MTRJ75

RemissionBiome MECFS/LongCovid Self-Experiment @remissionbiome I find a lot of useful and pertinent information posted by them. Often late at night. That is all.

https://www.healthrising.org/blog/2024/03/24/voracious-brains-inflammation-chronic-fatigue-syndrome-conference/

Isn't that what Walter White made? The pharmacist in that thread sounds a loud warning.

The post suggests Klonopin, but I don't know if that's just for the sleep issues.

Though I've been doing much better the last couple of years than the few preceding, there are still a great many frustrations in my limitations and remaining symptoms. I wouldn't necessarily say sleep is as much a problem for me as it has been for some others, but getting to sleep and especially waking up and getting out of bed are often disastrous. I could never figure out why my heart is always still pounding in bed, but this one little sentence makes a ton of sense and let's me realize that I'm not as far along as I thought I was. My sympathetic nervous system is still in over-drive! Which explains many other remaining symptoms as well. https://www.healthrising.org/blog/2024/03/18/unraveled-4-chronic-fatigue-fibromyalgia-long-covid-sleep/

This is an AMAZING thread I came across in my Twitter feed when someone retweeted this two year old post.

I now see they are marketing this product for dysautonomia as well. I don't believe there's a link attached, so I hope this is okay.

I've used neuroprotek before, but as mentioned above....may be too expensive to keep at the expected dosage and didn't change my world for the couple of months I used the product. I believe the Quercetin was the key ingredient in it. What is a NeuroQuant MRI? And more importantly, does insurance cover it?

Muscle weakness, shakiness, difficulty focusing. It varies. It's interesting that I don't really feel the brunt of it until I sit back down most times. One of the latest HealthRising blogs talks about how oxygen isn't getting to the muscles, which may explain some of this.

Somewhat like OP, the standing still for too long and the bending plus standing activities still get me, but I feel like I have a few hours (depending on tasks) of functionality per day. The problem is that I often feel like I can do far more than I actually can and then when I try, I wonder how I thought I could actually do any of it.

I get it. When I tell people I'm feeling better, they think that's it. It's over. I've beaten it. They don't understand that when I say I'm okay, I'm really saying I'm at my baseline today. Not that I'm a perfectly normal and perfectly fine feeling human being again. I often times still think I can do things that I can not. Or that end up having severe consequences. I also wonder when and if I'll be able to cut back/go off some medications and what will happen if I do. I don't know what to say about people who don't understand. I'm still having the same problems within my family and it's caused a strained relationship for more than half a decade now.

I've been given the go ahead to say the device is called a Pulsetto. The price appears reasonable, considering there doesn't appear to be any extra costs, aside from the gel, which does seem like it could be a deterrent. Who wants to have to clean that stuff off your neck every time you use it.

This is going to be a real short post because I'm not sure what I'm allowed to post and many of these type posts end up being edited or deleted, but I saw a vagus nerve stimulator advertised last night. I won't post the name, but it was selling for $229. It was advertised for anxiety and energy, not for autoimmune or autonomic problems though. It's not a tens device and appears to fit around the neck. Anyone have any experience with a device like this?

This is interesting. Can't believe I haven't seen this thread before. I've had a cyst show up on brain MRIs. Not sure if it's pineal or not. Would be really strange if there are a bunch of us with them.

Almost certainly lying, though I could have been tilting or leaning for the initial one. The MRI that cleared everything was lying down of course.

Cardiologist told me that they could put me on a tilt table, but all it would do is make me feel awful without changing treatment plan. I'm curious because when I started having vision issues, my doctor at the time, ordered a scan of the carotid arteries, which was "consistent with a 67% blockage". The doctor thought I had a stroke until the MRI gave a different picture. That was a couple of years before I knew POTS was a thing. And I've always assumed it was the cause of the initial scan findings ever since.

First thing I would ask is if the doctor understands what POTS and dysautonomia are. You'll know immediately if you need a new doctor or he'll at least get you to where you need to go.

Without reading these, are they saying a transcranial Doppler might be helpful (if available)?

I think LDN has made the biggest difference in my case. Thankful neuro was willing. It at least got me from housebound to be able to occasionally leave the house now. Still having significant problems with exercise though.

50K per week (7K daily) is still a healthy dose. I've gone as high as 10K per day for a few weeks when I was really low, but yeah, you should be showing something after a few months. I had no idea that Vitamin D even came via prescription.

Mine is low, but goes up pretty quickly with supplementation. And 50Kdaily is a whopper of a dose. Are you sure the product you're taking is high in bio-availability. Most progressive docs I've spoken to prefer a liquid supplement (under the tongue) to pill or capsule form.

Yup. That sure is expensive. Worth it if it works though.

Our symptoms are so wide and varying that maybe it doesn't matter what they call it. Maybe we all feel like we have things going on that they don't even have a name for. We basically have an idea what's going and it's more important to me for them to treat it all than to sort me and put me in a box, which could cause more problems than it solves.

Whenever something new pops into my head or I see something online that I want to bring to the attention of my doctors, I put a note in my phone. I have a different note for each doctor. You can also take notes this way at the appointment. I've frequently asked doctors to write stuff down for me too. There are now actually medical coordinators that do this stuff and more for patients for a living, but it does not seem to be a covered expense.

I'll inquire about that the blood sugar for sure. Have a couple of appointments coming up this month. But would the fact that I only have issues when I pull a muscle work against that?