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I'm gonna start an ongoing thread on #COVID19, prevention, treatment, and long-haul syndrome, from my experience but also as much reading and patient outreach as possible. I hope it is helpful to someone. Need to dump my brain somewhere. #LongCovid #longhaulers
My experience might be an example to avoid, but truthfully, it should've been much worse for me, with my pre-existing conditions. And I've figured out how to manage long-haul. People can also learn from my mistakes. Not a doctor, but that's not necessarily a point against me.
These supplements are the most important. Everyone should take. If you do mutual aid, please distribute the most important ones.
Vitamin C - You should take up to 4k or more, to tolerance.
Zinc - 30mg
D3 - 2-5k
Quercetin - 1-2k
Vitamin C - You should take up to 4k or more, to tolerance.
Zinc - 30mg
D3 - 2-5k
Quercetin - 1-2k
Please try not to buy into "vitamins/supplements don't matter" propaganda. It's not true at all. Google scholar is your friend if you have doubts.
Also really helpful:
Magnesium (prefer citrate) - 200-whatever you can tolerate
Baby aspirin + pepcid if you are exposed
Also really helpful:
Magnesium (prefer citrate) - 200-whatever you can tolerate
Baby aspirin + pepcid if you are exposed
Anyone who is exposed should be on a baby aspirin + pepcid or another mast cell stabilizer (cromolyn, allergy drugs, etc.) immediately upon exposure with mass Vitamin C. I also recommend Yin Chao at early signs of weakness. Take a LOT and often for a few days.
I made an error early on not getting tested/treatment bc my doctor led me to believe I was reacting to a shot I got in her office. Treating *as Covid* means the above, possibly steroids if you are having worse symptoms, and resting all day, every day, like you're not a person.
I cannot overestimate the importance of rest, and it's a different kind of rest than you are used to, even w/ a flu. I hear this all the time from patients. They recover and then they have a relapse that is worse, with new symptoms, bc they thought they could be active again.
If there's a chance that some advocacy can get you out of work, but you don't have positive Covid test results, work on a written narrative of why you suspect Covid, including exposure, symptoms, and/or other blood work. (Most of us show something different.)
They don't know why people are getting relapses with suddenly new symptoms that they didn't have before (happened to me with breathing after 4 months) but I suspect it has in part to do with co-infections. Once immunity drops, we are open to everything.
Something I forgot to mention above is food/water. If you suspect you have Covid, you may have no appetite/food may taste terrible. Excuse the jewish mother in me, but eat on schedule, a lot, and tons of anti-inflammatory foods, veggies, fruits. Spicy is good too. Eat/drink a lot
Forgot to add B vitamins are highly recommended. I don't tolerate many of them. Be careful, bc some of us have a genetic mutation where folic acid makes us worse. If you get to a doctor, ask for the MTHFR mutation test.
There is evidence that older and chronically ill people get Covid worse but healthy people get it longer, and that I believe is related to activity. you may have to adjust for months. I have seen story after story (and experienced) one day of exercise setting ppl back weeks.
Things you are likely to experience with Covid that may scare you but are signs of inflammation: brain/memory lapses, pain/numbness in hands and feet (even new carpel tunnel), difficulty eating, low-grade fevers/chills, extreme fatigue (like you have to sleep all day)....
Those are normal, and I do not believe cause alone for alarm, though they may last for months. See a doctor, by all means, if you think it's necessary. But I'm saying this to reassure you that this is how inflammation presents itself. Anything more serious needs intervention.
Oh add to that list hair loss. Even young patients are reporting losing massive amounts of hair. It should grow back.
You may also experience new allergies or sensitivities, widely reported online and also inflammation acting up. Doesn't mean it's for forever.
Just my view, but this "aging ten years" language isn't helpful without caveats. We don't know that this is permanent. Being chronically ill can age a lot in the short-term. https://twitter.com/ReutersScience/status/1321153048236957697?s=20
The recovery time for SARS 1 was 6 months - 2 years so long-haul is the proper phrase. I'm seeing people with preexisting conditions handle the emotional changes a lot more easily....
I'm also seeing patients gaslit by doctors who regard their obvious anxiety/depression brought on by Covid as the only thing wrong with them. My advice is to either hide your emotions from your doctors or make it seem like you have them in check. Sorry. And therapy/support.
I hope that is helpful to someone or prepares you for what is to come, and I'll add as I get more information/thoughts. I'd say don't worry about testing positive or antibody tests. It's not required to diagnose Covid. It's the exposure + symptoms that matter.
If you catch Covid and recover quickly or never have symptoms, this isn't about or for you. Congrats on winning the lottery!
Added. I am new to zinc so here's important info about making sure you don't end up copper deficient. https://twitter.com/sleepyknave/status/1321187137048498180?s=20
Lemme correct above: I don’t think Zinc Needs to be on the “everyone should take” list at 30mg. I think it’s on the “if you feel weak or are exposed” list
An interesting theory being discussed in the long haulers group today is if Covid 19 stays alive in our bodies and moves through it. That is not unlike Chicken Pox, lying dormant and reappearing as shingles...
It made me think of how Traditional Chinese Med teaches the concept of “chasing the dragon” out of the body, which will make sense to anyone with chronic pain or illness, how it seems move to different places when you are healing and increasingly rapidly...
In terms of pain, I think it’s because a lot of the body is screwed up but pain sensors draw attention to everything at once. So what feels like pain “moving” is actually pain in other places getting attention at last. Not sure about the virus.
*sorry pain sensors don’t draw attention to everything at once
I forgot to add two supplements to above if you have or suspect you have Covid 19: L lysine is an antiviral. Used on cold sores. And digestive enzymes help tho I need to research more why. A TCM doc prescribed and it’s helped a lot on my latest relapse (brought on by exercise)
If you can afford it, a TCM doctor will prolly help more with Covid than a western doc. Western docs are lost, unless you have clear blood markers. And even then. The Chinese have been on this for centuries
RE below: I think btw it is also ok to lie if you are sick for months and trying to survive. My Covid test was negative (5 wks out) and if I had lied, I might have been able to hold onto housing. (Later had positive antibodies) https://twitter.com/jewstein3000/status/1321179390454108161?s=21 https://twitter.com/jewstein3000/status/1321179390454108161
Here is research that long haul Covid can become an autoimmune illness, with antibodies attacking the body. Oooh boy. Really horrible that this is behind a paywall. https://www.nytimes.com/2020/10/27/health/covid-antibodies-autoimmunity.html?referringSource=articleShare
On the plus side, there are tests and treatments for autoimmune dysfunction. Like hydroxychloroquine. The article isn’t as scary as it sounds. I mean, RA and Lupus aren’t ideal but they’re knowable
Unfortunately, we have to see so many different types of specialists with long haul Covid to even get testing to determine what’s wrong. I saw an immunologist who said fevers for months was out of his wheelhouse (
) and referred me to an endocrinologist.
) and referred me to an endocrinologist.
Someone sent me this which provides evidence that the virus stays alive in us, since this woman's was reactivated by medication. The day I caught it, I was given an immunosuppressant shot. I don't believe I had it before, but it makes me wonder. https://jhoonline.biomedcentral.com/articles/10.1186/s13045-020-00968-1
I've heard about positives after negatives with some other patients who don't believe they were reinfected. I think a lot of negative tests are just bc the virus moved out of the nasal cavities. Mine never really made it to my lungs, except months later a little.
I realized I didn’t say anything about cykotine storm in this thread. That’s the mechanism by which Covid becomes deadly. Cykotines are produced by mast cells which are used to heal wounds.... https://www.frontiersin.org/articles/10.3389/fimmu.2020.01446/full#h5
Mast cell overproduction or overreaction is understood to be a cause of a lot of inflammatory disease. This matters bc it explains why Pepcid is one common and effective Covid prevention/treatment since it stabilizes them. So does Quercetin, antihistimines, C, aspirin etc
I have a few tests by which I judge Doctor capacity to treat me and one is what they know about mast cells. You can put mast cells and Covid in google scholar and get a zillion results so there’s no excuse for docs to be ill informed.
Also in sharing this stuff, I’m getting DMs trying to convince me Covid is just a flu and and a tool of social oppression. Crazy talk right?
I have to wonder how much of this kind of thinking though undergirds the liberal school re-opening advocates because they almost never talk about Covid’s dangers.
Anyway that guy’s idiotic message is like a pile of messages any of us get when we share about illness, convicing us that we’re doing something wrong.
I had a little productive back-and-forth with someone who said that exercise was improving his Covid response, particularly breathing. And I thought that myself as well, after my first recovery. HOWEVER.......
What most long-haulers report is that they thought they were better and exertion caused a massive relapse. For me, I was walking everyday just fine and then boom, another month back in bed, with fevers, etc. Very common. I think movement promotes healing but the trick here....
.... is Covid is putting tens of thousands of people into myalgic encephalomyelitis, known popularly as chronic fatigue, but a complex illness. I thought I knew fatigue before, i had no idea. The trigger is exertion. It's been new for me to pace myself. https://www.meaction.net/learn/people-with-me/?gclid=CjwKCAjw0On8BRAgEiwAincsHCd15BUxOFkbTx3CKaZt3VFtJc7A4q_9SI3lebi664MryBUwuk9KbBoCe2cQAvD_BwE
