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

Posted by seekingsupport @seekingsupport, Feb 19, 2024

I’m at a complete loss. I feel like this is my one last ditch effort at reaching out for support. I only had Covid once back in the summer of ‘22. I was very ill for over 6 weeks and it affected my heart for about a month afterwards with pericarditis and tachycardia. I thought I made a full recovery because I was completely symptom free for over a YEAR. This past August I moved and a week afterwards I became ill again, (no covid but a myriad of other new symptoms including the return of heart issues). Since then I have progressively gotten worse. I’ve had every test done under the sun including an endoscopy, colonoscopy, MRI of my brain, countless EKG’s, tons and tons of bloodwork…I could write three paragraphs on all of the doctors and tests and debilitating symptoms. I was diagnosed with POTS in October. I have lost over 50 pounds and cannot seem to gain weight and I am continuing to lose weight. Nobody has answers except to take a beta blocker which lowers my already too low blood pressure and makes me feel even worse. I’ve been to the ER almost 10 times. I feel like everyone thinks this is psychological and they continue to gaslight me. Why are there zero resources for people dealing with this? I’ve been unable to work now for over 6 months. I’m living alone and it’s becoming hard for me to even care for myself. Where is the help? Why have we been forgotten? I have become suicidal every day because of how ill I am without any support. There is only ONE Post Covid Rehabilitation Clinic here in the entire state of Washington and I’m not scheduled to see someone until June! My heart feels like it’s failing and getting worse by the day. I don’t think I’ll be alive by June. Can anyone help me? I’ve joined the Dysautonomia International group but everyone in there has at least someone who is supporting them. My family has been awful, making it out to be severe depression or that I’m exaggerating to get attention since all of the tests come back negative. They tell me to drink more water, eat more salt and exercise. I went to the gym every day following the POTS protocol back in November and now my heart is much much worse. Someone please help me.

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

Profile picture for pattig09 @pattig09

@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.

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@pattig09 i started developing stomach pain about a month after getting covid in 2020.told my dr.nothing done or looked for.I started taking tums big time.Then Pepto,then tylenol.Anything to stop the developing pain.6 years in now...got an endoscopy and colonoscopy.Found 10mm polyp in there.Removed.ALL pain went away.Within the next day.Wish I'd know about this way back when.I'm 6 ft.WAS 175lbs at the onset of covid.Now...6 years in...135 to 140.I'm eating,but nothing like before.I want to get back.At least I can still treadmill and that really is a good thing.I'm going to keep pushing through.I'm 'almost' clear of things.Taking NAD and NAC for mental help.Seems to be helping my brain some.We'll see.Most of my 'recovery' things I got from Dr Paul Anderson on youtube.Been following him for several years now.He IS awesome.Anyway...God Bless and hang in there with hope.

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Profile picture for suecedar1028 @suecedar1028

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

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@suecedar1028 I caught covid in spring of 2024 and these symptoms stayed and got worse: fatigue, dizziness, shortness of breath, brain fog, some muscle/joint pain, and GI tract symptoms. I used to hike, backpack, run, and lift weights. Now I mostly stay home and rest. My house is dirty and the yards need help. I can cook simple meals but it's a struggle to do things. "Are you still tired?" and "You look ok" are common comments from friends. I've started to avoid socializing because I'm tired of people looking at me cross-eyed.

In the past two weeks, I've been taking tributyrin and various prebiotics every day, and my gut symptoms like diarrhea have gone away. I'm hoping that the immune system might heal some with these new supplements. I have tons of supplements, which mostly don't do anything.

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