Catherine w/ MCAS

MCAS = Mast Cell Activation Syndrome MCAS is the equivalent of having an immune system with PTSD Also have ME/CFS & Fibromyalgia

[Catherine w/ MCAS @MCAS_WTF]

@draparente @ahandvanish I've been on Dupixent for 4 years now. My asthma symptoms are gone — unless I'm in a MCAS flare. I have also recovered so many foods since being on Dupixent. Excellent choice for my MCAS, asthma, food Intolerance, and nasal polyps (yay, no more surgeries).

[Catherine w/ MCAS @MCAS_WTF]

@012so34 @Szyzygy2 @tessfalor Yes, and I have regained many more fruits as Dupixent helps with salicylate Intolerance.

[Catherine w/ MCAS @MCAS_WTF]

@AllyKeyLime Yes partly — degenerative disks are also high in MCAS. I think mainly from the hyper immune response. People with radiation exposure can also have an immune response that includes teeth degeneration.

[Szyzygy @Szyzygy2]

@JGjanegreen The Royal Prince Alfred Hospital's Failsafe project found food chemicals (phenols & amines) affect some peoples' behavior. It's not rare. Mast cell activation disease an underappreciated cause of neurologic and psychiatric symptoms & diseases.
https://t.co/Wrc0BcwAMH

[M. and S. Shaw @twoShaws]

@ahandvanish We're thrilled for the #LC community! The non-COVID #MyalgicEncephalomyelitis community has long actively supported #pwLC. The complete exclusion of non-COVID M.E. from the name and content of the Act is devastating. Will the LC community demand explicit inclusion of #nonCovidME?

[Catherine w/ MCAS @MCAS_WTF]

@elle_carnitine I had severe adverse neuro-psych reactions to Montelukast but have had good benefits and no adverse effects from Zafirlukast, another leukotriene modifier in the same class. Very helpful for reducing prostaglandins. Others I know also fine on Zafirlukast when not on Montelukast.

[Catherine w/ MCAS @MCAS_WTF]

@chydorina @CasualUfc @Szyzygy2 Yes but only in those who are not Salicylate Intolerant. MCAS patients need to be advised of the potential adverse effects in the high number of those with MCAS that are intolerant to flavonoids due to Salicylate Intolerance.

[Catherine w/ MCAS @MCAS_WTF]

@CasualUfc @Szyzygy2 @chydorina Flavonoids are high in Salicylates which can cause numerous adverse effects up to and including anaphylaxis. Many patients with MCAS are Salicylate Intolerant.

[Catherine w/ MCAS @MCAS_WTF]

@remissionbiome @ScienceNews @PutrinoLab Congratulations. What a good article.

[Catherine w/ MCAS @MCAS_WTF]

Every. Last. Word. Of. This.

[Putrino Lab @PutrinoLab]

You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/

[Prof Brendan Crabb @CrabbBrendan]

There are words that we should banish & 'restrictions' is one of them. For one thing, most protections are barely if at all restrictive (clean indoor air, vax, testing/treatment, mask in high risk settings), & secondly what's more restrictive than having a debilitating illness?!

[🕸️Dr.T, PhD @chydorina]

@ShaneyWright This is true for many reasons but mast cell-microglial feedback loops are a big one. Mast cells release mediators that trigger microglia and activated microglia trigger mast cells - and round and round it goes. this is one of the mechanisms behind neuroinflammation.

[🕸️Dr.T, PhD @chydorina]

What is the ONE thing people need to know (about management/treatment) if they have #MECFS or #LongCovid?

In my opinion this post by @ShaneyWright would be in my top 3 for sure.

What is yours?

[Catherine w/ MCAS @MCAS_WTF]

@kenyaislove @nameandnumber79 @chydorina @DrSherr @remissionbiome Don’t be sorry, just know it’s not the same thing.

[Catherine w/ MCAS @MCAS_WTF]

@kenyaislove @nameandnumber79 @chydorina @DrSherr @remissionbiome Thanks but Spravato doesn’t have near the treatment response of infusions. Not even close. I’ve had intranasal ketamine in the past. It’s just not as good.

[Catherine w/ MCAS @MCAS_WTF]

@emmiskyten @chydorina @remissionbiome Dr. Theo Theoharides

https://t.co/tZxgRgyKVi

[Catherine w/ MCAS @MCAS_WTF]

@Sukischoe @AndrewG76201347 @PanickedFoodie Famotidine is an antihistamine. It is a H2 Blocker. H1 blockers are what you calling antihistamines. Better to also use MC stabilizers that keep MC's from degranulating instead of just trying to mop up the mess after the fact. Cromolyn &/or Quercetin (if not salicylate sensitive)

[Catherine w/ MCAS @MCAS_WTF]

@Erica2426324217 @manruipa @WesElyMD @dysclinic @LongCovidSOS @long_covid @LongCovidAdvoc @MECFSNews @zalaly @exceedhergrasp1 @chydorina @ahandvanish @polyspores_ Thanks

[Catherine w/ MCAS @MCAS_WTF]

@manruipa @WesElyMD @dysclinic @LongCovidSOS @long_covid @LongCovidAdvoc @MECFSNews @zalaly @exceedhergrasp1 @chydorina @ahandvanish I had severe EBV mononucleosis 50 years ago. Am diagnosed with Fibromyalgia (1996), MCAS (2016), and Dysautonomia—am currently being assessed formally for ME as seem to meet all criteria. My recent EBV #’s were crazy high.

[Catherine w/ MCAS @MCAS_WTF]

@manruipa @WesElyMD @dysclinic @LongCovidSOS @long_covid @LongCovidAdvoc @MECFSNews @zalaly @exceedhergrasp1 @chydorina @ahandvanish Thank you for all this. Though I don’t see Mast Cell Activation Syndrome (MCAS) mentioned and it causes many of these symptoms too and is highly comorbid in both ME/CFS and Long Covid patient groups. Does your model have some account of MCAS?