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

@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.

@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

@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

@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.

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.

@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

@pattig09
Oh my goodness! Thank you so much! I didn't expect you to take so much time for this detailed response. Very much appreciated !!

@pattig09 I’m confused on what you actually had done to relieve your symptoms. Surgery? Treat your immune system? If so, with what? Thanks for sharing

@bentstiks2 FIRST step was to focus on the factual evidence for pain in my body; where and when did it begin: I had Covid D in March 2023 resulting in yellow nasal drainage testing positive within weeks of taking a vaccine. And, why was this still present and testing positive for Covid a year later? The doctors were explaining they found my symptoms 'confusing' and unrelated AND they didn't know where to start. Within a year and a half, logic pointed to the 'yellow ooze' drainage as the starting point. When surgery was complete and the yellow drainage stopped. That surgery an antibiotic caused C-Diff which interrupted all healing processes. But, not having yellow spike protein fragments coming out of my sinuses made it possible for doctors to actually 'see' each unique symptom remaining which needed to be treated individually. For example, Covid D took away my smell and taste, but sinus surgery did not bring it back. My taste buds had been damaged and spike proteins were being stored in fatty tissues of my tongue. Nicotine patches brought back my taste and smell, but surgery did not. I interrupted the ACE-2 inhibitor invasions by covid spikes but surgery would not have done this. Then there was the separate issue of a destroyed gut system not caused by Covid D. Nearly 2 years of chronic Antibiotic massive treatments were the actual cause of mid section pain that made me feel like I was dying; it was not Covid that caused this pain. Covid certainly complicated it when the fragments hit my stomach and moved into my gut. Once that was isolated in the gut and cleared out, the sinuses which had already begun healing after surgery began a much more a rapid healing without C-Diff. The liver damage isolation came after the sinuses healed, after the C-Diff was eliminated. One day at a time for restoration of my liver. Glutathione was for me a miracle as it allowed me to get a full 8 hours of sleep, change my body aches in muscles and joints. While these are just words, they mattered to me: Don't just treat the pain, treat the symptoms. The key question: where to start? I wish all Long Covid sufferers the blessing of finding the medical professional that listens to you, reads what you present for ALL symptoms but as 'individual causation items', and focus on how to treat you using facts that have begun to surface in the world of medical research labs. As an engineer I just need to understand what happened to me.

@ksprech I am so sorry Kim. Though are symptoms vary, it is all a TRAGEDY! Like you I was very active pre-covid vaccines.
Someone should be held accountable for our many disabilities. This is absoultely NOT right!!!
How does one go from being healthy and active to disabled without cause with any real understanding by the healthcare professionals. I always say that I feel as though I'm starring in a sci-fi horror flick! So sad 🙁
My prayers go out to us all that have been stricken by this horrible monster.