1. < Post-COVID Recovery & COVID-19

Recommendations on specific clinics for long COVID

Posted by kentkemmerling1949 @kentkemmerling1949, Oct 27, 2023

I am totally frustrated with the options for getting treated for Long COVID. I have been unable to basically walk since Jan. 2021 and have tried everything I can think of to improve with no help. I know long COVID is a new disease and there is not much known about it, but I am ready to try anything. I tried getting many, many tests, a ton of physical therapy and nothing has helped. I think it has to do with my inner ear and when I get stuffed up, my balance gets even worse. Any suggestions and specific recommendations on doctor or clinics to try???

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terrielynnav | @terrielynnav | Oct 29, 2023

Does anyone know of a place in Southern California!?

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smdawson540 | @smdawson540 | Oct 29, 2023
In reply to @smdawson540 "I go to Johns Hopkins Long COVID Clinic. You have to be referred by a physician...." + (show)
@smdawson540

I go to Johns Hopkins Long COVID Clinic. You have to be referred by a physician. They have been wonderful. I live 2 hours away from Baltimore so this was the most convenient place to go. I have had other experience with Johns Hopkins and am/was still very satisfied with their level of care. I saw a cardiologist. I am working with a Physical Therapist who is wonderful and knowledgeable. It is so wonderful to be somewhere that knows what is happening with my health and has plans of how to deal with it. Everything I have is non-curable but symptoms can be mitigated through medicine, medical equipment and physical therapy. It took 3 years for me to be diagnosed and get to this clinic. It has been a life saver.

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Not everyone has the same symptoms. My autonomic nervous system has been damaged and I have POTS , Neuropathy, Chronic Regional Pain Syndrome (extreme neuropathy), gastroparesis and one auto immune diagnosis and am being tested for another. I wear an abdominal binder so I can sit and stand without blacking out. I gained weight but barely eat and have an aversion to lots of foods. When I started with the long COVID clinic, the first thing they did was ask me a lot of questions. I then told her what I was experiencing. Then they recommended a biopsy, a cardiologist and then Physical Therapy. Your treatment plan will depend on you and your symptoms. Good luck! I hope we can all find a way through this!

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carlosmayo | @carlosmayo | Oct 29, 2023

There is a long covid clinic at Stanford University in California. It is excellent, but you have to be a California resident, and there is a wait of many months to get in. The main thing it offers is Naltrexone and Abilify medications - they saved me.

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jamfin4 | @jamfin4 | Oct 30, 2023
In reply to @2tnt "Glad to hear it. What treatment plan are you on?" + (show)
@2tnt

Glad to hear it. What treatment plan are you on?

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The integrative medicine doctor said weekly acupuncture treatments for 2-3 months; melatonin nightly as sleep is vital to healing;(she stressed the above two very strongly); Ubiquinol & acetyl L-carnitine supplements; pacing what I do—don’t push but gradually increase activity levels. The acupuncture practitioner started me on some herbs last week as well. Everyone is different so what works for one might not for another.
I tried to get into the Mayo LC Clinic in Jacksonville but they wouldn’t even talk with me as I didn’t have a positive PCR test on file at my PCP’s office. Didn’t matter that I tested positive for 12 days or that I had LC symptoms for over 6 months. They wouldn’t even give me ideas on where else to go. I was in tears. Very thankful for the UF program.

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2tnt | @2tnt | Oct 30, 2023

Sounds like you are in good hands. I am going through triple therapy through MedHelp in Birmingham AL. I have a lot of microclots per their blood test on me. https://medhelpclinics.com/service/long-covid-clinic It is helping but the process is slow but I am making progress. It is always interesting to see what other people are doing for their bodies. Since I had long covid for a long time before treatment, this treatment may not get me 100 percent back to where I need to be so it's nice to know what is helping other folks. Thanks for sharing.

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vholtzapple | @vholtzapple | Nov 1, 2023

Initial phone call from long covid/vaccines injury clinic Florida base. Hopeful to have some answer, going for blood work up. From there will see.

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biggsy | @biggsy | Nov 1, 2023
In reply to @2tnt "Sounds like you are in good hands. I am going through triple therapy through MedHelp in..." + (show)
@2tnt

Sounds like you are in good hands. I am going through triple therapy through MedHelp in Birmingham AL. I have a lot of microclots per their blood test on me. https://medhelpclinics.com/service/long-covid-clinic It is helping but the process is slow but I am making progress. It is always interesting to see what other people are doing for their bodies. Since I had long covid for a long time before treatment, this treatment may not get me 100 percent back to where I need to be so it's nice to know what is helping other folks. Thanks for sharing.

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What tests did you have done that show you have a lot of micro clots? I believe I do as well, but would like a test to confirm.

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2tnt | @2tnt | Nov 1, 2023

There are only about two microscopes in the country that has the ability to see them. Medhelp has one. The cost was $760 to find out. It is worth it. The entire treatment plan is worth it. My kids still need me around.

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lauriebee | @lauriebee | Nov 2, 2023
In reply to @jamfin4 "The integrative medicine doctor said weekly acupuncture treatments for 2-3 months; melatonin nightly as sleep is..." + (show)
@jamfin4

The integrative medicine doctor said weekly acupuncture treatments for 2-3 months; melatonin nightly as sleep is vital to healing;(she stressed the above two very strongly); Ubiquinol & acetyl L-carnitine supplements; pacing what I do—don’t push but gradually increase activity levels. The acupuncture practitioner started me on some herbs last week as well. Everyone is different so what works for one might not for another.
I tried to get into the Mayo LC Clinic in Jacksonville but they wouldn’t even talk with me as I didn’t have a positive PCR test on file at my PCP’s office. Didn’t matter that I tested positive for 12 days or that I had LC symptoms for over 6 months. They wouldn’t even give me ideas on where else to go. I was in tears. Very thankful for the UF program.

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What is the UF program, University of Florida? Would you mind sharing some info about it? I would really appreciate it! Thank you!

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