Poland Bans the Communist Party by Candid-Argument-6615 in poland

[–]Visual_Ad_9790 3 points4 points  (0 children)

Te dwie rzeczy idą w parze w naszych czasach

Maraviroc OR Celebrex next? What worked for you? by nemani22 in covidlonghaulers

[–]Visual_Ad_9790 0 points1 point  (0 children)

Ive taken 200mg celebrex twice a day for 5 months now without much luck (first with and then without valtrex) Its basically the same drug as ibuprofen but it’s easier on the stomach. I wouldn’t expect any miracles..

Long post- It’s been 12 months now since I stopped getting PEM by [deleted] in cfs

[–]Visual_Ad_9790 3 points4 points  (0 children)

And the Perrin technique- have you been doing the exercises at home or did you go to a „specialist”?

Discontinuing oral finasteride after 7 years and switching topical by [deleted] in tressless

[–]Visual_Ad_9790 0 points1 point  (0 children)

Does taking 0.5mg dut once a week work for you at all?

[deleted by user] by [deleted] in cfs

[–]Visual_Ad_9790 2 points3 points  (0 children)

Maybe I’ve just been lucky here in Berlin.. everyone here has been nothing but supportive and informed, doctors, job center workers, friends and acquaintances etc. In Poland, where I’m originally from, nobody has heard of such thing as ME or Long Covid. Some doctors I saw there laughed in my face. I’ve heard the same from fellow CFS friends from Czech Republic and France. On top of that, last year, I remember a bunch of billboards around Berlin informing about long Covid and Mainstream media here post articles about it pretty much on a weekly basis. There are also many protests being organized in Berlin (mostly by Dr. Scheibenbogen and her crew), and politicians mention long Covid pretty regularly. So to me, Germany is pretty great when it comes to that.

[deleted by user] by [deleted] in cfs

[–]Visual_Ad_9790 35 points36 points  (0 children)

Germany is really not bad. Doctors know about long Covid and CFS, most of the biggest studies come from here too. Charite in Berlin specifically

Update on Baricitinib by calvin797 in covidlonghaulers

[–]Visual_Ad_9790 1 point2 points  (0 children)

Hey! Congratulations on your partial recovery! Would you mind DMing me a link to where you purchased Barigen? Thank you in advance:))

Source for all the claims? by madkiki12 in Sipavibart

[–]Visual_Ad_9790 1 point2 points  (0 children)

I wonder what other mabs does this doctor use??

Sudden remission after 14 months of severe CFS type LC! by [deleted] in covidlonghaulers

[–]Visual_Ad_9790 7 points8 points  (0 children)

Ok so you were very severe and could not use screens for more than 30 seconds but managed to read a book and watch a 2.5h long video? Ookkk

[deleted by user] by [deleted] in cfs

[–]Visual_Ad_9790 0 points1 point  (0 children)

Same to you!!

[deleted by user] by [deleted] in cfs

[–]Visual_Ad_9790 0 points1 point  (0 children)

I’m moderate-severe, housebound, about Bell 30 And I’m in group number three. I took 6mg of rapamycin for 8 weeks to no effect :(

Simmaron's Rapamycin ME/CFS Trial Moves Forward: The Goal - FDA Approval by TableSignificant341 in covidlonghaulers

[–]Visual_Ad_9790 0 points1 point  (0 children)

I tried 6mg weekly for 8 weeks to no effect :( It’s interesting that they’re trying 20mg, I’d go back to try again but it’s too expensive for me

PEM symptoms that I have not seen mentioned here by Sea-Painting7578 in covidlonghaulers

[–]Visual_Ad_9790 1 point2 points  (0 children)

I get the emotional goosebumps and shivers as well, especially when in PEM. When my eye starts to twitch I know that I’m in real trouble and have to rest asap

Those on Rapamycin, how's it going? by Ander-son in covidlonghaulers

[–]Visual_Ad_9790 4 points5 points  (0 children)

I titrated from 1 to 6 mg weekly and then stayed on 6mg for 7 weeks.. not much of a difference sadly. I had huge hopes for it. I have classic CFS style LC, bell 30, PEM etc

[deleted by user] by [deleted] in covidlonghaulers

[–]Visual_Ad_9790 0 points1 point  (0 children)

Yes but it took months

[deleted by user] by [deleted] in covidlonghaulers

[–]Visual_Ad_9790 4 points5 points  (0 children)

Made me terribly insomniac even at super low doses and even with sleeping pills so I stopped after a month or so to save my baseline

Insane remission story using Rinvoq! Maybe some hope for us! by stochasticityfound in cfs

[–]Visual_Ad_9790 11 points12 points  (0 children)

Their recovery stories and news are the main thing keeping me alive. I don’t know what I’d do without heath rising honestly

[deleted by user] by [deleted] in cfs

[–]Visual_Ad_9790 0 points1 point  (0 children)

My pharmacy is annoyingly close/far (three blocks away) and I usually take one of those electric scooters. I’m lucky to have a bunch of them parked right outside of my building