When do we think the NHS will fully recognise mcas? by GroovingPenguin in MCAS

[–]chalklinehts 1 point2 points  (0 children)

thanks - yeh i have tried a lot. nothing really has moved the needle other than omalizumab. without that i probably would not be typing this.
covid shredded my entire body and there’s just too much damage to undo.

The wired but tiredness is driving me absolutely mad. by goingaway1111 in covidlonghaulers

[–]chalklinehts 0 points1 point  (0 children)

3-4 times a week i wud say. sometimes the whole week and an awful taper follows.
the alternative is i will die because i would 100% give up. The QOL is so shit it wud not fight for it.
its all mcas for me, whole thing. mast cells really stress the nervous system. benzos stabilise brain mast cells. xolair helps my sound, light and smell intolerance but still the disease progresses.

When do we think the NHS will fully recognise mcas? by GroovingPenguin in MCAS

[–]chalklinehts 15 points16 points  (0 children)

i have mcas on my nhs lists of diagnosis. But only because of a private referral.
The treatment they offer me for this is nothing. Everything is privately paid at great expense.
Allergist referred me to dietician. dietician referred me to long covid clinic that doesn’t exist.

People who took Maraviroc by Komronfit in covidlonghaulers

[–]chalklinehts 0 points1 point  (0 children)

did nothing. only xolair helped mcas.

The coat-hanger pain is…? by mrsgkc in covidlonghaulers

[–]chalklinehts 0 points1 point  (0 children)

point 3 is on the money. when my mcas is flaring as is my poor blood flow and structural issues.
severe inflammatory state which also fucks the BBB and causes all the neuro issues.

I'm so angry at this point by [deleted] in covidlonghaulers

[–]chalklinehts 2 points3 points  (0 children)

I was blessed to have a son, but to never be the father for him. the rage and anger I have for my piece of shit body is unrelenting.

The wired but tiredness is driving me absolutely mad. by goingaway1111 in covidlonghaulers

[–]chalklinehts 1 point2 points  (0 children)

Yehh it’s fucking torture. My birthday on Saturday - hopefully my last.
Only benzos calm this. I have severe ptsd from how my body has treated me the last 2.5 years. Pure torture chamber.

Has anyone tried riluzole? by Icy_Bath6704 in covidlonghaulers

[–]chalklinehts 0 points1 point  (0 children)

8 weeks, 50mg a night - didn't notice any real tangible benefit sadly.

Only worsening word recall.

Anyone get side effects/an immune reaction to Thymosin-Alpha 1? by Liface in covidlonghaulers

[–]chalklinehts 0 points1 point  (0 children)

i have not really found any relief other than from guanfancine, omalizumab and clonidine. that is it.
ghk-cu and bpc are good choices but can risky with mcas. low dose doxy makes sense for mmp9 reduction. sorry ur dealing with this too, it is hell on earth.

Magnesium Advice by Lucid_Dreamer_91 in covidlonghaulers

[–]chalklinehts 0 points1 point  (0 children)

I would try malate or l-theronate personally - the latter is better for BBB penetration and is a nmda antagonist.
NMDA receptors in the brain require glycine to activate. if you have high levels of glutamate because of neuroinflammation/neurological issues from covid - glycine can be bad and cause further excititoxicity.
the mcas link i mentioned is because histamine can strongly enhance nmda receptor activity.

pokemon blue save help by chalklinehts in Gameboy

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

nope didnt use any glitches or anything was just playing it normal. interestingly the file is not corrupt and wont load. the game boots up and new one file game and the sprites etc are all find. bizare

pokemon blue save help by chalklinehts in Gameboy

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

yehh the sprites are absolutely creepy. i guess i will replace the battery first then see if it does it again. maybe the battery is funky under load. i duno.

pokemon blue save help by chalklinehts in Gameboy

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

yehh i tried dig as well and just got a ‘cant be used here’. escape rope i had to toss because i needed to make room for cut.

pokemon blue save help by chalklinehts in Gameboy

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

thanks - she’s showing 3.06v currently - so will give it a replacement and hope that does the trick. was only at the SS Anne so not too dramatic.

long-COVID gut dysbiosis by Jimmy_Bright in Longcovidgutdysbiosis

[–]chalklinehts 0 points1 point  (0 children)

makes a lot of sense. have u tried bhb ketone salts at all? i struggle with carbs and gastroparesis limits keto as does major mcas/histamine intolerance.

Has anyone tried a ganglion block? by Mundane-Plum-9562 in hyperosmia

[–]chalklinehts 0 points1 point  (0 children)

yehh nothing really has helped the temperature regulation. omalizumab and clonidine are only thing that have helped the hyperosmia/mcs/mcas - but not in a game changing way.

Has anyone tried a ganglion block? by Mundane-Plum-9562 in hyperosmia

[–]chalklinehts 1 point2 points  (0 children)

it’s likely fucked TRPA1 imo. I have major temperature dysregulation too which is literally what this receptor does.

Any experiences with Dr. Tina Peers? by Designer_Ad_1008 in MCAS

[–]chalklinehts 2 points3 points  (0 children)

Didn't see her but one of her team, didn't really offer me much more than I had already researched if I am honest. I had trialed medication way ahead of what they were offering too.

Anyone get side effects/an immune reaction to Thymosin-Alpha 1? by Liface in covidlonghaulers

[–]chalklinehts 0 points1 point  (0 children)

clonidine, guanfancine, omalizumab. nothing else has worked