GingerStripes

[GingerStripes @violentbloom]

@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.

[GingerStripes @violentbloom]

@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?

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

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...

[GingerStripes @violentbloom]

@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

[GingerStripes @violentbloom]

@Lillikarina2022 @AntoineMECFS it's little pharma selling those crappy poorly manufactured generics that are really hurting us though. https://t.co/LivgDy2dux

[GingerStripes @violentbloom]

@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.

[GingerStripes @violentbloom]

@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. :(

[GingerStripes @violentbloom]

@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.

[GingerStripes @violentbloom]

@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!

[GingerStripes @violentbloom]

@DiaryofaSickGrl the vet always has the plug in feliway cat hormones... the petrochemicals give me instant migraines..though the right mask helps ie for oil based stuff.

[GingerStripes @violentbloom]

@HumanManifold That you don't do a variety of things all the time is part of what makes time seem like it's going faster. :( it's extra cruel.

[GingerStripes @violentbloom]

@sun_in_winter12 @WIRED oh I'm sure it did something! cleared out your bank account. :(

[GingerStripes @violentbloom]

@DiaryofaSickGrl my physical therapist uses dryer sheets, my clothes smell like them just from laying on the table for a while.

[GingerStripes @violentbloom]

@CovidDataReport wrong tests perhaps.

[GingerStripes @violentbloom]

@taracdennehy that is barbaric... if it accidently came off they would have to change it. Though it's now monday-for next time. I hope you're hanging in there. Is there anyway you can learn to do it yourself? The last time I had a port we did it at home, the home health nurse showed us how.

[GingerStripes @violentbloom]

@taracdennehy Rhinocort Allergy (Budesonide) is box free and no scent. Might work instead?

[GingerStripes @violentbloom]

@taracdennehy Spraying the area with Flonase before I’ve heard helps but it does have benzalkonium chloride in it. You need a dressing change asap if you’re reacting. And without the skin prep hopefully it isn’t the cleaning stuff but there must be alternatives to that as well.

[GingerStripes @violentbloom]

@EveryLifeOrg If the FDA could kindly do their job to ensure safe and effective generic drugs for my rare diseases I would not have to pay out of pocket to get them from Canada where the DO actually bother to enforce standards.

[GingerStripes @violentbloom]

@1goodtern That is hilarious. We are at the mercy of everyone. I’ve had mecfs since 2000. And the amount of gaslighting was tremendous. Womens treatment in healthcare is so unequal, it’s far worse than people realize.

[GingerStripes @violentbloom]

@gymrat_bookworm @LauraMiers Xolair makes some of us worse. Like for years after taking it. It makes most of my pain go but it’s not a cure. We’re lucky it calms our MCAS.