"Dysregulated" immune system?

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 reading 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.

p.s. I am not your healthcare provider but a healthcare provider, and I’ll throw out there that you could perhaps look up undifferentiated connective tissue disease. Which is what I start to think of sometimes when I hear of “incomplete…”

@bluebillie
Was cortisol ever tested?
Thinking of Cushing’s- it also can occur in cycles. My daughter had it and before diagnosis she had a few returning bacterial infections as well as other symptoms. She had gained weight, had high blood pressure and depression.

@marymaryoregon @bluebillie I heartedly agree with the book “The Invisible Kingdom” by Meaghan O’Rourke. Fascinating, helpful, and easy to understand! Becky

Oh, also, let’s start by validating what we know with certainty!

1) you have intermittent episodes characterized by: fatigue, oral ulcers, and small joint pain (arthralgia)
2) your current lab work demonstrates that there is inflammation happening

Welcome to THE CLUB!!!! Did you know (you probably do) that it can take literal years before an ANA or ENA becomes positive? There are ENAs yet to be discovered…

I think we should call our club:
The Something Autoimmuney Club

Here’s how a pretend conversation with a non-club member might go:
Non-member: What’s your condition?
Autoimmuney: I don’t know, specialists don’t know- my immune system is just borked and makes me feel like something my dog found in the yard and then ate and then puked on the floor and then I stepped on in the middle of the night.
Non-member: But what’s your diagnosis? Haven’t you been tested by, like, a doctor? I have this GREAT naturopath/chiropractor/OB-Gyn/insert-specialist-here you should see!
(At this point, you will want to laugh hysterically while wiping small tears from the corners of your eyes, but you have chronic blepharitis/ocular rosacea and that makes your dry eyes itch more, so you’ll pass on eye rubbing in public)
Autoimmuney: yeah, autoimmune diseases are tricky, there is quite a lot we don’t know and it can take many years before the tests we have are positive or a diagnosis can be made. It’s actually an area that needs a lot of study and research. I have something autoimmuney- and that’s about all we know at this point.

(End scene)

My symptoms are not as severe, but I have psoriasis, occasional eczema/rashes, depression, and weight gain. I developed uveitis in one eye earlier this year after it recurred my eye dr. referred me to a rheumatologist. Except for slightly elevated CRP all the lab work was normal. About 7 years ago i had chronic diarrhea for 2 1/2 months. I lost about 25 lbs. Gastroenterologist ran stool cultures , all the various blood work, etc. Nothing was abnormal except an extremely high CRP. It resolved on its own. The only explanation they had was perhaps i had an infection that my body cleared and this was the reaction. My rheumatologist told me that even with the tests being negative she thinks there is an autoimmune component to the uveitis. The eye dr. Put me on a 3 month taper of eye drops to see if it comes back. My taper ends in a few weeks.

Mary, this was the best laugh I had all day. Keep it up. We are a species that loves to name things. It gives us a sense of control. It lulls us into the idea that we understand something when there is a good chance, we don't. Just keep that in mind when you can't find "you" listed in a book.

@walk4life It sounds like your doctor has you on the right track medication wise. Does you eye feel any better? I included this Mayo Clinic site because it talks more about causes of uveitis. Did the doctors talk about a relationship with your other conditions?
https://www.mayoclinic.org/diseases-conditions/search-results?q=Uveitis
Is your psoriasis well-treated?

If the Something Autoimmuney Club had a theme song, it might be the new song I made up a few weeks ago about diarrhea! I only wish I could attach an audio file for you to get the full effect! To be honest, it’s really only two lines, but I think with some group effort, it could be a whole song.

p.s. terrible gastroenteritis (which is a much fancier term for diarrhea every single hour for about 3 days until there is literally nothing left inside you) was definitely a turning point for me about 4 years ago I think? I got a whiff of hepatitis - which can happen when whatever virus/bacteria is inflaming your guts. And someone ran an ANA, which was only 1:80 at that time. I got more symptomatic within a year and my ANA was 1:320 on repeat about 10 months later. Did the GI bug *cause* it? Probably not in an A causes B kind of way, but it might have been one of the many things that tipped my immune system towards dysregulation. Diarrhea!

@becsbuddy Thanks for asking. My eye is better . The eye drops, one Prednisolone and one non steroid anti inflammatory clear it up. I have one week left on my tapering . I am down to once a day for the drops. The retina specialist doesn’t seem concerned about a relationship between the uveitis and my other conditions. The ophthalmologist referred me to the rheumatologist when i had the recurrence of uveitis. However since the tests were negative she is not concerned as she said often the cause of uveitis cannot be identified. The rheumatologist thinks that despite the negative test results, there may be some type of auto immune connection.