Almost dead from Long COVID! HELP!!!!!

I'm sorry for your medical state, but some don't realize how serious long covid is or its potential impacts to our lives. I see eat better, meditate, or see a neuropsychologist. What they don't understand is I'm a 75 year old individual, still working as a professional engineer and since May 2022, I went from lifting 60lb dog food bags to buying 5lb bags just to get it in the house, my brain is on fast drain heading to dementia, all my joints are inflamed and I feel like full body arthritis has taken over and the continuous nerve pain and headache are one hiccup away from a stroke and all you get is a com-by-yah eat better recommendation while the medical profession sits with their thumbs up their butts.

By now (3 years in) they should know how to diagnosis the disease based on symptoms and they should have a diagnostic protocol for all patients. Once they identify the affected systems, they can treat the symptoms while they look for a cure. Sure I don't expect them to cure me tomorrow, but if I have exposure to stroke, heart attack or any other deadly outcome I expect them to alert me rather than dismissing it due to incompetence. We buy medical insurance to access medical care which covers diagnostic and preventative care - we don't pay for it to be ignored until we are dead.

I have had long Covid for almost 2 years too. I feel your pain. It has been a journey. I agree with Tomtom75. I have done the same. It is so important to get into a routine, start with 10 mins a day of exercise for 3 weeks, then increase time. I was told by UNC Covid clinic. (Start with walking to mailbox or around your place) Eat well, nap daily once late morning and again mid afternoon, 30mins-1 hour. Listen to your body, some days you can’t do much, others follow a schedule. Pace yourself. Very slowly you will feel better. I needed a mental health therapist too. Take B12 supplements, multi vitamins.
My case, Epstein Barr virus was reactivated, so I am taking Valtrex, twice a day 500mg. And K Pax immune vitamins also. I think it is helping. Hang in there. Find one thing a day that makes you feel happy and write it down and put in a jar. Read them when you feel like shit. Anything, like it makes me happy when I see a beautiful flower 🌺 I appreciate the little things now. Try to socialize a little too, Good luck.

Most people who have benefitted from treatment, whic I have as well from support groups and mynreading, followed protocols from their private pay functional docs. I have benefitted from fellow members of my support groups. One long hauler resource is Facebook Long-Haulers. Also check the possbilty of hidden Epstein-Barr virus (EBV) resurgence, and fnd good info in Stuff that Works and Facebook Neuro V Long-Haulers. Until docs and big pharma can catch up with the need, you are challenged to become your own advocate and researcher. Don't give up. There is good free info available. All the best to you for finding ways to help yourself and heal. Blessings.

Thank you very helpful I can’t seem to get into a routine. My chronic fatigue syndrome is overpowering me and I’m doing my best but I still can’t get into a routine no exercise, barely any sunlight.

My heart breaks for you. I’ve had it for six months and my issues are brain fog, memory issues, and fatigue. I can’t imagine having your symptoms for so long.

I hold onto hope because there is ongoing long Covid research. I’m part of the UIC/Mayo study ( I think they loop in Harvard also). From what I understand, they’re defining testing protocols. They’re exploring tests for multiple paths of systems- neurological, digestive, immune, cardio, etc. all those will move at different rates depending on progress. They can then define protocol and testing for clinical trials.

At my six month check in, they added a blood test for cortisol levels and an EKG. They’re also sending me for psych evaluation since the disease causes stress which can exacerbate the disease.

So I see things moving. I read an article saying the economic impact is lost productivity to long Covid with be $3 trillion dollars in the US for next year. I hope that leads to more research funding. I imagine most researchers and companies are focused on understanding new variants and vaccines- that’s where the money is at today.

I think of long Covid as the early stages of the AIDS epidemic when the medical community and people were just trying to understand what it is and how to identify it.

I believe, as a business person, that when long Covid is understood to be a real thing that can get an official diagnosis, doctors will be happy to treat people and companies will be happy to invest in R&D to treat it. It’s all a matter of resources and time.

That’s what gives me hope to fight every day. I believe science, AI, global organization, and our grass roots efforts will provide us relief.

My heart breaks for you. I’ve had it for six months and my issues are brain fog, memory issues, and fatigue. I can’t imagine having your symptoms for so long.

I hold onto hope because there is ongoing long Covid research. I’m part of the UIC/Mayo study ( I think they loop in Harvard also). From what I understand, they’re defining testing protocols. They’re exploring tests for multiple paths of systems- neurological, digestive, immune, cardio, etc. all those will move at different rates depending on progress. They can then define protocol and testing for clinical trials.

At my six month check in, they added a blood test for cortisol levels and an EKG. They’re also sending me for psych evaluation since the disease causes stress which can exacerbate the disease.

So I see things moving. I read an article saying the economic impact is lost productivity to long Covid with be $3 trillion dollars in the US for next year. I hope that leads to more research funding. I imagine most researchers and companies are focused on understanding new variants and vaccines- that’s where the money is at today.

I think of long Covid as the early stages of the AIDS epidemic when the medical community and people were just trying to understand what it is and how to identify it.

I believe, as a business person, that when long Covid is understood to be a real thing that can get an official diagnosis, doctors will be happy to treat people and companies will be happy to invest in R&D to treat it. It’s all a matter of resources and time.

That’s what gives me hope to fight every day. I believe science, AI, global organization, and our grass roots efforts will provide us relief.

I can’t find a doctor who thinks it’s real. My primary doctor quit during covid. I don’t have any of the same doctors that I had before this. I try to explain that I was fine before Covid. I’m wasting away. All blood work and abdominal ct come back fine.

I have had long Covid for almost 2 years too. I feel your pain. It has been a journey. I agree with Tomtom75. I have done the same. It is so important to get into a routine, start with 10 mins a day of exercise for 3 weeks, then increase time. I was told by UNC Covid clinic. (Start with walking to mailbox or around your place) Eat well, nap daily once late morning and again mid afternoon, 30mins-1 hour. Listen to your body, some days you can’t do much, others follow a schedule. Pace yourself. Very slowly you will feel better. I needed a mental health therapist too. Take B12 supplements, multi vitamins.
My case, Epstein Barr virus was reactivated, so I am taking Valtrex, twice a day 500mg. And K Pax immune vitamins also. I think it is helping. Hang in there. Find one thing a day that makes you feel happy and write it down and put in a jar. Read them when you feel like shit. Anything, like it makes me happy when I see a beautiful flower 🌺 I appreciate the little things now. Try to socialize a little too, Good luck.