Anne Maitland - EDS and its Fellow Traveler, Mast Cell Activation Syndrome

[the.color.studio]

This is the most helpful resource on mast cells I have come across! I don’t get stereotypical skin involvement, but I think I’m having anaphylactic reactions to certain foods, chemicals, and I’m sad to say that I think I’ve started reacting to my ADHD medication. Allergy appointment in 2 weeks, if they say it’s nothing, I’m going to send them this video

[privateuser]

Dr. Maitland, thank you for this. I'm speechless. You have described a lot of the symptoms I've experienced from about the age of 2 onward. Unfortunately we live in Australia where EDS-knowledgeable medics who will treat adults are virtually impossible to locate. Took my daughter all the way to Chicago after years of problems and Dr. Tinkle diagnosed BOTH of us (surprised me) with EDS Type III. Up until listening to this video I didn't know asthma/allergies and EDS were connected. This information is invaluable and I'm very grateful.

[leannshort]

“Everybody else was staying in their corner of the sandbox”…. Boy doesn’t all of this ring true for me! Finally after almost 2 decades I will be seeing a Mast cell specialist and hopefully get some real help! All those years seeing every specialist under the sun! I can’t thank you enough for this video!❤❤

[robinhood]

After 7 years of unexplainable health isssues i was finally told i have a non specific auto immune disease. I had linked my problems with driving and thought it was related to vibration. After a lot of research i looked into pollution. I purchased a particle meter which showed low readings where i was rarely ill and high readings or extremely high readings where i was very often ill. After reducing considerable my symptoms with an active carbon paper mask i fitted my car with an active carbon filter instead of a pollen filter and avoided traffic pollution as much as possible. The improvement to my health is unbelievable. For the first time in over 7 years i do not have protien, blood or crystals in my urine. This has been accepted as a pure coincidance. I have at last been able to understand, thankyou.

[volkankurkun]

I am suffering from this, I have EDS, anaphylaxis occasionally, feels like I am dying when it occurs and nobody believes me for both conditions, EDS and that Mast celll thing.

[tamaraholloway]

Dr Maitland's voice is comforting as is having answers after 47 years and what I now know was a pregnancy loss shy of 6 months was a massive mast cell activation event in 2007, that caused pulmonary hypertension and enlarged right ventricle.
They never thought anaphylaxis because the er doc saw depression in my chart and said anxiety attack. The med he gave to lower hr immediately made me not be able to breathe worse and the dopamine in response to bring heart rate up triggered contractions.

Turned out I also had HELLP syndrome, but docs never figured out my heart/lung issue. Now I know. I wonder did the MCAS contribute to the development and severity at only 23 weeks?

[GodListens]

I take:
1. Zyrtec BID
2. Zantac BID
3. Singulair @HS
4. Quercetin w/Bromelein QD
5. Vit B complex, liquid
6. Vit D w/Vit K, liquid
7. Trace minerals zinc, magnesium are very helpful ...surprisingly so actually
8. Ketotifen eye drops (orally would be best but I don't have a RX)
9. If still get a flare, then I have homeopathic/natural remedies and am looking into Chinese medicine but don't know enough about it yet to feel comfortable taking.

I recently backed off of singulair /drug holiday and held quercetin (to be honest, just tired of all the pills). I ate cheese and had a huge flare. I get nauseated, lightheaded, vomit. Then I'm wiped out for a few hours. This isn't medical advice; just wanted to share so others can research it for themselves.

[dragonsclaw]

Most of what she is saying makes a lot of sense because I have been also labeled with Autoimmune disorders along with Ehlers Danlos caused by a new Gene not previously known in the database and they've never tested any of my skin or tissue biopsies to see what type of Mast Cell Activation Syndrome I have just been treating me continuesly with shots, inhalers, several different allergy and gastro meds a day, mast cell stabilizer, lots of antibiotics, neuropathy med, and immunesuppresant still nothing.

[leannshort]

now it hits me!!! RANTES is what may have very well been causing my Mast cells to go haywire!! I just had surgery by a biological dentist to remove 2 root canals and clean out wisdom teeth cavitations. Glad I did! I know it takes time for Mast cells to calm down, but hopefully soon! I also have chronic Lyme disease too so who knows…
So grateful for this video.

[MrYorickJenkins]

is your questionnaire available online?

[ryanrhodes]

Nutrition and functional movement
Exercise in a pool and rest and go again

[jackiesicilian]

Has xolair worked for anyone watching?

[larinavigil]

I wonder if you can test a mole instead of biopsy from colonoscopy to test for consistent mast cell overactivity?

[helenesmith]

I’ve been begging doctors to listen to me about Zyrtec-D since before I knew I had EDS. One day in my mid-40s I figured out that Zyrtec-D and Aleve taken together helped my fibromyalgia pain. By that time I was pretty sure that fibromyalgia could be a symptom Of something else. I researched it like crazy, and the closest thing I could find was a Doctor who was studying a link between sinusitis and chronic myofascial pain. I emailed him and did not get a response. I am relieved to know I’ve been on the right track. I take Zyrtec D almost every day I tell my doctors that I am doing it and no one is bothered by it.

Anne, do you classify EDS? I’m from NY and my daughter is in Brooklyn. I would definitely come to you. My rheumatologist confirmed EDS but said it looked like hypermobile.