Please allow me to {{{scream}}} and yes, I'm crying

Hi @summerof42. Everything you shared is true I have no doubt as Im sure many others in any of these support groups could attest to. I have a son who basically suffered broken neck and compressed spine and took a year to get his medical records accurate which by then the neurosurgeon said due to the time any curable measures attempted would leave him a quadriplegic and lives now permanently disabled. My daughter same issue of endless contacts to get records accurate and finally a PCP who took the time to write one paragraph stating the records do not reflect her debilitating symptoms preventing any semblance of daily living. I share this as I hope you continue to fight by contacting the healthcare systems medical records dept. for formal corrections request by providing your documents proving the correct information . Then these correction requests copies with the corrected records can be hand carried in a small concise folder to all appointments and available to submit easily in the future when needed. I am not trivializing the work and frustration involved in having to do this, especially when dealing with these unimaginable health issues, as my daughter literally had 4,000 pgs, Suggest starting with one most important or area easily covered and allow the time and effort without setting your health back. I literally take a whole day to find needed info., next day write 5 min. to complete form, next day to copy, and last to prep/address for mail. I know you are strong just the way you fight here and all of us want to see you conquer this and win your healing journey! 🌈

I see you.
I feel your frustration.
This is not medical advice.
You do need a PCP who cares about you and sees you as a human being.
My PCP left the practice. I tried 4 different PCP’s over the course of a few months. None of them understood the 10 page report that the Mayo long covid clinic prepared. Thus, they couldn’t help me manage all of the specialists I needed to see.
Unfortunately, in America- our system is designed to maximize the profit of our illnesses. It is not designed to figure out that our brain and our nerves maybe impacting our gastrointestinal processes. Only our PCP, who has 15 minutes with us, looks at us a whole human being.
In the usa, I think that people with chronic illnesses, like “persistent sars2”, me/cf, etc., need the best PCP money can buy. I decided to pay for concierge healthcare. Patients pay a fee to have more time with a PCP, access to testing, responses to my chart messages..
I know that most people can’t afford to pay a fee to have access to a doctor. Our healthcare plans should provide healthcare- but they don’t, and definitely not for chronic covid.
My advice:
1)Ask the doctor to remove all of the notes, as they are sexist and shaming.
2)Get a PCP who knows about chronic covid , or at least me/cf or MS
3)Don’t give up. It’s YOUR life- fight for it.

1. I tried to get the records corrected and they refuse.
2. I tried to get a new PCP with no luck. As a matter of fact, when I saw the new one mentioned above, who was a really young female PCP, she pretty much brushed me off and said it's out of league. I still stuck with her because I NEED a doctor! However, in the interim I went to a new doctor, DO for another opinion which my neighbor said is really good, but then the new PCP found out and her nurse called me and said, she was dropping because I went to see another MD.
3. There's no hope because of what my records now show, and no doctor will accept me.
4. Heading back to bed. . . can't stop crying. I'm trying hard not to, because I don't want to gt dehydrated and 90lbs. I pray to our Dear Lord to help and give me strength, but how much more can I tolerate and go on?

Hugs to all

Please know that I see you and I hear you.
You are not alone.
Here are some links to things that have helped me.
Regarding you PCP-What does she tell her patients with ms? Is it out of her league? Then she should refer you to someone who can help you.
https://longcovidalliance.org/resources/patients/
https://www.nature.com/articles/s41579-023-00896-0

@Forlom Theressa,
Thank you kindly for being there for me. I'm trying so hard, I really am, and I clicked on the link to try and find an MD familiar with LT Covid. Every link I clicked seemed to want an email address or google sign-in to obtain which I don't have or wish to create.

I have always been so independent and strong, but the tell us if you need help, ask. . . so here it goes. Please our Dearest Lord, hear my prayer. I live in Wisconsin on the far north side near Illinois border. If anyone has a great MD they are working with successfully, or know of a clinic I can go to, PLEASE help in providing me info.

I'm so weak at this point and in so much pain, I no longer can find the strength and mind set compared to where I was 3 yrs ago when this all began.

This is what is so frustrating, all the doctors see me in this condition and don't care. What happened to their ethics and oath?

When I reached out to my last doctor on how much worse I am, his nurse messaged me, not even called, and told me if I feel that ill to go to the ER. Problem being, been there, done that and they go by previous notes and his records and just dismiss me. Especially being older at 68 yrs.

Summerof42:
Praying for you and I am so sorry. I hope these suggestions help in some small way:

1) The medical field is different since Covid. Doctors no longer can spend a lot of time with you like before and there is a nursing shortage. My PCP of 32 years retired and he was wonderful. You may try a few more until you find someone that will listen.

2) LONG COVID IS REAL!!! PCP's are not that familiar with long Covid NOR the symptoms with it because Covid has not been around that long. A Long Covid Recovery Clinic is your best bet. (Forgive me but I can't remember if you have been to one)

3) I went to 5 doctors about some issues with the mucousy saliva in my mouth after Covid and none of them could diagnose me. Why? They are not familiar with a lot of the Long Covid issues and are still learning. The Long Covid Recovery Clinic gave me answers to that and I am grateful.

4) I have had to go to Urgent Care recently for pneumonia, asthmatic bronchitis & sinus infection. I got great care and they were very proactive. It's harder to get into a PCP's office, get a lung x-ray since Covid than just simply going to an urgent care.

5) My body changed greatly after Covid and I have long Covid that has affected my joints, mouth, reflux, upper respiratory, immune system & energy. I have accepted that. I do not have as hard of issues as you do. I am reading everything I can get my hands on and listening to others on here to get a "fresher" outlook on Long Covid and what helps. Personally, I am going to go to an integrative medicine doctor that thinks "outside the box" on health issues. I think we need both with Long Covid.

6) Sometimes when you have a lot of medical issues, you have to unpeel each layer like an onion....one layer at a time. Get the worst thing treated first and then go to the next.

I believe with all of my heart, there is someone that can help you and I am praying for that. I care! Hugs & Prayers....

@covidstinks2023,
Thank you for hugs & prayers which are greatly appreciated and needed at this point and my only hope.

You're lucky you are getting the care you need at UC, I can't go anywhere to get help. It makes me so angry that by now the entire medical community is not aware of LT Covid and how to support patients, send them to clinics, etc. Of the many doctors I've seen in 3 yrs, I received no support. . . and that includes Mayo! I saw an Internal MD who was terrible and said I'll give you a Rx for Guanfacine and that was it. Even when I tried to message him via mychart and numerous phone calls he will not call me back. I'm told he's too busy.

I pray every night our Dear Lord hears my prayers and the support and Dr. I need is sent my way. Problem is, after 3 yrs I'm so ill now and I have a ton of layers to peel off the onion. Like my post indicates, because they all write down now that's it's anxiety and a mental health issue, I'm ignored and left to wither away and that I have went to many doctors and can't stick with one. That is a total lie. I had my PCP for over 30 yrs before he retired, the new PCP which was horrible, I have stuck with for 3 yrs until 2 weeks ago when I decided to find someone that could help me. I can guarantee you that those Dr's would do the same if they were in our shoes.

I'm so sorry. On my knees praying for you right now. God is able....

Hi Summerof42,
I'm so sorry to hear of all your problems physically and especially with uncaring doctors! That's awful! But I'm glad that you are praying! Frankly, that is all you really need since it doesn't sound like the doctors and others you've seen pay any attention to you or your medical needs! Pray fervently and often! God will answer your prayers sooner or later. Don't be afraid to tell God to "hurry up! I'm hurting! Thank you!" I've said that to God often and it works! The world today is different and not good. It states in the Book of Ephesians to "pray fervently in the evil day" which is what we are in and it sounds like you are running into that evil often! Keep looking for a caring doctor and keep praying. I will pray for you too. Have faith! Everything will be OK! By the way, it's alright to cry. God made us that way.
PML

As an ICU nurse for 40 years, I am ashamed that you are receiving such poor care. I found in a complicated situation, it’s best to see a rheumatologist. They take a lot of time listening. Initial appointments are 60-90 minutes long. They start at square 1. You don’t need to bring records as they do their own testing.