I have not forgotten this. Had a reminder set, in fact.
I’ve been contemplating however.
If I had the $ and knew a geneticist, I’d hand it all over in a second!!!
My immunologist ordered the “Primary Immunity” panel at Invitae. He’s always talking to the various testing companies and seems happy with this one (he’s Somebody in the immunology world - Dr. Isaac Melamed).
The test he ordered is this one: “Invitae Primary Immunodeficiency Panel” - 207 genes. I have an appt June 4 or 5, hopefully will have more details on what results look like by then.
Here’s my reservation - the information I’m going to share should not be taken as gospel. It makes TONS of sense (after reading 50 times or so…), and this Dr. Amy Yazko provides online ebooks, presentations, and a forum for her “Methylation Cycle.” Her method is to use your uploaded data (or pay for her genetic test), identify genes such as COMT and MTHFR and other critical ones that cause a slow cascade to DNA and nerve degeneration and the express the dark side of epigenetics. (versus maybe the DNA stitching back up and de-expressing disease) You put in your data, you get out her protocol for nutrients/vitamins that offer “backdoors” to the broken cycles. That’s it in a nutshell.
Mine has 30+ DIFFERENT supplements, and 5 “nucleotides” products, which are about $100 each, for 30 days. This is a lifetime thing.
THAT SAID - I gave it all to my immunologist and he was curious because SERINE is in her map. It’s one of the cycles broken for me, and it’s behind low C1 and a ‘rare’ lung disease called Alpha-1 Antitrypsin Deficiency. I’m ONLY a carrier. However, things have degenerated so badly that the disease is expressing. I got infusions while on Medicaid, but on Medicare I can’t afford $500/week.
Also, his passion project is “Neuro-Immune” - and somehow this is related. (he’s writing research on it, so some day folks will have an answer…) He’s identified a cluster of irregularities that seem to define this “Neuro-Immune” and is looking for the root cause. The supplementation is a “band-aid” as is the 6 anti-infection prescriptions I take weekly and daily.
One is anti-bodies to … erm … the test is called " Anti-68 kD (hsp-70) Antibodies, Western Blot". Generally “diagnosed” as inner ear hearing loss - he’s linked it to cognitive issues among his patients. It’s more than that. So that’s how he thinks. Out of the box. He doesn’t take “oh, it’s just Meniere’s disease, so sorry.” He links things up. This is important.
Another thing he’s linked is Antiphosphatidylserine - there’s SERINE again. But this is involved in blood cancer, lupus, joint diseases, connective tissue, etc etc etc. Antibodies against “phosphatidylserine”. And I have tons of 'em.
If I followed Dr. Amy Yazko’s Methylation protocol, her #1 supplement and the one often highly encouraged in the related forum, I would be INCREASING my auto-immune problems.
See why I hesitate?
Ok, that said, here’s where you can find info on this methylation map. For the record, I’ve added quite a few ‘backdoor’ supplements from more affordable sources and am treating my GUT!!! Probiotics, fermented foods, cabbage tonic , and while my ALCAT test came back with milk products having one below severe immune response, I take collagen peptides and “egg-based colostrum”. I will switch to bovine colostrum (ideally goat if I can find it) because 30-days of egg gut immunobodies was $70. I healed my dog’s gut with it, after vets missed chronic hookworm, tapes, rounds - destroyed his gut. With time he healed. So for me, given my body, the risk is worth the gain. (Gelatin is also a good one for the gut - find a good source).
I take SSRIs and ADHD meds - you’ll see Serotonin and Dopamine are cut off w/ the COMT gene, and others. It just compounds.
Your age upon symptom onset (“psych” manifestation of immune source) is important. If you have that. If you’re over say 26 and never had it before, the immune system could be culprit. But modern medicine is band-aid therapy. Treat the symptoms. My anxiety went through the roof and ADHD uncontained by meds towards the end of my 30’s and into 40’s. Mold also causes brain inflammation in me - just rotting wood, nothing crazy. Or mildew in a shower. And it’s labeled psychosomatic and psych, and down that black hole we go…
So that’s my fine print. I don’t want folks hurting themselves - sadly out of desperation from a failed medical system
Here’s the main site:
Click the green “Start Here” and you can create a login to upload your 23&me data. It gives you a ‘customized protocol’ of supplements. Read the “Companion Guide” as well - it’s a meaty document. The info seems sprinkled throughout - but I also have cognitive issues and could well just not be able to make sense of it as I once could.
Example: I found out my struggles with cobalamin (B-12 format), and even methyl-cobalamin taxes my liver (part of lung disease enzyme). I need Hydrox-B12 and Adeno-B12. So there is some good info to be found.
The overview of her Methylation Pathway - my #2 go-to diagram:
Homocysteine overload is the SYMPTOM. This approach looks at it as the problem.
It can’t be broken down, so robs neighboring systems of molecules - breaking the systems in the process. So those systems snatch molecules from THEIR neighbor’s system, on and on. That’s the cascade.
This next diagram is my #1 go-to diagram. I printed it out HUGE, so I had to tape 2 sheets together to = 1 page. Then stapled the 5 double-pages together, and that’s what I have in my back pocket when I see a new doctor. I ask them genuinely for help at making sense of it (with my genes highlighted - half). It at least has them reconsider what they’ve already labeled me with before they even open the door - as they are so habituated to doing.
Maybe I have just had bad luck. My experience is doctors ignore the very REAL evidence on their own exam table because it’s not written up in some peer reviewed journal somewhere - so must not exist. (oops, was that sarcastic? my bad…)
Sorry for the length. I’ve thought long and hard, but we need any information we can get. And getting into an adept immunologist is hard, much less one that leads global research. I’m never moving!
And for the record, he’s looking at IVIG type therapy to fix the immune system that got out of whack in the first place, causing this whole mess to express. Clinical trials, he just needs to make the case as the criteria is tightly controlled.
Just to show how this could well all just be symptoms of a taxed immune system due to “food-stuff” that’s manufactured, not grown; sugar; anti-biotics; stress; environmental toxins; incorrectly prepared food (ex: all grains, legumes/beans/peanuts have enzyme inhibitors and we eat them ground with wild abandon).