Mastodawn

Moonlightsiesta Apr 28, 2022

As a person with a current investigation into autoimmunity and knowing how ridiculous public health has become I’m a li’l nervous. Managed to avoid (symptomatic) Covid so far in our household but the unsustainable whack-a-mole happening around the world doesn’t bode well for the future.
And yes, I know immunity doesn’t drop off immediately but I’m allowed to be concerned about waning protection. Covid is largely governed by human behaviour and for the most part we suck.

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

I know how you feel and sending you warm thoughts. I'm investigating the likelihood of MCAS (which I think to be high). I managed to avoid one case of symptomatic Covid (my partner). He isolated in the bedroom.

I have pretty much cut myself off from the world since everything began (and I'm lucky that I can), but my kid brought it home from school. And it's likely to happen again and again.

Moonlightsiesta Apr 28, 2022

@Elli_the_Autistic_Harpy I’m glad you’ve managed to avoid so far. Hope that continues but it’s looking like the majority of people accept it’s going to keep circulating but are happy to do nothing about it. I’m so sad for the kids and the world we’ll be leaving them with. Probably won’t know full consequences for a few more years. I’ve heard about MCAS, scary stuff. What tests are they doing to investigate?

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

Sorry! My first reply was so lacking!

I avoided the first round (when my partner came home infected), but not the second round (when my kid came home infected). I'm currently recovering from an infection that started last week. Which came from school via my child. Still testing positive, still some symptoms nearly 10 days later.

I really worry about the same - we know little about the long-term consequences of infection.

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

What we do know is that repeated infections, which are going to happen given the virus' continued circulation and awful public health policy, seem to do our bodies greater progressive damage.

There also seems to be a mechanistic link between long COVID and MCAS. Several doctors with experience treating MCAS are now also treating long COVID patients.

Moonlightsiesta Apr 28, 2022

@Elli_the_Autistic_Harpy it’s sad how quickly this became outdated and frustrating how much they’re ignoring all these mystery cases of viruses popping up. Apparently it’s all just coincidences and not because we fucked around and will be eternally finding out. And it’s been disappointing how much people have made hope a crutch rather than being cautious and not ruling things out. Actual medical professionals and scientists

Elli the Autistic Harpy

@moonlightsiesta

No need to apologize about the info dump. Sending you warm thoughts.

Dealing with chronic issues is so frustrating. I grew up in the US, and my parents were particularly attentive to me and my siblings. Except my brother, who had really major medical issues. I think that was so much to deal with, there wasn't energy left over for me and my sister.

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

You might consider looking more into MCAS. It also exists on a spectrum on severity. Have you been evaluated for EDS? The sensitivity to bruising could be indicative of that. Furthermore, MCAS and EDS often co-occur.

Here's a link to a video that I found useful by a main doctor in the field. In short, when there's a multisystemic reaction (definitely true for you), it is worth considering MCAS.

https://www.youtube.com/watch?v=cX6uZKInI7c

Dr. Lawrence Afrin Discusses Mast Cell Activation Syndrome (MCAS)

YouTube

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

And the sensitivity to water is something that I've read about before. Also people being sensitive to hormones, like those in birth control pills.

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

It is also interesting that you mention intermittent fasting. That's the same solution that I arrived at to deal with digestive issues. I'm also taking antihistamines regularly, which has helped a bit.

Moonlightsiesta Apr 28, 2022

@Elli_the_Autistic_Harpy I’ve always had terrible hayfever but it got better since I got cats & moved 2 a newly built, bright building. I have tried to avoid taking antihistamines too frequently because my body seems 2 get used 2 them fast. I generally only take them if I know I’ll b dealing with dust. Robot vacuum is a godsend. I love fasting but I’ve been trying to start on enteric-coated peppermint oil capsules and you have to take them 3 times a day with food :(

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

I always wear my mask when dealing with dust. That's the one of the "true" allergies I tested positive for - dust mites. We also use a robot vacuum!

Moonlightsiesta Apr 28, 2022

@Elli_the_Autistic_Harpy I was thinking of doing that scratch allergy test but I’m afraid it might just overwhelm me lol. Have you had them?

Elli the Autistic Harpy Apr 28, 2022

@moonlightsiesta

The allergist started by doing blood tests, which looked for IgE-mediated responses to a variety of common triggers. My only such allergies were to dust mites and animal hair. Nothing food related. She would have done the scratch test to confirm anything that came up in the blood test.

Moonlightsiesta Apr 28, 2022

@Elli_the_Autistic_Harpy thank you

For the longest time I’ve kept stuff to myself because I didn’t want people to get the wrong idea about vaccines. Also I grew up minimising because mum had too much to deal with. Mum is a hard one. Lots of physical and emotional abuse that she passed to me as well as physical problems so I’ve never had family. But I’ve been very lucky to find my cats, partner and a great boss. My fiancé’s family welcomes me ❤️

Moonlightsiesta Apr 28, 2022

@Elli_the_Autistic_Harpy sounds like we’ve both missed out on a bit. Sending warm thoughts to you also. It’s nice to talk to people about stuff beyond the surface.