Hi, the short answer is that it is not at all unusual for young, fit females to develop hyperactive immune dysfunction. Here's the usual pattern:
- an immune/inflammatory Fx (for her, sarcoidosis and RA - and the Bell's Palsy)
- an Hx (in her, headaches possibly histamine or interferon etc. headaches)
- a viral illness can be a proximate (as opposed to underlying) cause
- then seeing many specialists (often over years), who merely do pattern matching and focus only on their own specialty
- exacerbating food sensitivities can be difficult to pin down
- symptoms wax and wane
- preposterously being told it is psychological
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Is she taking B12? GI problems might have reduced her absorption = anemia.
Inflammation can cause neuropathies AND brain fog, so there's a unifying approach.
Food sensitivities can be from components of foods. Oxylates, salicylates, histamine, etc.
Tying in heartburn? Try the antihistamine H2 blocker "antacids" such as Pepcid,, Tagamet, Zantac.
Try H1 blockers, sedating or non-sedating, for systemic benefit.
For an eye opener, take a tour of various medical websites and look up the Bell's Palsy cause: you'll see 'the cause is not well understood' over and over. I say that to indicate that there are mystery immune conditions. There are in fact many. No doc can say they've ruled out hyperimmunity as the underlying cause. And "autoimmune" is not all there is.
Sarcoidosis is absolutely not understood. We know the pathophysiology but not the etiology.
What tests *exactly* did the rheumy run? Besides ANA.
So then, you and her have been down the standard path, with no benefit. So your best bet is that you should become expert, in order to help both daughters. When you feel as if your head might explode from absorbing too much knowledge, you'll know you are on the right track :)
In lieu of that, find an extraordinary Functional Medicine Internist, to focus on the *why* (not just pattern matching), as a possible path toward improvement. But some docs just advertise themselves as Functional Medicine because it sounds good - though they don't put in the mental effort.
There is likely no magic specialist for her, with a magic test and a magic pill - though that's what almost everybody instinctively wants.
- you can send PMs here. text only
- you can post images on your account here, naturally with any private info blacked out
- it's always useful to post test ranges
"There are some minor outliers... that none of the doctors we've seen have found significant."
I'd disagree. E.g.:
- vit D is generally anti-inflammatory. So having low D can make her condition somewhat worse. Plus, if she's the outdoor type and gets sun, we'd want to know why her D is low.
Begin by assuming that for her (not necessarily for the average person), *everything* matters, and everything is linked somehow. Unless there is strong evidence otherwise.
For the moment, the tests of most interest were the ones done by the rheumy. ANA and dsDNA, e.g.
"...an inflammation indicator"
Which? CRP, ESR? Those are the basic ones, there are others to ask for shortly, as a fishing expedition. Like IL-6, IL-1, TNF.
"UIBC is levels were high (386.)"
Yep, as if there is not enough serum iron to saturate, which fits with low absorption of iron. Btw, it usually takes a while to raise iron via supplementation. And take with vit C to absorb better.
"one Lyme band"
That's always a possibility.
"... specific books or online resources you recommend?"
Nope; and it would, I think, be a waste to get bogged down in anything formal like an Intro to Immunology course. That'd just slow you down.
What you should do first is become very aware of what immune cells do. And also an overview of the various signalling molecules, like interleukins (IL-6), amines (histamine), and the rest. Watch lectures and interviews on yutube, and some patient accounts, too.
But patient accounts of what? Anything that fits with what can be classed as mystery immune conditions. From lupus, and seronegative RA, Ehlers Danlos, MCAS, MS... lots of things that are different from each other yet have commonalities.
For very starters, learn what Mast Cells do. They are instrumental in food sensitivities. Orchestrators of harmful immune response, but not "autoimmune".
You're a good dad, they're lucky to have you.
Why become expert as far as having an overview? Because she doesn't fit well into anything easily classified, or else they'd have done that by now. So you need to know *why* her problems exist, in order to counter them. That's Functional Medicine. The best FM doc I know of is the GP named Mark Donohoe, in AU. He has various talks online, but you need to know the basics first.
Speaking of Donohoe, I forgot to include Chronic Fatigue Syndrome in the list of mysteries. Throw in fibromyalgia, too; not because she has any of these per se, but to understand the mechanisms involved.
And always always always think of the immune system in military terms. Killers and commanders and communicators.
What possible treatment(s) could there be?
That's simple, in a way. Don't do anything that is pro-inflammatory. But do everything that is anti-inflammatory.
Then the details of that can become ultra complicated.