Mal

🚨ALERT🚨

Trying not to be alarmist, but I am seriously very concerned by H5 wastewater detections that CDC posted today in New Jersey. Multiple sites with distinct sewersheds in the Newark/NYC region are now all independently reporting H5 wastewater detections:

Sorry you have to deal with so much hate. I think you're great and I hope you get this sorted!

A Chronic Illness Christmas When you're chronically ill, the holidays can be lonely. Feelings of guilt are common. A look at how to set boundaries, support other disabled people and a reminder that you're never alone.

My Chronic Illness Christmas article dives into feelings of loneliness, guilt and gaslighting that many of us deal with at the holidays.

It has tips for friends and family to help make it an inclusive and safe holiday.

I hope it also includes some hope and helps someone remember they’re not alone

I'm getting close to 5 years (pasc/me/CFS), and haven't gotten conclusive test results about anything. Even a normal (but high end of normal) result at the tilt table test, but it took me days to recover from that outing.

Of course, you cannot talk about PASC without talking about reinfections. Every infection is likely to make your current symptoms worse, with the possibility of new symptoms. Limiting contact with others, masking in public spaces, and eating at home or outside are your options for avoidance.

I take famotidine daily. It helps with my stomach, which otherwise gets very acidic and causes discomfort. PPIs are the only other thing I've found helpful, but long term use is bad.

Whoops, Nattokinase. Enteric is important. When I've tried non enteric natto, I haven't felt any difference, but with enteric, I don't start dragging quite as much around 2-3 PM.

I'm currently taking a long list of medications and vitamins, and I often wonder why as very few things do much, but I continue to test different things and hope for the best. I do think pregabalin is helping with some symptoms management. Serrapeptase + Nattokinaae (enteric) is also great.

I manage to work full time, remote, despite this. My brain is exhausted after work in a way I never experienced before, which also leaves my body tired. I feel extremely fortunate to be managing this, but also frustrated that I can't take the time off to heal. I don't know if that would help though.

Brain fog. This has been pretty manageable for me for the last couple of years. Back in 2020/2021, this was much worse. In 2021, I started on duloxetine, and on a low dose, it got much better. After stopping, the mental benefits remained. However, it does come back with PEM.

Pregabalin has helped with this some. I have a higher heat tolerance now than before, but it still can trigger pretty easily with stress and activity, another reason I tend to stay home and avoid driving places.

Pins and needles. You know when your foot falls asleep, and you try walking, and you feel pins and needles shoot through it as you try to wake that up. I get that throughout my whole body. The primary triggers are heat, stress, and activity, and they compound on each other

My doc and I are testing pregabalin and oxcarbazepine, but running out of ideas for how to make this better. It's mostly been life adjustment and management. I've reached out to a lot of people dealing with PASC or ME/CFS, and have only ever found a couple people with similar symptoms.

I have extreme skin sensitivity. It started almost immediately after recovering from acute covid symptoms in 2020. Cotton feels extremely rough, similar to what a burlap sack might feel to you. This is very debilitating. the more I do, the worse it gets. I wear bamboo clothes almost exclusively

By comparison, in 2019, I did multiple sports and was in excellent shape while also keeping up with my kids. Winter 2021 was the last time I tried exercise, recommended by my doctor, and the flare-ups were excruciating. I remember one time being bed bound for a day or two, and worse off for a week.

First and foremost, I deal with PEM/PESE, which I manage primarily by almost never leaving home. I consider myself fortunate to not be bed bound, but short outings have consequences for me for typically two days after. Not only do I feel extra tired, but my other symptoms are also worse.

It's cool to see more people jumping over here. I haven't been posting lately but I intend to talk more about my experience with Long Covid/PASC/ME/CFS. Since there aren't enough studies happening, I have tested what I have access to on myself and found some helpful things, but not much.

An exciting development for a new Covid vaccine: inhaled single dose induces strong mucosal immunity and protection in multiple species, including non-human primates, and prevents transmission across all variants assessed
nature.com/articles/s41...

Today's editorial on the new #LongCovid study
www.sandiegouniontribune.com/opinion/edit...
In-depth review here
erictopol.substack.com/p/long-term-...