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

Рет қаралды 19,316

5 жыл бұрын

Anne Maitland discusses Ehlers-Danlos syndrome and its fellow traveler, mast cell activation syndrome; from the 2018 EDS Global Learning Conference Baltimore. The slides are available in a PDF from bit.ly/2018ConBaltimore - see also Dr. Maitland's “Living with mast cell activation syndrome” from the conference, • Anne Maitland - Living...

Пікірлер: 32

@privateuser3859 4 жыл бұрын

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.

@leannshort2211 Ай бұрын

How are you and your daughter doing now? I have probably been going through this since I was a kid. Only after I got Covid 3 years ago did all my symptoms explode and I have been miserable and my symptoms are debilitating. I had to leave work 2 1/2 years ago because I just couldn’t function anymore. After numerous Dr’s and specialists, I am finally seeing a mast cell specialist soon. I hope and pray to get relief. I hope you and your daughter are better! ❤️❤️

@the.color.studio Жыл бұрын

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

@leannshort2211 Ай бұрын

“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!❤❤

@robinhood4640 5 жыл бұрын

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.

@KakeKittyStyle 4 жыл бұрын

That's wonderful! Mine is triggered by sunlight and heat. Want to trade? Lol!

@GLGC688 3 жыл бұрын

Vibration can also trigger MCAS reactions, unfortunately, so you were right on that part, too.

@robinhood4640 3 жыл бұрын

@@GLGC688 Reading a book for two hours sitting on a running empty washing machine never triggered my problem. I can assure you i did a lot of vibrating, not once did it "trigger" a flare. If i was already having a flare, i would not do that because the pain would have been very intense. From what i now understand, mast cells liberate bradykinin, which has an affinity for pain receptors, so the vibration causes the receptors to be stimulated by the released bradykinin. If there is no bradykinin to stimulate the receptors vibration will not cause pain. Vibration will not trigger my mast cells ,but it will cause already triggered mast cells to become a problem. The vibration from a car or lorry doesn't trigger my mast cells, the smoke coming out of the exhaust pipe does. I can vibrate in a car for hours if the air inside is filtered without triggering my mast cells. If i sit 10M down wind from a running car or lorry, my mast cells will be triggered, yet i am not vibrating.

@tamaraholloway9634 3 жыл бұрын

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?

@dragonsclaw63 5 жыл бұрын

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.

@leannshort2211 Ай бұрын

Ahhhhh 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.

@GodListens77 5 жыл бұрын

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.

@SagCynthia 5 жыл бұрын

Thanks for sharing this. What is BID after Zyrtec and what is @HS after Singulair? I have been diagnosed with a mild case of EDS and mild case of POTS. I was told by two immunologists that I don't have MCAS. One did some testing, one only asked if I get hives (which I don't). All I know is I get sick or sickish constantly - maybe 14 times in last two years.

@claire5399 2 жыл бұрын

@@SagCynthia Exactly what is a “ mild” case of hEDS?

@Skittenmeow 10 ай бұрын

@@SagCynthiaon a prescription and in medical notes there is shorthand for how frequent to use a medication. The letters abbreviate Latin terms generally do don't need to learn the full sentence. - BID is twice daily, - SID is once daily, also sometimes written as QD (note two letters) in some countries. I was trained SID but that seems most commonly used in veterinary medicine. However my GP uses SID - TID three times daily - QID four times daily - EOD every other day - BIW twice per week - TIW three times weekly - PRN as required - q_h: If a medicine is to be taken every so-many hours, it is written "q_h"; the "q" standing for "quaque" and the "h" indicating the number of hours. So, for example, "2 caps q4h" means "Take 2 capsules every 4 hours There are more but look up prescription abbreviations or pharmacy terminology abbreviations

@Skittenmeow 10 ай бұрын

@@SagCynthiathere isn't mild EDS, though that's a misconception by some practioners. They could be considering how far across the diagnostic points you are, but depending on how good their history gathering is they will often miss major symptoms. Keep in mind the diagnostic criteria are extremely high for EDS, and many EDS people misdiagnosed Hypermobility Syndrome Disorder mainly because the assessment was lacking, or they didn't recognise relevant symptoms. There are multiple subtypes of EDS and depending on the type of collagen, elastin etc affected. Diagnosis can depend on type of protein affected, type of gene affected, inheritance pattern etc

@SagCynthia 7 ай бұрын

@@Skittenmeow that's confusing when you say "there isn't mild EDS." Years ago, I called the genetics department at a university hospital and they said there was. I've done a lot of reading, but obviously my knowledge is lacking compared to yours - and I read about people who have to wear braces and be in wheelchairs. I don't have any of that. Frankly, from the data I have, I believe mine is classic type. I have lots of symptoms, but non are disabling.

@volkankurkun8345 4 ай бұрын

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.

@MrYorickJenkins 2 жыл бұрын

is your questionnaire available online?

@ryanrhodes6471 4 жыл бұрын

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

@larinavigil5225 3 жыл бұрын

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

@larinavigil5225 3 жыл бұрын

I have a doc appt coming up on the 4th of Feb and wasn't sure if I should recommend blood over biopsy since I've never had any procedure involving the colon

@jackiesicilian5720 2 жыл бұрын

Has xolair worked for anyone watching?

@jackiesicilian5720 2 жыл бұрын

So ask my Dr to see an immunolgist?

@TheEhlersDanlosSociety 2 жыл бұрын

Hi Jackie, if you believe you have MCAS, a referral to allergy and immunology will help with a diagnosis

@helenesmith6923 5 жыл бұрын

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.

@JanGroh 5 жыл бұрын

I would check with your local support group in NYC for doctors in your area who can diagnose EDS. Anne is an immunologist who just happens to know about and appreciate the forms of EDS, but no, does not diagnose them. She is also slammed with patients from all over as she has sort of "gone viral" in the MCAS and EDS world. (I would try to see her for MCAS and MCA-ish issues if you're nearby despite the wait, yes.)

@JanGroh 5 жыл бұрын

oops, left off the link : eds-nyc.com/