Syndrome A

I have ME/CFS, EDS & MCAD. I'm looking for answers.

[Syndrome A @BeeHeron]

People With Joint Hypermobility Are Much More Likely To Have Autism. Why? https://t.co/crxg9RDUgb

[Syndrome A @BeeHeron]

@DanieBuzz You may want to see if Postural Orthostatic Tachycardia Syndrome (POTS) is a fit for your symptoms. Can cause chest pain and a rapid heartbeat when standing. It is commonly found with mast cell activation syndrome, which can cause a range of weird symptoms.

[Syndrome A @BeeHeron]

@TheresaLynnBoyk Hi Theresa, don't mean to stalk, but saw you on SBSK. have you ever heard of mast cell activation syndrome? It's associated with anxiety, gastroparesis and dark circles under your eyes. DM me if you like.

[Syndrome A @BeeHeron]

@exceedhergrasp1 Do you have the link to this study?

[Syndrome A @BeeHeron]

@ahandvanish @MrsRobi25154402 Also, many people in the ME/CFS community have discovered damage to the ligaments in their neck vertebrae which has resulted in subtle damage to the brainstem. The damage seems occur in some people because of inflammation or mast cell activity. Feel free to DM me, if you'd like.

[Syndrome A @BeeHeron]

@ahandvanish @MrsRobi25154402 You may want to check out mast cell activation syndrome. MCAS is quite common in ME/CFS. Mast cells are thought to relate to the out of control inflammation in Covid-19 and your collection of weird symptoms are a good fit for MCAS. https://t.co/Fblx3aITEe

[Syndrome A @BeeHeron]

@JanetDafoe This is horrid.

[Jennifer Brea🦒 @jenbrea]

Imagine if rather than a single TBI event you had a subtle, ongoing, never-ending, repetitive brain or spinal cord injury that got worse with movement. Might the symptoms also look something like this?

[Syndrome A @BeeHeron]

@SimonoffBob Ketotifen worked much better for me after adding a dash of benedryl. Neither worked super well alone for me.

[Syndrome A @BeeHeron]

@SimonoffBob @miss_carly_rose I think the fatigue and cognitive problems are also mast cell problems and fisetin is effective. I'm also one of the folks with neck issues, and I wonder if fisetin can suppress brain inflammation related to that.

[Syndrome A @BeeHeron]

@SimonoffBob I wonder how strong the effect would be in vivo. The paper also identified quercetin as a strong inhibitor of the thyroid enzyme and many people take that for MCAS. My thyroid has held steady so far.

[Sonya @sonya_lala_]

Before getting #MEcfs I used to b adventurous. I traveled the world. I climbed mountains. I hiked volcanoes. I met w Presidents. I helped those in need &made the world a better place

Now I’M in need. My life is small& suffocating. Im imprisoned in my sick body, shackled by MEcfs

[Syndrome A @BeeHeron]

@SimonoffBob I do take it alongside mast cell inhibitors, but the effect of adding on fisetin is really noticeable.

[Syndrome A @BeeHeron]

@SimonoffBob Wonder what it was you saw? I haven't seen anything negative yet. Fisetin seems to inhibit cancer related pathways and be neuroprotective in models of Alzheimer's and Parkinson's. It inhibits the central inflammatory protein NF- kappaB.

[Syndrome A @BeeHeron]

@SimonoffBob Fisetin, a flavonoid, suppresses microglial activation and inhibits mast cell activation. I use it and it is very effective for energy and cognitive issues relating to MCAS and hEDS.

[Michael VanElzakker @MBVanElzakker]

If there's one thing I could communicate to MDs, it would be that when there is "no clear cause," it is highly possible that it's because your testing is inadequate. I have no idea what makes some MDs seemingly believe they can test for everything happening in the human body.

[Syndrome A @BeeHeron]

Wow!

[Jennifer Brea🦒 @jenbrea]

“With traction, I saw, and met, a patient I had not known.”

A moving account of a neurologist watching her patient undergo the same two procedures I had: invasive cervical traction and a C0-C2 fusion. https://t.co/EKXTqnFUQT

#MECFS #CCI

[Jeff Wood @jeff_says_that]

Julie Rehmeyer, science writer and author of "Through the Shadowlands," has made a video about new developments in her life. Julie has had ME and mold sensitivity for years and has now been diagnosed with craniocervical instability (CCI).

[Syndrome A @BeeHeron]

@JoyChaos @HSDExplainsALot Everyone is different and has different responses to things, but I wrote up my experiences with a supplement called fisetin and anxiety here: https://t.co/DfcTXJcctw

[Syndrome A @BeeHeron]

@JoyChaos @HSDExplainsALot Autistic people have so many gifts to share, including novel and out of the box ways of thinking. As a culture and as a species, we would never want to lose those gifts.

[Syndrome A @BeeHeron]

@HSDExplainsALot I think the distinction between hEDS and HSD is arbitrary. One study found that on a microscopic level, HSD looks like hEDS, while neither looked like other types of EDS. I wrote an article about this: https://t.co/y1m3DxDip8