The Perturbed Axis of Mast Cells, Nerves, and Connective Tissue in Patients with EDS - Anne Maitland

Dr. Anne Maitland speaks at the 2019 Global Learning Conference on the effects of mast cells and how it relates to patients with connective tissue disorders, especially Ehlers-Danlos syndrome.
Transcript coming soon! Slides used in this presentation are available in PDF from bit.ly/2QSydSt

[@magicalpatterns]

This doctor is just a God sent. I hope she knows it.

[@denisegaur]

She's my personal doctor and yes I concur she is, I've learned SO MUCH from her.

[@mandyrobbins2160]

So much of this applies to me, and I have yet to have a doctor take me seriously when I talk about all of my symptoms being connected. Wish I lived close enough to have an appointment with Dr. Maitland. Asthma, hypermobility, anxiety, chronic hives, interstitial cystitis, irritable bowel, SIBO. The older I get, the worse everything gets. :(

[@sarahb.6475]

This was just so fascinating! I never knew the mast cells were the thing that heals your body! I had only heard about the reactions they cause. And I was just diagnosed with EDS today.

[@magicalpatterns]

I wish I can translate this into proper Spanish and all your conferences. The amount of people that need this information is just millions. An entire continent and more. I would do it in a heart bit. Let me know

[@lourias]

Wow! I just got approval to visit the Mayo Clinic soon becauseof my Mast Cell Activation symptoms. My grandson has a Connective Tissue Disorder. Yep, the more I collect knowledge, the more I self-diagnose. However, I did spend a year in medical school.

[@laureeovshak9310]

I'm Happy for you! I called Mayo clinic in MN and was told that they do NOT diagnose or treat MACS. Which Mayo clinic are you being seen?

[@lauragott2122]

Very, Very interesting! Very smart lady and well spoken, easy to understand. Thank you so much for this lecture!

[@jenniferschleyhahn3915]

Love this woman. So down to earth.

[@ElizabethMillerTX]

"Perturbed Axis" would be a good band name.

[@jonesy642]

My health story explained right before my eyes! All of the dots I have been connecting on my own, led by the first genetic test done for my daughter one year ago. We have a pretty damn interesting immediate and extended family "rare and hmmmm... we don't know what causes that" type of conditions. If I am able to catch the eye of any researchers, doctors and or any other beautiful humans with Ehlers Danlos Syndrome: dermatoporaxis type, hypermobile EDS, fibromyalgia, hives, shingles, IBS, gastroparesis, POTS, dysautonomia, and or many of the other comorbidities my daughter and I have ; )... please contact me!!!

[@saludny]

Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Paperback - April 20, 2020

[@anniewojtowicz9913]

Me too me too!!

[@lifewillbebetter2027]

Thank you.

[@azarhashemi3365]

Incredible infirmation

[@ezeid137]

Toxic mold exposure and pharmaceutical damage caused mine

[@kimtonearts]

It's great that u were able to get it narrowed down to one specific cause. Even better if they nailed down what type of mold, bc there are several, some may be harmless to other some are dangerous to everyone. Nothing, not even spoiled food bothers my husband... so tyring to share a fridge, much less a whole house, is a daily challenge or surprise (to say the least). The eye rolls Ive endured are well into the thousands over 28 yrs. Has allergy testing evolved to the point of identifying what type of mold you react to? There are so many types of mold... Some that are no prob in average ppl. Which is great for them. Sticking out like a sore thumb is no fun.. Im so, so, tired of these battles over eating, sleeping activities tolerated, activites desired, activities and chores still waiting for me to feel better... I get a little bettet then it hits me like a tidelwave, and Im down again. EDS and the co-illneses have just about kicked my butt, for wayyy too many years. I have no more endurance, or desire to be anyones lab rat any more.

[@knknn7286]

Such imp information. I have yet to get a gastro who is willing to look for mast cells

[@candyland8903]

What would you use to treat this if you have a patient who's allergic to azithromycin?

[@HouseKatArmy]

The house we live in has an asian ladybug infestation, and every year when they hatch I have exacerbations of my EDS symptoms along with MCAS symptoms

[@phillipyoung6573]

I tend to have high ferritin, and I have an allergic reaction to the proteins that make up ferritin, (glutamate acid and aspartic acids - excitotoxic) If I eat msg or aspartame etc, I am a lobster in a boiling pot. It does help to donate blood a couple times a year.

[@zebraplant5977]

Do you have hemochromatosis? If so...have you heard of "The Root Cause Protocol"? That group has a FREE downloadable manual about this. They are a Magnesium Advocacy Group. They, too recommend donating blood 2X a year. I've never gone for any of the ferritin test(s) they recommend. Instead, I believe I'll donate B.L.O.O.D. 2X/yr.

[@rainbowzebraunicornpegasus2962]

My 21 year old is in complete GI shut down and is now on TPN and all IV meds including Benadryl, Phenergan , and Diazepam. She was inpatient for 23 days. During this time, she had a GI bleed that necessitated an emergency EGD. I convinced her med team (along with the help of Dr. Linda Bluestein, MD) to have pathology to look at her mast cells. The report came back "Normal number and distribution." But no actual count. I am wondering if I should assume they truly were normal or if I should push for real numbers. I heard in a webinar that anything >20 per high powered field is indicative of MCAS. Even before this GP flare and subsequent shutdown, she was on everything except comolyn sodium and ketotifen and the symptom charts are check lists. Any advice?

[@matthiascaes9539]

Dr. Maitland says in the lecture that the shape of mast cells (round of spindle-shaped) is also important. Maybe you can check that?

[@patticakes74]

Check with your pharmacy , find out what antibiotics were last given, to your child, there stomach flora has been severely damaged 💔 go to a functional medicine, chiropractor with,, real credentials ,,ask for a m.a.p.p test ..wasting your time in hospitals $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

[@MichaelMerritt]

She’s such a badass.

[@jamesharrington8300]

Wow, watching my hives inflammation fade day after day until they completely vanished was such a relief, I went with what I pointed out and within the first 10 days or so the urticaria/angioedema was barely visible! I just go'ogled the latest by Shane Zormander and after 20 days my skin has never been healthier!

[@kimtonearts]

I wish all Doc wld see and listen carefully to this and find out how much better they cld be for patients if they'd stop running from EDS, Auto Immune and other dysregulation and difficult illness patients. They prefer easy patients. There arent enough good Docs who are willing to get in the trenches and help complicatedly ill patients. The more toxic the world has gotten, in every way possible, particularly man made items, the more all connective tissue is going to find it hard to cope with the many offenders bombarding the bodies special gate keepers. Plastics, for example, are so heavily used and obvious. So a young genious developed a paper bottle, but companies are slow to retrofit their mfgring processes... Till it hurts the greater masses or someone they love. They'd rather deflect than take a temporary hit on the stock exchange. Its obvious.. Too many Docs are unqualified... And avidance 🙈 🙉 🙊 is their go to response.