I feel like I’m slowly dying and nobody is helping

Hi. I don't know if I said this to you before but I ended up with a myriad of symptoms about 10 years ago after moving. Found out what they thought might be lung cancer after a CXR and being so sick, something showed in my lungs It turned out to be toxic mold. 6 months after I moved ahain after living in it for 2 years I was back to normal.

POTS is an autoimmune disorder. Mold triggers autoimmune. I have POTS from long covid too but the timing with your move triggered my memory. I ended up on oxygen at night from it and the "lung tumor" she thought for sure was cancer, didn't light up on PET scan. Probably was a cyst in my lung from the mold. It also cleared up. (Back on night oxygen with also CPAP after covid.)

Maybe a mold test just to rule out?

You are not alone and I suspect the doctors you have seen are not "gaslighting" you. Millions of Americans are fighting multiple covid related symptoms and their physicians and medical researchers are still struggling with the reasons and how to treat. Most will openly admit that they don't know how to treat the memory loss, fatigue, heart and lung problems, intestinal issues and on and on. Many of us have lost their lives including younger people, others have watched the quality of life deteriorate sometimes dramatically. You are not alone.

There are major research efforts underway (NIH, Yale, Stanford) And there are several medical groups offering help. Bruce Patterson MD from Yale is offering help and has I understand been able to help, perhaps not cure tens of thousands. Research in other countries is also helping.

Google "long covid" to see all that is being done. Focus on the positive when you can. And pray for all of those are suffering when you can and in your own way.

I am not a doctor, but if you could, have your Thyroid levels checked. It’s a simple blood draw and ask to have your TSH, T3-Free, T4-Free, and Thyroid Antibodies tested. You many ask also for them to check you for celiac, it’s also a blood test. I was recently diagnosed with Hashimoto’s/Hypothyroidism and felt so tired and weak before starting on Synthroid medication for low thyroid. I feel your pain and I’m so sorry you’re suffering so. Your family needs to get on board with you. Why ever would you pretend to feel this way! Good luck!

All I can say is hang in there! My symptoms are much less serious that yours, but I know what you mean when you say that you don't feel heard. Most doctors are still totally deaf to the fact that what a person is experiencing is from COVID. Much of the medical community still seem to think it is not real. And, it seems that friends and relatives don't really think it is real either.

Are there any support groups where you live? Know you are not alone. What you are experiencing is real.
Keep trying to get help!!

Hi, I don't know you from Adam. However, our stories could be twins. I am not kidding. Like, I had to check the date you posted to think back awfully hard, worrying that I had been the original OP. I am really not kidding.

You are not alone. There are those of us that echo (or in our case, echo in perfect pitch) yours. There are also those of us that are quite literally dying inside to have not only an answer, healing, but a friend to support us through it all.

Please dm me (if that's even allowed here?) If not, and I find that out I'll post my contact info for you to use directly.

Families can be absolutely awful. Mine is sadly, no exception to that long-believed-for-good-reason-belief. It has hurt in a near-indescribeable way, but sometimes things just have to hurt that badly, to release my grip on my relationship with my family. However, for my sanity and self-preservation alone, letting go is more of a survival mechanism for me than an ego trip. The agony it causes me still is indescribable here without me (already) beginning to feel like a spectacle. I am certainly not trying to make this about me and my situation, I just hoped that laying a bit out about my personal loss would help you see how similar our lives actually seem to be.

"A true friend is someone who helps us up when we are down, and if they can't they lay down beside you and listen."
-Winnie the Pooh, Disney

Thanks for listening,
Christi

seekingsupport, Hello....I was just re-reading your post from Feb. 2024....it is now January 11, 2025, and I'm wondering how you are doing.... I hope you are better. Please let us all know how you're doing. I pray your doctors found a way to help you. ❤

I too hope you are better...even if only a little! I know I have gotten a bit better over the last four years and I have more days when I can do somewhat more activity...so I hope you have too!

Covid has caused a lot of issues relating to the heart and I honestly don’t think that the doctors have the answers that patients like us deserve and they mask the pain with drugs !
I haven’t had a good experience with my doctors and I’m beginning to think I need to try to take matters into my own hands and figure out what’s going on and why .

Hello, I don’t know when you wrote this post, but I’m assuming it was a while ago. I too had Covid in December of 2022 and it was a mild case, affecting my sinuses and I have lost my taste and smell, still…it’s January of 2025. I was wondering if you’ve had your Thyroid Levels tested with a blood test? You may have hypothyroidism, which I was diagnosed with in November of 2022. I saw you said that your B/P is very low and that’s how I felt when I went to be tested. I was very tired and low B/P, I was gaining weight by the day and didn’t have much energy. Ask your doctor to run a Thyroid Panel and test your TPO Antibodies, T3-Free, T4-Free levels. You should get some straight answers from that. I wish you well!

I see this post is almost a year old. Wondering how you are doing?
I’m still struggling along with the same issues of ear pressure, lost hearing, blurry vision, constipation etc.
After having a bad flu (not Covid) my ears are worse than ever!
My Integrative doctor suggested I should have Paxlovid onhand just in case I contract Covid again. When I went to have the prescription filled the amount was $1400.00 for the five day dose. With my insurance it’s still $700.00! I walked away because I don’t have Covid, but I cannot believe this criminal behavior is allowed in our country!
It’s like saying to people just lie down and die, we don’t care.