Have you been cured of POST COVID?

Posted by mccoydj1 @mccoydj1, Sep 28, 2023

I would love to hear from folks that have been cured from Post COVID. What were your symptoms.... what things helped you improve? what things made it worse for you?

I ask because I am currently on a recovery journey - would love to understand what you've done

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

@mary1627

Can you send me your protocol also?

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Hi Mary, I'm happy to send it to a few people and hope to get feedback from others, so that I can refine the wording as needed, answer any questions and share it more widely.

What are your worst symptoms ?

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@welchllb

Hi Fellow Long Haulers - I am excited to report that I have finally been diagnosed with borderline POTS (rise of HR to 30 beats during a Tilt Table Test). A POTS diagnosis is defined as a HR of over 30 beats during the test. Since I am borderline, my Neurologist decided to treat me for POTS. I have been on "Pyridostigmine (30 mg/2x/day) which enhances sympathetic ganglionic transmission and is given at doses of 30 to 60 mg up to three times daily". I have tons of energy and none of my COVID symptoms. I call it a miracle after 3 miserable years of SOB, dizziness, lack of balance, leaden legs, PEM, blurriness, etc. About 1.5 years ago, a Cardiologist told me I wasn't a candidate for a Tilt Table Test. I could be angry but am now, just thankful. There are side effects to Pyridostigmine but I'll tolerate them given the other positives. I still have lots to learn!!! Feel free to reach out if any of you have questions. You might want to read the following article which came to me the day after I was diagnosed - weird coincidence!! POTS/PEM and long Covid
file:///C:/Users/Lucy/Documents/National%20Geo%20-%20What%20is%20POTS_%20Covid.pdf

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I did my own tilt tests and 29 beats happened twice. How long did the drug take to begin working? What were your side effects. So far your the only one to say they were cured that I can find. Maybe there is hope. Thank you.

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@denglish19

Hi Mary, I'm happy to send it to a few people and hope to get feedback from others, so that I can refine the wording as needed, answer any questions and share it more widely.

What are your worst symptoms ?

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Sinus issues, headache, nausea, PEM, fatigue, weakness of limbs, brain fog

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@mary1627

Sinus issues, headache, nausea, PEM, fatigue, weakness of limbs, brain fog

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Start taking niacinamide (B-3), non-flushing form only today. 500mg 2-3x per day, with food. Spread it out throughout the day. Plus Liquid IV (non-sugar version) for hydration and ensuring actual absorption of all your supplements. Water it down greatly (60-80oz water) and drink it throughout the day. You should feel a difference in a week. I prefer Liquid IV for electrolytes because it also has potassium, other B vitamins and sodium. This will ensure you have what you need for basic metabolic function/processing.

You must eat a low histamine diet and anti-inflammatory. NO SUGAR. I cut out dairy, sugar and gluten just to be sure. (On a temporary basis).

And stop exercising and over-exerting in ANY way. Don't try to run errands, clean your house, walk your dog etc. unless you absolutely have to (ie - go to work). Any gains you make are depleted with over-exertion.

I'm writing up my full protocol, which includes full supplements, amino acids and nervous system care, and will have it online shortly. Wishing you, and everyone here!, all the very best!

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@bigfish88

I did my own tilt tests and 29 beats happened twice. How long did the drug take to begin working? What were your side effects. So far your the only one to say they were cured that I can find. Maybe there is hope. Thank you.

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I don't know I can say I am cured but at least, most of my symptoms are gone. I still have GI issues and when I started the drug, I had stomach pain, some nausea, sweats, a headache. Since I wrote my description, those things have improved. I have IC, too, a bladder condition, and I think my frequency has increased. Otherwise, I'm awesome - walking again, exercise class, able to get up in morning before 10 am, no naps. Feels so good. I would recommend doing the actual Tilt Test - I had tried doing it at home, too, but it's nothing like the real thing....not that much fun but now, I can say, it was worth it. Hope that helps.

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I would not say I am cured but I am 75% better and that has been life changing. I credit Abilify for most of the improvement (currently taking 0.9mg/day), also Naltrexone (3mg/day). Pacing has also been key - at my worst I set a timer and was active for 45 minutes and then rest for 15 minutes, all day long. Now I can go 2-3 hours without a rest. Napping, meditation, and doing things I enjoyed (art work, being in nature, etc) also helped.

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@mary1627

Sinus issues, headache, nausea, PEM, fatigue, weakness of limbs, brain fog

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What is PEM?

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@denglish19

Start taking niacinamide (B-3), non-flushing form only today. 500mg 2-3x per day, with food. Spread it out throughout the day. Plus Liquid IV (non-sugar version) for hydration and ensuring actual absorption of all your supplements. Water it down greatly (60-80oz water) and drink it throughout the day. You should feel a difference in a week. I prefer Liquid IV for electrolytes because it also has potassium, other B vitamins and sodium. This will ensure you have what you need for basic metabolic function/processing.

You must eat a low histamine diet and anti-inflammatory. NO SUGAR. I cut out dairy, sugar and gluten just to be sure. (On a temporary basis).

And stop exercising and over-exerting in ANY way. Don't try to run errands, clean your house, walk your dog etc. unless you absolutely have to (ie - go to work). Any gains you make are depleted with over-exertion.

I'm writing up my full protocol, which includes full supplements, amino acids and nervous system care, and will have it online shortly. Wishing you, and everyone here!, all the very best!

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I mean it is becoming abundantly clear that dealing with LC symptoms requires an individual plan as I hear and read so many approaches and regiments that work for some and not for others and some that are helpful for some and exacerbate symptoms for others. There are some albeit few general healthy principles that can guide everyone...

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@biggsy

What is PEM?

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PEM is Post Exertion Malaise, as set of symptoms onset about 24 hours after doing too much such as working around the house.

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@bunzman

I mean it is becoming abundantly clear that dealing with LC symptoms requires an individual plan as I hear and read so many approaches and regiments that work for some and not for others and some that are helpful for some and exacerbate symptoms for others. There are some albeit few general healthy principles that can guide everyone...

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Bunzman, what is happening currently is that people's symptoms are being treated one by one, as individual symptoms. Ultimately, that will NOT heal someone from long haul; at best it will help somewhat "manage" symptoms. I healed myself fully from long haul by treating the root cause of the problem/imbalance, something that is not known, or not recommended currently, by typical doctors or western medicine...

It's true that taking B-3 alone is not the magic answer, but in combination with a strict low histamine diet, anti-inflammatory diet, stress reduction, and nervous system care, it can and does work for most people.

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