message from my dr about my long term covid so sad now

Posted by ttammysc @ttammysc, Dec 27, 2022

I have so many symptoms from long term covid. i sent them all to my dr. he said there is no test to determine it and some people have symptoms longer than others. Except mine are everywhere. I saw somewhere on here that a member had a test done to determine if he/she had it. somewhere in texas. i would love to know the name of that doctor office so i can give them a call and talk to them. my insurance would cover it. he gave me no hope with my symptoms as well as how to deal with the CF that I have with it. All he could say was he was sorry. it upsets me so much that i live with constant nausea, and loose stools, can 't eat normal food without major issue; i can't take pro-biotics because of my intense allergy to live cultures. my throat hurts and my chest hurts and my CFS is worse now with covid pain. all my dr could say was that he was sorry. and, im the one miserable.

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

I also got little support from my doctors regarding symptoms that appeared on and off after Covid: severe insomnia, constipation, stomach issues, muscle aches, and fatigue. It seems there's a shortage of Drs and they are all too busy to help anyone with complicated issues.

REPLY

Unfortunately, the medical system is under extreme stress. It has not recovered yet since the onset of Covid 19.

REPLY

Try researching John McDougall MD. It may help.

REPLY

Just know you’re not alone.. I know that doesn’t help, trust me I’m 35 with no prior illness and now I’m getting seen by Drs and they keep trying to put me on different medications, which some are just to ease all of my pain and I get it, but now because I’ve been sick with so many different symptoms that came on since March 2020, all from long covid, I can’t work and my job ( I’m a Government Employee) is fighting me aka not covering my medical or paying me so thank God for my Husband or I wouldn’t have any money to go to the Doctors because apparently in America being an American Citizen I don’t qualify for any benefits because I’m Employed!! , so depression has now hit and they want me on antidepressants on top of the other 19 pills I take for my long covid issues, which I just ultimately want to be my old self- go to work, not be tired, be able to breathe, walk, run, etc. It just seems like that’s not going to happen anytime soon. Most Doctors are just as confused as we are, but some are trying to help us, and I keep thinking they will it’s just gonna take some time since this illness is so new, hang in there and stay strong, many doctors I will say are just focusing on managing our symptoms for now until they find a “cure” or something that works 🙏🏻🤗

REPLY

First Question – How old are you? Being 75, fully insured and up till long covid I was an attractive employee – Now I feel that the medical industry doesn't want to waste medical money on me – no diagnostics, no pain / symptom care, no medical expense too minor to reject. Better known as Medical Age discrimination (You're so old any care you receive would be wasted as you will probably die of something else before you're cured.

Second Question – Do you think the lack of care is Pharmaceutical or Insurance generated? I feel there is a strong interest in not determining why (Long Covid) is caused or allowing diagnostics or care for it. It's almost like a "Risk Analysis" report – If you don't know who or why – how can you determine a responsibility of risk? I have never found so many not interested in spending my (I'm kidding") insurance money! After paying for 50+ years they would rather let me die than figure out what is wrong.

REPLY

When was your last covid infection? My first round with covid took 18 months to recover from. During those 18 months, I assumed the brain fog (confusion, difficulty recalling every day words, comprehension struggles), fatigue, tinnitus daily headaches and fevers were going to be permanent. I had a really great 4.5 months of feeling like my pre-covid self then I was infected a second time. It was more mild the second time and I've been testing negative for 3 weeks now. Tinnitus, daily fevers and trouble sleeping have all come back and it's such a hopeless feeling. I read about taking fexofenadine (brand name Allegra) , famotidine (Pepcid) and diphenhydramine (Benedryl) last year and I don't know if it was coincidental or actually helped but I started improving once I started taking those. I'm thinking it's time to try it again. I use all generics because they are the exact as the name brand at a much lower cost. You can find out more by googling "fexofenadine and long covid" and maybe try it out. I'm so sorry that you're dealing with all of the symptoms while feeling unheard by your doctor.

REPLY

Hi. I know how Drs can make us feel. We think of our Dr was having all the answers bc sometimes they do. I heard from my Dr, as I sat in his office c/o abt debilitating exhaustion "It's only going to get worse. There's nothing that can be done. Nothing will get better on it's own " He then picked up his laptop and left the room. I was devastated. I felt hopelessness+ despair. Then a stranger handed me a country music style CD she recorded. She encountered me just momentarily while shopping. The first song began "Did the Dr tell you there is nothing he can do? Did he leave you hopeless+ confused? It goes on to say "It's not over til God says it's over."
When I heard those words, it put my Dr in his rightful place in the larger picture.
Then I embarked on reading/watching everything being disseminated on Long COVID from reasonable sources on the Internet. Something inside of me didn't believe my Dr was the final answer. He was not. I've made incremental improvements towards restoration of health and the cumulative results are solid from non- professional care.
Many of us redirected our focus from the medical establishment to alternative sources. And for many, it has been working out.
Discouragement is a huge disability itself. I say that from experience. It can be a greater burden than anything physical. I'm here to tell you that there is TRUE HOPE. You can grab hold of that and let it be real for you.
There are many, many non-medical interventions you can do that make a difference. One example: Epson salt baths. Another: vague nerve stimulation to your ear receptors. Another, certain herbal teas. Another: otc supplements. Another, Benadryl.
I could go on. I could be specific. But right now I want you to know the list of what is available to address symptomatic relief and perhaps even anti-viral status is abundant.
The current situation of recovery outside of a formal Long COVID clinic is self help. It's workable bc of the Internet. It's available for you. It might be overwhelming at this moment, but just start by throwing off hopelessness and finding some hope+ faith. Then start small. Reject everything that tells you that there's nothing that can be done. Try to get some rest + give yourself moments of peace. Then you'll be ready to sort out your priorities for recovery + begin to learn + test them.
Praying for you.

REPLY

same boat
my ship was sinking
did a 180 lifestyle change 1.5 yrs ago
53 yrs and back to life and living it
your words are kind and not pushy
humble…
I hope others hear you!

REPLY

Have you tried ashwagandha? It definitely helped my fatigue both covid and autoimmune disease.
Long Covid is also linked to epstein barr virus and I take black seed oil and oil of oregano. My fatigue and aches are gone almost completely. Since Covid I haven’t been able to do ten squats yet I’m doing a hundred or more a day.

REPLY
@lbyrd02

First Question – How old are you? Being 75, fully insured and up till long covid I was an attractive employee – Now I feel that the medical industry doesn't want to waste medical money on me – no diagnostics, no pain / symptom care, no medical expense too minor to reject. Better known as Medical Age discrimination (You're so old any care you receive would be wasted as you will probably die of something else before you're cured.

Second Question – Do you think the lack of care is Pharmaceutical or Insurance generated? I feel there is a strong interest in not determining why (Long Covid) is caused or allowing diagnostics or care for it. It's almost like a "Risk Analysis" report – If you don't know who or why – how can you determine a responsibility of risk? I have never found so many not interested in spending my (I'm kidding") insurance money! After paying for 50+ years they would rather let me die than figure out what is wrong.

Jump to this post

Hi. I believe there's truth to your analysis. I too observed my dual certified Dr being devoid of interest in performing specific tests that I know are indicated and appropriate. Turns out that Medicare Advantage programs financially reward Drs for low expense outlays similar to HMO's. I saw that posted on a small 3×5 card in the corner of the Lab, but I didn't have my phone with me to take a pic of it. Providers give the stats to insurers and get financial benefits. Also, I noticed my Dr padded my list of dxs on each visit. I learned this was to get higher payment per visit. There's corruption in the system. It's not a conspiracy theory. It's reality.

REPLY
Please sign in or register to post a reply.