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Alisa Lynn Valdés Profile picture
@AlisaValdesRod1
Apr 3 • 6 tweets • 1 min read Twitter logo Read on Twitter
My son Alex ran 18 miles today.

He had Long Covid in 2020, with severed POTS until he got an experimental stem cell transplant that fall. He had a headache for 7 straight months, a rhr of 125, couldn't walk half a mile.

Why isn't the #nihrecover trialing stem cells in LC?
He set a goal for himself of running the length of a marathon by age 22. He is almost there. He will not race in a marathon because of risk of reinvention around so many people.
I did not have the same treatment because we could not afford two. I chose him because he has his whole life ahead of him. I don't think it would work as well in older people due to the relative shortage of stem cells in the bone marrow.
I have been steadily getting worse this year. It is bittersweet to see him recover and know it is unlikely I ever will. I was doing better till Novavax gave me all the new brain stuff.
Severe****
Reinfection

F*ck autocorrect

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More from @AlisaValdesRod1

Alisa Lynn Valdés Profile picture
Mar 29
New findings, 3+ years into Long Covid. My brain MRI yesterday showed small blood vessel disease of the brain, areas of white matter hyperintensities from either ischemia or demyelinatiom. I was in perfect health in Feb 2020. Now I have the brain of an 80-year-old chain smoker.
Before you ask whether I was vaccinated...my problems began in 2020, before the vaccines existed. The virus and my immune response to it caused Long Covid. That said, both Pfizer and Novavax made me much worse. It is both the virus and the vaccine for me, likely spike.
*demyelination**
Read 4 tweets
Alisa Lynn Valdés Profile picture
Mar 25
Long Covid is a disease of the capillaries. Most people I know with LC were athletes, like me. I was a fitness trainer, runner, dance teacher for decades. Turns out athletes have 200% more capillarization than sedentary folks. Maybe the truth is, LC is more common in fit people.
link.springer.com/article/10.100….
People at higher altitudes also have greater capillary density.

ncbi.nlm.nih.gov/pmc/articles/P…).
Read 6 tweets
Alisa Lynn Valdés Profile picture
Feb 28
Sat outside for 2 hours yesterday. Felt burning pain under my shirt, chest and belly. Looked. All my capillaries had burst and I was bleeding under my skin EVERYWHERE. New symptom. TERRIFYING. 1/2
Covid destroyed my smallest blood vessels. Now I can't sit out on a nice day w/out risk of spontaneously bleeding to death because my capillaries are too weak to survive UV rays THROUGH MY CLOTHES. Too many of you still risk everything just to pretend life is back to normal. 2/2
For context, I first got covid in Feb 2020. Long Covid since. Vax injured twice. Been up and down for 3 years but nosedived 2 months ago. Forced reinfections in medical facilities, twice, while seeking care for severe Long Covid issues. Been fighting like hell. Want to give up
Read 7 tweets
Alisa Lynn Valdés Profile picture
Feb 5
Lots of valid Long Covid fears. I hope my experience reassures some.

Gray matter loss year 1. Year 2 normal. Brains can shrink and recover.

B cell deficiency year 1. Year 3, resolved.

Endothelial dysfunction year 1. Year 3, resolved.

New diabetes Year 2. Year 3, gone.
Key to these improvements? A doctor who believed me and tried experimental treatments. Of the many we tried, these helped the most:

Anticoagulant, antiplatelet, statins, h1&h2 antihistamines, low carb diet (keto), b12, folate, iron, vit d, b complex, pycnogenol, quercetin, vit c
Antivirals helped too. Paxlovid, and Truvada. Both caused temporary kidney and/or liver issues.

Milk thistle helped liver recovery after Tollovid messed that organ up
Read 6 tweets
Alisa Lynn Valdés Profile picture
Feb 4
At this point, I have far more friends who are "getting back to normal" and doing just fine with it than I do friends who are "getting back to normal" and getting Long Covid or dying. Even my LC friends who get reinfected are bouncing back pretty easily. Could "they" be right?
I mean, I don't want to get reinfected. But I am starting to wonder if my all-or-nothing complete isolation is necessary. My PTSD from the horrors of Long Covid might have me over-correcting? Anyone else wondering about this?
Also, if I already have persistent virus and never haven't had covid since I first got it 3 years ago, is my fear of getting it again well-founded? I know 2 people with Long Covid who felt exactly the same with reinfection as they usually do. I have no idea what's real anymore.
Read 4 tweets
Alisa Lynn Valdés Profile picture
Feb 4
A moment of my beloved New Mexico...

A rugged and graceful survivor, enduring the winter in Cuba, New Mexico, as her ancestors have done since the first of them crossed into North America 2.6 million years ago. She carries their wisdom in her spirit.

Photo by Henry Dominguez
Humans consider themselves separate from and superior to nature only because a weird book written 2000 years ago makes this absurd claim. In truth, this lone bobcat has more skill to survive, more awareness of reality, than any person zipping past in a truck. She is our better.
How long would any of us last, stuck in these mountains in winter? How many of us would know how to find water and shelter, or what was safe to eat and what was poison? How many of us could go days without a meal and still find the power to chase a meal down with our frozen feet?
Read 5 tweets

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