"Dysregulated" immune system?

My symptoms are nowhere as severe as yours. I believe a very stressful situation brought them on. But I found relief by working with a functional medicine doctor. It took about 6 months but I found out certain foods brought on the pain, fatigue, brain fog that just popped up for no reason. I was also diagnosed with Sjogerns. Good luck and many hugs while you try to find an answer.

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?

Immune dysregulation is the primary step in autoimmune diseases. You have the determination and self interest to pursue a diagnosis and treatment at your young age. You have seen the appropriate specialists and
are well aware of your testing to date. Suggest you continue documenting your symptoms. Take good quality photos of your skin symptoms. Some tests may need repeat during your cyclic flares, Ensure that your doctors are communicating actively. Especially all history and lab reports in one data set.
I see value in in a several month trial of an anti-
inflammatory diet with gluten restriction, The concern for you is not losing weight so that will be a difficult effort.
If circumstances allow consulting a multi specialty tertiary academic clinic might be worthwhile.
What therapy have your physicians recommended so far. Has anything helped your symptoms.?

Hi @cpd54 thanks so much for the welcome and luck and hugs sent my way! I have a friend with Sjogrens and know how difficult it can be. For a long time, I did diet restriction based on food sensitivity testing but I unfortunately also have GERD due to an esophageal sphincter issue (too lax when opening) and IBS-like symptoms as well, that absolutely flare up when having a skin/lymph node flare also. That said, it was hard to tell if diet changes helped, but I'm considering antiinflammatory diet as @seniormed suggested below. I absolutely concur with your thoughts on stress-responses! Thanks again for your thoughts

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.

Hi @seniormed thank you for your response, I really appreciate it!

I was actually gluten free for about 7 years (2013-2020) but did not add in antiinflammatory diet because I have been told by some of my physicians that it is anecdotal and there is not enough supported evidence of efficacy. My primary care (whom I really like and believe is well-educated and stays up to date) is an advocate of the anti-inflammatory diet as well. In my food sensitivity testing back in 2011 (IGG) I was moderately sensitive to gluten, but wasn't sure how much stock to put in that sort of testing. I did merit a call from a testing company physician from my results, because they told me I was one of the most "reactive" people they'd seen., with several "severe" sensitivities to different foods. As I said to @cpd54 I do have a gastrointestinal component in addition to these skin "flares" of reflux and diarrhea. I was diagnosed with gastroparesis as a teen after an EGD due to severe reflux causing weight loss at 12 years old. I was put on propulsid (and a PPI) but taken off due to it being pulled by the FDA due to mortality risk, I believe. I am on a PPI now which generally controls these symptoms outside of flares.

The advice on documentation is excellent and I am going to look back through my phone for any and all pictures I have available as that's an area I could improve upon. Most of my doctors are in the same health system so thankfully have easy access to each others notes.

I was trialed on colchicine for possible Behcet's but couldn't stay on any dose due to pretty severe diarrhea (I think I tried 1.2 mg all the way down to .3 mg). I know that's a common response, but my rheumatologist thought it was worth trying. My immunologist said I have non-allergic rhinitis and posited I am sensitive to physical particles, dust, smells (perfumes, gasoline, etc ) and put me on Flonase, which I tolerate decently though I do get epistaxis so have to monitor humidity/moisture levels carefully in the dry season. He did diagnose me as "high risk of infections" and I had my pneumococcal 23-valent vaccine early (< 65) because my titers were not robust enough for his liking. My primary care said we could consider steroids or antibiotics, but would think going the MAB route might have better response, but none of my specialists will discuss putting me on one because of lack of a specific diagnosis and my primary care says it's outside her scope of practice. I use hibaclens for the dermatitis aspect but my dermatologist didn't give me insight beyond "some people just get bacterial skin infections chronically."

We are definitely considering reaching out to Mayo again and also our state's well-known teaching hospital for some more evaluation and treatment plan.

Thanks again for all the advice and knowledge!

@bluebillie, thank you for reporting your experience to the office of patient experience. Mayo Clinic would want to know to improve through retraining or guidance. I can't guarantee a different outcome, but I know that several members have shared that they were accepted as a patient at Mayo after initially being denied. There are many factors that contribute to acceptance, including things like availability of appointments and a specific departments capacity. Having worked in healthcare management, I realize I'm telling you what you already know. 🙂

Have you looked into Mast Cell Activation Syndrome? It is difficult to diagnose.
Google this:
Mast Cell Activation Syndrome: A Primer for the Gastroenterologist

It is a guide written by some of the top US based doctors on the subject…

Try calling again. You have a provisional working diagnosis
from your primary doctor and need effective therapy.
Most likely you will find another intake assistant in a
helpful mindset. There are hoops and algorithms we have
to negotiate and different approaches to gatekeeping in
medical care delivery.

Your story sounds much like mine except my ANA was 1:320 and I have never (probably never?) been tested for EBV, or if I was it was long enough ago I don’t remember.

Here’s my question for you: what are you seeking? Are you looking for “what is causing this??”? Are you at all prepared to accept a non-answer? Are you looking for a permanent fix or for relief of symptoms that can be improved upon? It sounds like the answer you have been given so far is… a dysregulated immune system. The term I used for myself (after about 3 years of alternately trying to pretend it wasn’t happening and spending hours/days lost in medical literature obsessed over reason everything I possibly could) was “something autoimmuney”.

It is not a clear cut answer- it is definitely not one that is simple/easy to explain to casual acquaintances or extended family at holidays. But it is possibly the best we can get right now.

We don’t know one another, and I don’t have any idea where you are at mentally and emotionally on your journey- but the book “The Invisible Kingdom (Reimagining Chronic Illness)” by Meghan O’Rourke made me feel very seen!!!! It didn’t help me come to any epiphanies because I had made my peace (for the most part) with the ideas that I would: 1) never have a better “what is this?” than “something a little bit funky with your immune system” 2) never know whether it would “get worse” and turn into full blown lupus or dermatomyositis or cause severe/serious internal organ damage until that damage had already happened (or never happened) 3) never know why my immune system became dysregulated except that there had to be multiple factors involved 4) would never be able to fix this except, oh by the way, sometimes this vague condition could spontaneously resolve in a small percentage of people and 5) it would never be simple to try to explain this vague and nebulous and waxing and waning and weird thing that I don’t really understand myself. But I’m here, and I don’t hurt as much or flare as much as I used to, and my expectations are to try to manage symptoms as much as possible and live in hope that I stay firmly in the vague autoimmuney category without severe organ damage.