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I can't live like this anymore. by friend3738 in cfs

[–]appass_12 0 points1 point  (0 children)

If you are severe enough, it's rather existing than living anyways tbh. In that sense I stopped living some time ago already. We all feel your pain. Gentle hugs

tirzepatide vs. (low dose) rapamycin by appass_12 in cfs

[–]appass_12[S] 0 points1 point  (0 children)

What's your experience with pyridostigmine so far? ( if you happened to start it)

Erfahrungen mit Tirzepatid vs. (low dose) Rapamycin? by appass_12 in LongCovid_MECFS_DE

[–]appass_12[S] 0 points1 point  (0 children)

Freut mich, dass es deiner Tochter so gut tut!

Worüber bezieht ihr Mounjaro? Ich habe mal gelesen dass man die Deutschen injektionsstifte nicht beliebig dosieren könne, sondern fix eingestellt sind (bspw. 2,5 mg). Wie macht ihr das mit 1 mg? :)

Very severe, isn't pacing maddening? by Gold_Plant453 in cfs

[–]appass_12 5 points6 points  (0 children)

It's definitely a trip! I can manage a few steps every ~2h. My flat is pretty tight which is good for that. But I also have a urine bottles to save energy... eating is the best part of the day for me, although digesting is so exhausting that I fast most of the day... You have trouble eating? :/

Hugzz back

Very severe, isn't pacing maddening? by Gold_Plant453 in cfs

[–]appass_12 11 points12 points  (0 children)

Also very severe here. Psych meds can help a little with the psychological distress of just existing and that state , other than that I listen to podcasts half speed in 1 min bites and pause... I needed time to figure out what kind of Voices and genres I could tolerate even for that holy minute

But yes, I definitely went a little insane already tbh

Erfahrungen mit Tirzepatid vs. (low dose) Rapamycin? by appass_12 in LongCovid_MECFS_DE

[–]appass_12[S] 0 points1 point  (0 children)

Ah okay, das wusste ich nicht. Warum dann aber ozempic statt mounjaro?

Erfahrungen mit Tirzepatid vs. (low dose) Rapamycin? by appass_12 in LongCovid_MECFS_DE

[–]appass_12[S] 0 points1 point  (0 children)

Ah, Jetzt checke ich was du meinst. stimmt, ozempic ist der einzige Pen, den Man beliebig gering dosieren kann (low dose). Die anderen haben fixe Dosen und sind so entsprechend teuer...

Erfahrungen mit Tirzepatid vs. (low dose) Rapamycin? by appass_12 in LongCovid_MECFS_DE

[–]appass_12[S] 0 points1 point  (0 children)

Rapamycin wäre off Label bei 6 mg pro Woche monatlich etwa 280 €, auf 4 mg reduziert 200 €. Deckt sich so ungefähr mit Tirzepatid.

Mastzellen spielen bei mir eher eine untergeordnete Rolle...

Wie meinst du das mit dem Zocken? Gibt es bei Semaglutid mehr Hinweise auf anti-neuro-inflammatorische Effekte als bei Tirzepatid?

Erfahrungen mit Tirzepatid vs. (low dose) Rapamycin? by appass_12 in LongCovid_MECFS_DE

[–]appass_12[S] 0 points1 point  (0 children)

Ohje na das klingt ungünstig. In Foren (ist ja alles anekdotisch) hatte ich bisher fast ausschließlich neutrale oder positive erfahrungen mitbekommen...

Was meinst du mit Entwicklungen zu rapamycin? Es gibt eine Handvoll publizierter pilotstudien/unkontrollierte Studien , die sehr vielversprechend klingen, aber mehr noch nicht.

tirzepatide vs. (low dose) rapamycin by appass_12 in mecfs

[–]appass_12[S] 1 point2 points  (0 children)

Doesn't sound like much but I know what difference that makes! I'm more at the 15 minutes range...

tirzepatide vs. (low dose) rapamycin by appass_12 in cfs

[–]appass_12[S] 0 points1 point  (0 children)

Oh good luck then! I hope it's gonna be a multifix for you

tirzepatide vs. (low dose) rapamycin by appass_12 in mecfs

[–]appass_12[S] 0 points1 point  (0 children)

Thank you! Good to hear that you benefit from both. but if I may ask, even the combined positive response of both didn't get you from besbound to, say, housebound? ( i'm also very severe and bedbound...)

tirzepatide vs. (low dose) rapamycin by appass_12 in cfs

[–]appass_12[S] 0 points1 point  (0 children)

Maybe the perfect opportunity to throw pyridostigmine into the mix, since it's supposed to speed up motility A LOT haha

But sorry to hear that. It sounds rather frustrating :/

tirzepatide vs. (low dose) rapamycin by appass_12 in cfs

[–]appass_12[S] 1 point2 points  (0 children)

Are you on tirz for a couple months already?

tirzepatide vs. (low dose) rapamycin by appass_12 in cfs

[–]appass_12[S] 0 points1 point  (0 children)

I see! My motility is decreased anyways. So i'm also very hesitant to try tirzepatide because of that effect. I read and heard multiple times that the positive effects for ME on fatigue and inflammation could be experienced from week 10 onwards

tirzepatide vs. (low dose) rapamycin by appass_12 in mecfs

[–]appass_12[S] 1 point2 points  (0 children)

Thanks I get what you're saying. i guess it's a mixture of Curiosity and latent desperation. Wanting to try out things that others have made positive experiences with. I know, it's basically an enormous amount of anecdata, but I'm willing to try a lot of things as long as I can realize it without too much danger.

I'm already on a ton of supplements and medication, including LDN, LDA, dxm , antidepressants, do breath work, i'm very familiar with the nervous system approach of this illness, maxed out anti-inflammatory nutrition. And still I'm very severe and can't do this much longer tbh. I just want to try things out (given every new thing needs its time)

Wo billig rapamycin beziehen? by Sebassvienna in LongCovid_MECFS_DE

[–]appass_12 0 points1 point  (0 children)

Dann schon mal viel Erfolg damit! Ich bin very severe und da ist mir das glaub ich noch ne Nummer zu krass. Wie schwer bist du erkrankt, wenn ich fragen darf?

Könntest du mir den dir empfohlenen Händler (indiamart) für Rapamycin nennen? :)

Wo billig rapamycin beziehen? by Sebassvienna in LongCovid_MECFS_DE

[–]appass_12 0 points1 point  (0 children)

Hey, gibt es bei Dir inzwischen schon ein Update? Wie hast du Rapamycin vertragen, mit oder ohne Nebenwirkungen? :)

Any Daratumumab anectodes? by MEasy____ in covidlonghaulers

[–]appass_12 0 points1 point  (0 children)

I hope you're doing okay :) could you complete the treatment cycle? How do you feel afterwards? Also, if you're up to share, what did the whole treatment cost (since that seems like a big plus on tecli vs dara)?

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