Yours
880 posts
I would not be able to do this with corn starch (corn is one of my no-go foods) but I could try this with 'green banana powder'. I dont have autism but do have disordered sleep. Many of the dysfunctions in autism in this axis are shared in MECFS - cortisol spikes and mito dysfunction included.
Does anyone have experience with this? Sleep is still my primary struggle - I sleep long enough and fall asleep easily now (and get enough REM) but deep sleep is still insanely low. Low enough that I know that it is a very big problem. All herbs tried - so not looking for advice per so (most herbs actually lower my HRV, so things like lemon balm, valerian, scullcap etc. are no-go's). Eating close to bed has also lowered HRV, so using a prebiotic approach seems counterintuitive.
MAKE A STAND 4 AUTISM@MakeAStandOrg
SLEEP + RESISTANCE STARCH IN AUTISM I just read a post on another platform from parents with three kids on the spectrum. Two profound and nonverbal, one HF with ADHD. All have sleep disorders. Can-not imagine. I want to repeat our autism and sleep success story in hopes that it might help someone else struggling through this unimaginably stressful situation. Our daughter regressed at two, is now profoundly affected. For so long she only slept 1-2 hours a night. Other autism parents - you know this isn’t a normal sleepless night. She was climbing the walls, screaming, crying, etc. not just a typical kid having trouble falling asleep. You get the picture. After an abnormal muscle biopsy result several years ago, her neurologist suggest we begin dosing raw corn starch (yes, the kind you get at your local grocery store) at night before bed. We took her home from the procedure and began mixing 2-3 TBS of corn starch into orange juice and using a dispenser/syringe (like the kind you would use for Benadryl) into her mouth. The first couple of nights, she slept twelve hours. It was amazing, but we chalked it up to the anesthesia from the surgery. To our surprise, she continued that sleeping pattern for a week…and then two. This continued for almost TWO YEARS! I told all of the other autism parents I could and shockingly it helped a lot of other kids! Kids who had never tested for the same metabolic abnormalities or had a muscle biopsy. After two years, her sleep very gradually became broken again, but it has NEVER gone back to what it is was before the starch. This is a completely benign and extremely inexpensive intervention and I cannot think of any reason someone in this situation should not try it. This level of sleep disruption, on top of already existing functional issues and an already extremely challenging situation is absolutely unsustainable. I always hope this reaches someone new and helps. If it does, please reach out to me and let me know. I always love hearing the success stories. ☺️ (I should also say that we had already been giving melatonin to fall asleep and continued after the starch. The starch helps them stay asleep.) Jennifer
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@chydorina Yea, we’ve been made to swallow the idea that all men are equally endowed with reason.
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One of the most challenging aspects of my life is watching the derision and level of disbelief my family has in regards to what I tell them about the world around them.
They exist in this bubble of delusion - thinking that they are safe and healthy and everything will be ok and will just go on as before.
They actually believe I am crazy. I am the hypochondriac conspiracy believing family member. The ex-professor of Biology means nothing to them. They really think they are the rational ones. They think I am just silly, I can see them dismiss and ignore me - even when the issue deals with their own serious health problems such as strokes and heart attacks and dementia.
Most days I am able to just accept it and be ok with it - and I am so incredibly thankful for the eyes wide open community here - without X I would feel like I was just screaming into the void alone. How I wish though for people who really get it to be actually close to me.
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@chydorina @DuaneStorey Is this a substitute for all tests beneath the “Collect your data” section of Born Free?
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Anyone do any of these #longcovid tests from MMD in Germany? Some of them seem pretty hardcore, but no idea how legit they are.
mmd-labor.de/de/DIAGNOSTIK/
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Right. You hit the nail on the head. Chicken and apple are not giving you sufficient vitamins, nutrients, minerals. You have to supplement. You need electrolytes.
Read the bornfree.life/learn/protocol/
Even if you cannot implement it all - it will help to learn the general principles and where the most severe deficiencies and bottlenecks arise.
Install Chronometer and track nutrient intake. The results will likely shock you.
You cannot turn a dysfunctional system around without the building blocks: which are minerals, nutrients, vitamins, co-factors. If they are missing from you diet you must supplement.
Ami@amiandlife
@wholelife180 I’m living off chicken and apple atm. I barely leave the house. Just everything seems to be getting worse 💔
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@DavidAstinWalsh @TheIvyExile Greatest achievement? It may be their best arrangement. But it has no original melody at all. C’mon, it’s a blues.
Greatest? Stairway or No Quarter
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@TheIvyExile But that was Page, not Plant. (I agree with you, especially on the latter, which is easily their greatest achievement.)
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It is underrated just how much Alison Krauss has been able to channel Robert Plant into a vessel of actual artistic merit.
Guitar Gods Unleashed@UnleashedG23066
"Ramble On" is 56 years old and Robert Plant just walked onto The Late Show and made it sound like he wrote it this morning.
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Yes. BDMC (a special curcuminoid) is part of Plasmalogen Replacement Therapy. I get a lot of positive feedback - different curcuminoids = different effects - different processing i.e. liposomal = efficacy will differ. Most of what people have taken is poor quality and low bioavailability. When the right form is used it shows results akin to meds for inflammation.
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@Pinkdaisylemon1 @MidwesternDoc Please see nutritionfacts.org best available evidence in scientific research. Search dementia.
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@MidwesternDoc I lost both parents to Dementia now my husband has it. He's just been prescribed Donepezil. I don't want to give it to him. What can I do instead? I'm his carer and at my wits end. Can you give me any advice?
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We waste billions each year on Alzheimer's research due to a fraudulent 2006 study. That's why its drugs do nothing—but give 41% of recipients brain damage
As I show here, proven treatments for dementia and impaired cognition have been buried for decades
midwesterndoctor.com/p/the-great-al…
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@SalvMattera “Therefore when thou doest thine alms, do not sound a trumpet before thee, as the hypocrites do in the synagogues and in the streets, that they may have glory of men. Verily I say unto you, They have their reward.”
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Stuff like this drives me insane. It's extremely demeaning and inherently dehumanizing to disabled people. It turns them into props to make other people look good.
Think about what's actually going on here. Notice the language that's being used.
"Night to Shine" -- not their night, Tebow's night. He walks them down the carpet. How blessed they are to receive his generosity. The entire event is structured so that Tim Tebow is the focus and the disabled people are objects to be worn like an exotic hat.
"Celebrate and uplift" -- from where? From below, of course. The whole concept is built on the idea that disabled people are beneath able bodied people like Tim Tebow, who is being so generous as to reach down to temporarily elevate them with his presence.
And then what? The next morning they go back to their normal lives with the same challenges. The same medical system that fails them. The same society that looks away. But Tim Tebow got his video. The people watching it got to feel good about themselves. The ritual performed its function, which was never about the disabled people, but about everyone else.
Someone watches this and thinks, "we're doing something for these disabled people." It's a form of denial. It provides an unearned feeling of compassion, without requiring people to actually do anything.
Insane Clips@StreetFightsHQ
Tim Tebow hosted a red carpet event called 'Night to Shine' to celebrate and uplift individuals with special needs ❤️
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@mrblotzer @1monkeyThinks @Rainmaker1973 Exile: big minus is production really really sucks. For every good tune you have to 'enjoy' a mediocre or even downright annoying one
Rev 9 is only flaw: which is more Yoko Ono than John Lennon. Can't help but call it the first crack Yoko managed to splinter between Beatles
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@yoursken @1monkeyThinks @Rainmaker1973 as is every double album. there is no such thing as a perfect double album. every single one has at least one or two songs that are skip. The Wall? Vera abd bring the boys back home. White album? Rev 9. Exile really doesnt have much thats skip. maybe 1. its one of the best 2a
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@1monkeyThinks @mrblotzer @Rainmaker1973 Tons of filler mixed with some terrific songs. Didn’t need a double album.
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Finally! A paper that looks at the role of glymphatic system dysfunction specifically in MECFS.
Remember - we were not even aware of this system - the glymphatic system - existed until 2014. So, this is still cutting edge research.
search string for my previous posts on the glymphatic system: x.com/search?q=glymp…
Importantly, we now know that glymphatic system dysfunction is likely a big player in Alzheimer's pathology (and that while not identical, much of the pathology seen in Alzheimer's is also seen in MECFS).
The basic links is: Not getting enough restorative (DEEP) sleep. This is the sleep stage that occurs early on in the night. The one many of us miss entirely or almost entirely because we are too adrenalized and mast cell circadian shifted to get this crucial sleep stage.
Its in the deep sleep stage where the glymphatic function cleans out the build up of toxins in the brain. In people with neurodegenerative and other conditions MORE toxins are produced than in otherwise healthy people so it makes sense that this sleep period is even more important for us than it is for healthy people.
As hard as it is to get more deep sleep in MECFS it is one of the most important things you can work on. For years I let my circadian shift run wild and slept mostly in the early morning. I was always up at night. This was a period of severe decline and was the worst my state had ever been.
It took a long time to get sleep back on track. It was a priority for me for a long time - but I did it. I still get less deep sleep than I want - but it has improved and the improvement is very obvious - both mentally and physically.
The difference between an OK day and a bad day now is almost always because I loosened up on my sleep hygiene (which is not the same as for healthy people).
I have a lot of posts on sleep - search "sleep (from:chydorina)". x.com/search?q=sleep…
Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
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@trentlapinski that is great. yes, the higher doses can be crucial - but this makes sense - we have brain damage. we are trying to re-build our brain.
plasmalogens + peptides is a great formula.
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Chronic inflammation, neuroglial dysfunction, and plasmalogen deficiency as a new pathobiological hypothesis addressing the overlap between post-COVID-19 symptoms and myalgic encephalomyelitis/chronic fatigue syndrome
doi.org/10.1016/j.brai…
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This is a list including of most of my Long COVID treatment protocol. (Lyme, thyroid, vitamins, sleep regimen omitted.)
While Pemgarda hasn't helped my LC symptoms, it has helped stop some new acute infections. No negative side effects except flu-like when it fights COVID.
I've taken paxlovid for 20 days continously and also 2×2 week with a 5 day gap (total 30 days). Did fine. Tollovid has a similar mechanism and will be back on the market soon, but it's not as strong as Paxlovid in my experience, though safe to use long term.
My regular antiviral regimen is maraviroc, acyclovir, Stribild (or Truvada TDF form + integtrase inhibitor like Raltegravir), methylene blue, NAC, alpha lipoic acid, resveratrol, glutathione. Hydroxychloroquine and LDN for autoimmunity. Nattokinase, lumbrokinase, serrapeptase, baby aspirin for clotting. Cefuroxime and artemisisin may have duel antibiotic/antiviral activity. Monteleukast, loratadine, famotidine, quercetin, Hist Reset, hydroxyzine (at night) for MCAS. Lactoferrin, Viracid, Transfer Factor Sensitive, Alpha Thymogen 1 for immune boost. Skullcap (at night), perilla, and ivermectin (as needed) to reduce cytokines inflammation. I'm also on 12.5g/week subq Gammagard liquid immuneglobulin. Pemgarda every 3 months.
I tried metformin and statins for awhile, without success.
Solitary Native Bee, PhD@Anon61152358473
LCTeen starts Pemgarda soon! I'm looking for experiences from pwLC who have tried Pemgarda (or other mAb). I'm hearing that pwLC benefit but can relapse. My Evolutionary Biology training (PhD) makes me wonder if we need to plan for intrahost evolution when starting Pemgarda. 🧵
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@mehdirhasan I read somewhere that one of the reasons why the Nazis failed is that they did not have time to brainwash and condition their lower leadership.
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As much as I loathe it, the rightwing messaging machine is a sight to behold. They have, with astonishing discipline/effectiveness, conjured up an Antifa boogeyman out of nothing & are now talking of nothing else when I can’t remember them barely mentioning Antifa just months ago
Acyn@Acyn
Noem: One of the individuals we arrested recently was the girlfriend of one of the founders of antifa and we’re hoping as we go after her and prosecute her, we'll get more and more information about the network and how we can root them out and eliminate them from the existence of American society
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@yoursken Damn a screenshot of a caption of a generic Bernie attack from 2019 you're totally convincing me this guy has to be taken out
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There is literally no good reason for progressives to hate Pete Buttigieg or even oppose him at all. He is an extremely effective evangelist for progressive ideas and a great political candidate. And yet they can't wait to bring up their stupid conspiracy theory from 2019.
Luke Savage@LukewSavage
If I were Pete I'm not sure I'd be speaking about inflated grocery prices in public. Just saying.
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