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"Dysregulated" immune system?

Autoimmune Diseases | Last Active: Nov 17, 2023 | Replies (20)

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@johnbishop

Hello @bluebillie, I would like to add my welcome to Connect along with @cpd54 and others. It can be terribly frustrating trying to narrow down a diagnosis and find a treatment that helps. It sounds like you have a great care team with the doctors and specialists you have seen. I wasn't familiar with a dysregulated immune system but did find some information that might give you some more clues to discuss with your care team.

--- What Does A Dysregulated Immune System Mean For Atopic Dermatitis?: https://nationaleczema.org/blog/research-on-immune-system-and-atopic-dermatitis/

"How immune deficiency and dysregulation disorders are treated through antibiotics, antibody replacement, interferon, and other treatments."
--- Immune Deficiency Disorders: Treatment: https://www.nationaljewish.org/conditions/immune-deficiency-disorders/treatment
--- Immune Deficiency and Immune Dysregulation Disorders: https://www.nationaljewish.org/conditions/immune-deficiency-disorders

I know you mentioned you have seen your Primary, Neurologist, immunologist and rheumatologist. Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

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Replies to "Hello @bluebillie, I would like to add my welcome to Connect along with @cpd54 and others...."

Hi @johnbishop thank you for this info! The article on atopic dermatitis is especially helpful and it really seems to fit in with what some of my specialists have been saying about my immune response being "off" or abnormal in some way. I actually did an online application to Mayo and received a phone interview. Sadly I got a very rude person who told me that because I was not "officially" diagnosed and had not "failed treatment" for anything specific, I couldn't be scheduled. I should clarify the information wasn't what I define as "rude," just the attitude of the person. I did report that to their complaints line to explain my feelings and as someone formerly in healthcare management, I emphasized that I just wanted them to retrain on empathy and professionalism vs. take punitive action. Regardless, I'm not sure if it's worth just doing a new application at this point? Thankfully I have a very supportive family so can travel anywhere in the US as needed.