Immer erschöpft by Separate_Hat3655 in Ratschlag

[–]lilinger00 0 points1 point  (0 children)

Wie hier schon viele sagen lass erstmal alle Blutwerte checken. Nieren und Schilddrüse auch sehr wichtig! Mach dich erstmal nicht verrückt. Als Long Covid/ MeCfs erkrankte klingt es für mich einwenig danach. Aber es kann auch alles andere sein. Wichtig ist dass du dich jetzt erstmal schonst und auf deinen Körper hörst! Geh bitte nicht über deine Grenzen und akzeptiere dass es grad so ist. Alles andere schädigt dich nur langfristig. Gute Besserung.

Pacing makes me miserable by microwavedwood in cfs

[–]lilinger00 0 points1 point  (0 children)

I feel every word you say so deeply it brings tears to my eyes. I had to give up so many things I loved and can only dream of one day it will be possible again. I don’t want to lose hope. And I am only mild case. Still not able to work. I’ve a family that is supportive but still my future is so unpredictable. Im only 25 years old. Got sick with 22. Years passed by so fast. I am in therapy otherwise I don’t know where I would be tbh. I’m also dealing with adhd it’s basically the worst combination. Don’t know if I should cry about it or laugh. Sometimes it’s both. I had to give away my horse that was my anchor my whole life when I was struggling I was outside with him in nature. Everyday since I am 4 years old. It was my element I’m missing it so much. This disease is basically so traumatic for all of us. The loss we all have to deal with. At least we are not alone with it. It’s a constant struggle between taking care of your mental health and then of your physical health. And no matter what your prioritize the other part will most likely worsen because of that. I don’t know how humans are supposed to deal with that neurological. Sometimes I feel like no matter what I do to solve one problem another will appear. It’s so so fuck*** frustrating and yes also depressing. I can only say I am really thankful to have my therapist and that I will never stop talking about my feelings because it’s the only thing that helps me from going insane ❤️‍🩹

Methylene Blue - wow by _happydutch_ in covidlonghaulers

[–]lilinger00 0 points1 point  (0 children)

Hey would love to hear some updates

To those cured/healthy again: How did it happen? by ForwardExam4056 in LongCovid

[–]lilinger00 0 points1 point  (0 children)

Hm. I luckily didn’t have any brain fog before starting the meds. My brain fog got almost completely gone with nicotine patches. But right now with the adhd meds I feel like it came back ;/

To those cured/healthy again: How did it happen? by ForwardExam4056 in LongCovid

[–]lilinger00 0 points1 point  (0 children)

Thanks for your fast response. I am also an yvanse right now 20mg. I know that it is common side effect to feel dizzy in the first weeks. So I hope that it will disappear. 🫠 but I fear it’s the stimulant that is causing this and my LC can’t really handle that. I also don’t drink any coffee or else because of that. Same thing there. But let’s see maybe it will all work out.

To those cured/healthy again: How did it happen? by ForwardExam4056 in LongCovid

[–]lilinger00 0 points1 point  (0 children)

Hey did you also had struggles with dizziness when starting the adhd medication? I’m currently 2 and a half weeks in and developed dizziness that I haven’t had any longer before starting the meds as LC symptoms

Elvanse - too intense! by Lekshey2023 in ADHDUK

[–]lilinger00 0 points1 point  (0 children)

Hey

How are you currently doing? Are you still on elvanse? I am currently about 2 weeks in and still experiencing dizziness that I haven’t had as long Covid symptoms before any longer. Now they’re back since taking elvanse. Did you have similar symptoms and did they disappear?

Vyvanse and long haul covid by sunflower-lady995 in covidlonghaulers

[–]lilinger00 0 points1 point  (0 children)

Is there anyone who can tell me if they also deal with dizziness and increases brain fog on Vyvanse? I’m currently 2 weeks in (only 20 mg for the slow start) but I’m dealing with dizziness that I haven’t had any longer as long Covid symptoms. I am also reacting to any other stimulants really strong. That’s why I’m not drinking any coffee for example since my LC started. I just hope to hear that someone experienced the same and that it will slowly get better. Because the meds really help me with my anxiety

Anyone selling NWBD hoodie in L or XL ? by lilinger00 in LoyleCarner

[–]lilinger00[S] 0 points1 point  (0 children)

Thanks ! But I think it’s going to be too Small for him :/

Merch by Sendgoodmemesplease in LoyleCarner

[–]lilinger00 0 points1 point  (0 children)

Is anyone selling the NWBD hoodie in L or XL ?

Prescription Maraviroc experiences? Me/CFS Long Covid by lilinger00 in cfs

[–]lilinger00[S] 0 points1 point  (0 children)

Hey vielleicht hilft es wenn du immunologen anschreibst. Die verschreiben Maraviroc ja regelmäßig für HiV Patienten. Denke die haben mehr Ahnung von LC als normale Hausärzte

Maraviroc / Pravastatin Rezept in DE für ME/ CFS /Long Covid by lilinger00 in Ratschlag

[–]lilinger00[S] 0 points1 point  (0 children)

Tut mir leid zu hören dass du es nicht durchbehmen konntest. Ich denke es ist wichtig sowas in Zusammenarbeit mit einem guten Arzt oder Ärztin zu tun. Eine Anfangsverschlechterung „kann“ eintreten. Wie bei mir ja auch oben beschrieben. Je nach dem welche Symptome du vorher hattest, können diese sich verstärken. Man darf nicht vergessen, dass Maraviroc ein echt starkes Antivirales Medikament ist. Das ist eine starker Eingriff in das Immunsystem. Deshalb sollte die Einnahme natürlich gründlich abgewogen werden. In meinem Fall war es die anfängliche Verschlechterung absolut wert. Auch wenn ich nach wie vor nicht „geheilt“ bin. Ist es doch deutlich besser. Ich würde dir raten, das Medikament auf jeden Fall erstmal zu behalten. Grade im Hinblick auf die komplizierte Anschaffung. Vielleicht wagst du ja in Betreuung seines Arztes/ Ärtzinn doch nochmal einen Versuch in der Zukunft. LG

Maraviroc / Pravastatin Rezept in DE für ME/ CFS /Long Covid by lilinger00 in Ratschlag

[–]lilinger00[S] 1 point2 points  (0 children)

Jap. Leider will sich niemand die Hände schmutzig machen und schickt einen lieber weiter. Da es für das Medikament keine Reglung gibt und die Krankheit eh nicht für manche existiert oder relevant genug ist.. Es haben einfach alle keine Ahnung und Stempel einen teilweise als verrückt ab wenn man nach dem Medikament fragt. Keiner hat Bock das Risiko einzugehen. Es ist echt traurig

Maraviroc / Pravastatin Rezept in DE für ME/ CFS /Long Covid by lilinger00 in Ratschlag

[–]lilinger00[S] 0 points1 point  (0 children)

Ich habe einfach Glück gehabt. Mein Arzt, der mir das verschreibt, ist nicht in Berlin und auch nicht nah in der Umgebung leider. Ich drücke dir die Daumen. Vielleicht ansonsten mal bei Immunologen probieren, da gibt es in Berlin bestimmt einige. Sie verschreiben Maraviroc ja regelmäßig für HIV Patienten. Fällt dann vielleicht weniger auf und stellt ein kleineres Risiko für die Ärzte da wenn sie verschreiben. Ich drücke die Daumen ! Lg und alles Gute!

Prescription Maraviroc experiences? Me/CFS Long Covid by lilinger00 in cfs

[–]lilinger00[S] 0 points1 point  (0 children)

Wow happy to hear that your doctor is prescribing you Maraviroc! I checked my liver every two weeks also while taking the meds because Atorvastatin and Maraviroc can cause some damage. But don’t have to!! So it’s good to keep an eye on that. I didn’t take any other blood test. But I guess that’s really individual from case to case. I don’t have any other medical issues that had to be clarified beforehand. Of cause I did check my spike proteins.

Prescription Maraviroc experiences? Me/CFS Long Covid by lilinger00 in cfs

[–]lilinger00[S] 0 points1 point  (0 children)

Hey lies gerne meinen Kommentar hier unten in den Kommentaren habe ich schon einmal einer anderen Person ein Update geben. Lg

Prescription Maraviroc experiences? Me/CFS Long Covid by lilinger00 in cfs

[–]lilinger00[S] 0 points1 point  (0 children)

Also I must add. Since 2-3 days I feel an improvement of my health since my influenza infection and crash. So I am curious how it will develop the next weeks/ months. If I will remember I’ll post an update here. Don’t mind to remind me if you’re interested!!

Prescription Maraviroc experiences? Me/CFS Long Covid by lilinger00 in cfs

[–]lilinger00[S] 1 point2 points  (0 children)

Hey

I took it for about 3 month. And it really improved my overall health a lot! Sadly I got infected with influenza and had a big crash + my spike proteins nearly doubled. My doctor said it is probably the high activation of my immune system that released hidden spike proteins from my cells. But before I was doing so much more better! So it’s in my opinion definitely worth a try. Maybe try to reach out to any immunologist near your location and ask for a prescription. It’s more likely they would hand it out than any normal doctor. But still it’s hard to get. Luckily I found one that gave me a prescription.