I'm listening and watching reporters, doctors, survivors and experts discussing this strange, sudden yet delayed onset of respiratory distress in many COVID patients and now this "Mutisystem Inflammatory Syndrome" in children who have been exposed to COVID.  Im hearing doctors talk about cytokine storms and leaking blood vessels ("like the very rare Kawasaki Disease" they say.) There has been mention of the possible use of IVIG as a treatment. And I'm thinking "Wait...this is not new!" When I hear the COVID survivors describing how, just as they seemed to be kicking the virus, suddenly they couldn't catch their breath. And then the O2 sats are dropping down below 80! 

This is verbatim how SCLS affected me. Twenty times. Each hospital stay two and three weeks at a time. 

I'm just curious! Has anyone else wondered about this? It seems like the SCLS community and COVID researchers could learn a lot from each other. Maybe? Any thoughts, anyone?

 

 

Hello, if you have something similar, I attach the link to a medical article that talks about the cytokine storm.  I hope it can be opened because I couldn't paste it.

https://pubmed.ncbi.nlm.nih.gov/32192578/

Please take a look at my recent post, https://rareshare.org/topics/1993

I am also interested in the role of cytokines in SCLS. 

I suffer from a probable milder but chronic version of SCLS. I have an episode approximately twice a week, although some things influence it like weather where it is worse in rising temperature and air pressue. I have elevated cytokines and my intergrative doctor feel that this is the route of my issue. He says that mast cells are releasing excessive cytokines along with other mediators.

For example, see especially Interlukins 8, 10 and 13

Proinflammatory Cytokines

Interlukin 1    Range  (0.0-2.8)  result  5.9

Interlukin 6                 (0.0-11).            23.6

Interlukin 7                 (0.0-17).            20.7

Interlukin 8                 (0.0-28).           223.2  

Interlukin 17.               < 13.                25.6

TNFa                          (0.0-13)            16.7

TNFb.                         (0.0-156).         106.5

Antiinflamatory Cytokines

Interlukin 4                (0.0-190).          71.3

Interlukin 5                (0.0-13).            55.5

Interlukin 10              (0.0-11)             199.1  

Interlukin 13              (0.0-6)               301.1 

INFg                         (0.0-28)              47.8

Is this a mild cytokine storm ? I am not really sure, but would love to hear the thoughts of anyone else that also ponders these isues. I also worry what Covid-19 might do to me when cytokines are elevated on a good day, although I do feel blessed to live in Sydney where things are currently very mild. 

I hope you all stay well in these difficult times.