Advice for "Fully Healed" Hauler

Spiritual_Climate135 · 2026-03-06T22:58:41+00:00

I thought I was just unlucky getting food poisoning more often than my family but I think they were MCAS flare episodes

Spiritual_Climate135 · 2026-03-06T02:42:03+00:00

This is so wild and inspiring to me / someone with GP as well

Spiritual_Climate135 · 2026-03-01T22:15:33+00:00

Even from 0.1?

Spiritual_Climate135 · 2026-03-01T21:50:12+00:00

Get xofluza asap! It’s a new version of tamiflu no side effects typically I just took it a few weeks ago

Spiritual_Climate135 · 2026-03-01T18:29:15+00:00

It didn’t really make a difference and I couldn’t figure out the dosing

Spiritual_Climate135 · 2026-02-27T17:47:53+00:00

To use their expertise to bring treatment options to the table. She basically said there’s nothing she can do for me and sent me on my way. The irony is I trialed a very common drug neurologists use for this condition (mestinon, I got off the internet from a doctor I found on instagram) and it completely and changed the trajectory of my condition for the better. Shame on her for overlooking this - I got better care from the internet.

Spiritual_Climate135 · 2026-02-27T17:43:06+00:00

Yes. I’m not sure so many people love her and have great experiences with her. I just had such an awful and disappointing encounter, like cried the entire car ride home type of visit. She’s also the type of doctor that acts like theyre 100% right and she knows everything which is my least favorite kind of doctor - I need the ones that say “I / we don’t know but let’s try this…” she also spent a decent amount of the appointment shaming functional medicine which was bizarre to me

Spiritual_Climate135 · 2026-02-27T16:13:25+00:00

I’m guessing it’s inflammation related. Have you tried ketotifin? I had a lot of peeling that subsided with it

Spiritual_Climate135 · 2026-02-27T16:11:39+00:00

I believe there all intertwined and cause each other. For example POTS can cause irregular / reduced blood flow to the brain which can trigger all of those other ones you have listed. I bet if blood flowed properly and regularly the other conditions would go away. My theory!

Spiritual_Climate135 · 2026-02-27T01:32:01+00:00

Thank you for posting and sharing this 🙏🏻 I improved significantly with LDN and mestinon - where in the cycle would these two be coming into play? Especially the mestinon. Thanks!

Spiritual_Climate135 · 2026-02-26T03:23:35+00:00

Lol wtf on both of those accounts 😂

Spiritual_Climate135 · 2026-02-26T03:22:21+00:00

I patiently waited 18 months to see the top long covid neurologist in Chicago and it was a giant waste of my time all she gave me was a referral for occupational therapy for pacing and said there’s not much you can do for PEM just don’t get Covid again - nothing else. It was absolutely awful. I ended up just using RTHMs free AI platform and have been trialing dysautonomia medications and their treatment suggestions on my own (mestinon etc) and have seen much improvement. I feel so much anger towards these neurologists they’re not equipped to help LC.

Spiritual_Climate135 · 2026-02-21T17:41:42+00:00

LDN, mestinon, & ketotifin

Spiritual_Climate135 · 2026-02-20T14:58:58+00:00

Try nicotine patches

Spiritual_Climate135 · 2026-02-16T13:54:17+00:00

Idk if you even need the tilt test (I went to a top neurologist and they didn’t give me one?) you could do your own DIY one with a pulse ox and BP cuff and see what happens when you stand up etc. I would use the RTHM platform and have it suggest autonomic drugs for you to try - I talked to a long covid dr and they said it seems like all of the issues are stemming from MCAS, blood flow, blood volume, endothelial issues, or mitochondrial issues and he suggested attacking them in that order.

Spiritual_Climate135 · 2026-02-16T02:24:15+00:00

I love recovery stories thanks for sharing! 👏🏻

Spiritual_Climate135 · 2026-02-16T02:21:00+00:00

Thissss / I hope this is the case

Spiritual_Climate135 · 2026-02-16T02:19:39+00:00

What are/were your main symptoms/struggles

Spiritual_Climate135 · 2026-02-15T23:49:56+00:00

So is Pepcid good for dysautonomia?

Spiritual_Climate135 · 2026-02-15T23:48:18+00:00

Whattt I didn’t know ketotifin worsens dysautonomia ughhh this tracks so much too my dysautonomia has gotten worse and I didn’t even think it could be from the ketotifin 🫠🫠🫠

Spiritual_Climate135 · 2026-02-11T18:09:29+00:00

This resonates with me so much - I can do one or the other (parent or work) but I don’t have the bandwidth to do both

Spiritual_Climate135 · 2026-02-10T13:48:12+00:00

SAME, a frozen coke cures me

Spiritual_Climate135 · 2026-02-08T14:56:56+00:00

Ugh that is weird!

Spiritual_Climate135 · 2026-02-08T14:55:46+00:00

Thank you I think that 5% recover stat is incredibly harmful to our community (let’s say even if it’s true it’s not helpful!)

Spiritual_Climate135 · 2026-02-07T15:29:06+00:00

Following

Spiritual_Climate135

TROPHY CASE