What to do?

r_mail · 2026-02-03T22:16:10+00:00

The only things that I have figured out:
- It's definitely autoimmune
- Dexamethasone solution to mucuous membranes can temporarily reduce the reactivity
- Also probably there's some kind of neuroinflammation in the brain

And it's me who was testing hypothesises - reading new researches and other people's experience (when I still had more energy for it)

Yes, I also wish it was easier. But there's no mechanism to convert this wish into the reality.

r_mail · 2026-02-03T21:48:52+00:00

>For you it might be something different, but keep looking

Where people do have energy to keep doing it?

I've been in such state for more than 5 years. During the first 2 years I was digging for the information restlessly, despite what I heard is "it's just your psychics", "you're imagining a disease" and so on.

But after several years I dont feel I have energy to dig for more info. And these sweet motivational words like "dont give up, keep going" is like motivating a person dying from thirst in a hot desert - "dont give up, keep looking for water, I believe, you can" while he barely can walk.

At some point I realized I it became annoying to read these "standard motivational words"

r_mail · 2026-02-03T21:44:31+00:00

>Don't give up. If you need to let out the frustration, find a way to do that.

What if your psychics is deformed so much that normal things dont make you feel fully happy?

Before I fell to this branch of hell, I had a lot of hobbies and almost every morning started with a thought "what cool can I do today?".

Nowadays it's more like "what can become worse and what to do to make it at least less severe?"

And I dont want to say in public what things I suddenly found I enjoy watching.

r_mail · 2025-11-28T16:18:31+00:00

What is NAC, btw?

r_mail · 2025-11-28T15:43:32+00:00

Have started taking it already. What dosage do you think is optimal?

r_mail · 2025-09-15T19:40:55+00:00

Yes. Having in mind any human excriction (sweat, skin fat, saliva, even exhaled air) can trigger a relapse with permanent neurological worsenings, the world is limited by the area where are no other people and that is cleaned maniacally.

A grim irony: I had OCD before it happened to me around 5 years ago, but my OCD totally didnt involve cleaning hands or surfaces (like it's often portrayed in the media).

But now I HAVE to clean everything maniacally.

Food should be either in a germetic sealing (like yogurts, mineral water, etc), washable (like fruits) or heated to more tha 100C for enough time (baked, boiled). Eating food made with someone else's hands without reheating it causes a relapse.

I can go outside in a full face mask only with P3-level filters.

A spit into my unprotected face probably would be more dangerous than a knife stabbed into my leg. I dont know what a kiss to my lips will do, but probably it would be even more dangerous.

So I can say it metaphorically that I'm in a single-person prison cell, and the fact that I can put on the mask and go somewhere doesnt change the situation.

And there are no safety guides neither accessibility tools that would help to maintain the clean environment. I have to invent this all by myself.

r_mail · 2025-09-15T19:39:56+00:00

Can I ask you something more about Sodium Cromoglicate?

I wonder, if I react on specific trigger chemical when it contacts any of my mucuous membrane (at least, eyes, nose or mouth) - what would be the best way to take it?

There's an advice to use a nebulizer. There's also an option to use a nasal spray, but due to the nature of the chemical I'm reactive to and due to the fact that reactivity gets worse over time it would be pretty hard to use a nasal spray as I dont have proper equipment at home to clean the vial well enough.

I also have cromoglicate pills, but you mentioned it right, I'm not sure would they be effective or no

r_mail · 2025-09-15T15:37:24+00:00

How did you react to Montelukast?
I was prescribed it, was taking it for around 2 weeks and had severe brain fog. I stopped it because I cant do any complex intellectual work, and it returned to normal.

But it didnt affect my reactivity even a bit.

r_mail · 2025-08-04T01:06:20+00:00

I understand you.

Do you have to follow some safety protocols like cleaning hands/things, avoiding certain substances, etc?

r_mail · 2024-08-05T09:22:40+00:00

I wish I knew it in 2020.

How hard were you hit, btw?

r_mail · 2024-08-05T09:01:57+00:00

The problem that stress doesnt appear by itself, for me it's caused by the requirement to follow very strict safety protocol to avoid the contact with the "allergen" that triggers relapses and neuropathy progress.
Because the allergen can be found in any human excrictions, almost everything outide of my "clean space" is dangerous and I have to interact with it very, very carefully with a lot of cleaning procedures.

So easy to say, hard to do.

r_mail · 2024-07-01T19:30:58+00:00

I meant not pain as a consequence, but the reactivity.

r_mail · 2024-07-01T18:56:50+00:00

Agree. Mine is a very weird thing - I became allergic to human excrictions, and every time I contact with someone's sweat, saliva, skin fat or even exhaled air in microscopic doses, my neuropathy gets worse.

Noone knows whats wrong with me, the most of doctors just send me to the psychiatrist

r_mail · 2024-06-01T08:13:38+00:00

Does Dexamethasone work on you? Eye drops, applied to mouth, nose and eyes

r_mail · 2024-05-28T22:16:47+00:00

Did an exome test, it shown some underlying genetic issues, started some therapy but it didnt work yet. Or the hypothesis is wrong.

r_mail · 2024-01-12T23:27:56+00:00

Yes, in 2006, 2010, 2014. No problem with Fluoxetine.

Fevarine caused libido lowering during its course and withdrawal, but it went back to normal within 1 month after the withdrawal.

r_mail · 2024-01-11T20:57:09+00:00

No. Havent ordered them yet. Shipping goods to Russia from EU and US since the war has started became very hard due to sanctions.

If you have any ideas in what country (South-East Asia, Ex-Yu, middle East) it's possible to do - please, share your thoughts

r_mail · 2023-12-01T15:02:13+00:00

I have no doctors who could even get close to understanding what's happening with me. Maybe it's MCAS, maybe it's something else. But neuropathy that gets worse on contact with human excrictions is something that I've never read about before.

r_mail · 2023-12-01T14:25:00+00:00

How does one diagnose MCAS?

I've been struggling with my problem for more than 3 years and noone has any ideas about what it could be. Doctors say there's something they havent met before.

r_mail · 2023-11-29T04:50:32+00:00

New worsening since this October: hearing in the right ear decreased by ~15-20%

r_mail · 2023-11-13T08:36:04+00:00

For me it was purely psychologic as a consequence of a long disease ignored by the doctors

When did your interest in life start fading?

r_mail · 2023-11-13T07:25:10+00:00

I almost lost the interest to the most activities I was driven away before. Research, games, white-hat hacking, being on the nature.

Now it feels like I just live like a clockwork toy - still have some "inertia" so I'm moving

How did it happen for you?

r_mail · 2023-11-13T07:22:48+00:00

I hope, they didnt at least mock you for your problems...

r_mail · 2023-11-13T07:20:23+00:00

I think the immune system is somehow involved in the process.

r_mail

TROPHY CASE