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Kawasaki disease as an initial trigger of ME and fibro

Dmitri

Senior Member
Messages
219
Location
NYC
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

1024px-Kawasakidiseasemanifestations.png


en_4a02qua03.jpg
 

Gingergrrl

Senior Member
Messages
16,171
@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.
 

Dmitri

Senior Member
Messages
219
Location
NYC
@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.

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.
 

Gingergrrl

Senior Member
Messages
16,171
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.

How high is your ANA?

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 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.

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.

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

Dmitri

Senior Member
Messages
219
Location
NYC
How high is your ANA?

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.

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?

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.

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

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.

Have you been checked for selenium and vitamin D deficiencies?

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.