GingerStripes @violentbloom

@AdvancedTweaker @user54216 @AntoineMECFS what mast cells stabilizers are working for you? pmc.ncbi.nlm.nih.gov/articles/PMC37… this might be helpful too. the chart shows what cell population is helped by each thing. And webinars by Anne Maitland on youtube are helpful too.

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GingerStripes @violentbloom

14 hours ago

@AdvancedTweaker @user54216 @AntoineMECFS my histamine/tryptase is normal, pgd2 and leukotrines are not, and it's another way that mast cells can mess you up. have you tried rupafall? rupatadine, it's antihistamine, but also PAF receptor blocker so should block pgd2 which is downstream of PAF. Also singulair.

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GingerStripes @violentbloom

2 days ago

@Squeeze1i assume disaster, pleasantly surprised when that doesn't happen

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GingerStripes @violentbloom

2 days ago

@ThePOTSPostman they don't even get the concept that sleeping doesn't make you feel refreshed when you wake up..

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GingerStripes @violentbloom

2 days ago

@DiaryofaSickGrl I always blame fatigue.. though now I have posterior vitreous detatchment in both eyes so that's fun. :(

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GingerStripes @violentbloom

2 days ago

@AdvancedTweaker @user54216 @AntoineMECFS any chance something gives you hives and you can take a photo? I believe you can get it for asthma too. There's omlyclo a generic just approved in the US (I'm sure I'll be forced to switch sigh). Which is somewhat cheaper. Also there's a patient copay program in canada..

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GingerStripes @violentbloom

2 days ago

Tell the FCC to Keep KGO-TV on the Air! abc7news.com/post/tell-fcc-…

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GingerStripes @violentbloom

a week ago

@theBrianaMills @ricosangel333 I know about that. And my savings in a 401 k vanished due to the stock market so I was trapped in an abusive relationship or be homeless. So avoid 401Ks. It was very bad and I almost didn't survive it.

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GingerStripes @violentbloom

a week ago

@dysclinic I have a genetic variant that means a regular test is falsely high, MMA is the better test. But I feel better when B12 really high right after a shot. So I suspect genetic related?

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S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic

a week ago

Many patients with #dysautonomia, #MCAS, HSD/hEDS, #LongCOVID, #MECFS and autoimmune disorders are taking all types of vitamins and supplements. I do not offer an opinion on those because "we just don't know." But the reality is that not everything is going to be harmless...

Medscape @Medscape

a week ago

Glucosamine, a popular joint-pain supplement, may worsen outcomes in people with mild cognitive impairment (MCI), and a newly identified metabolic pathway involving excessive protein glycosylation could help explain why, new research suggests. In a large electronic health record

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GingerStripes @violentbloom

a week ago

@user54216 @AdvancedTweaker @AntoineMECFS It goes one way or the other. It's a miracle for us. For some esp with EDS it goes very badly. My pain 75% better. IF you try it start with a tiny dose. I take the largest dose allowed twice a month. If it stops working ever, I may no longer want to live bc it's that good for me

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GingerStripes @violentbloom

a week ago

@Lillikarina2022 @AntoineMECFS it's little pharma selling those crappy poorly manufactured generics that are really hurting us though. propublica.org/article/fda-ge…

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GingerStripes @violentbloom

a week ago

@greatscottysco1 @AntoineMECFS just use ranitadine, which actually works much better-via Dr Afrin. and also personal experience though just fyi the new rx only formulation may cause mcas :( back to getting it through my weird online pharmacy.

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GingerStripes @violentbloom

a week ago

@AntoineMECFS LDN compounded didn't work for me either though btw, but i can't metabolize opiates and maybe more issues with that pathway that is relevant. currently importing brand name meds from canada because insurances knows generics don't work but won't pay for brand. :(

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GingerStripes @violentbloom

a week ago

@AntoineMECFS failed on brand or failed on generics? also have you had your metabolism genetically tested (or 23andme and then geneticgenie or geneticlifehacks??) most generics fail for me at this point, and with the exceptions of genetic enzyme issues, the brand name tends to work.

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GingerStripes @violentbloom

a week ago

@drseanmullen sucks that I can't get vaccines (and even if I did, it would only tank my immune system without any bonus). It's maddening that people who could get vaccines don't! like can we trade, you clearly don't value your functioning immune system anyway!