Running out of hope

Good morning, @tiredandalone Your @name makes me feel very sad and concerned for you. Reading through your post today, my goodness, you’re really going through the ringer with all these unexplained symptoms! No wonder you’re frustrated and tired. But I do hope you’re not completely flying solo. Do you have friends, family, or pets that can offer some support or help bolster you when you’re feeling alone? Well, I’m happy you found Connect, you won’t be alone here. ☺️

Regarding your symptoms. You’ve been seen by a number of doctors and had quite a few tests run. What I noticed also was the recurring symptoms of illness which points to your immune system not being at its peak performance level.

You mentioned having Covid in 2019 and that you’re still experiencing most of those symptoms. Were you feeling perfectly healthy before having Covid? Have you ever heard of Covid Long haul? Some people who had the virus never feel as though they’ve recovered. The Connect forum has a group dedicated to the symptoms and any questions from members experiencing similar issues.

Here’s the link to the Group along with a excellent podcast on Longhaulers and one conversation you might find interesting as an introduction to the discussions in post covid group.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
https://connect.mayoclinic.org/comment/601628/
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/post-covid-19-syndrome-can-be-a-long-haul/
I’m not saying this is what’s going on but it’s another avenue to explore.
Has your doctor also checked for any other viruses such as CMV or Epstein-Barr?

Another item that raised my eyebrows a little is the elevated protein in your blood. Inflammation in the body can cause that but your doctor can have a lab test run to zero in on the type of protein. More specific tests can help determine the source such as liver or bone marrow.
Has your doctor further mentioned the protein in your blood?

I too have had a few dozen persistent symptoms for over 2.5 years now, since November 2019 when both my husband and I became deathly ill with what we believe was Covid. I have been sick ever since with all types of strange neurological symptoms that are debilitating yet all tests are normal and most doctors shrug off my symptoms as just 'anxiety'. I finally just had a small nerve fiber biopsy yesterday at USF Tampa University and I found a doctor in Lakeland Florida, Dr Kathleen Haggerty from Watson Clinic who is specifically working on long hauler covid patients.
You might look into a skilled Long Hauler Covid doctor-clinic that could be of help in finding out what has happened to you. I know of so many people, like us, with all these multitude of weird symptoms who posts on the Mayo Clinic blog that are in our same situation.

I too am frustrated and feel so hopeless and many times I feel the doctors are brushing off my health concerns and strange symptoms as just anxiety. Please keep us posted as we do care and are here to support others suffering through our health crisis'.

Could be lymph in neck. I'm experiencing the same. Have you heard of chronic Epstein Barr virus? Parvo b19 can even be in the mix to test for. ANA positive or negative?
I know this feeling. I'm living my last cycle it feels. I don't know where to go.

Have you been tested for MAC? It is a lung disease.

Hello @tiredandalone! Although you list a number of ways you are suffering, what struck me was your will to live, your reaching out especially to specialists. I am not a specialist but a loving old man still curious about life. My wife is afflicted with many ailments, too, but, like you, she doesn't give up. Also, I loved your last comment about feeling "like an experiment". That sounds very hopeful to me, because I think back on all the experiments in my life AND I'm still here and happy for it. The very effort to write is a sign of hope. The very wonderful responses show the variety of caring and concern for you. I see hope under the heavy blanket of suffering. Happy to hear from you if you wish. I am not pollyanna in male form, just resilient. srhappy

ANA was negative

I am currently being referred to Mayo for answers hopefully. 25 weeks now with no voice and feeling like death, I am ready

Hello-
Do a simple blood panel to run for Lymes disease.
I had this and it affects many people differently.
A positive lymes is curable with 20 days of antibiotics.
Simple and doesn’t cost a lot. Just please rule this out.
It is more common than some people know.

I had all of those tests done and many of them have been done repeatedly over and over over the last 3 years. I probably had over a million dollars worth of x-rays MRIs everything you can think of every test you can think of I have had it and it all comes back negative. My doctor's over the 3-year period have looked for every single thing I could have from Lyme disease to Cushing disease to MS to Lou Gehrig's disease to irritable bow I've had every test done Scopes going down my throat scopes going up my butt my poop was analyzed everything and it all comes back negative

not at this time but they did find two nodules on my lungs that they are surrently watching