Caty

she/her 🐢

[Caty @caatysue]

@KerstinSchicha @Lisathefirst20 Und besser ging es dir dann erst nach 5-6 Monaten auf der selben Dosis?

[Caty @caatysue]

@KerstinSchicha @Lisathefirst20 Interessant. Alle Berichte, die ich dazu sehe, sind eigentlich immer „sofort“ irgendwas gemerkt. Bei den 5-6 Monaten ist aber vermutlich nicht berücksichtigt, dass langsam gesteigert wird? Also über die 5-6 Monate die Dosis vmtl immer weiter stieg?

[Caty @caatysue]

@dee_munich @Lisathefirst20 @Hyperfocusdeep Weil du nach ca 3 Monaten bei einer höheren Dosis angekommen warst? Oder hast du die ganzen 3 Monate die gleiche Dosis gehabt?

[Caty @caatysue]

Memantine

In some studies the onset of action is statistically measurable/significantly noticeable only after 8–12 weeks.

Within what timeframe and at what dose did you notice improvements with ME, and did these improvements increase over time? #mecfs

[Steven Phillips, MD @StevePhillipsMD]

In my roughly 30 years of medical practice, I've noticed something really disturbing:

The sickest chronic illness patients often got the least effective care. Many doctors just gave up.

Where there's life, there's hope. Docs should never give up.

[Caty @caatysue]

Memantine

In some studies the onset of action is statistically measurable/significantly noticeable only after 8–12 weeks.

Within what timeframe and at what dose did you notice improvements with ME, and did these improvements increase over time? #mecfs

[Caty @caatysue]

@SpinosaPrunus Okay! I’ve always wondered about the mold dogs. Would be great to here if he was actually right!!

And did you do anything else via Leonardis Stiftung besides Handauflagen?

[Caty @caatysue]

@DrRebeccaRyan @PanickedFoodie So im wondering if effects for MCAS/me/pots and so on could come later for me, after a few more weeks at this dose, or at higher doses. But than at some point the dose will be too high for these effects from what I’m reading and what you’ve posted

[Caty @caatysue]

@DrRebeccaRyan @PanickedFoodie I started Mounjaro a few weeks ago (very severe MCS, vs ME, POTS) etc, am at 0,25mg tmrw. Thus far haven’t noticed any stabilizing. I only ever see anecdotes of people feeling strong relief from the very first tiniest dose on.

[Caty @caatysue]

@DrRebeccaRyan @PanickedFoodie What’s the dose where it shifts from the way it works as a micordose to the way it works as a regular dose and thus is not recommended? When you say it works differently as a microdose. I wonder where that stops e.g. for Mounjaro. Thus far no improvement

[Caty @caatysue]

@amyrochlin How would SCIG as a treatment for ME fit into this context? In a scenario with decreased IgGs in a pwME, could SCIG maybe either be beneficial, or detrimental in theory if the donor IgGs get programmed by the ME-IgGs… any input, hypothesis or such?

[Caty @caatysue]

@Lisathefirst20 @zebramaeuschen Was macht der Augenarzt dann bei dir zuhause?

[Caty @caatysue]

@microbeminded2 @polybioRF Hey @polybioRF I‘m wondering why your babesia study is tafenoquin solo therapy instead of tafenoquin+atovaquon? Supposedly the latter is more effective but also higher AEs combined. Thanks so much!

[Caty @caatysue]

@pausedME @RenzPolster Thank you Martin! 4-5 weeks ago you added both around the same time: memantine & lamotrigine . When you added those three, is when we can see the increase in your step count?

[Caty @caatysue]

@DrAschenbrenner @DrRebeccaRyan Bei den neuen Kwikpens ist es laut Erfahrungsberichten nicht mehr möglich zu Mikro-dosieren. Wissen Sie schon eine Lösung dafür? Nach einstellen einer geringeren Klick-Dosis wird bei den neuen pens keine Substanz abgegeben?

[Caty @caatysue]

@HalfThePerson @DrRebeccaRyan @dysclinic Would that mean combining it with pots meds like ivabradine might be a problem?

[Caty @caatysue]

https://t.co/p2dekHY9Uo #EDS #MECF Nevra needs help with even basic safety needs!

[Caty @caatysue]

#MECFS #EDS urgent help needed https://t.co/qSWnNU0col

[Caty @caatysue]

#MECFS #EDS urgent help needed https://t.co/qSWnNU0col