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

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CD21 and CD19 deficiency: Two defects in the same complex leading to different disease modalities – ScienceDirect

Some things in this article are ringing similar or our case — particularly the part about normal T, B and NK levels, normal IgM levels, but then all of these problems with infections —

(I admit I can probably only understand about 20% of it though…just enough to put some pieces together—)

I think this article is saying disease progression is different in different patients — Noah started getting sick when he was 2 years old (after he left the house and started preschool), and I’ve been getting worse and worse and I’ve gotten older—

Could this disorder also explain why IVIg makes me feel better? IVIg has made me feel better, from the moment I started it…if it wasn’t for this salivary gland removal infection, overall I was doing better than I had for years on ivig—

Can we start Noah on IVIg (even just a low dose if we have to pay cash for it?) Ask Dr. Kachru? IVIg will help Noah feel better, and it will help him gain some weight too—

I’m really impressed you stumbled up on this issue…and I’m very grateful. Of all the ‘fancy’ specialists Noah and I have been too, I love that you found one of the best clues to date 😍. Noah and I look so healthy, I can see most of these specialists blowing us off (not the NIH, but almost everyone else), and I’m always snapping at them “you should talk with Noah’s doctor or talk directly with my doctors directly — they know something unusual is going, they’re the ones on the front lines helping us stay alive, and keeping us alive is a constant, never ending job—nothing about this is normal —ask them—“

It sounds like there’s a lot of variations in severity of disease with this CD 19 problem, and Noah fits right on the potential spectrum—not the most severe case, but definitely bad enough to cause problems all of the time—

Thank you very much. I’m almost positive this is it. It even effects the complement system, which I’ve suspected was somewhat involved somehow—

Now let’s figure out how to test it 😍👍. I’ll start researching around for labs who can test this…

https://www.sciencedirect.com/science/article/pii/S1521661615300279

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Deficiency in Memory CD 19 cells —can we investigate this further?

This deficiency is very interesting, and seems to fit within part of the story of Noah’s health — for example, with the pneumococcal vaccine, he’ll mount a response, but then it depletes faster than normal, so he’s already had a lot of extra ‘booster’ shots — it’s like his body forgets faster than it should. I’m not sure if this result can explain is low wcb or his slightly below normal other results (which are definitely flags of something—)

But I hope there’s a way we can explore this memory cell issue…I hope we can investigate this further…

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Study Finds Genetic Links for Vulnerability to Common Infectious Diseases

Is there any way to test for these immune disorders mentioned in this article? My genes ‘contributed’ to the research for this article, the company told me. I’ve submitted my DNA and answered over 1500 23 and Me health questions, so I’ve actually been ‘included’ in a bunch of studies, but they won’t say exactly how I contributed to these studies…I wonder if there’s a way to find out how?

https://blog.23andme.com/23andMe-research/study-finds-genetic-links-vulnerability-common-infectious-diseases/

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9 August, 2018 09:33

http://happy.redskyfx.com

Rita Kachru

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Crap. My fasting cholesterol is over 300 😢. (Maybe it’s just a sign of how sick I am?)

I don’t really know what to make of this high cholesterol—I believe my cholesterol being so high is more of a sign of how sick I am, then actually a danger to my heart 🤔.

Uncle Bobby and I used to talk about this a lot—how Cholesterol was basically indicted at the scene of the crime, but isn’t actually a problem itself in the human body…cholesterol is more of a sign that the body is actively doing a lot of repair work, so it’s working overtime.

God knows I’ve felt the worst I’ve felt In years (maybe ever?) the last few months, with the new brain lesion that I think is also due to infection,

and if I’m right, then my body is really working overtime right now to try and fix itself…

Anyhow, I would never take Statin drugs anyway, because they’re too hard on the liver and I need to preserve whatever liver I have left to keep it working for the drugs that are definitely keeping me on the planet (mostly the IV antibiotics and the IVIg).

Still, a 300+ fasting cholesterol is definitely a warning flare going off—hello, there’s a problem, Houston 🤪—and trust me, I feel it every day—

(Someone needs to study cholesterol levels in septic patients—I would love to know what someone’s cholesterol is when they have a severe infection and compare it with their baseline cholesterol—maybe I’ll try to research to see if anyone has done this…right now I’m too busy researching my family tree, try to find any second cousins who may have this disorder as well…I’m pretty sure it’s a new mutation descendant from my great-grandmother Fanny Featherstone (1884-1942) who died of Leukemia, but I’m researching her siblings as well to see if any of them might have had this problem too (50/50 chance of inheritance to each kid, and some are looking like possibilities). Since I’m so ill right now, I’m trying to get this family tree finished before I die, to leave the information for Noah and his doctors…it will help if I can find someone alive who has this as well (unfortunately the main contenders die off), but if I can find someone else alive, then it would help genetic researchers narrow down the search a lot. Since it’s a new mutation, it’s probably being labeled as ‘unknown’ to be pathogenic, and unfortunately there are thousands of unknown mutation…narrowing down the field wouid help a lot—)

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And yet, my hair is super healthy…

Here I am spending the last few weeks feeling like I’m dying, like I need to make preparations, etc, and tonight the hair stylist keeps talking about how great my hair is, how thick it is, how textured and moisturized (and whatever words she used—)

“Whatever vitamins you’re taking, keep taking them, you’re hair is incredibly healthy-“”

Without understanding the magnitude of the irony of this moment,

I just looked at her and smiled,

“My hair is healthy?”

“Oh yes, it’s extremely healthy. Healthier than most people, you’re so lucky—“

Let’s take a moment to digest this: my hair—-and who gives a f*** about that—is healthier than normal.

So why is it that everything else in my body is so f***ed up? What mechanism that connects my body’s ability to recognize pathogens that’s working so slowly (and ineptly), but the mechanisms that influence my hair growth and ‘healthiness’ are working so well?

Having beautiful hair ain’t gonna help me from the coffin…at least I’ll look pretty when I’m begging God for a ticket to the party, cuz He knows, better than anyone I got a little explaining to do 😜👍.

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