I was recently diagnosed with post Covid syndrome. What to do?

Posted by mcvan1951 @mcvan1951, Jul 18 4:08am

My primary symptoms are extreme fatigue, excess mucous, night and day sweats, and coughing. I also have mild COPD, which is managed by medication. I honestly don’t know where or how to begin to manage these symptoms. There are no clinics in my area that treats long Covid. All advice is welcomed.

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@joanland

I'm so sorry that upon receiving a diagnosis of long-COVID you did not receive a referral to an appropriate location or clinic or physician that can provide long-term care.
Start asking around. Where I live there is a neurologist who has previously worked in a long-COVID clinic. She no longer specializes in long-COVID but does see long COVID patients. In fact, posting on this forum that you are searching for someone who specializes in long-COVID might bring help. I hope you find someone whom you can see.

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Thank you for your response. I live in Ontario, Canada and the clinics that used to treat post Covid have all been disbanded. There are private clinics but they are very expensive. What has your treatment provider givempn you that helps with your symptoms, especially the overwhelming fatigue.
Thanks

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@mcvan1951

Thank you for your response. I live in Ontario, Canada and the clinics that used to treat post Covid have all been disbanded. There are private clinics but they are very expensive. What has your treatment provider givempn you that helps with your symptoms, especially the overwhelming fatigue.
Thanks

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I was given a Rx for Provigil (modafinil is the generic). It only comes in 100 and 200 mg tablets. I find that 25 mg/day, take it in the morning, is too much for me and I can't take it every day. I took it every day for almost two weeks before I realized it had started to interfere with sleep. Right now I am off of it. It helped a great deal; I actually felt like my old self during the first week. You will need a pill splitter. I'm going to try taking it 4 days a week to see if I can maintain on that dosage without it being too much.
Also I was found to have low T3, one of the thyroid hormones. I was taking 5 mcg liothyronine, a T3 supplement, but apparently I was not taking enough. The smallest tablet is 5 mcg. I started by adding a 5 mcg tablet so I was taking 10 mcg/day. That was too much, so I'm now taking 10 mcg 3 days /week and 7.5 mcg the other days. Again, the pill splitter comes in handy. Do make certain a thyroid PANEL is run so that your thyroid hormones are at their necessary levels.
Only change one med at a time, or you won't know which changes are causing any side effects. And give yourself at least two weeks on a stable dose before you change it, unless, of course, it is causing deleterious side effects.
I so hope you find something that helps. My very best wishes to you. Please don't hesitate to contact me if you have additional questions.
My daughter who had Chronic Fatigue Syndrome for years, also found that her Post-Viral-Infection-Syndrome had left her with many food allergies. So, in addition, you might consider seeing a naturopath to go through food allergy testing. When my daughter eats a food she is allergic to, she feels awful, has headache, etc., for a few hours, but they were contributing to her overall condition. That might be another piece of the puzzle. Again, please contact me again if you have more questions, thoughts. Joan

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@joanland

I was given a Rx for Provigil (modafinil is the generic). It only comes in 100 and 200 mg tablets. I find that 25 mg/day, take it in the morning, is too much for me and I can't take it every day. I took it every day for almost two weeks before I realized it had started to interfere with sleep. Right now I am off of it. It helped a great deal; I actually felt like my old self during the first week. You will need a pill splitter. I'm going to try taking it 4 days a week to see if I can maintain on that dosage without it being too much.
Also I was found to have low T3, one of the thyroid hormones. I was taking 5 mcg liothyronine, a T3 supplement, but apparently I was not taking enough. The smallest tablet is 5 mcg. I started by adding a 5 mcg tablet so I was taking 10 mcg/day. That was too much, so I'm now taking 10 mcg 3 days /week and 7.5 mcg the other days. Again, the pill splitter comes in handy. Do make certain a thyroid PANEL is run so that your thyroid hormones are at their necessary levels.
Only change one med at a time, or you won't know which changes are causing any side effects. And give yourself at least two weeks on a stable dose before you change it, unless, of course, it is causing deleterious side effects.
I so hope you find something that helps. My very best wishes to you. Please don't hesitate to contact me if you have additional questions.
My daughter who had Chronic Fatigue Syndrome for years, also found that her Post-Viral-Infection-Syndrome had left her with many food allergies. So, in addition, you might consider seeing a naturopath to go through food allergy testing. When my daughter eats a food she is allergic to, she feels awful, has headache, etc., for a few hours, but they were contributing to her overall condition. That might be another piece of the puzzle. Again, please contact me again if you have more questions, thoughts. Joan

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Thank you for the helpful information and for the offer of support. I really appreciate it.

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