u/_PlentyO_

Quite literally right after I escaped the abuse of my parents, my health went downhill, especially after my MCAS got way worse after I contracted the C virus back in 2022.

I don't even have a doctor to help me with anything. I had to figure it out by myself and with the internet over years.
While I do have some interventions via antihistamines and mast cell stabilizers now, I feel exhausted and like I missed out on building a social life and a career I actually like.

I was isolated as a child, and now it simply continues.

For myself, I solved the puzzle, but the world is quite a hostile place right now, and I can't find a justification to keep going.
I tried to do so many things. I learned cooking, heavy lifting, running marathons, building things, learning about longevity, tried learning something cool and socializing, I tried this and that. Each time, my health took it away.

This part might be interesting:
In this subreddit, I quite often see someone mention methylation and Bartonella, and I indeed found multiple methylation bottlenecks and a positive Bartonella IgG from a blood draw.

It would be interesting to discover whether this is a common route:
methylation bottlenecks + Bartonella infections + COVID-19 = MCAS

But idk, I am so tired, and I have carried the burden of my life all the way with a weak social support system.

Please let me know if there is anyone who also feels like this. My social circle doesn't understand this state of life at all, and I would love to finally connect with people who are in a similar situation to spend time with at our own pace.
It would be amazing to build some good friendships with people who genuinely see and understand circumstances like that, and I believe it would make life so much more worth living.

I swear I am not boring to be around, but with conditions like this, time spent together means that instead of partying for 48 hours at a time, time is better spent in smaller but consistent portions and maybe some days are "MCAS" days.

Maybe anyone based in Germany too?

Please excuse that I am all over the place today. I just had to get this off my chest.

Hi there,

Recently, I thought to me how much of a burden it is to be thrown into the responsibility to research and find out how to improve one's from chronic metabolic conditions such as long covid, methylation, cfs, pots, pem, anxiety, mitochondrial dysfunction... (I believe they all are very interwined). It is just hard and exhausting grasping all of it sometimes, and often getting hold of useful information in the first place and sort it out.
Feels like being stuck in a maze, searching for the exit for months or years even.
Information is scattered and buried deeply sometimes and people have to connect small pieces over time.

Maybe we could benefit from a public graphical overview, like a community made diagram that we can get more potent impressions with of what people agree upon: maybe triggers, causes, mechanistics, treatment strategies/paths, experience reports, studies, etc.
I figured I would make a website that would allow a community to structurally suggest and democratically vote/discuss suggested edits of a public diagram.

So I made a prototype with all this in mind which can handle a lot of connections and added lots of extra features on top.

But I don't know how to proceed from here and whether it is perceived as helpful by you in the first place.

If you seem to like the core idea, I'd probably be fine to crack open my piggy bank and host it for you to play around with and share your thoughts or feedback.

What do you think? Could we benefit from this?

Thank you for taking time reading through this post!

I feel hopeless and isolated, I need friends

Should we create a big diagram together?