Living with LPSVS (long post-COVID vaccination syndrome)

On the 5th anniversary of the largest most damaging regret of my life. Here is my story. In 2021 I was 41, healthy, active, happy, horny, no history of headaches ( genuinely to the point where I had great sympathy for anyone who got headaches for the few I had prior.) 5 years ago today I got my first Pfizer shot, I had to go to 4 different pharmacies to get this and was crying because I wanted nothing to do with it. I had referred to it as the cancer shot. Never had a flu shot. Refused to ever see any type of PCP, my opinion of the industry less mechanical repairs was low at best. I got that poison shot into me, labored that day, sweat so much there was no dry item of clothing on me. Next day I was out getting my weekly burger with a friend and thought i was going to drop dead right there at the bar - burger only i don't drink. I was able to get my wits about me, took a walk with a friend to ensure i could drive home safely. Then the headache came... Then the fatigue... Then the fog... Then the sensation of being high, but in bad way from wake until "sleep" if you want to call it that. I read all 19 pages of this, and only a couple people mentioned the headache. Anyway as to not write an entire novel. 1 year after I got those 2 pfizer shots I was on vacation for concerts and I caught a cold. I've never been tested for covid because after that first shot I realized the covid tests could well have been dosage of something also. Beyond that they were never accurate as far as I could tell. None the less, i was sick, proper sick, in bed for 2 days sick. Yet on day 2 i woke up and the headache was gone, the fatigue was gone, for all intent and purpose I was myself again, although incredibly paranoid that it was going to return. That was the longest remission I've ever had. It lasted from August to January. I got sick again after Christmas, and day 2 I woke up with my partner the headache. That was January 2022. Since then I've had 3 brief pauses only for about 2 weeks until it started creeping back to crippling levels. My life became a constant struggle to make it to the end of the day. The 3 pauses were post ski trip, post chiropractor ( but only that one time), and getting sick. The subtle difference in the headaches was prior to the first and longest relief it was a headache at my temples. At some point it evolved into pain that feels somewhat external in front of my ears. My head is in a vice, all day every day. My vision keeps getting worse in that I go blurry regardless of what I do. I've been to countless Dr's I have an appointment with oncology tomorrow. Some of my blood work is out of range, no one has made any connections. My PCP is less than stellar, and certainly not at all interested in my well being. I will say reading all these responses is heart breaking, both for myself and all of you suffering. Seems there is no hope, and genuinely no concern. Humanity will continue, the culling was ultimately voluntary even at cost. Every day I regret this, and every day I get a little bit worse. Here is everything that has not made any difference, noting some of these were for other issues which i'll try to note. 1. nsaids - won't touch it 2. doxycycline 2 weeks ( for an eye infection, no expectation, no change ) 3. 12 day taper of prednisone ( pinched nerve, didn't feel anything at all, this one i had some hope for, but nothing ) 4. Vax detox from wellness clinic ( expensive snake oil, nothing at all ) 5. seaweed detox ( more snake oil, nothing ) 6. arthritis drugs from the neuro surgeon ( one of these did help for 20 minutes, then never again, and also gave me heart palpitations ) Not to be negative, but this is not a pretty picture. I'm running out of money to burn on the medical system. Fantasizing about being on my death bed knowing the pain in my head won't follow me is not a great place to be at 47. This has brought me back to Jesus, which is the most important thing that could happen. I was only just starting to live... 2019 was glorious. I threw it all away in 2021 5 years ago today. No support group. Just suffering, shame, pain, and regret...

Jerel, so sorry for your suffering. My experience after three years of searching, most docs and nurses don't have a clue what you are experiencing when you say "long covid" or "post vaccine long covid". I have been seeing a doc at UFhealth in Gainesville who heads a long covid clinic. As rosebookay stated, there is no cure. There is a path for better quality of life through managing symptoms (if you can). I have given up on docs. I have accepted I'm not going to get the life "back" I had before. So, I developed what works for me. I pace myself all day, somedays that means I'm on the couch most of the time, sometimes it's better. That's not the happy ending I was hoping for but I got tired of searching for answers and not living the life I still have. I sincerely hope you find a way to easy your suffering and get some joy out of each day. The hardest thing is to accept there are no good answers right now. Take care.

@mishabear2025 In laymen's languages, NIH (National Health Institute) does work on finding solutions for Long Covid sufferers and these scientists know LC is "real". It's estimated that a minimum of LC sufferers is around 3 Million (and that is just from reports on people who are seeing doctors for solutions). I'm sorry you experienced that 'zero span' support from family. I would offer a suggestion: Have your NP or GP run T-Cell labs on your blood. This will reveal the state of your immune system. It was this test after nearly 3 years of suffering that lead to a path to potential 'solutions'; beginning with symptom relief. Then, if your T-Cell are 'in trouble' ask for a doctor referral to a Infectious Disease Specialist in your area as this group around the US is doing work on Long Covid solutions.

@pattig09 I agree. I am going to my doctor tomorrow. I am going to ask for some extra blood work. I have read, as you know Pattig, research and the Mast T Cells are involved somehow as is the gut microbiome (I believe). 3 years ago, my B12 was a bit low but my folate was off the chart, not measurable. They work together. If one is low the other is usually high. I started B12 shots and then the B12 was normal, folate still off the charts. I did not give myself shots regularly after that. The last blood work I had, this year, my B12 was off the charts and folate normal. What in the _____? Cytokines also were flagged in 2023, so I am going to ask for some extra labs. Tired of this. We all are, I am sure. I am doing my concentration field placement for my MSW and I will be done in August. A 2 year curriculum has taken me 4 years due to this virus and the death of my partner. I keep getting punched. My field instructor does not believe in Long COVID. It is infuriating.

@diverdown1 Perhaps a T-Cell blood work to evaluate the current function of what medical professionals call the complement system. It has a key role in immune responses, infections, or autoimmune diseases. It's a common test and cost if out of pocket is about $250; it is covered by insurance. Have a discussion about specifically C3 and C4 which are typically quantified as key components of the complement system.

Quantification of C3 and C4 helps to:
• Detect causes of disorders in kidney tissue, joints, connective tissue, glomerulonephritis, and vasculitis.
• Identify causes of immunodeficiency related to recurrent infections.

There are doctors who understand LC is real. Some continue to roll their eyes when patients of LC ask detailed and specific questions about tests that can isolate LC. I've been referred to as Dr Goggle in many medical appointments; but that served to wade through the disinterested doctors in my efforts to find the special ones that stay current in diseases. My need to get back to a full healthy existence is more powerful that the 'tsk, tsk' brush off! So keep focused and stay the course to recovery is my mantra.

Here are the levels to compare C4 results:

Normal C4 Levels: 20–50 mg/dl
- Increased C4 levels are seen in: cancer, rheumatoid arthritis, rheumatoid spondylitis
- Decreased C4 levels indicate immune complex-related diseases. These are most commonly found in: Active systemic lupus erythematosus (SLE), rheumatoid vasculitis (but not uncomplicated rheumatoid arthritis, where C4 levels are usually normal), chronic active hepatitis, congenital C4 deficiency, hereditary angioedema

Here are the levels to compare for Normal C3 Levels: 90–180 mg/dl
- Values up to twice the upper limit may be observed during acute phases.
- Increased C3 levels are found in: Acute rheumatism, rheumatoid arthritis, cancer
- Decreased C3 levels are seen in: SLE, glomerulonephritis, septicemia.
- Low C3 levels combined with low C4 levels suggest activation of the classical complement pathway, commonly found in active SLE.
(SLE) is an autoimmune disease where your immune system mistakenly attacks healthy tissue, and it can affect organs like the skin, joints, kidneys, brain, and others.
- Low C3 levels with normal C4 levels suggest activation of the alternative pathway, indicating infectious diseases or renal factor activity. Although C3 levels remain low in some long-term SLE patients, this does not necessarily indicate active disease. A sudden decrease in C3 levels often signals disease exacerbation and an increased risk of kidney damage.

@pattig09 Thank you for this incredible amount of information. I have finally found a new doc who kept doing a dive into blood work and this was just ordered.

@pattig09 Thank you for this incredible amount of information. I have finally found a new doc who kept doing a dive into blood work and this was just ordered.

@jerel Regarding the 'headaches': Have you had an ENT take an image (MRI or CT) of your sinuses? I had the right temporal headaches 4 years ago after my one and only Covid vaccine. Never had any sinus issues my life entire life and seldom a cold, but could not find answers for over 3 years for the headache syndrome. Neurologists ruled out tumor in the head. The ENT found swelling of the Sphenoid sinus. It didn't seem like a large volume swell but it was there for 3 years. For 3 years of headaches, I also had swollen tongue and major nasal drainage (not a cold or allergy which was also tested) and I kept testing positive for the yellow drainage from the sinuses for Covid. Surgery discovered the spike protein fragments had taken up residence (they had set up their own factory) in my sinus cavities closing off both turbinates' and blocking the Sphenoid drains (brain daily drain for things the brain gets rid of). This 'factory' likely happened when my immune system had been trashed by over 2 years of treatments with antibiotics and anti fungals for the drainage and tongue swellings. After micro surgery, swelling stopped and headaches stopped. There was much more to my Long Covid involving stomach and intestines from the years of drug treatments for 'fungi' but when the focus on the nasal passages took center stage, I found solutions to ending the pain in my temples, top of my head, neck and muscles in my joints. Perhaps this will be of assistance. I want to add, there are 2 minerals that I added about 1 1/2yrs ago to my healing process: glutathione and moringa. I have posted about the positive impacts both have had on my health improving.

@pattig09 I too get awful headaches, especially when it’s storming and it’s been doing that on and off for days here in the Chicago area. Tylenol doesn’t really touch the pain. Pain seems to move around from the back of my head to the top and sides of my temples. I’m sure I have Spike Protein in my brain, but not one doctor has tested me for this. Do you know what the test is called? I too have Hashimoto’s with Hypothyroidism and had 18” of my colon removed 4 years ago due to severe diverticulitis. I’m wondering if this isn’t why I’ve had my taste and smell return? Inflammation is the issue, but what to do about it?