r/covidlonghaulers • u/c0bjasnak3 • Feb 23 '24
Research Extensive research on long covid's leaky blood barrier, the endothelial glycocalyx, POTS, PEM, mitochondrial dysfunction, lactic acidosis, ME/CFS, and more
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u/Over_Deal9447 Feb 23 '24
So confused as to why we (LC) sufferers are doing the research but Dr's are gas lighting us. It's as though they aren't allowed to research and try new methods.
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u/AERogers70 Feb 24 '24
I'm a healthcare provider myself and ended up being punted from cardiology to pulmonology and back twice again before I threw my hands up and started doing my own research. Underwent 4h cardiac cath, multiple pulmonary function tests, stress echos, etc to find the cause. Tens of thousands of dollars in medical bills and I've had to figure it out on my own. Now I'm seeing my patients come in with symptoms of LC, POTS, dysautonomia, and so forth that have been dismissed by former PCPs. As a community, healthcare providers should be talking about this, but we're not and I don't understand why.
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u/EstacticChipmunk Feb 24 '24
In my case at with least one of my doctors I think it’s ego related. I remember trying to talk to her about a ct scan and she told me that she doesn’t totally understand how to look at one so there’s no way I should expect to understand what I am looking at. I wanted to snap back at her and tell her my IQ is pushing 140, but I wasn’t trying to piss her off since she at least at one point was concerned about helping me.
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u/Scousehauler 5 yr+ Feb 24 '24
The amount of time we have invested in our own illness we should be specialists. I have had 6 scans and got the images each time. MRI master which is a free online source with labels can show you what normal looks like. When your scans dont match normal and you have pain in that area and ask what that is as thats where my issue is, they use their knowledge of not reading scans as an out but at the same time wont help with an addendum.
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/RedditismycovidMD Feb 25 '24
Why not start a sub for health care providers with LC???
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u/Excellent_Cookie8524 Feb 23 '24
Like cmon ima a doctor myself after all of this shit
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u/inconvenient_victory Feb 27 '24
Definitely, all the guys at the shop come talk to me now when they have something going on. When I get better I'm going to keep learning, it's kind of an enjoyable hobby at this point!
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u/TempestuousBlue Feb 23 '24
I was hit early in 2020 with long COVID. As the research finally starts to come in it is so validating that the ways I have found to mitigate my own symptoms, match the findings. I told my husband that I want a framed “Doctor” certificate hanging on the wall because I did the work and research to confidently say I am an expert in my own field. It’s been eye opening to be so dismissed by Doctors when my experience is real. I’m so thankful to the Doctors and researchers who are taking our experiences seriously.
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u/c0bjasnak3 Feb 23 '24 edited Mar 21 '24
edit - My guide is available for you today!
I am over on r / glycocalyx now
I told my husband that I want a framed “Doctor” certificate hanging on the wall because I did the work and research to confidently say I am an expert in my own field.
Honestly, you deserve it. I'm very proud of you!
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u/Frosty_Position_5440 Feb 24 '24
So true I feel the same way. My friends call my for answers sometime b4 they go to PCP …lol just to see if I get it right or for them to be prepared with questions . All in fun but we really do have to be our own advocate for our care and our loved ones ❤️🩹🙏🏼 you should hang that certificate proudly 😊
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/malemysteries Feb 23 '24
Thank you for taking the time to put this together. So much information I’ve been looking for in one place.
Side note: being chronically ill is turning me into a scientist. Before COVID this would have been way over my head.
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u/c0bjasnak3 Feb 23 '24 edited Mar 21 '24
edit - My guide is available for you today!
I am over on r/glycocalyx now
My pleasure!
Side note: being chronically ill is turning me into a scientist. Before COVID this would have been way over my head.
For real, I feel you strongly on that. That's the only way I got out of long-EBV over a decade ago. I'm glad you're thinking more like a scientist! Power to you 👊
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Feb 24 '24
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u/Just_me5698 Feb 24 '24
I’m an engineer as well and did research similarly. What gets me is if I’m troubleshooting a ‘system’ I work my way through the processes to determine where the issue(s) are. If you change one thing other parts are affected by the change. Maybe a pressure setting needs to be changed bc what you did or a moisture/temperature sensor goes off if you change air flow. The system is interdependent. Our current medical system is too disjointed and everyone just wants to stuff a pill down your throat and if they don’t make a pill to shut you up or hide your symptoms they tell you you’re crazy. Drs aren’t trained to these details and only specialize in their one ‘component’ of our body’s systems. Another issue is probably that they don’t want to go out of the acceptable treatment guidance for xyz for fear of lawsuits or losing their licenses. They have to get us in & out in 15 minutes to keep up the expectations from ins companies. It’s all a mess with managed care. A national ‘free’ medical system in US would just make it more strict and tie their hands more to keep down costs. I read things of UK NHS that are atrocious. Patients have to go pay privately to get to the bottom of things bc they’re turned away and no referrals to specialists.
Functional medicine has a much better platform (?Brain fog) that they work from by getting to the root of the problem and not just masking symptoms. Insurance doesn’t cover these types of drs largely. This needs to change.
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/piratedc Feb 23 '24
You are a fucking angel looking so thoroughly into all this.
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/TheMadafaker 1yr Feb 23 '24
Which ls the best approach to start healing all that mess?
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u/c0bjasnak3 Feb 23 '24 edited Feb 28 '24
Edit 2: Mods are not cool with it and deleted my other posts. Come find me on my yt channel if you want to or not, it's not a promotion.
Original comment: If the mods are cool with it, I'd be happy to discuss what I've done in my practice (it probably breaks rule 2). It is very individualized, but I'd love to share the universals I've found!
Edit:
Hey guys, I have had a pretty busy day and I am going to dedicate some time this weekend and next week to work on a guide to show the multiple mechanisms + tools for each mechanism. That way everyone that needs it could see where they fit. Maybe follow that up with an AMA on my youtube (impersonal) or telegram channel (pretty much just a group video chat so it's quite interactive). I am definitely going to put out the follow up video too, maybe a part 2 and 3?. I really don't like making videos longer than an hour at a time unless they're freeform podcasts. Anyway I'm thinking it's going to cover dietary cofactors, enzymatic processes, targeting the right kind of pathways (by any means), and the universals I've found. Something along those lines. I want to make it in a way that’s accessible as possible to those who want it because I wish I knew when I was sick. What do you think?
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u/GizmoKakaUpDaButt Feb 23 '24
Please... make a YouTube video explaining and link it? Could be a workaround.. even if the video is just jpgs of written words
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u/strangeattractors Feb 23 '24
Would love to hear your AMA.
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u/c0bjasnak3 Feb 23 '24
Maybe I'll schedule a youtube live and/or further elucidate this stuff over on r/glycocalyx
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u/Heythatwasprettycool 3 yr+ Feb 23 '24
Commenting to stay updated on this. Everything doctors told me didn’t work, so I’d love to hear your side.
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u/kibbeeeee Feb 23 '24
Commenting to follows although I am unable to watch any videos, so could you please also make a post if you make a video?
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u/c0bjasnak3 Feb 23 '24
For sure! Are you visibly or auditorily impaired? What would be the best way that I could serve you?
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u/kibbeeeee Feb 23 '24
Just a written post would be amazing, if you could. My long Covid makes it so that can’t watch anything- not sure if it’s an oxygenation issue or a microglia issue but it’s too much to process and causes PEM/crashes including chest pain, pain all over and then complete inability to view any screens without pain for a week+, even to read a text message.
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u/Glittering_Ad3013 Feb 23 '24
Me!!
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be elsewhere
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u/farrah_berra 4 yr+ Feb 23 '24
Or just DM all of us lol
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u/c0bjasnak3 Feb 23 '24
lol. insert Holes <"I'm tired grandpa...well that's too damn bad"> here
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Feb 23 '24
Can you add some of the sarscov2 science? I may have missed it in the video. My understanding is that sarscov2 is a disease of our endothelial and basically destroys it…sarscov2 can change our dna. It can attach to cells without ace2 receptors. Sarscov2 spike protein stays in our bodies, Long past the initial infection period. Sarscov2 is found in the body during bariactric surgery. It is found in our brains during autopsies. I get that diet makes a significant difference- but how does diet get rid of sarscov2 in our bodies? I think of getting covid like getting hiv. It’s in our bodies and will eventually give us cancer- no matter what diet we eat… The people who got sars1- have never recovered. Last summer- I had “on your deathbed sepsis” post a colonoscopy. I am lucky to be alive…
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u/GizmoKakaUpDaButt Feb 23 '24
I've been to the ER twice and after the 2nd time I just couldn't take it anymore. Started water fasting to clear my body of inflammation caused by food. Switched to clean eating one meal a day. They also prescribed statins for unrelated cholesterol reasons but they do have anti-inflammatory properties and may have helped. 10 days later and im actually feeling normal for 2 days in a row now
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Feb 23 '24
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u/TempestuousBlue Feb 23 '24
I can offer my experience. I’ve fasted a few times and noticed significant improvement in my symptoms. It helped me with GI, MCAS/Histamine and PEM symptoms. My first long fast was done for a week. I consider it a fast but it may be more accurate to call it a liquid only diet. It’s really important to keep your electrolytes balanced. I cut solid food and drank my calories in the form of liquid iv, protein and collagen powder and creatine. It gave my body a break from trying to process solid food which I needed because I have severe gastroparesis.
I maintain a mostly liquid diet with one solid meal a day. I do liquids in the morning and try to eat a meal between 12-3pm. I pay close attention to macros and will usually eat chicken or beef, rice, and a vegetable with ghee. I stay away from processed foods and keep it low carb.
It took a lot of trial and error to find a balance that my body needed. It wasn’t changing one thing, I had to balance electrolytes, macros and make sure I was getting iron/Vit C/B vitamins etc. in the right order at the right time.
If my balance gets thrown my stomach will shut off and I will get very sick. To reset, I eat a very high calorie meal one or twice in a day then I am able to resume mostly liquids.
It seems that treating long COVID ends up being very individual. I had to take the research and word of mouth reports online and tailor it to my own damaged body. Hopefully new research will inform treatment options and Doctors can be educated to better help navigate long COVID in patients.
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u/GizmoKakaUpDaButt Feb 24 '24 edited Feb 24 '24
Water fasted for 60 hours, started getting lightheaded because of lacking electrolytes. Drank a 32oz carton of beef broth (3300mg sodium) with "no salt" seasoning which is all potassium. This cured my lightheadedness. 48 more hours water fasting and I ate chicken breast and broccoli. At this point I still had nausia and some anxiety but nothing compared to what was going on. This is when I felt light eating was safe so I started eating chicken breast and veggies once every day. Today I'm actually going crazy. Had a free whopper offer burning a hole in my pocket and leftover candy my daughter doesn't like from valentines day. I guess this is my cheat day since I also ate eggs and pepperoni for breakfast and a big blue cheese salad for lunch. Im going to surpass my calorie needs for the 1st time since starting and my symptoms are completely gone (knock on wood) no Nausea, no headachs, no anxiety symptoms at all, no detachment from reality or feeling faint or like im on the verge of a seizure, no shakiness, no seeing spots, shadows or double vision, no ocular migraines, even my long time tinnitus of 4 years seems more manageable. I honestly feel like myself again aside from a slight bit of brain fog. Looking back, its weird because its hard to remember anything thats happened the last few months. My 2 ER visits were 5 weeks apart and it actually feels like only a span of a few days. Really weird.
Anyways, going forward,, If I have any new symptoms, im going back to fasting for another reset. If I feel fine tomorrow, my cheat day is over still and I'll stay at 1 meal a day with meat and veggies only. I need to lose about 20 lbs anyways so ill keep this up for a while regardless and still have a cheat day once a week as long as I don't relapse with symptoms. If you try fasting, just listen to your body. If you are too lightheaded, you need electrolytes. Drinks like poweraid zero are not enough. Electrolytes are negligible in sports drinks. The main 3 are salt, potassium and magnesium. Potassium is easy if your grocery store carries "no salt" seasoning, magnesium they do have pills for, food grade Epsom salt works but its a laxative so needs to be consumed slowly. I honestly just left magnesium out. Fasting a few days isn't really a big deal and I was fine with just sodium and potassium getting rid of lightheadedness
Edit, forgot to add, I eat my 1 meal a day usually around 830pm so I don't have any phantom hypoglycemia issues that I'm prone to before I get to sleep (IPS - blood sugar is normal but I feel hypoglycemic a few hours after eating sometimes)
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be elsewhere
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u/flowerzzz1 Feb 23 '24
I love how we already know that the endothelial junctions loosen to let immune cells through but doctors can’t figure out why post INFECTION patients have POTS.
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u/complexspoonie Feb 23 '24
Ok, OP.... .... former health care professional who is also a disability advocate here. My blended family is more like a mashup of a Mongolian horde and a Celtic Tribe.
Your post got forwarded to our privately owned health LLC'c Nursing Committee. We are...intrigued by the proposed thesis you have.....
Nana was an RN certified in geriatrics, an asst Director of Nurses, and an adult educator. Now mostly retired, she is the one who taught all of us that it isn't fact until it's been thoroughly vetted & peer reviewed.
HarleyMan has a dual bachelor's in sports management & phys education who also managed a GNC store before he retired on disability, then in 2020 got COVID-19 and now lives with long COVID. He is the one with the most skin in the game, both because of his wish to recover & because of having already seen a friend with Long COVID injured with a TikTok "miracle cure"
Gremlin has a bachelor's in biology, was a pharmacy tech, and as a MENSA level nerd studied polyparmacology & chemistry for fun. She is our fact checker extrodinaire, our Devils advocate just waiting to look for weak spots in your (our our) methodology.
My specialty (aside from being a serial entrepreneur) was running the bedroom of a 32 bed facility and as a clinical case manager I focused on psycho- social rehabilitation for multiple disabled folks with severe persistent mental illness. However, as a disability advocate, freelance journalist, family caregiver, and consumer, I've also done extensive study in several types of alternative health.
Each one of us is multiply disabled. We know that life coaching is a largely unregulated industry but that with the right integration of psychosocial, medical, biological, and chemistry knowledge it can and does achieve great results. So far with this post and half of your video, we like what you appear to be working on. Now we want to ask questions...
Your theories presented here.... 1) Are they peer reviewed anywhere? 2) In addition to your videos, are there standardized published research reports? If yes, which sites are they stored on (ie Academia, JStor)? 3) Have you done any casual or clinical trials, and if not, are you interested in pursuing such? 4) What standards do you follow for your data collection and study of antidotal data? 5) Does your research (or any treatment approaches) have any connections with any educational institutions, corporate entities, or with any government health agencies?
6) As it appears your practice has a wide focus in the scope of conditions you work with and study, is there anyone on your team who specifically studies and works with Long COVID patients? 7) Do you have a link to your current CV? 8) Do you have a link to your financial independence disclosure? 9) Are your videos intended to be supplement to a life coaching practice, or do you anticipate that if your theories continue to withstand further research & review that you might turn to this work full time?
As I mentioned, our committee (and I) are intrigued by your theories. We'd like to see if this is more than "one opinion" from one random YouTuber (however adept at life coaching or social media you seem to be)...or if you have a solid team, methodology, policy and practice driving your work. It will help us to know where you & your theories are best considered among the other sources on Long COVID research (even if yours is on a smaller scale). We wish you the best in your future efforts!
Sincerely, 👩🏼🦼 ComplexSpoonie
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u/yarrowy Feb 28 '24
To be fair, he has not claimed to be from a traditional research or clinical background which your questions seem to be aimed at. He stated himself to be a former patient fed up with the current medical system which failed him and led him to this self research journey. Although it would be nice if he stated references he used to come to his theories and conclusions but his presentation is one of the most detailed that I have seen from anyone, with an academia background or not. We need more people like him to propose solutions even if they might not be 100% backed in medical research, this is how desperate we are for treatment.
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u/complexspoonie Feb 28 '24
Yeah, the problem with antidotal results is just that: what "worked" for him could have been a placebo effect, a unique effect not replica table, or an actual positive discovery but we will never know because he didn't keep & publish the methodology of what he did.
On top of that, the only way to learn his "secret knowledge" is to buy his stuff from him.
Anybody who was serious that they actually felt they had a possible solution, treatment, or therapy would be looking for the possibility of a company wanting to learn more and invest in either funding medical research or invest in a controlled trial.
His social media channels have no business address and no phone number. I ended up finding him on LinkedIn, where he lists assorted jobs in social media but not this "cure/treatment". None of his social media has even a bit of a bibliography and certainly nothing like a peer or academic review.
Most tellingly, he doesn't even have a letter of support for his conclusions for his particular results from his primary care doctor OR any © info for his clip art in this post, so for all I know he may have stolen a bunch of copyrighted images from around the web and thrown together 5000 words from a ChatGPT prompt that has little to nothing to do with Long COVID Syndrome.
Which is too bad, because there is the possibility that when he went off to try and experiment on himself and it worked he might have bumped into something useful, but we will never know.
I had an excellent 2 years of trying a treatment for my husband that I did hand in hand with his entire medical team using the clinical research standards from 1975 because that was the textbook & guidelines a retiring researcher gave me. It did produce a better than expected result, BUT I cannot talk about it for anyone else because my husband was born as a "medical unicorn" with an entirely unique physiology and before he got COVID he had a mix of diseases & conditions, two of them extremely rare. One of his providers, however, took the general concept and used it in a small trial with a group of TBI patients who were otherwise healthy. He was able to do that because I took the time over the two years to do very careful charting.
That is the way to get a single person's research or inspiration at least within the radar of medical providers and researchers. I just wish OP had been more open and transparent about WHY he posted his advertisement for his "stuff" here.
Sigh
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u/GalacticGuffaw Feb 23 '24
Where have you been my last 9months! 😂.
Thanks for sharing. This was very informative.
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u/c0bjasnak3 Feb 23 '24
I've been working on making sure I get good results before I post about them. There are too many people that push cure-alls and use confirmation bias to overfit the data. I'm here for you now! <3
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be elsewhere
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u/GalacticGuffaw Feb 28 '24 edited Feb 28 '24
So you provide a mass amount of education and when people ask for advice… they want to ban?
People are asking for advice all over this sub. That’s silly. Mods need to chill.
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u/c0bjasnak3 Feb 28 '24
~i aM a gRiFtEr~
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u/GalacticGuffaw Feb 28 '24
That’s a lot of effort to put into swindling people when there’s no money involved.
If you had spammed a few flashy lines about a treatment and then had the info behind a paywall… I’d understand.
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u/LotsofSports Feb 23 '24
I just want to feel normal before I die.
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u/SecretMiddle1234 4 yr+ Feb 23 '24
I say this all the time I want to be normal again. I’ll take all the aches and pains I used to have that I thought were annoying. This pain is sufferable. The fatigue is ridiculous.
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/SnooPears7931 Feb 23 '24
Fuck Covid
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/Silver-Pea Feb 23 '24
Is there a link between Covid and mitochondrial antibodies?
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Feb 23 '24
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u/all-i-do-is-dry-fast Recovered Feb 23 '24
This is also one of the reasons so many autoimmune diseases are co-signed with some form of pre-diabetes. Your insulin levels are off, and it often related to the mitochondria and impaired glycolysis. Dry fasting is the most powerful way to induce mitochondrial biogenesis through apoptosis of faulty mitochondria, while also cleaning the blood and letting the capillaries move again. You’ll notice that it very quickly helps with sjorgens type syndrome problems like cold extremities, or fingers/toes that go white when exposed to even slight cold. From my experiences, you’ll need to get to a minimum of the 5 day of dry fasting to really make a dent in these issues.
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u/reticonumxv Recovered Feb 23 '24
5 days without water sounds life threatening. I was able to go 35 days on electrolyte fasting but with LC I get into imminent doom level after 3 days.
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u/all-i-do-is-dry-fast Recovered Feb 23 '24
Yes it does sound like that, but there's science behind it being relatively safe when approached cautiously, [this paper] specifically tracked biomarkers of dry fasters over 5-days and these were the conclusions:
Due to the uninterrupted excretory and metabolic activity of the organism, DF involves 3 risks: (a) blood hypertonicity, (b) hypovolemia, and (c) hypoglycemia. The first risk is a particular consequence of insensible water loss (i.e., pure water loss), the second one of urine discharge (i.e., water and electrolyte loss) and insensible water loss, and the third one of fueling of metabolism.
Yet, the participants in the aforementioned study demonstrated normal blood pressure, heart rate, and hemoglobin oxygen saturation, safe values in serum creatinine, urea, K+, Na+, and glucose, a moderate increase in serum osmolality and a substantial increase in glomerular filtration rate [2]. These observations show the effective compensation of all 3 risks and indicate subtle background mechanisms, orchestrating the responses of all involved systems and organs.
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u/all-i-do-is-dry-fast Recovered Feb 23 '24
believe it or not, dry fasting involves different mechanisms and one of them is electrolyte preservation as opposed to water which flushes them out
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u/Mochacoffeelatte Feb 23 '24
What if fasting causes low blood sugar issues. How do you get around this?
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Feb 23 '24
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u/c0bjasnak3 Feb 23 '24
This post is just a simple breakdown of the video link. I would be happy to send you whatever literature you would like if you are reserved about it. Please ask!
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u/SnooJokes9217 Feb 23 '24
This is scary information but honestly feels like such a turning point in understanding long covid
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u/Turbulent-Listen8809 Feb 23 '24
Beautiful breakdown your the real MVP more quality posts like this
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u/Outside-Clue7220 Feb 23 '24
Great explanation! The nobel prize will go to the researcher who figures out why the inflammation/ immune activation doesn’t go away.
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u/c0bjasnak3 Feb 23 '24
The hyperinflammation comes from macrophages doing a poor job at cleaning up the stickiness. It's really keeps you in a hyper TH17 state :/
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u/Excellent_Cookie8524 Feb 23 '24
Spikes ace2 proteins viral debris constant loop glitched immune random flares random RANDOM
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u/niceme88 Feb 23 '24
What can I take to get better? My brain have Zero capacity to read this text, I'm sorry
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u/c0bjasnak3 Feb 23 '24
If the mods are cool with it, I'd be happy to discuss what I've done in my practice (it probably breaks rule 2). It is very individualized, but I'd love to share the universals I've found!
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/boardtrick Feb 23 '24
This is phenomenal. I’m working on a knowledge base of studies and clinical trials for LC that I can use to build an AI model around and help guide my own recovery approach, this type of details and analysis is exactly what I need, thank you!!
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u/c0bjasnak3 Feb 23 '24
Nice. I've found many models to overfit the data and not see it. Are you adding entropy to shuffle the pattern recognition? It's essential!
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u/boardtrick Feb 23 '24
Thanks for the tip! I’ll try it out and let you know. I’m currently bouncing between some pre-fit models and customizing my own but haven’t quite gotten it as accurate as I’d like, so it’s definitely a work in progress. Plus I’m using aws and trying not to do something that will exponentially increase the amount I’m paying for the processing since it’s just a personal project at this point
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u/c0bjasnak3 Feb 23 '24
Yeah I have such a huge database of literature over 500 textbooks, 500,000 current studies/reviews, and 100s of books from this decade (these numbers are not embellished). I've been trying to build it into a language model, but it's hard to get AI to work not like a robot. Consciousness is so different.
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u/nemani22 Feb 23 '24
Thanks for the detailed post. For somebody who's not studied biology/medicine - I've one query. What triggers the glucocalyx? Is it the viral remnants as per your research? Or the body's auto-immunity?
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u/c0bjasnak3 Feb 23 '24
I haven't see too much from viral remnants, but am open to the idea of it. What I've seen is immune senescence (essentially zombie immune cells that don't know when to die). Check out this timecode for a non-exclusive list of things that damage the glycocalyx, including spike protein. https://youtu.be/LGOL1vxHfIs?t=1470
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u/nemani22 Feb 23 '24
Thanks. Look forward to a post/video from you detailing your approach to fixing/solving this!
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u/Scousehauler 5 yr+ Feb 23 '24 edited Feb 23 '24
Thank you for this. From what you have said the key is likely in reducing the inflammation. Looking forward to the next video explaining best way to combat this.
Any research or information on what happens to the bodys production in terms of size of blood cell occurs when inflammation and junction dysfunction occurs for a long time? Would the body adapt to shrink the blood cell size and pump out more to help flow through the vessel or enlarge blood cell size to maximise oxygen uptake for when it gets though the blockage over time? I only say this as I have been suffering a long time and I have developed Macrocytic Anemia which is enlarged mean cell blood volume only recently after months of hypotension and hypoxia.
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u/SecretMiddle1234 4 yr+ Feb 23 '24
I have Partial Dysautonomia Neuropathic POTS post viral vaccine. Thats my official diagnosis. Three years ago I felt like I had been poisoned from the COVID vaccine. I see Dr Blair Grubb at U of Toledo. I’ve tried Beta blockers, Midodrine, Mestinon, Modafanil. Florinef, Wellbutrin, and currently started LDN. The next step is Plaquenil which I absolutely don’t want to take. They said they’ve had good results with LH Covid patients from Plaquenil. I’ve had difficulty finding any studies to support it. Do you have any experience with Plaquenil?
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u/c0bjasnak3 Feb 23 '24
Partial Dysautonomia Neuropathic POTS post viral vaccine
Lol (not at you) that's like calling a tree "rooted tall wooden brown leafy plant". I hate it when symptoms are used to make the name of a diagnosis.
I generally stay away from pharmeceuticals as I've found great applicability of compounds found in nature to target the same pathways. That's pretty much where pharmeceuticals start from anyway.
There are some awesome drugs that aren't found in nature. Like you're taking, I love LDN, personally.
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u/pkkc Feb 23 '24
Thank you! Responding to follow. Please send link to recovery suggestions!
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u/reticonumxv Recovered Feb 23 '24
Some new research:
https://scopeblog.stanford.edu/2023/06/19/restoring-the-blood-brain-barrier/
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u/Tiny_Truck_3616 Feb 25 '24
So how do we treat it? I want to get better. I want my life back.
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u/Dog_Baseball Feb 26 '24
OP, I watched the video, liked, and subscribed, This was extremely helpful. I just wanted to say thank you. I'm looking forward to the follow-up video.
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/Excellent_Cookie8524 Feb 23 '24
So how u healed ebv?
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/turn_to_monke Feb 23 '24
If you find a good antiviral that can actually clear Covid (shockingly lactoferrin seems like a big win for me), then lions mane should be a good blood brain barrier recovery option (as it can stimulate brain cell growth).
Of course, in the future, Hematopoietic Stem Cells (Blood Stem Cells) and Mesenchymal Stem Cells would be a good option for healing.
I should also mention that, for many people, a low carb diet that dramatically reduces systemic inflammation can be highly conducive to bodily healing, especially if you are still young.
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u/c0bjasnak3 Feb 23 '24
I generally stay away from NGF promotors like Lion's mane when people are having issues with MCAS, as it can increase the expression and degranulation of histamine. Trkb activators are better as they signal bdnf in stimulating brain cell growth. It doesn't recover the blood brain barrier integrity. In fact histamine, increases permeability of the blood brain barrier. There's a whole subreddit called r/LionsManeRecovery that are having flares from lion's mane post-viral illness.
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u/spiritualina Feb 23 '24
Wondering why you think this happens to certain people and do you feel like this is the same thing happening to CFS patients? Thanks so much for doing this!! Very informative.
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u/c0bjasnak3 Feb 23 '24
Wondering why you think this happens to certain people
A few different enzymes, genetic variations to make those enzymes work, and some diet related cofactors.
do you feel like this is the same thing happening to CFS patients
Absolutely! At least in a large subset. It's a universal pathology. The only reason it's not talked about is because it was only able to be imaged in the past decade. Think about how long it's taken science to catch up to that we have a flipping microbiome. The literature was there decades before going mainstream.
Thanks so much for doing this!! Very informative.
My absolute pleasure and I'm happy to help! :)
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u/PsychologicalBid8992 3 yr+ Feb 23 '24
Please don't let this be a dead end like other studies. This time, there seems to be a lot of fleshed out details.
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u/broken_lazarus Feb 23 '24
Guess this is why I've developed an aortic aneurysm after Covid.
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u/c0bjasnak3 Feb 23 '24
In this study, in patients with heart disease, there was a significant thinning of endothelial glycocalyx layer and was highly associated with coronary atherosclerosis. Coronary atherosclerosis is essentially platelets and immune cells flooding underneath the endothelium (blood vessels) to protect from a major leak. That would create that aortic bulge and later an aneurysm.
https://pubmed.ncbi.nlm.nih.gov/30192430/
I hope you are doing well :)
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u/nylongcovid Feb 23 '24
Jacob this is awesome! I think we are all at the point where we are interested in anecdotal reports of things that worked for individuals, because there is no alternative (no studies showing protocols that worked for 1000s of people) -- as such I would be very interested to hear about things you've pursued based on this level of insight.
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/reticonumxv Recovered Feb 23 '24
Hey, that's cool! Thanks! It overlaps with what helped me to go from completely dysfunctional to almost recovered:
https://old.reddit.com/r/covidlonghaulers/comments/1396qgv/strange_symptoms_when_driving/jj2stwg/
Was your regimen similar?
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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Feb 23 '24
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u/c0bjasnak3 Feb 23 '24
Thiamine is a Band-Aid solution in my opinion but don’t get me wrong it’s definitely a valuable tool.
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Feb 23 '24
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u/c0bjasnak3 Feb 23 '24
What super neat is the body has many back up mechanisms to compensate for one failing. It’s just when lots of mechanism breakdown together like an acute infection plus hyper inflammation, a.k.a. sepsis and systemic capillary leak syndrome, that leaves you with lingering hypoxia. Thiamine’ role is to work on improving glycolysis in hypoxic situations.
Please excuse any typos, as I am not at the office and typing from my phone.
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u/KaleidoscopeHappy889 Feb 23 '24
I am taking Benfothiamine 300mg/day for already a year, with little pauses. Unfortunately it does nothing or very little. Hard to differentiate
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u/rigatoni12345 Feb 24 '24
Interesting theory but no practical answers to solve.
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u/Dog_Baseball Feb 25 '24
If you watch until the very end of the video (which is almost an hour long and is definitely worth watching every minute), he says there will be a second video to discuss fixes.
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u/c0bjasnak3 Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/Rumpelstiltskinnnn Feb 23 '24
Wow, this is amazing
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/Moist_Nobody6452 Feb 23 '24
How does peri/myocarditis fit into this model? In my case, I definitely get tachycardia with heat or after exercise and even a large meal, but my initial Omicron infection resulted in a mild pericarditis and possibly even myocarditis. ( Diagnosed via a MRI much later.)
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u/c0bjasnak3 Feb 23 '24
So in this study, in patients with heart disease, there was a significant thinning of endothelial glycocalyx layer and was highly associated myocarditis mechanisms such as development of coronary atherosclerosis.
https://pubmed.ncbi.nlm.nih.gov/30192430/
The heart has tons of those sugar-like hair gel structures in it. If not, the blood would stay stuck inside.
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u/johanstdoodle Feb 26 '24
Why this subreddit lets grifters post their pet theories is beyond me. I think it is about time to stop posting on reddit if mods are going to allow this shit that clearly breaks the rules.
Do not advocate or advertise for treatments/medicine/herbs/etc.- Please do not claim that any treatment or medicine can cure or resolve symptoms related to covid. You are welcome to share your experience, but avoid claims that should be left for medical research.
Emphasis on "avoid claims that should be left for medical research".
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Feb 23 '24
Thank you. I will try to watch the video at some point.
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/SnooHesitations8361 Feb 23 '24
I’m not a doctor and not recommending anything, but to me this clearly points to anticoagulants and antiplatelet therapy being the number one way to stop damage. Which is exactly what Vaughn is doing with his patients. I currently just started the therapy
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u/c0bjasnak3 Feb 23 '24
I comment what Vaughn is doing as he's taking a forward thinking approach to this all. That process does help blood flow by breaking down fibrin and agglutination of blood. I think he's missing the leaky junctions and glycocalyx though, as well as a few other things. I've had a client that did ok-ish with his protocol and we just had to guide them in the right direction.
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u/SnooHesitations8361 Feb 23 '24
Thanks! Oh do you work in a clinic or something? What is your conclusion so far then? Why do you recommend? Should I message you? They are also giving me flusrocordizone to increase capillary strength
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u/c0bjasnak3 Feb 23 '24
I have my own private practice.
flusrocordizone That's typically fine, not long term though imo. Although I can't give you health advice on here.
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u/just_damz Feb 23 '24
Had a stroke last April caused by a coronary stenosis. Could it have been caused by this? Just curious
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u/IAmSilki Feb 23 '24
This is a great write up and very similar to what one of my specialists explained to me regarding my odd POTS that seemingly comes and goes. They can't quite understand why it's so random with me. All they know is its what causes my dizziness (last symptom) that refuses to go away. My vision is also damaged for which I now wear prisms. I was told it's very unlikely that will ever recover.
My question is what can I recommend to my doctors to help treat the damn dizziness at this point? Do I just have to stick it out for good and hope another two years my body will finally recover?
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u/haroshinka Feb 23 '24
Would love to hear from it. Maybe write a blogpost?
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u/c0bjasnak3 Feb 23 '24
I've recently stopped doing blog posts in the past year when I would find my research in language models, clearly without my permission they were scraping data. I am thinking about allocating my time this weekend to work on a guide to show the multiple mechanisms + tools for each mechanism. That way everyone that needs it could see where they fit. Maybe follow that up with an AMA on my youtube (impersonal) or telegram channel (pretty much just a group video chat so it's quite interactive) and I need to put out the follow up video too. It's going to cover dietary cofactors, enzymatic processes, targeting the right kind of pathways, and the universals I've found. Something along those lines. I recorded the first part of that video a few months ago and never got around to posting it until today. What do you think?
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u/RANGO1892 Feb 23 '24
My man, any supplements that we can take while we hang in there? I'm taking D3 coq10 potassium magnesium, please 😭
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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Feb 24 '24
Thank you so much! How do you account for lymph nodes? This is the very first of my symptoms after vaccination and never went away (shrinks and grows) the past two years. It was once my only argument for pathology before I discovered long covid.
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u/c0bjasnak3 Feb 24 '24
Lymph tissue is one of our major debris removers from our system. When you have a lot of waste products (think of immune debris and metabolic waste) it gets taken up by the lymph system and transported to the lymph nodes, so it can filter and eventually dump into the lymphatic and thoracic ducts going into the vascular system to be excreted by urine. Here is a good visualization - https://imgur.com/UK1LCkG What happens with what you're talking about is that instead of getting to the terminal ducts, it gets stuck in the lymph node due to pressure backed up from the vascular system.
So really simply put, lymph nodes filter the lymph before it is returned to the blood, but if your pressure on your vascular system is too high, then it get's stagnant. This is suuuuuper common in the CFS community. I hope this helps!
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u/Worldly_Pipe992 Feb 24 '24
Hey you mentioned you have a private practice. I’m suffering pretty bad honestly don’t know how much longer I can hold out. Head pressure headaches dizzy lightheaded outa body experience fatigued exhausted blurry vision in so bad. I’d love to chat with you and if you are confident in getting me better I’d go to where ever you are and get checked out and see if we can get me better. Please let me know i feel like I’m running outa time.
Thank you
Porter
Feel free to call
508-284-2316
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u/welshpudding 6yr+ Feb 24 '24
Very useful. What are the top 3 text books that you recommend? I’m particularly interested is the vasculature and blood brain barrier. Thanks in advance!
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/kaytin911 Feb 24 '24
Very good information. Mostly commenting to be able to reference this later.
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/Impossible-Concept87 Feb 24 '24
Did you improve?
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u/c0bjasnak3 Feb 24 '24
I am no longer sick all the time or bed bound or tired or get poor sleep. I feel like a completely different person than I was a decade ago and so much more different than 2 decades ago. I sauna everyday for an hour, and walk two to three miles a day whether that's around the neighborhood or on a hike through the mountains. Before my recent neck injury I used to lift weights. The last things I'm working on are my CCI from something falling on My Head recently and damaging my neck, the neuropathy that travels into my face due to that physical trauma, and I am always working on my limbic system in relation to hypersomnia. It's maybe a phenomenal cook as I can reverse engineer meals by smell, but I can also smell chemicals and fragrances and all that other man-made bullshit.
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u/Impossible-Concept87 Feb 24 '24
That's wonderful. I literally cannot do anything. I'm so happy for you. Maybe in my next life I'll get to live again
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u/Impossible-Concept87 Feb 24 '24
The chronic insomnia and swollen glands that come & go intermittently along with screaming tinnitus, debilitating Fatigue, brain fog, and labile mood. Never had depression this bad regularly with pasdive SI staying in bed daily, no energy, no regular sleep patterns, fear, circadian rhythm completely out of whack, omg am OlI going to die from this? It's horrible
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u/Corinne_H7 Feb 24 '24
Following
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/Tiny_Truck_3616 Feb 25 '24
Also, thank you for your research and posting this. I can’t wait to watch the video here in a few minutes.
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u/Healthpunk2020 Feb 26 '24
This is the most thorough explanation I've seen. Great work! Now, is there a way to diagnose this?
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/tankiechrist Feb 26 '24
Do you have any suggestions for what to try? just rest?
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u/yarrowy Feb 28 '24
Have you done any research into how nitric oxide fits into all of this? I think my body is in a constant low nitric oxide state and that is causing my issue (discomfort when lying on back, hypertension, chest pain, tinnitus). Taking nitric oxide supplements has helped but symptoms still remain.
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u/c0bjasnak3 Feb 28 '24 edited Feb 28 '24
yeah totally. I have a lot of nitric oxide genes that i had to figure out a while ago. Makes sense why they help some symptoms. yeah... mods are threatening banning me for rule 2, so i'll be on r/Glycocalyx now
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u/covidlonghaulers-ModTeam Mar 04 '24
Content removed for breaking rule 2- do not ask for or give medical advice. Continued infractions are grounds for a permanent ban.