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5 yrs post covid. Is there any help out there?

Posted by kevtan @kevtan, Jan 6 7:00pm

I can't take those any longer. I have been suffering with Long Covid for over 5 yrs. The biggest problem I have is finding doctors that understand this issue. Ringing in my ears and loss of hearing in left ear. Brain fog still. No short term memory. Depression sleep issues. Nightmares. Pulse rate between 38 to 45. Headaches. Rashes come and go. Wake up with blue feet. Hands and feet fall asleep in bed. Vision issues. No Libido since covid, none. Neck pain on left side of face. Fatigue. Try to get a good night's sleep but never works. Every 2 hrs up. Please Please my main thing is I would love to see a doctor that will listen and might run some test on me. This has to happen soon. Please help, any help.
Thanks
Kevin in FL

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kevtan | @kevtan | Feb 14 12:44pm

I haven't found one yet. I do happen to have the best Orthopedic doctor on Earth. I have 2 bone on bone knees and Dr. Fran always ask me about my long covid even though it has nothing to do with my knees. She is actually the Only doctor to ever read my blood work I had done back in 2021. I did a 14 panel blood test for Cytokines. In Illinois. I sent my blood from FL to the lab in Illinois. Came back I am so way over the limit on 7 of them. I took my results to her and she actually read them and cared. She is the Best.

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mcchesney | @kathleen1314 | Feb 14 2:54pm
In reply to @kevtan "@kathleen1314 Kathleen. Thank you so much for sending that. I will give them a call on..." + (show)
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@kathleen1314
Kathleen. Thank you so much for sending that. I will give them a call on Monday. Lots of good information. Did you happen to go there for LC help?
Happy Valentines Day to everyone out there.
Kevin

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@kevtan
No, I have a neurologist at Vandy for a vaccine reaction; that is how I knew about the unit.

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dvierheller | @dvierheller | Feb 14 7:37pm

What I have found in my 5 years with long covid is that doctors only treat what they know. You end up with 10 specialists but again they can only treat what they are familiar with. So I say this to speak truth from experience- you will not find a clinic or a doctor who will treat you holistically for long covid. when covid hit most doctors fled their patients and would not treat the virus. The only help came if you were ill enough(like I was) to go into the hospital and treated there. I have yet to find a doctor other than my lung doctor who understands LC disease. They understand symptoms but are bewildered in understanding the LC cause- it’s sad but true. So if you have the LC version of say Lupus, a rheumatologist will tell you they can’t help you because you are not a text book patient. Bottom line, do what you can with an understanding helpful doctor from any specialty and hope for the best. Get plenty of rest.

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beachesanddreams | @beachesanddreams | Feb 15 10:01am
In reply to @kevtan "@mishabear2025 Wow. Thank you for all of that information. I just wish more doctors would just..." + (show)
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@mishabear2025
Wow. Thank you for all of that information. I just wish more doctors would just read up and see that what millions of us are going through and realize it is a medical condition. If I take my car to a mechanic for new tires and thats all they do, I dont expect him to repair my transmission. I just wish family doctors and even neurologist would accept that millions suffer from this. They don't have to cure us but damit, listen to us. Stop Gaslighting us.
Kevin

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@kevtan The more I read from people in other states, the more I am convinced this is a real Florida issue. I have observed and felt that the overall state of healthcare has seriously deteriorated since COVID first appeared, and it seems to be statewide. UF may be the exception, I don’t know. They’re having their issues too.

I don’t know, it just feels like anecdotally, people are getting care and help in other places.

I’m not suggesting you move, but if you are able to seek the help you need in another state, perhaps simply an appointment might be the first step.

I know you’ve thought of every possible angle. I’m just really hoping you will be able to find relief soon. 🙏🏼

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drbf | @drbf | Feb 16 12:04pm
In reply to @mishabear2025 "PVS "post vaccinated syndrome " . Yale school of medicine term for long covid. Google it..." + (show)
Profile picture for mishabear2025 @mishabear2025

PVS "post vaccinated syndrome " . Yale school of medicine term for long covid. Google it and get the latest studies being done by the many schools of medicine.
I am 87years old and have been in PVS for 5years. I have experienced all of your symptoms on and off for 5years. My depressions were so severe that I contemplated suicide.
No help from the doctors because they can't diagnose something that hasn't been identified as a chronic disease.
So get your ass on your computer and do the digging.
I am now awake and alert for 3weeks without another episode. With help from my family and my primary doctor I changed my diet, (lots of proteins)reduced medications and escaped the sleep deprivation that has plagued me for 5years. Everyone is different. What we all have in common is PVS that may not go away for the rest of our lives.
There is no help out there you have to help yourself.
Mishabear

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@mishabear2025

What helped your sleep deprivation?

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karen8 | @karen8 | Feb 23 1:43pm

Kevin - I totally hear you - my fiance is going g on 5 years of this insidious disease - MANY of your same issues — our/ his life has totally changed and he does his best to adjust …. Way easier said than done - we are also in Florida and Dr.Estores at UF Long Covid Clinic in Gainesville is very thorough and very intelligent - they have a program there . No this does not take it away but if you at least had a doctor to. “Hear” you and believes how real it is ….. sending healing thoughts I can sense your desperation …

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kevtan | @kevtan | Feb 23 2:55pm
In reply to @karen8 "Kevin - I totally hear you - my fiance is going g on 5 years of..." + (show)
Profile picture for karen8 @karen8

Kevin - I totally hear you - my fiance is going g on 5 years of this insidious disease - MANY of your same issues — our/ his life has totally changed and he does his best to adjust …. Way easier said than done - we are also in Florida and Dr.Estores at UF Long Covid Clinic in Gainesville is very thorough and very intelligent - they have a program there . No this does not take it away but if you at least had a doctor to. “Hear” you and believes how real it is ….. sending healing thoughts I can sense your desperation …

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@karen8
Thanks for that reply.

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kevtan | @kevtan | Mar 1 9:07am

I just started getting tingling in my hands and fingers 2 months ago after 5 yrs post covid. It was worse when first started but like everything long covid related always worse until we try to get used to it. Mine goes back and forth. Left. Right or both. I went in the other day for a Ultrasound of my heart. It was only 20 to 30 min. 10 min on each side and back. Then you move apposite arm above head to stay away from chest. My dam hand started tingling and fingers. As I type now I have been awake 2 hrs. My left hand and fingers still seem to tingle. I almost think it is getting worse. More often and longer time periods. This is crazy. Ringing in ears for over 5 yrs, never had that until after covid. 59 years no ringing then covid and now it drives me crazy. Brain fog is awful, I never had a great memory but I cam tell my short term is nothing now. Whats weird is my long term from 60 yrs ago is great. I dont know how thats possible but it seems like since covid long term is better and short term gone. I dont mention this much I keep it private but another thing that has bothered me since covid 5 yrs ago, sex drive. Its like it went from 90% to Zero over night. Like I said that is difficult to talk about but we all know our own bodies and that change is something I never thought would happen for maybe 20 plus yrs away. That all changed at 59. So sad, I was a healthy, fun guy and now I feel like a 90 yr old man when it comes to that part..Everything still works but it is like I just don't want to, I just have no desire anymore. So sad. I hate what Covid has done to me. I was looking forward to retiring and vacationing travel and living life to its fullest. Now all I think about is someday it will be all over and I won't be suffering anymore. If I don't get better soon, I hope its sooner than later. Hope for all of us, But it doesn't look good where I am sitting.

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kevtan | @kevtan | Mar 1 4:46pm
In reply to @kevtan "I just started getting tingling in my hands and fingers 2 months ago after 5 yrs..." + (show)
Profile picture for kevtan @kevtan

I just started getting tingling in my hands and fingers 2 months ago after 5 yrs post covid. It was worse when first started but like everything long covid related always worse until we try to get used to it. Mine goes back and forth. Left. Right or both. I went in the other day for a Ultrasound of my heart. It was only 20 to 30 min. 10 min on each side and back. Then you move apposite arm above head to stay away from chest. My dam hand started tingling and fingers. As I type now I have been awake 2 hrs. My left hand and fingers still seem to tingle. I almost think it is getting worse. More often and longer time periods. This is crazy. Ringing in ears for over 5 yrs, never had that until after covid. 59 years no ringing then covid and now it drives me crazy. Brain fog is awful, I never had a great memory but I cam tell my short term is nothing now. Whats weird is my long term from 60 yrs ago is great. I dont know how thats possible but it seems like since covid long term is better and short term gone. I dont mention this much I keep it private but another thing that has bothered me since covid 5 yrs ago, sex drive. Its like it went from 90% to Zero over night. Like I said that is difficult to talk about but we all know our own bodies and that change is something I never thought would happen for maybe 20 plus yrs away. That all changed at 59. So sad, I was a healthy, fun guy and now I feel like a 90 yr old man when it comes to that part..Everything still works but it is like I just don't want to, I just have no desire anymore. So sad. I hate what Covid has done to me. I was looking forward to retiring and vacationing travel and living life to its fullest. Now all I think about is someday it will be all over and I won't be suffering anymore. If I don't get better soon, I hope its sooner than later. Hope for all of us, But it doesn't look good where I am sitting.

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Thanks Brenda

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dbamos1945 | @dbamos1945 | Mar 1 8:21pm
In reply to @kevtan "I just started getting tingling in my hands and fingers 2 months ago after 5 yrs..." + (show)
Profile picture for kevtan @kevtan

I just started getting tingling in my hands and fingers 2 months ago after 5 yrs post covid. It was worse when first started but like everything long covid related always worse until we try to get used to it. Mine goes back and forth. Left. Right or both. I went in the other day for a Ultrasound of my heart. It was only 20 to 30 min. 10 min on each side and back. Then you move apposite arm above head to stay away from chest. My dam hand started tingling and fingers. As I type now I have been awake 2 hrs. My left hand and fingers still seem to tingle. I almost think it is getting worse. More often and longer time periods. This is crazy. Ringing in ears for over 5 yrs, never had that until after covid. 59 years no ringing then covid and now it drives me crazy. Brain fog is awful, I never had a great memory but I cam tell my short term is nothing now. Whats weird is my long term from 60 yrs ago is great. I dont know how thats possible but it seems like since covid long term is better and short term gone. I dont mention this much I keep it private but another thing that has bothered me since covid 5 yrs ago, sex drive. Its like it went from 90% to Zero over night. Like I said that is difficult to talk about but we all know our own bodies and that change is something I never thought would happen for maybe 20 plus yrs away. That all changed at 59. So sad, I was a healthy, fun guy and now I feel like a 90 yr old man when it comes to that part..Everything still works but it is like I just don't want to, I just have no desire anymore. So sad. I hate what Covid has done to me. I was looking forward to retiring and vacationing travel and living life to its fullest. Now all I think about is someday it will be all over and I won't be suffering anymore. If I don't get better soon, I hope its sooner than later. Hope for all of us, But it doesn't look good where I am sitting.

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Neuropathy is a result of many causes and experienced differently by each of us. We search for remedies and use them hoping that we’ve found a cure; however, the sooner you come to the realization that there is no “cure” the better. We have a huge member group that share their good and bad experiences trying to relieve the symptoms. Join us!

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