FYI research on Long COVID

O My! I am living what I believe is Vertigo. Like a roller coaster! Up and down. Starting PT next week. So far, only support has been extensive scan testing of brain and blood flow. All and I mean ALL medical responses have been “I Dunno”. Please keep us posted on your journey.

@diverdown1 Thank you for posting. My Long-Covid trip began in May of 2023, roughly 2 1/2 years ago. Yes, I agree that this disease/infection/condition is a bit--. Hang in there. I didn't realize it, but I've made significant improvement in the last 2 1/2 years. My main symptom now is needing at least 9 hours, and often 10 hours, of sleep. My record is sleeping over 12 hours with about 9 of that continuously. It is hard to live a normal life when so much sleep is required. I do hope everone with Long-Covid can find a sympathetic medical professional who acknowledges that Long-Covid exists and does enough research to know where and to whom to refer the patient. There are getting to be more and more knowledgeable doctors. I happened to find that a new neurologist who had joined a nearby large medical clinic had done a research post-doc studying Long-Covid. Good luck in your search. I hope you can find a caring, knowledgeable professional soon.

@joanland - It's been 6 years since my 1st covid 19 infection, it lasted for months. Took 1 year before my taste and smell came back, but has left me as well with the inability to ever feel rested. I too sleep upto 10 hours, awake still exhausted. I also got something more rare from my covid experience, "Myoclonus" which is basically is the involuntary movement of the limbs of the body, including neck, head, arms, legs and hips, they all start moving any time I try to be still, and start ticking every 1-2 seconds. I have seen 2 different neurologists, had every test known they do, and everything comes back normal. I have tried all the drugs and I have adverse reactions so those are all out. I have recently found studies on the benefit of using Nicotine Patches (7mil) and within 2 days I noticed small improvements, longer times betweens the ticks, now up to 45 seconds. Look into it. It's proven through medical studies to improve long covid and other symptoms. What did you do to improve your sleep?

@84forward
I’ve had vertigo for over 20 years, but it was never bad enough to need more than Meclizine until I got Long Covid in 2021. In 2024, my ENT finally recommended PT for vertigo. I’ll be honest, it’s hard work and wore me out every time I went for 8 weeks. But it worked!! My Vertigo isn’t completely gone, but on the rare occasion when I get it, a Meclizine takes care of it. I hope it works as well for you as it did for me!

@rzn8 my sleep patterns are 10 to 12 hrs at night plus a 2 hr afternoon nap. however some nights there is no sleep at all. Even with the 10-12 hrs of sleep, fatigue and vertigo continue to rule my life.
First Covid was Early 2021. Second Covid bout was August (last week). Rough, latest 7 to 8 days —- all just days prior to 2025 Vaccine was available. Never recovered and then received the Long Covid diagnosis in October. November = pneumonia. December = bronchitis + awful bone rattling cough. Fatigue never abates. Vertigo appeared in Vertigo and continues to clothe my life like the grim reaper lurking in the shadows.

@rzn8 This is what I found on Mayo Clinic's research about why the nicotine patch works on many symptoms: The pathology of the spike protein is that it attaches to ACE 2 receptors and nicotinic receptors decreasing the ability to be released and metabolized. This causes overall inflammation throughout the body. Clotting cascade occurs leading to micro-clotting and hypoxic tissue causing cellular dysregulation. Anti-body response increases spike antibodies that also cause inflammation. Goal of therapy is to help release spike protein from cells, decrease overall inflammation and address micro-clotting with a layered treatment approach.

My dermatologist assisted me in using this protocol with success. She said the low dose nicotine interrupts the spike protein 'hanging on' to our ACE 2 and nicotine receptors which sets up the 'flushing' of the Covid elements. It is our bodies immunity that tried and failed to do this so the nicotine solution assists with this clearing. Perhaps you can find a doctor that will help you with the 'how to' processes to release spike proteins that continue to be attached to you cells after all these years. There are 2 tests your doctor needs to do:
1. Complete T-Cell work up to confirm an overactive immune response, and,
2. SARS-CoV-2 Antibody Profile Test: CoV-2 Antibody Profile. Looking for Spike AB Dilution (normal range < 0.8 U/ml). (Note: some patients called this test D Timer. Test looks for micro-clotting and provides a 'numeric value' for bloods spike protein counts. Mayo Clinic reported in their studies most LC sufferers had counts of 17,000 to 25,000.

@rzn8 I’m sorry you’re suffering so horribly! I was wondering if you were told anything about having SBG Injections (Stellate Ganglion Block) injections? I have had 7 and had horrible body tremors that left my body after my 7th injection. They are injections of Lidocaine into your Parasympathetic Nerves in your neckline area. They’re suppose to shut that part of your body down temporarily and then when it awakens, you’re suppose to feel better. I used it for loss of taste and smell, but that didn’t happen. My body tremors are pretty much gone now, however. I think you might benefit from these. I had mine done at Northwestern Chicago’s Pain Management Clinic. I still am without taste and smell and this is year 4! I am also wearing a 7 mg Nicotine Patch and it has helped with balance and brain fog. Just a little FYI. Much luck and health to you!

@84forward
You might look into Meniere's disease. It causes vertigo dizziness, a feeling a fullness in the ears, and in some cases hearing loss. It’s caused by reaction to gluten. I bring this up because since getting along Covid, I can’t tolerate gluten. Gluten seems to be a frequent issue for other folks as well.