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.....

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