Data on 36 people who recovered | Patient Experiences Survey results are up

Start with the video below for an overview.

Slides: Patient Experiences Survey – Sick and Abandoned

Instructions on how to use the data dump. The data dump helps you find info on a specific treatment so that you can figure out how risky something is, whether people have recovered on it, etc.

Thanks for making the survey, doing the analysis etc.

For myself, I have genetically have a type of hemophilia (so trouble with clotting) and since long covid have been overclotting and/or suffering from vasoconstriction. So I may have mis-answered the questions there since I am having troubles with both over and under clotting.

I didn’t see development of (Type 2) diabetes as an outcome and the only diabetes drug you mentioned was metformin. I developed T2D among the cluster of my long covid symptoms and was put solely on Ozempic (semaglutide). That’s been the biggest and most helpful change in mitigating one cluster of long covid issues for me.

The dysautonomia cluster of symptoms remains untreated and I’m definitely still searching for answers.

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I think other surveys have gathered data on T2D. The PLRC survey asked about it as a pre-existing condition though the data is not really that useful because of the way the survey was designed.

I’m not sure if ozempic is popular among LC patients, although I suppose it sees a lot of use nowadays.

I’m curious… have you tried any dietary interventions for T2D? Zerocarb diets like carnivore have been tried to treat it. Calorie restriction also works (can be high carb), although apparently it’s unpleasant. That is what’s been reported in the literature anyways. The Paleomedicine group / Zsofia Clemens publishes on a carnivore diet variation, the paleo ketogenic diet. They report success for T2D and T1D. Some more T1D info here.

NOTE: people report negative experiences with the carnivore diet. see some safety information here: Meat only diet - Long Haul Wiki

Data on carnivore from a Harvard survey :

  • Of 13 participants reporting insulin use for type 2 diabetes, all but 1 person reported discontinuing insulin use.
  • 3 participants with type 1 diabetes report discontinuing insulin use.

These are all people who stuck with the diet for more than 6 months, so these are presumably survey responses from diet responders.

In addition to Ozempic, I am on a low carb diet (100 grams of total carbs a day is the target).

The cluster of my symptomology that related to unchecked T2D went away within 2-3 days of starting Ozempic and it makes it a lot easier to stay on a low carb diet. My A1C also fixed itself. So now ALL of my blood panels that they will do on my are bog normal and so the stuff that is left is a mystery.

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