1. < Post-COVID Recovery & COVID-19
Profile picture for kentkemmerling1949

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???

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

Profile picture for fourleaf
fourleaf | @fourleaf | Aug 18 8:21am
In reply to @jsnfltn "Need guidance. My wife had 1 covid vaccine 2.5 years ago. 6 months later she had..." + (show)
Profile picture for jsnfltn @jsnfltn

Need guidance. My wife had 1 covid vaccine 2.5 years ago. 6 months later she had stroke like symptoms but no stroke. Her symptoms are light headed, brain fog, tumors, left side body tingling, extreme tiredness, head pressure and racing heart. We have seen many doctors including neurologist with no diagnosis or treatment. They say it’s made up but they have witnessed the tumors. We believe this could be long COVID or vaccine related. We are looking for a doctor who isn’t afraid to diagnose that if that is it and treat if possible. We live in southern IN but will travel if need. Any advice?

Jump to this post

Couple of resources I've found...

Long Covid Alliance org - directory of long covid clinics (some old information)

Providers with Advanced Training Headaches/ Migraine
National Headache Foundation
headaches org resources healthcare-provider-finder
Scroll down -> United Council for Neurologic Subspecialties (UCNS) Certification in Headache Medicine (700 listed); and Advanced Qualification in Headache Medicine (AQH©) Certification (326 listed) - scroll to bottom select State and see who has the added certifications in your area.

It's a journey, best wishes on your journey!

🍀

REPLY
Profile picture for h2998sc
h2998sc | @h2998sc | Aug 18 12:13pm
In reply to @jsnfltn "Need guidance. My wife had 1 covid vaccine 2.5 years ago. 6 months later she had..." + (show)
Profile picture for jsnfltn @jsnfltn

Need guidance. My wife had 1 covid vaccine 2.5 years ago. 6 months later she had stroke like symptoms but no stroke. Her symptoms are light headed, brain fog, tumors, left side body tingling, extreme tiredness, head pressure and racing heart. We have seen many doctors including neurologist with no diagnosis or treatment. They say it’s made up but they have witnessed the tumors. We believe this could be long COVID or vaccine related. We are looking for a doctor who isn’t afraid to diagnose that if that is it and treat if possible. We live in southern IN but will travel if need. Any advice?

Jump to this post

I subscribed to his channel on youtube.I only watch the ones pertaining to long covid that he does.IDK....out of all the others on youtube,his manner and thoroughness with 'reasons why' just clicked for me.

REPLY
Profile picture for h2998sc
h2998sc | @h2998sc | Aug 18 12:20pm
In reply to @annlandi "I have been suffering from long Covid for more than two years (worst symptom is extreme..." + (show)
Profile picture for annlandi @annlandi

I have been suffering from long Covid for more than two years (worst symptom is extreme fatigue) and have been to two acupuncturists. Several sessions with needles and expensive herbal medicines and no improvement whatsoever. LC is a viral phenomenon which Chinese medicine is not equipped to treat, and a lot of these people are money-sucking quacks. I advise you give it up.

Jump to this post

yep.It's at the molecule level.They're being disrupted and not doing what they're designed to do,or very poorly.

REPLY
Profile picture for tiredoflc
tiredoflc | @tiredoflc | Aug 19 4:18pm
In reply to @gkdew2 "Seriously-same. My own daughters that know how weak I have been for over a year think..." + (show)
Profile picture for gkdew2 @gkdew2

Seriously-same. My own daughters that know how weak I have been for over a year think it is in my head. I sure hope they don’t experience this. I noticed that the docs- neurologist- call it post covid now. Maybe that is easier for people to believe since it indicates COVID causing something else. One of my daughters says you can’t have a virus for over a year. We know differently, don’t we

Jump to this post

I’m sorry you have had to endure the doubt of anyone with your Long Covid health issues. As you know, you are experiencing very real changes to your body and its functioning that are very challenging and life altering. I too have some friends/family in the medical profession who doubt Long Covid referring to it as “junk science” It is unbelievable in this time after all the death and devastation that Covid caused, how anyone could doubt any possibility of long term harm from a MAN MADE virus! Please stay vigilant working hard to inform yourself and any around you, they will eventually come to know the truth about Covid and its terrible impacts as time goes on. Wishing you strength and improved health in any way possible

REPLY
1 reply
Profile picture for suefish
suefish | @suefish | Aug 20 2:06pm
In reply to @tiredoflc "I’m sorry you have had to endure the doubt of anyone with your Long Covid health..." + (show)
Profile picture for tiredoflc @tiredoflc

I’m sorry you have had to endure the doubt of anyone with your Long Covid health issues. As you know, you are experiencing very real changes to your body and its functioning that are very challenging and life altering. I too have some friends/family in the medical profession who doubt Long Covid referring to it as “junk science” It is unbelievable in this time after all the death and devastation that Covid caused, how anyone could doubt any possibility of long term harm from a MAN MADE virus! Please stay vigilant working hard to inform yourself and any around you, they will eventually come to know the truth about Covid and its terrible impacts as time goes on. Wishing you strength and improved health in any way possible

Jump to this post

You’re an angel. …

REPLY
Profile picture for fourleaf
fourleaf | @fourleaf | Aug 21 4:06pm
In reply to @jsnfltn "Need guidance. My wife had 1 covid vaccine 2.5 years ago. 6 months later she had..." + (show)
Profile picture for jsnfltn @jsnfltn

Need guidance. My wife had 1 covid vaccine 2.5 years ago. 6 months later she had stroke like symptoms but no stroke. Her symptoms are light headed, brain fog, tumors, left side body tingling, extreme tiredness, head pressure and racing heart. We have seen many doctors including neurologist with no diagnosis or treatment. They say it’s made up but they have witnessed the tumors. We believe this could be long COVID or vaccine related. We are looking for a doctor who isn’t afraid to diagnose that if that is it and treat if possible. We live in southern IN but will travel if need. Any advice?

Jump to this post

Do you need a Neurologist or Immunologist?
(I am trying to find “root cause” and not just medicate the symptoms.)

This article is why I'm now researching Specialist in Immunology. Also, I'm getting the feeling that I have exhausted the Neurologist options.

Google - gladstone In Patients with Long COVID, Immune Cells Don’t Follow the Rules

"People with long COVID have dysfunctional immune cells that show signs of chronic inflammation and faulty movement into organs, among other unusual activity, according to a new study by scientists at Gladstone Institutes and UC San Francisco (UCSF). "

Google - medrxiv Comparative Analysis of Long COVID and Post-Vaccination Syndrome

“Question What are the similarities and differences between long COVID and post-vaccination syndrome (PVS)?
Findings In this cross-sectional study of 682 individuals, machine learning models identified distinct symptoms between long COVID and PVS. Long COVID was characterized by brain fog, altered sense of smell, and shortness of breath, while PVS was associated with burning sensations, neuropathy, and numbness.
Meaning Although long COVID and PVS share overlapping symptoms, they have distinctive symptom profiles, suggesting potentially different underlying biological mechanisms. Understanding these differences can guide clinical diagnosis and targeted management, and inform further research into their distinct immune and biological pathways.”

🍀

REPLY
View MoreView Less
Please sign in or register to post a reply.