Maybe you or Dr. Kachru can order the CD 19 test into UCLA?

I don’t want to wait to see Butte…maybe you can ask her to do it, under the guise of ‘then Noah will have the results to discuss when he sees Butte?’

I’ve been really sick the past few months (even worse than normal for me, I have a new brain lesion, etc), so I’d rather not wait because getting up and going back and forth all the time to doctors isn’t easy. It’d be much better to do the tests, then go over the results with people…it saves a trip to the office…

(Especially Butte — to talk about what? What more does he really need to hear? If he truly cared about Noah’s case he would have reached out to you. They have records, they have the referral to Dr. Wong in the UCLA system, Dr. Kachru is in the UCLA system, it’s all there. Clearly he just has cases he feels are more important. I’m not upset, I’m just practical about these things, if a doctor is resistant to help I just have to move on (in order to survive 🙂

Maybe if we order these CD 19/CD21 tests, and the results show insight, then he’ll probably help because our case will be more interesting to him. He just doesn’t want to spend the time thinking about what could possibly be the problem (since the possibilities are endless—they don’t even entirely understand the immune yet—), so he probably prefers a positive result to something, *then* wants to be involved in the discussion for how to treat it (if it can be treated).

It’s the thinking that’s so time consuming, and not of interest to most doctors…then you combine how healthy we look (which makes these specialists feel off the hook when preliminary tests come back ‘normal’—they would never blow off someone who actually looked sick—),

but doctors on the forefront of our case know it’s serious and can’t shake it, but sometimes these specialists feel they know better, so they also dismiss what their own colleagues are trying to tell them 😢.

Let’s figure out how to order these CD19/20/21 tests…

If UCLA won’t help, maybe if you call Cincinnati and talk with them, they might help? Maybe we should send blood to them?

Cincinnati has a new director of their Immunology lab—maybe if you just start fresh and ask her what wouid be good tests to run? She normally hears from immunologists, but if you’re passionate and concerned, I’m sure she’ll give you some ideas too—

https://www.cincinnatichildrens.org/service/i/immune-deficiency/diagnostic-lab

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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