IVIG has on me, but I don't know which direction to continue my "diagnostic odyssey" to get it prescribed. I am at the point where only such heavy-hitting treatments give me some hope.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    How high is your ANA?

    I had not heard of "Post-KD CFS". Does this mean that the Kawasaki's Disease sort of resolved itself but it was the trigger of the CFS? I had multiple original triggers of my illness (one was an antibiotic reaction like you, followed by severe mono/EBV, followed by toxic mold exposure) and then everything shifted into autoimmunity.

    Do you have any doctors who would be willing to consider trying IVIG? It seems worth a trial from what you describe.
     
  5. Learner1

    Learner1 Forum Support Assistant

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    Have you been checked for selenium and vitamin D deficiencies?
     
  6. Dmitri

    Dmitri Senior Member

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    1:160 speckled pattern, only tested once. Tests specific to Sjogren's, lupus, RA, etc.come back negative, like pretty much all my other blood tests.

    Yes, exactly that. There are numerous examples of it reported online:

    http://www.kdforum.org/viewtopic.php?f=1&t=910

    http://www.kdforum.org/viewtopic.php?t=2608

    http://www.kdforum.org/viewtopic.php?t=1090

    http://www.kdforum.org/viewtopic.php?t=3364

    KD is described in current medical literature as being self-limiting except for a 2% mortality rate and 20% cardiac problems remaining after it, but the picture looks to be much more complicated given how often these other mystery symptoms persist.

    Unfortunately, I have no means of getting it prescribed at the moment Most of my doctors believe it's unlikely that I have an autoimmune disease and only offered trials of plaquenil, gabapentin, antidepressants, etc. Plaquenil is not worth trying due to taking months for an effect to kick in, I wouldn't be able to tolerate a standard dose of an oral drug for that long. Gabapentin didn't do anything and just caused more mucosal irritation.

    My vitamin D was low in 2012 and in the lower range of normal in 2016. I checked through my records and a test for selenium was never done. My diet is high in selenium, but it's hard to tell if there are problems interfering with its absorption.
     
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