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.

drbf | @drbf | 14 hours ago

In reply to @pattig09 "@oly78 Okay, this journey for 'images' (CT and MRI) began in 2023 through surgery in 2025..." + (show)

@pattig09

@oly78 Okay, this journey for 'images' (CT and MRI) began in 2023 through surgery in 2025 and ended in May 2026 with final light probe look into my nose. I want to say again: this journey is ALL because I had an allergic reaction to the spike protein and it ended in damage to my T-Cells, CD8 NK cells.

During 1st emergency room visit in March 2023, I was given antibiotics and sent home with just an MRI taken. 5 months later on a 2nd emergency room visit, I had another MRI and again given antibiotics and sent home. No person in the emergency group mentioned issues with my sinuses. Because I had started to have migraine headaches for the first time, their focus was was 'the brain'. That winter while in Arizona, I saw my first ENT. She did a 3rd MRI which showed inflammation of the sphenoid which is the first time I was told I had sinus swelling near the brain in the sphenoid. A follow up CT confirmed. Again, first ENT prescribed what she said was 'a required 14 day treatment of antibiotics' before she could proceed. I told her I was not happy about this plan because of all the antibiotics I had been given in the past year for this condition of yellow drainage. My pleas failed to change her mind as ENT wanted to do surgery but she said the antibiotic treatment was a hospital requirement prior to surgery. Within a month she back out without a reason why and released me as a patient even though I had completed her antibiotic regimen. Found a 2nd ENT who repeated MRI then a CT which confirmed first findings. Dr. also required a high dose antibiotic. I objected completely because I had begun to experience mid section pain which was intense. By this period of time, I had lost both taste and smell on top of the sinus drainage and my tongue was 'on fire'. On third visit to this 2nd ENT he simply announced he would not do the surgery (I'm pretty sure it is because I would not another round of antibiotics) and said I should consider injections of the nerve bundles in my next to 'reset' my brain for taste and smell. Complicating all these symptoms, my tongue was now swollen to 3 times its normal size and he felt he was not qualified to treat conditions of the tongue. ENTs certainly could see the major extent of the sinus swelling but basically decided only to use antibiotics which failed to improve my condition. On to ENT number 3. This time a micro surgeon ENT. He did another CT and saw the inflammation was worse and scheduled micro surgery. Sadly, after the surgery he prescribed another 14 period of antibiotics (I don't know whose rule this is but it is apparently something that must be done by rules of either a hospital or an insurance provider). He said this is standard for surgery to protect the patient. It was while I was on this dose I discovered I had developed severe C-Diff from 4 - 14 day treatments of antibiotics. I did not know that for over 10 months that the antibiotics had actually damaged my immunity which nearly destroyed my gut bio. I had to go to the hospital during this antibiotic treatment because I lost control of my limbs (arms and legs) within minutes of taking the first dose. When I was released, because the hospital never check my immune system, I asked my PCP to test my immune system. By now I had daily diarrhea and what I ate came right back out undigested. While PCP followed the T-Cell path for immunity, my Gastroenterologist tested and found I had C-Diff (likely had it for over a year). This was my journey of feeling like I was dying from the inside. This put my sinus issue on a back burner in order to treat my immune system. Fast forward, last month the micro surgeon ENT did a nasal inspection and confirmed my sphenoid was again normal. This was a fiber optic probe that could be inserted to a full view. No CT required. My tongue is now normal and there is no discharge from my nasal cavities and not phlegm.

Jump to this post

@pattig09

OMG. What a horrible ordeal. I am so sorry.

I've had c.diff many times throughout my life. It was definitely from antibiotic use due to constant sinus infections. Sheer misery.

I don't think I have many nasal structures left. I am, however, still breathing.

I had septoplasty, ethmoidectomy, and turbinate reduction right before the pandemic, and recently, an additional turbinate reduction.

Right after the recent turbinate reduction, I had a complete remission of all of my symptoms of long COVID and ME/CFS for 4 hours. Over the period of 1/2 hour to 1 hour after that, everything came back to baseline.

I did a bunch of research on this and I am seeking a consult to discuss a sphenopalatine ganglion block or stellate ganglion block.

I am leaning toward the SPG because it is non-invasive, and because I've had internal shingles multiple times that affected my facial nerve on the left side of my body. That particular block is used for issues with the facial nerve.

Also, can relate to the murder scene after sinus surgery. LOL.

pattig09 | @pattig09 | 11 hours ago

In reply to @lez "@pattig09 Thanks for this. Very interesting. Do you mind sharing more re the sinuses? How did..." + (show)

@lez I have shared resources over the last year here in the Covid LC support group to follow and research and for tests that helped to isolate causation. My most resent post was on LAB CORP for the newest isolation testing you can order yourself. Previously I posted a link to testing for the IgG antibodies that flow through you blood stream so doctors can see if it's 'normal': https://healthmatters.io/understand-blood-test-results/sars-cov-2-spike-ab-dilution

In summary, regarding identification of spike protein:
1. The most important isolation testing started with me and that was just a 'fluke'. For 1 year I used a test strip on the drainage from my sinus cavities which began within 2 mos of first Covid vaccine. Everyday the drainage tested POSITIVE; even after a full year! This issue scared me: 'positive'? I was told I could not spread the virus even with this positive test because it was either revealing I had the antigens after the vaccine or I had antibodies from a 2020 Covid infection per the doctors.
2. Isolation for why this was happening and why I continued to have health decline came from my T-Cell panels. I could write a book about T-Cells from this journey. Basically, my 'fighter' T Cells were kicked into overdrive. Timing for my health decline linked this T-Cell overdrive to the vaccine. Once I asked to have my immune system tested, it was revealed that my killer cells were off the charts. This condition is called T-Cell exhaustion. The T-Cell 'sensors' which monitor invasions were continually being alerted that invaders were on the rise. My immune system detectors sent T-Cell 'fighters' to find and 'blow up' the spike proteins. But T-Cells work as a team and there was one T-Cell that was not being produced in my body after the vaccine: CD8 NK. This is the T-Cell that is the 'safety escort out' or 'remover' of debris from a destroyed Covid cell (or any viral or bacteria invasion). So this part of the immune system was dysfunctional; almost non functional. There weren't enough of them to transport the dead spike protein fragments blown apart by the destroyer T-Cells. This meant there was little to no safe 'flushing' or removal through normal process of bodily waste. So, spike protein fragments that had been destroyed were left behind. No transportation exit, they were stored in my sinus cavities (yellow ooze) and later 'stored' in my fat cells and various parts of my body; in my gut, likely my muscles and in my liver. Looking back 3 years, without doctors understanding what they were seeing, when I would go for my annual physical after the vaccine I suddenly began to have 'white cells' in my urine when in the past my urine was always clear. I had a history of kidney stones so this was a path they followed for year, but the kidneys were clear and I kept testing positive for white blood cells in the urine.

There were 'additional tests that involved the gut (more blood work, liver imaging, fibroscan) but that is another aspect of this journey as it relates to how the spike fragments have remained in my gut once they drained into my throat from the sinuses. Humans all release 2 pints of brain liquid debris directly into the sphenoid each day. Mucus drains, entering the stomach (some people spit it up but when you sleep it just drains quietly). By this time my microbiome system was totally trashed so depositing spike protein fragments in my gut made it worse. As I mentioned, I did not know at this point it was likely I had C-Diff from all the previous anti fungal and antibiotics I had been given for 1 1/2 years.

I posted this in one of my previous posts in the group: 2 doctors in California that work in research made a discovery that there were 65 totally different 'fragment' spike proteins being found stored all over human beings bodies of LC sufferers. It takes a special test, it costs $2,000+ to find these spike protein fragments in humans and insurance does not cover it and you can only get it in places like research labs. So it was unlikely there would be 65 different solutions to seek out and find and remove them safely from my body.

3. I traveled the more obvious path of working to restore my bodies ability to make more CD8 NK cells in hopes I could begin to 'remove' spike protein fragments destroying my body. Local doctors rarely know solutions or for that matter did they have a patient with LC; so I selected a natural path to assist. I took a study with me from a European lab that had 'isolated' the spike protein fragments and I was told, I had been having an allergic reaction to the spike protein and its related fragments left in fat cells and not being 'cleared' out; it was an event that began with the vaccine based on my extensive time line documentation. Glutathione was recommended. I wrote about glutathione benefits in other posts. There are also naturopathic options for direct NK cell improvements.

I hope this provides assistance for you when having discussions with your doctor. If you are up for many days of 'technical reading' this link was exhaustive but it did open my mind to 'options' and to a better understanding of Long Covid: https://www.nature.com/articles/s41586-023-06651-y_reference.pdf

pattig09 | @pattig09 | 11 hours ago

In reply to @lez "@pattig09 Thanks for this. Very interesting. Do you mind sharing more re the sinuses? How did..." + (show)

@lez This is the medical journal paper from Dr. Stringer on the findings for 65 different spike protein fragments as of Aug 2025. Nothing published since last summer and I don't know if they lost their funding for this research:
Summary:
"This raises the question: is this just continuing to take out the trash from the COVID infected cell or is this really ongoing replication someplace? I think that's the mechanistic issue that needs to be resolved in future studies."
https://www.sciencedaily.com/releases/2025/08/250811104235.htm

juniper10 | @juniper10 | 10 hours ago

In reply to @suecedar1028 "I'm 2 + years out now... is there anyone that is part of this group that..." + (show)

@suecedar1028 For almost two years, I've had bad fatigue, that, coupled with dizziness, brain fog and shortness of breath, had kept me at home most days. I'm lucky to be able to drive a mile or so to get to grocery stores. My PCP used to dismiss my long covid, but a month ago, during my last visit, he admitted that he now has other patients who have what I have. He gave me some vials of terzipatide, Zepbound, and I gave myself a micro-dose, a third of the 2.5mg vial. My fatigue and dizziness got much worse and I could hardly get around my house and could not drive, so I gave up on GLP-1s as a solution.

In the past two weeks, I've been trying tributyrin and prebiotics, and my GI symptoms are much improved. I'm hoping that an improved gut leads me to less fatigue and other symptoms. And I'm also trying a TENs unit and other treatments on my vagus nerve.

juniper10 | @juniper10 | 10 hours ago

I've read that beta blockers might cause unpleasant side effects in some POTS patients, according to the Cognitive FX website https://www.cognitivefxusa.com/blog/hyperadrenergic-pots-symptoms-causes-and-how-to-treat-the-subtype-most-doctors-miss . I believe they have a list of drugs without bad side effects.

ksprech | @ksprech | 7 hours ago

In reply to @suecedar1028 "@juniper10 Hi, I'm so glad that I've discovered this forum. I too am tired of others..." + (show)

@suecedar1028 my health started going down hill after my 2021 second Covid shot. The left side of my face began flushing and has never stopped. My left salivary gland was swollen for four months. I felt like I had a fever off and on for those four months also, but when my temp was taken it showed no fever. Long story short, that's when my Mast Cell Activation Syndrome began I believe and every time I get the flu, or any virus my health gets permanently worse. But I've just discovered all these symptoms I have (flushing, itching that begins and ends spontaneously, bloating, edema, fatigue, brain fog) are those of Mast Cell Activation Syndrome. I started the first line treatment of zyrtec and pepcid taken together twice a day. After a few weeks my face flush was fading, gut bloating significantly better so I've read if symptoms improve from this it is likely Mast Cell Activation Syndrome. Unfortunately, to get those results I had to take meds twice a day and I started having serious short term memory issues so I had to stop. Memory issues are improving since stopping about a week ago. Now I'm on the hunt for someone to prescribe cromolyn sodium, the next most common treatment for MCAS. I was very active prior to that 2nd covid shot, but was required to take it because I work in a healthcare company. Kim

Please sign in or register to post a reply.