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

To jeindc —

Thank you for the link to the article about many physicians:
(a) being unaware that a patient is presenting with symptoms of Covid, and
(b) not knowing what appropriate next steps to take to secure an accurate diagnosis and proper initial treatments.

The article is enlightening for me, because I’ve never encountered those obstacles to proper care. That’s Because I live near four major academic medical centers, with a wide array of medical specialists available, and have excellent medical insurance to cover my access to them.

Thank you again for the link!

— friedrich

To repl —

Thank you for providing these links to research and services provided by Dr. Patterson, which focus on identifying the specific viruses affecting a person, and then selecting treatments suitable to those specific viruses.

I, myself, would present the information about these services to my doctors to review, and only pay for the services if my doctors recommended doing so.

— friedrich

@mbryant1380 on this right now. I can’t even sleep

If there are any POTS cardiologists in your area, it would be excellent if you could be seen by one (or more). I am taking Midodrine for my POTS. My relative takes that as well as another medication to keep her POTS (which is more severe than mine) under control. Some patients even need infusions of saline or B12 or other things to keep going. Equilibrant is a supplement made and sold in Los Angeles, which also helps some patients. More information about it is at equilibranthealth.com.
My relative was waitlisted at the Stanford CFS/Long Covid Clinic for 4 years before she was able to be seen. They've helped her some but she still struggles and has been unable to hold any job or reliably know whether she will be vertical or horizontal. Stanford has been treating her for 10 years! I hope you are able to get the assistance and treatment you need. There is so much that is NOT properly understood about CFS and long covid (there appears to be a lot of overlap).

I'm 2 + years out now... is there anyone that is part of this group that is still experiencing long haul covid symptoms? It looks like most of these responses are from 2024? I am a long haul covid/vaccine injury victim and have been suffering 2 + years now with various "severe" symptoms.
I would like to know if there are still others out there like myself that are still suffering? I would like to hear from you as I am feeling so alone in this discouraging and disturbing journey.
Thanks, Sue

@suecedar1028 you are not alone. had covid in dec. 2020, 2 vaccines and 1 booster. only lost taste/smell. however over time, i've become sensitive to many many foods, fatigue, brain fog, insomnia, tingling in feet are my usual daily symptoms and i'll be 80 on mon. have been under care of naturpath for a year; bloodwork indicated what foods i'm highly sensitive to and i try to avoid. i joined survivors corps group on facebook and have found so many similar symptoms and answers. i do have an autoimmune disorder and leaky gut. there's alot of info. on youtube. i still can exercise daily and that's been my salvation and i nap at least once a day. i take h1 and h2 antihistamines which seem to help the brain fog and fatigue and will discuss taking these with naturpath next month, i have improved over the years but working hard on accepting that i am no longer who i used to be...some moments are terrible, some are good. we are not alone even if it feels that way.

@suecedar1028 you are not alone. I’ve read over 20 million people in the USA suffer from long covid. My husband is one of them. It’s horrible. Doctors in our area don’t have a clue. Test after test taken. Everything is “normal” But it’s NOT! A lot of his symptoms have disappeared but brain fog, phlegm in his throat and fatigue remain the same. The cognitive issue is awful. Stay strong and research on your own. Take your findings to your doctor. Try to get to a doctor who believes in long covid. We haven’t found anyone who actually can help yet so as of now it’s one day at a time. Some good, some not so good. Hang in there.

@suecedar1028

There no 'standards' testing for LC patients so it was a new horizon for my doctor to treat me. After a year and a half to no success, I suddenly asked her: I feel like I'm dying from the pain in my mid section, do you think my immune system has been trashed? This lead to a beginning for solutions.

I suggest having a discussion with your doctor about doing a T-Cell panel on your blood. This marked for me the beginning of finding solutions. My CD8 NK cells were so low they were not able to remove Covid waste from my body.

There were many posts in this Mayo LC group over the past few years that lead me to success in treating my LC. The first post dealt with a connection to my symptom of severe pain in my 'mid section' close to my liver. This is the 'technical' article that assisted my doctor to begin testing. Copy it and take it with you to your next doctor appt: https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2023.1150105/full

Ask your doctor: is my liver in normal range or do I need images of my liver? While my labs were normal my mid section pain was off the charts. Images taken of my liver confirmed what was happening to my body. While I don't consume alcohol or eat fatty foods, the images showed liver damage. These tests/images lead to a program of recovery. There is one national laboratory that has opened up a option to everyone without a doctor lab prescription. It is Lab Corp: https://www.ondemand.labcorp.com/blog/how-can-i-improve-my-liver-health-3-tips-for-self-care

It has helped me to change the sense of feeling discouraged into a mind set: It is so great to not feel as if I've been run over by a truck everyday.

@suecedar1028 I'm 3.6 years with LC. Severe fatigue and PEM are my worst symptoms. I'm on LDN and Abilify as per MD. They do help but I don't think they make a significant difference. Also many supplements recommended by doctors and this group. Maybe they help, but again, not enough to resume my prior very active life. There are millions of us out there. You are not alone and someday we will get the help we need. Hang on to that thought.

@bentstiks2 I read your response, and like your husband, I also have terrible phlegm in my throat. I have had countless blood tests, 6 laryngoscopies, two sinus CTs, and countless other tests, etc., and I still have major nasal/throat issues that deal with phlegm. My doctors are at a loss, because everything comes back as “normal.”

I am a 48y.o. male and had two confirmed cases of covid in July 2023 and Feb. 2025. These issues first started for me, however, in April 2020 - after a “cold” in February 2020. I presume that “cold” was actually COVID, before it really came into the larger public consciousness - but we will never know. For more information, I also received a fair amount of the vaccine (not claiming any injury there), and did a round of Paxlovid when I caught COVID in 2023. In the interim, I have tried flonase, saline sprays, nasal rinses, antibiotics, all of the “home remedies,” etc., and nothing has been able to break this incessant illness. Due to not having any answers, I still mask up in enclosed public spaces, because I cannot deal with any more variables with my health, for fear that it might compound the issues that I already have that no one can diagnose.

At any rate, I empathize with your situation, as I have been dealing with this terrible phlegm issue, having never had nasal/sinus/throat issues, in my life, prior to getting this virus.

If your husband should ever find some measure of relief, please do not forget us here, and please share your story. Like many, I pray for some type of answer, every day.