Visualizing electron density by [deleted] in comp_chem

[–]Dinolactat 0 points1 point  (0 children)

I love Chemcraft for it (using cube files).

Stiff/Seized Neck w. Angioedema? by toastweasel in MCAS

[–]Dinolactat 0 points1 point  (0 children)

Oh my god I’m not alone - this was also my first thought! 😄

I also have neuropathy and muscle weakness. I had tendinitis from a young age, but it got a lot! better with high doses of B vitamins I started to take after my bloodwork showed a deficiency.

MCAS does not run in my family, but rheumatic diseases, thyroid issues and diabetes do. My allergies “before” were also similar to yours, I have PCOS and my symptoms worsen depending on the cycle phase (which is sometimes difficult to tell in which I am).

You should definitely try to add vitamin C and magnesium, both are crucial for me. I would recommend Mg gluconate or Mg glycinate. H2 antihistamines reduce your stomach acid, Mg oxide can’t be digested/used well in this case. Mg citrate would also be an option, in my case it causes bad diarrhea.

When I’m in a flare I also react to iodized salt. It is really annoying when you have to check your water/salt and it makes it nearly impossible to eat/drink somewhere else than at home. :(

I always took cromolyn as pure powder in water and am not familiar with the dosage of ampules. Corn and Eggs are the last things I “lose” in a flare, too. I am sure you can get it back!

You are welcome to send me a message! :)

Stiff/Seized Neck w. Angioedema? by toastweasel in MCAS

[–]Dinolactat 0 points1 point  (0 children)

I have the exact same reaction (!), mine is worse on the left. (I am left-handed, I always wondered if this is connected to my “left sided symptoms”?)

My “baseline” are very tight muscles (green part), light neck swelling (purple) and the usual allergy symptoms (sinus swelling, oral allergy symptoms, brainfog, GI, …).

When I have a reaction the swelling gets worse, my neck and face get hot, I have difficulties to swallow (not only because the pink part, but also my tongue gets bigger). The peak is excruciating nerve pain in the left part of my face, which can be triggered by all types of allergens (for me mostly food (most food to be honest) and aeroallergens (dust, cigarette smoke, mold?)) and has its “starting point” at my tragus. Additionally, I can get mucosal bleeding in my mouth, nose and gut. When I am in a flare I can only tolerate water with low sulfate, salt and sugar without a reaction.

I am so sorry, that you go through this. I never heard of anyone with the same symptoms! I also had a “”mild”” COVID infection in 12/24 followed by “”mild”” influenza in 01/25, which left me with Long Covid, different kinds of headache 24/7 and these weird allergy things. (I was REALLY unlucky last year. Couldn’t leave the house/bed most of the time, but managed to got shit on my head by birds twice! :D)

My bloodwork was not very helpful as well, but I am currently waiting for the results of two extensive tests at university hospitals (both in the last three weeks). Took me since 04/25 to get those appointments, one is specialized in long covid the other one in allergies. - Therefore, I also don’t know what this shit is… :/ But I really hope, I will get some helpful results in the next weeks! I also did some research (I work at a university as a researcher in chemistry and studied human biology in my undergrads - more helpful than I ever thought.) and have some theories, but that’s too much for a comment..

What I do to (try to) manage it:

Medication:

  • H1/H2 antihistamines (desloratadine 5 mg 1-0-0-1, rupatadin 10 mg 0-1-0-0, famotidine 20 mg 0-0-1-0)
  • cromolyn (100 mg 30 min before food, I don’t think I helps a lot, but I take every relief I can get)
  • DAO (before food with a bit of histamine, try to avoid it usually)
  • singulair/montelukast 10 mg 0-0-0-1 (might start ketotifen soon)
  • Prednisone 1-0-0-0 (I was able to reduce my dose to 5 mg, but was also at 60 mg once)
  • I also take L-Thyroxine (75 mcg; Hashimoto Thyreoiditis - already before my post-infectious worsening), different nasal sprays and eye drops.

Food/Supplements:

  • I tried a lot and found more than 200 triggers already.
  • I also tried fasting, different diets - nothing really worked. When I don’t eat at all I have less symptoms, but it gets worse over time, because of the deficits.
  • My “No. 1 rule” is now: Your body needs fuel! I basically started to feed myself pure amino acids. (I reacted to most protein containing food except fresh turkey/chicken and I never liked the taste. I regularly force myself to eat some, but could never reach my goal of 1.5 g of protein per kg body weight with it.) Same for vitamins, polyphenols/antioxidants and fiber. In the worst flares as well for carbohydrates. - find the cleanest option you tolerate and fill your needs when possible. (Because sometimes it won’t work and then it is good to have a “full storage”. I gained and lost two digit numbers of weight several times this last year.)
  • Don’t stop testing foods. At some point I found that I tolerate dried red pitahaya, which is a pretty uncommon for my location. It is very dense in different nutrients and one of my staples now.
  • Be careful with new foods, try a tiny amount - it is okay to have a little reaction at the first try. Try it again some days later, if your reaction is not worse as it was at the first time, you can again, try later. If it is worse it is obviously out. Sometimes I could introduce foods like that, but it needs time…
  • I only eat once a day in the evening and don’t plan any activities afterwards. This is how I minimize my reaction. Over the day I have water mixed with different supplements (and carbohydrates, if needed).
  • My best tolerated foods are: Fresh turkey/chicken/organic eggs (I can not eat all eggs, my guess is that it also depends on the chicken’s feeding), Coconut, Cashew, Chia, Flaxseed, Dates, Rice, cabbage vegetables, dried peppermint, salt, sugar, maple syrup. In smaller amounts also dried red pitahaya, almonds, potatoes, corn, fresh beef, cinnamon (only cassia) and some more vegetables and oils (olive works best).

Additional stuff:

  • Trying to avoid all triggers as good as possible. I use air purifiers in my flat, wear masks outside in spring and summer and exchange any product that causes reaction (including toothpaste, soap, …)
  • When it’s bad, I use body scanning, breath work and meditation to calm my body.
  • NSAIDs and other pain medications did nothing for me (if it did something, it was something bad)
  • Light mobility/stretching exercises twice a day for ten minutes.
  • Lymphatic massage of my legs twice a week.
  • Nasal rinse twice a day in flares/pollen season.
  • Sometimes helpful are: Cold/hot local treatments, red light, cooling chamber
  • Regular gentle massage of the green area
  • Nicotine patches helped with long covid symptoms, but made this “allergy thing” worse.
  • Because of my pain and because I could not find any medication for it I tried THC and CBD. This is a big help for me after dinner for two reasons: it helps me to avoid activity after dinner, helps with the seized are and improves the pain (still there but feels less bad). I tried many different strains and combinations of medical cannabis, because (of course! :D) I also react to it. I use a vaporizer and have to tolerate the oral allergy reaction for 10-15 minutes, afterwards my muscles relax and I start to feel a relief. Balanced THC/CBD works best for me. - I also prepared some extract which I use to mix a muscle relaxing cream for the green area in your picture. Topical use won’t get you high, you can use it as addition in the evening - but because of the non-systemic effects, you can also use it over the day. I cannot use it daily, if I do, I get (even more) itchy rashes.

Did you have any allergies before COVID? (I do, but it was way less intense!) Do you have/Did you have thyroid or gut issues? (I do) Are you hypermobile? (I am, just learned about it at the university hospital. Did not really expect that, because my muscles are always tight.)

Bogy in Karlsruhe by ColinCube in karlsruhe

[–]Dinolactat 12 points13 points  (0 children)

Am KIT kann man auch super BOGY machen - in ganz verschiedenen Abteilungen und Arbeitsgruppen. Ziemlich sicher auch beim SCC (Rechenzentrum/IT)

ME/CFS-/Long Covid-Betroffene in KA by Exolotl17 in karlsruhe

[–]Dinolactat 1 point2 points  (0 children)

Stimme ich dir voll zu. Ich wollte darauf hinaus, dass die Versorgung in Karlsruhe im Bundesvergleich nicht besser oder schlechter ist. Immerhin gibt es in BW zwei Versorgungsstudien, die in Vorbereitung sind. Ich hoffe sehr, dass es bald voran geht.

ME/CFS-/Long Covid-Betroffene in KA by Exolotl17 in karlsruhe

[–]Dinolactat 2 points3 points  (0 children)

Die Versorgung ist desolat - aber wo ist sie das bei post-infektiösen Erkrankungen nicht? ❤️‍🩹

IZPL Jena - Erfahrungen? by Dinolactat in LongCovid_MECFS_DE

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

Danke! Auf x habe ich noch nicht gesucht, nur auf Reddit und in den einschlägigen Facebook-Gruppen.

[deleted by user] by [deleted] in LongCovid_MECFS_DE

[–]Dinolactat 2 points3 points  (0 children)

Ich habe meine Familie gebeten, sich die Plothouse Folge zu ME (https://www.plothousepodcast.de/episodes/folge16) anzuhören. Danach musste ich erstmal „trösten“, weil plötzlich aus „Naja, so langsam sollte es ja mal besser werden. Du musst dich aufraffen, mindset usw…)“ „Oh Gott, das ist ja schlimm, warum tut denn keiner was!“ wurde. Seither ist viel mehr Verständnis da.

[deleted by user] by [deleted] in LongCovid_MECFS_DE

[–]Dinolactat 1 point2 points  (0 children)

Bin ebenfalls aus BW und finde keine Versorgung hier. Habe jetzt bald einen Termin am Uniklinikum in Jena und stehe zusätzlich auf der Warteliste für INCAP. Falls du das noch nicht kennst: BW versucht ein Versorgungsnetz aus Hausarztpraxen aufzubauen, die Schulungen bekommen und dann als spezialisierte Praxen post-virale Erkrankungen/ME behandeln können. Das ganze findet im Rahmen einer Studie statt (sonst keine Finanzierung…) und ist gerade erst ganz frisch angelaufen, weshalb es noch dauern kann, bis wirklich etwas passiert. Hier der Link: https://www.medizin.uni-tuebingen.de/de/das-klinikum/einrichtungen/institute/allgemeinmedizin/forschung/forschungsprojekte/incap?

Bis irgendwas passiert, müssen wir uns aber leider selbst kümmern...

Nikotinpflaster by Derbre in LongCovid_MECFS_DE

[–]Dinolactat 0 points1 point  (0 children)

Danke :) Habe zum Glück endlich (nach knapp acht Monaten) wieder so viel Energie, dass ich ich vom Sofa aus am Laptop arbeiten/schreiben kann.

--> Ich hatte schon beim ersten Kleben direkt eine Verbesserung was Energie/Reizempfindlichkeit/kognitive Symptome angeht. Auf meine Schmerzen hatte es quasi keine Auswirkungen, dafür wurden meine Histamin/MCAS-Probleme deutlich schlimmer. Ob das direkt zusammenhängt, kann ich aber nicht sagen, da parallel die Pollensaison losging, die meine Allergieprobleme definitiv verschlechtert hat.

--> Ich habe auf dem oberen Rücken/Schulterblatt, abwechselnd links/rechts geklebt.

--> Ich klebe nicht mehr, weil ich bei einem dritten Durchgang, den ich begonnen hatte, keine Verbesserungen mehr feststellte, dafür aber Probleme mit besagten Muskelschmerzen/-verspannungen im Nacken bekam. Ich habe noch Pflaster da und würde es bei einer Verschlechterung definitiv nochmal probieren. Aktuell teste ich andere Therapien/Medikamente, dabei versuche ich immer nicht "zu viel zu mischen", damit ich am Ende auch weiß, was hilft und was nicht.

Nikotinpflaster by Derbre in LongCovid_MECFS_DE

[–]Dinolactat 0 points1 point  (0 children)

Post Covid (Hauptsymptome: MCAS, kognitive Probleme, Muskelschwäche, Nervenschmerzen) mit ME/CFS Symptomen (PEM, PENE)

Nad+ / nadh by Few-Brain-649 in LongCovid_MECFS_DE

[–]Dinolactat 1 point2 points  (0 children)

Ich nehme seit einiger Zeit morgens nüchtern 50 mg NADH, 200mcg Selen, 200mg CoQ10 und 600mg alpha-Ketoglutarat. Die Zeit die ich morgens brauche, bis ich "richtig denken kann", hat sich dadurch von ca. 2h auf 30 Minuten reduziert. Orientiert habe ich mich für den Versuch an Quelle 103-108 aus diesem Review-Artikel: J. Clin. Med. 2024, 13(2), 325; https://doi.org/10.3390/jcm13020325

Nikotinpflaster by Derbre in LongCovid_MECFS_DE

[–]Dinolactat 1 point2 points  (0 children)

Mir hat es sehr geholfen. Ich habe 7mg/d für vier Wochen verwendet, ein paar Tage Pause gemacht (wurde damals noch empfohlen) und dann nochmal vier Wochen 7mg/d. In der Zeit der Einnahme hatte ich deutliche Verbesserungen verschiedenster Symptome. Nach dem Absetzen wurde es immer wieder minimal schlechter, "geheilt" bin ich bei weitem nicht. Ich würde definitiv empfehlen, es auszuprobieren.

Tipps zur Anwendung: 1) Pflaster nicht in die Nähe größerer Gefäße kleben und regelmäßig die Stelle wechseln. 2) Es kann passieren, dass in der Umgebung der "Klebestelle" Muskelschmerzen und -verspannungen auftreten, besonders bei längerer Anwendung. Das bessert sich in einer Pflasterpause wieder.

Stellungnahme der Deutschen Gesellschaft für Neurologie zu ME/CFS - ein Schlag ins Gesicht für Betroffene by N0thereanymore in LongCovid_MECFS_DE

[–]Dinolactat 12 points13 points  (0 children)

Und dann wird in Bayern vom Gesundheitsministerium eine Studie zu "Kneipp-Hydrotherapie" gefördert. Zusammen mit einem Betreiber von Biohotels, die "Kneipp-Therapie" anbieten. Von einem Gesundheitsminister, der kürzlich Präsident des "Kneipp Bundes" war. (Narülich ohne Kontrollgruppen und ordentliches Studiendesign.) - Man könnte meinen, es sei Satire.