Post COVID for 21 months now and still declining

I’m looking for some help, some reassurance, some support anything really. My wife is 51, she has many underlining health issues: diabetes, epilepsy, and the most severe rheumatoid arthritis. She got covid in April of 2022. It was mild cough for a day, tired for 2-3 days done. About 3 weeks after she developed ringing in her ear then what she describes as white noise in her ear, and dizziness. Then she had her first episode of complete confusion, blacking out and not remembering several hours of time. She will talk not like herself, her eyes are almost always closed, she acts as though she has dementia, she agrees to most questions asked even if not true, and states she is tired. After a couple trips to the ER by ambulance, CT scan, lots of blood tests, EEG (while in an episode) and a MRA of her brain, there have been no findings. We can only assume she is a long hauler. I’m looking for anyone else experienced any of this. She will sleep all day long and still be tired. Her timeline of episodes is as follows: she had one on a Monday and then on Wednesday of the same week. The next week it was on Tuesday. Then she went 9 days and another on the following Thursday. Then she went 10 days and had another the following Monday then again the next Monday and Tuesday that brings us to present day. Has anyone else had a family member who experience this? Is there something we can do to help her? The neurologist wants her to see a psychiatrist thinks she’s disassociating because he has no other explanation. She has been through a ton in her life she is not disassociating. Help support please. She has always been an independent, hard working, self sufficient woman. We live in a small town in Maine.

So sorry to hear about ur situation. I had a mild case in June, 2021 & was misdiagnosed for 16 months with food poisoning. I never had a fever, cough, loss of taste/smell, etc. We were on a lot of preventative supplements so Covid apparently went to my gut instead. In Nov of last year, I saw my first Covid doctor & blood tests confirmed I had 5619 in Covid antibodies. Over the past year, I’ve seen a total of 4 diff Covid MDs/experts. It takes a lot of trial & error, even with various doctors’ protocols. What works for one might not work for another. If ur doctor doesn’t have you on supplements such as Augmented NAC, Bromelain, Nattokinase, Vit C, Curcumin, Quercetin (or the off label equivalent which is stronger)…you’re not going to rid ur body of the Spike Proteins which are most likely causing the havoc in ur body. My antibodies continue to decline but I’m not there yet. If you can afford a Concierge doctor (doesn’t take insurance but all blood tests are covered), I highly recommend teledoc, Dr Syed Haider (MygotoDoc.com). Also, he does a Q&A every week on FB where anyone can ask questions. I’m finally improving & am hopeful I’m on the right track. Hope you & everyone else finally find the right combinations for healing as well…

Been there, done that!
Low dose nicotine patch has been a large part of my recovery! It was recommended to me several months before I tried it from someone who had success with it. I know it sounds bizarre, and I was skeptical at first, but it's been a game changer for me. To investigate further, I joined 2 social media groups on Facebook 1) Renegade Research - - #TheNicotineTest . 2) Long Haul Reset: Long Covid & Spike Injury Treatment Options. I copied the nicotine link below. There is an overload of information in both of these groups that can be overwhelming, but they have certainly provided me with beneficial information and links.
https://linktr.ee/thenicotinetest

I am so sorry for all the pain and stress you are going through. I haven’t been officially diagnosed as long hauler as my tests come back normal and my oxygen never dipped low similar to your story. However, I still have on and off muscle pain in legs and really not sure what’s causing it. I am finding some relief with a low histamine diet. No gluten or dairy or alcohol. Interestingly, I tried goat milk last week and after a day of drinking it my leg pain came back. Milk can trigger inflammation so I’m thinking I may just permanently give it up. My seven year old daughter has been having stomach issues waking up in middle of the night since she got Covid and when we went to pediatrician the dr suggested eliminating milk. We have done that for a few days and her pains are away. Covid is so novel that there is so much drs don’t know. I’m finding that I’m getting more helpful guidance from other folks with post acute symptoms. I do drink a ton of ginger tea and chamomile and peppermint. I also drink lots of water. I try to cook very plain foods and eat lots of greens. They seem to help. I haven’t tried this but many long haulers suggest doing H1 and H2 blockers like Allegra/Claritin/Benadryl and Pepcid AC. That is supposed to help with inflammation and histamine reduction. I also started wearing compression socks and leggings. That’s helping me, too.

It’s hard to manage and stay positive with chronic pain but I’m finding this moderated group helpful for me.

I am 67, 2 yrs and 1 month into long covid. My husband and I caught the Delta Nov 2021. He was bad in the lungs, all I could do was try to keep his oxygen above 83 . I smoke. I got it in my guts. No help, we thought we were going to die. He was doing better after a few months. The horrid unrelenting pain in my guts, the neurological imbalance, uncontrollable shaking outside, inside tremors, vertigo, skin rashes, horrid dry mouth, extremely dry skin/changes, sores, hot sweats/cold clamy, tinitus, chills (no fever now), hypertension, anxiety/depression (dealing better with after 2yrs). No appetite, food tastes bad (I could smell chemicals in bread and any king of meat smells horrid. I smell everything and extra smells. Really bad memory loss, can't function as well. House bound. Don't drive....Most of everything that most long coviders are going thru. Along with being told that you are fine. And your crazy. And nobody believes you. (Acutally 1st urgent care Dr said dementia, psychosis...go home, put on a tube top and get some sun.) ;(
At 120 pounds in 2021, had muscles, was healthy, happy, not on any meds. Busy on our small ranch, cows, chickens, garden, greenhouse, sewing, guitar....we built our house with our hands....and now I am a shell of myself.
In the first months of all day everyday pain, I would have bouts of not being able to walk for weeks...like paralyzed. Kept coming and going. My husband kept saying it was like I was full of toxins. Felt like my liver, spleen and kidneys were swollen. I have bled 11 times from the beginning of covid until the last time this June, 2023, bright red over 1/2 c. each time. And not that I was going to the bathroom, like my body had too much blood and had to purge. I had endoscopy and 2 colonoscopies, didn't find the cause. (xrays, ct)
The jumping shakes came about March? this year, so horrid, very pronounced uncontrollable body movements (heels come off the gtound). I had a blister looking thing come up on my forehead at month 4 (Feb 2022), they took out rare cancer, a typical fibrothomax this June. We both had covid toes.....I have had covid tongue 4 times (and coming back again!). The first time (Dec 2021) was horrid, white coating, swollen so bad I couldn't eat/talk, blistered, still have crevasses down my tongue. That's when I went to about 90 pounds, still fluctuating. I am at 99.8 right now (yay). I'm up in the middle of the night, every night still, with gut pain/burn/sweats for few hours (at least its not all day/everyday, since about April this year), along with the shakes, not walking straight, running into things, my legs give out, twitches in face/hands/feet (some days real bad). I try to stand still.....and my body sways front to back, like rocking on a boat...if I sit still its not so bad. If I move fingers/feet or face movements....they move 3 or 4 times instead of once. Per my research....I have been on protocols. Or I might not be here now.
I had rare case of mono at 17, went from 120lbs to 89,hospitalized 2 wks, red/body swollen, 106 fever, hep A, swollen liver/spleen, comatos for 6 months.
I also have history of Varigate Porphyria in my family. Which is extremely hard to diagnois. But has some of the same symptoms.
Did I reactivate EBV........Or did Porphyria get jump started for me ?????
I did get urgent care to do an EBV test April this year
IGM was < 36 ; VCA IGG high 632 ; EBNA IGG high 281
Porphyria is very difficult to find and the test was not done correctly. Too complicated.
NONE of which are good outcomes......am I in a cytokine storm.....
May of this year, I found a telemed (thank God) who has been trying to help me. Naltrexone has helped w/jumping shakes and with focus/anxiety. Now I remember why I am so angry. Got two back to back bad colon infections, er twice this summer. After metro/cipro 2 wks the first time....I was hungry for 18 days and ate. Got the second infection...amox/clav one wk....hungry...ate. Then back to where I am again.
Trying to see a neurologists and hemotologist at this point.
Telemed and IV therapist decided we are going to try 3 sessions of NAD+, glutithione and B vitamins in IV. Then try Methelene blue after that if needed. I want my life back........
Praying for us all.....