Mast Cell Activation Syndrome: More than “just allergies”
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- Опубликовано: 29 сен 2024
- Dr. Anne Maitland presented this webinar about mast cells and EDS/HSD on July 11, 2018. Much more information about Ehlers-Danlos syndromes and hypermobility spectrum disorders is available at ehlers-danlos.com.
My self-diagnosis of EDS with MCAS was confirmed today by a geneticist. Feels like the first day of the rest of my life.
Hi, I'm so happy for you! I know how you feel, I'm still waiting for a diagnosis. Now that you know what you have, I wish you to get better and have a wonderful life.
@@vi4670 That is so sweet! Thank you so much, and I wish the same for you. I hope you get some answers soon and can begin to feel better!
@@glamcat7948 thank you!
Exactly the same boat I relate so hard! Just got officially diagnosed. I’m so happy for you!
@@gulthomas Oh my gosh, same to you! I hope this sets you on a path to feeling better soon 🙂
Ok, finally watching after it sat at the top of recommends for weeks.
Funny how algorithms tend to diagnose me better than my docs.
So, thx youtube . lol.
Thank you so much. You have gave me hope to continue the search for my health. With this information I am ready to talk to my doctor. Thank you from the bottom of my heart.
You are so good, you were speaking about me ,heredity trapetase beta with mast cell disorder and a immune levels that just not right. Next week I get blood work for PI. Maybe this Maybe conclusive o my immune system being borderline after the vaccine challenge
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This woman is a modern day HERO! If only the “masses” in the medical and psychological world would submit their egos of uninformed education to this message. So weary of being told it’s all in my head. Suicidal weary. A life destroyed due to medical ignorance and arrogance. Thank you Dr. Maitland
I'm so sorry to hear how much you're struggling. I've been really ill (and getting worse) with a whole host of garbage for the last 20 years, so roughly 60% of my life. I'm a *beast* when it comes to dealing with pain, pressing on, and keeping the complaints mostly to myself. So that definitely makes all of the stupid "stop being dramatic" scoffing-type remarks from both doctors and the general public extra irritating.
I want you to know that you aren't alone out here, and I really hope that you continue forward with life. I spent some dark years wondering whether it is worth it. For me, God, my faith, and the love of my family kept me from doing anything rash, and I'm very thankful for that now! My physical situation is worse, but my mental situation has become really happy and peaceful as I focus on the positives and count my blessings. Please don't let harsh people convince you to take your own life. They have no idea what a good job you're doing with the battle of just getting through your average day with your health complications, so their opinion doesn't count. Please reach out (multiple times to multiple people if needed) if you are seriously considering hurting yourself.
I don't know if you're a praying sort of person, but I am, and I'm praying for you right now. I know it is so hard. Hang in there. ❤️
I understand completely, 50 years of physicians thinking I am a hypochondriac, exaggerating symptoms, and the list goes on. A recent diagnosis of two rare conditions led me to this as yet another possible answer to so many health issues that have cost me so much of my life. 🙁
I hate when people especially doctors say it’s all in your head
@@mungbean345 Jesus Christ is the way
Don’t give up! I went through decades of ignorance and thanks to the Internet we are being empowered!
You know what I'm tired of? Anaphylaxis. It's not fun. I'm also tired of being told to take antihistamines and carry an epi pen, followed by a total lack of interest on finding a cause. Six decades of gaslighting by men doctors.
I hope that the Ehlers-Danlos Society puts a lot of effort into communicating this information with physicians around the country, because most doctors consider any highly-educated patient a hypochondriac. The more I know about MCAS, the less doctors take me seriously. I am stuck on 100% OTC medications because there is only one doctor in the entire state of Minnesota who treats MCAS, and he is three hours away and won't even run the 24 hour urine test on me because it's not practical due to the distance.
I had a pulmonologist wave me off this week as I mentioned my allergist/immunologist/asthma specialist I'd just seen felt I have mast cell issues. He insisted I needed HIS asthma test, in 4 weeks because he was not ready even though my appointment was set up a month back, and that the asthma center was not as good O_o. I will not be seeing him again and will stick with the allergist/immunologist.
Who is the one doctor? I'm in Minnesota too.
Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Paperback - April 20, 2020
Munchausen or Missed Diagnosis?
By Anne L Maitland, MD, PhD
March 16, 2020
www.doximity.com/articles/bded7804-8de3-442e-ae26-6e335ab8a150?
I am ever so thankful for this information. Dr. Maitland, your presentation has been tremendously helpful in supporting my journey and asking the right doctors the right questions.
Bless you and the tremendous work you are doing!🥰🙏🏽🌻
Not practical? I'd see if you can order it, have it picked up, or drop it off at the post office.
You know you have MCAS when people tell you..... "you're just allergic to life"...... am I right? Doing much better with H1 and H2 antihistamines and a low histamine diet but it is VERY restrictive. Am waiting on an immunologist for better treatment. Daily doses of Vit C also help me greatly too and peppermint tea
What kind of h2 do you take? I tried taking but even with h2 and vit c, I get reaction. Filters and preservatives maybe the culprit.
@@nant6071 I drink Soluble VitC in a large glass of water with a few different vitamins and minerals every few days using that days glass of VitC drink to wash them down. It mostly works for me, nothing is a perfect fit.
I use vit c also but quercetin has been wonderful for me.
Thank you 😊😍
Have you tried some mullein? Been tested for Alpha 1 antitrypsin deficiency?
No one in the medical community takes me seriously. I've had problems since 2009. I only recently learned of mast cell activation. Going to try quercetin. Idk what else to do to find a doctor who will listen to me. Finding a doctor like this is like finding a needle in a haystack.
You could call around to a variety of pain clinics or physical therapy clinics and ask them if they work with EDS patients. When you get a yes, ask which of the eds doctors do they work with. And voila, you can go to that doc!
Did quercetin help?
@coobroobloob Try Dr Kate Barnes ..she is an EDS MCAS specialist based in UK. If your not in UK she has sine excellent youtube videos to self manage MCAD. Brilliant dr as she too is sufferer....
Tried it and didn’t notice any difference at all so stopped spending bucks on it but drinking aloe Vera juice every day has helped me tremendously
I have been suffering for years with so many food sensitivities, chemical allergies etc you name it for years. My skin breaks out into rashes so bad that I bleed. Inflammation constantly to the point that my face morphs on a drop of dime into someone I don't recognize. Heart palpitations, dizziness, brain fog, I've have low calcium, iron deficiency - corrected via multiple infusions. RNP high, ANA positive... and doctors do not know what to do with me. I was told by my Immunologists that I do not have MCD because anaphylaxis is not involved, but I disagree.
However, I cannot find another doctor in my area AT ALL to help me. I feel so depleted. I've been to rheumatologists, dermatologists...No-one seems to know anything about this disorder/disease.
I appreciate you posting this video & your bringing awareness to this disease more than you know. My body has taken such a toll on the chronic inflammation that I am beginning to just accept that until I am dx with some dreadful disease that I will not get the help I need.
Chemicals*
add also quercitine and see if that helps.
and go and see mast cell specialists not just random immunologists
Have you tried low dose Naltrexone, LDN is a compounded prescription that is an antagonist that helps your body to regain homeostasis.
I think this is one of the greatest reasons why the modern medical system is failing us!!! Each dr. is only interested in their little part of the body so people with multiple issues never get to put it all together into what is really going on. I have long thought that whatever is going on in my body is systemic and listening to this lecture and others about mast cell issues has convinced me that this could be what I’m dealing with. All the weird physical problems that I’ve been dealing with are explained and tied together in a beautiful bow!
Wow your expertise on this is seriously good, as you mention it took you 10 years to gain this knowledge and it clearly shows. It's amazing how you incorporate so many different parts of the body to find a solution to mast cell activation , more of a whole body approach. Thanks for taking the time to make such an extremely informative webinar. I doubt one could find someone with more knowledge on this subject 10/10.
I got my tryptase blood test done today for MCAS. I have had 2 hospitalisations from 2 anaphylactic attacks in 5 months. Hoping to get to the bottom of this soon!
Good luck! Hope you find answers!
I think I have this to a lesser degree. When I was 18, I was bitten by a tick and contracted Lyme disease. I spent the next couple of years, pretty sick. It started with GI issues. Chronic constipation that was set off by a myriad of food intolerances. Severe gluten sensitivity. Soy intolerance. If I ate at a Chinese restaurant, I was sick for days after I'd eat. I eliminated gluten and changed my diet. I lost weight and started feeling better after I "recovered" (or so I thought) I'm in my mid 30's now and I'm experiencing a lot of very weird symptoms relating to MCAS. I'll have different symptoms that usually take 3-4 weeks to resolve. A couple of years ago, I started drinking a lot of Kombucha tea and eating Kimchi (both fermented and high in histamines). I was putting my body in shock. I developed globus pharyngis. It's the sensation of having a lump in your throat (though nothing's there). That finally went away, but I would notice random different parts of my body being affected by different things. There'd be times where I'd have severe insomnia which nothing I took, helped that in any way. Then I'd have periods of having really irregular heartbeat/palpitations. Then that would go away and I'd have abdominal bloating or diarrhea. Once that resolved, I might have bladder issues or skin rashes. These ailments were never at the same time. They'd move around, appear and then leave as quickly as they came. I still have severe seasonal allergies and allergies to dust mites. I'm currently dealing with random numbness and tingling in my extremities. Occasional muscle fasciculations (twitching). I've started to eliminate high histamine foods and take anti-inflammatory supplements such as Quercetin, Vitamin C, Curcumin, and Luteolin,
Hey this sounds exactly the same symptoms I’ve been having for the last 5 years on and off ,I also got bitten by a tick in my teenage years
Sounds like what I’ve been struggling with my whole life probably starting with puberty then taking off in my teens. Been difficult to deal with, work, have kids , live by myself
Rule out mold biotoxin illness ❤
I am 66, and was put on Atarax as a child. After several mastocytomas, and research, I realized that was what I needed again. It cleared up, But I need to find a doctor that understands, and doesn't ignore me. Where do we find à doctor that WILL KNOW?
She says that she will write a booklet soon available. Is it available yet? From where and what is it called?
Here is the presentation she used, if this is helpful: www.ehlers-danlos.com/pdf/2018-annual-conference/A-Maitland-2018Baltimore-EDS-and-its-fellow-traveler-MCAS-S.pdf
Three years later, the medical "professionals" still have no clue. Patients are tortured physically/emotionally/physically/etc., shoved down the proverbial rabbit hole, neglected, and insulted to boot. Insurance companies use this to reduce costs.
Horse poop. There's no reason for patients _not_ to have pharmacophobia and white coat syndrome. I've waited almost 59 years to meet a real medical professional in regards to Ehlers-Danlos and/or any comorbidities of it.
Thank you for your voice of sanity.
I to waited to 58 to get diagnosed with heds and mast cell , over years destroyed lots of muscles and nerves. 18 operations. I feel for all of you. Will pray for all of you. Amen
@@jefferyashmore6477
I did farm and animal related work. Nearly 60 now. Not doing so well. I've turned down surgeries repeatedly. EDSers don't heal like non-EDS folks. Hang in there. Breathe.
@@rhondalmcintosh-tipton3653 you know all about it I dearly sorry for your sufferings, I wish and pray for your future.
@@rhondalmcintosh-tipton3653 do you have mast cell also I started cromolyn stabilizer today. My regular dr started me on Singulair for breathing issues a ND iron pills for anemia. Helped immensely before I was given heds and mast cell verdict. I had suffered breathing problems my whole life. And yes been ridiculed by parents and doctors as well as work place until they found out what was wrong. I love the farm and raising animals and I coached kids as long as I could as children is our future. Take care. Jeff
I have alot of these symptoms. It's a life of constant suffering 😖😑
Why do all these people whisper? I am asleep within moments.
Thank you for this video it help educate me on my symptoms when I got diagnosed with POTS post covid I did my own research for years I been having mysterious symptoms today my Dr put me o Cromolyn the first dose amazingly has stopped multiple symptoms I pray this helps me get a positive to MCAS since my triptase is normal.
I was fortunate that my first anaphylactic reaction to an insect sting happened in a medical facility. Immunotherapy and future insect stings almost killed me. I learned about mast cell disorders
It's looking like I have this from poor air quality at work 😔
Does this Dr. still practice and does anyone know if she sees patients over zoom or telehealth related who cannot travel to her? I need her expertise so badly but have no way to get to NY to see her.
While there is a lot of information in this video, I wish there were links to the doctors and society websites that Dr. Maitland is referencing in this lecture. Unfortunately the information is not helpful in practical use by a patient to obtain appropriate medical support in the general community.
Is there a transcript of this webinar? I have listen and watched a few times. It's very informative! I would like to print this out for my doctor so that it is easier for her and I to refer to it as we decide on the next step.
@@cop67 I just found the webinar recording on their site and even though there are transcripts available for some of the webinars, unfortunately there is no transcript available for this one. Can you guys make one available on that site? Maybe put the direct link in these comments?
Any time I mention You Tube my doctors want to send me out the door.
@@cg00000 for good reason
Learning so much from this- thank you SO MUCH!
QUESTION: What happens when I have all the symptoms but have recently become highly allergic to Benadryl and that hydroxyzine has zero effect?
Hi Ashley, our helpline team will be able to advise on your question, you can speak with them here: www.ehlers-danlos.com/eds-helpline/
Based on the fact that mast cells are local, and mostly immobile, that one of their roles is local tissue repair and local tissue growth, apparently their immune function would also be local. They probably are not designed to deal with systemic problems, since they all act locally/independently, which can't be a reasonable strategy. Say for example if there is a severe tissue deficiency of B1 all over the body, the local cops start shooting all over the place, collectively causing the MCAS symptoms.
Do you know of any direct correlation between Alpha 1 antitrypsin deficiency (carriers) and MCS? Any use of Cyproheptadine to treat? Studies, References?
Thank you.
Is it possible that arterial or compressions of a nerve can activate mast cell as a warning signal?
Amazing incredible knowledge and medical information on stuff was never looked into forever!
It is such a great opportunity to be present and to listen to this mind blowing interview.
It is an EYE OPENER!
Looks like most drs will certainly have to study medicine all over again to understand the critical importance of mast cell activation syndrome in the total care of the patient!
Because, they are all over the body, internal and external and have a definite role to play constantly, if I understood some of the message Dr Maitland imparted.
I thank you profusely for bringing her on your channel so folks world wide could get educated on the crisis, which is also triggered by Covid19 apart from almost everything including neurology.
Could you pls post her website details here kindly.
I would like to consult with her as soon as possible.
Wishing everyone good health and love❤
pk.
Excellent presentation. The comprehensive information, visuals, analogies and context is phenomenal. The responses to questions were specific and detailed enough to provide a roadmap to seeking solutions.
I’ve been dealing with asthma and chronic hives for about eight years now. Recently my symptoms skyrocketed. Without any control, the hives get bad enough to trigger suicidal thoughts because living under constant unrelenting itch 24/7 is a fate worse than death. After looking more into MCAS I’ve realized my allergist is doing the absolute bare minimum, borderline nothing to help me at this point. Thank you for the education. It’s given me the insight that this isn’t as mysterious as my previous doctor had lead me to believe. And that there are other options to try before going on immunosuppressants. Thank you
I had shingles and lyme disease and now I have some sort of histamine issue and food allergies
Get checked for alpha gal syndrome and hate ticks worse. Same problem here. Test is $50 bucks. Tell the doctor about your tick bites. I'm positive for it can't eat nothing.
Is ME/CFS/Fibromyalgia/Long covid MCAS?
I did a RUclips video explaining eds and how it’s affecting kids now please help bring awareness to eds hypermobile type or any type because it’s affecting children now.
I think the Ehlers-Danlos society already does bring awareness to EDS ;) It has always been affecting children. It's an extremely common disorder, despite what doctors like to tell themselves to justify refusing to help us.
@@chironOwlglass I agree but I wouldn't say extremely common, like I don't know anyone with eds
It has always affected children, They are just beginning to recognize it more often now
@@chironOwlglass I have heds and mast cell too 58 years to get figured out. Labeled hypochondriac, depressed ect. No matter how many muscles torn joints injured, allergies to everything ect. I know how you and these people feel
Being male was even harder to get diagnosis.
there should be more awareness with MCAS and hope doctors learn this from patients and hope they are open to learning..
I'm happy to find this video and will be discussing this with my doctor soon. I'm so scared to eat anything for fear of having an allergic reaction and I've been lucky enough not to go into anaphylactic shock. So far I've had reactions to shrimp, injected iodine, avocado, and tomato.
Hello I have mast cell and I have all this symptoms I am allergic to heat allergic to sweat when my adrenaline gets going to break out and hives I have breathing problems bone aches heart issue everything that you mentioned on here I'm on so much medication antihistamines nothing seems to work I am looking for help I see an allergies her name is Dr trepay in Oklahoma City it is a lot of test that you want to do and help me with but I cannot afford the text it is crazy how my insurance will not pay for the test that I need to be done to help me with this disease I am looking for help with this disease diagnosed with this disease for almost 3 years my doctor has been having me on so much medication for breathing I have anaphylaxis the sun breaks me out and turn my skin red my daughter has broken up with this so I think it is hereditary has allergies real bad but have not been tested for this disease yet if anyone knows how to help me please reach out to me and let me know and contact me so I can talk to my doctor about it here in Oklahoma I have tried all kinds of medication
If I suspect I have mcad or histamine intolerance, what otc antihistamines can I try? Fatigue, am pain & stiffness, feel sick 2 hours, bloating, food intolerance, sinus, dry nose, cough, pain all over. Fibromyalgia diagnosis 10 yrs ago.
So would Hashimoto's be enough of an auto immune condition to trigger MCAS? I def got the Hashimoto's from mold exposure! And my MCAS symptoms of food allergies and swelling started when I lived in mold. Dr Maitland is incredible.
A GP I have seen hadn't heard of tryptase!
Base tryptase 18-24 but that is called normal to borderline. If i don't do bone marrow, i am unaffected....
Great informative webinar, thank you so much ! 💞💫
So. If you deal with the underlined cause is taken care of.... They can stop misbehaving
Where is this 18 page questionnaire on Dr Maitland's website? I can't seem to find it?
HELP scratched in the skin CLASSIC!!!!!!👍
So this diagram shows heart palpations as pounding or racing, but what about the skipped heart beats? Is that common with this disorder too? Cuz that's the kind I have, on top of flushing, headaches, itchy skin (cant tell if its just dry or what), digestive problems, reactions to foods, acid reflux etc.
Our helpline team will be able to advise on your question, you can speak with them here: www.ehlers-danlos.com/eds-helpline/
CAn you link up with The Open Medicine Foundation. They are looking at the links between cfs /eds and have just discovered the mast cell activastion part..a littler behind the curve on that but cutting edge in other ways.
Integrative Functional Holistic!!!!!❤
great info!
Great info 🦓❤ thank you!
Thank you thank you for all the amazing information!
After my colonoscopy I woke to my lips& whole face was swollen & FULL blown flare/relapse!!!!!!! Thanks so much!!!!☮️
Fasting helps.
FYI. USA OTC blockers H1 - Benadyl and H2 - Pepcid = famatodine (heart burn)
Unfortunately Benadryl is a specific Mast Cell Activation contradiction. I used to use it until 1 teaspoon of children's liquid benadryl ended me up hospitalized & the doctor explained this to me. I take H1 & H2 inhibitors but NOT benadryl now.
I am worried about cancer risk... after the Ranitidine problems.
@@katfield13 please elaborate.
@@MK-mj9gx So at 1st when I started having bad reactions I used to take Benadryl & ranitidine together but then I started having overdose symptoms from 1 tsp of children's liquid benadryl (color free). I now take Tri-salts for my H2 inhibitor (antacid) & BHI Allergy (antihistamine) for my H1 inhibitor. You can get them from some health food stores or Amazon. They are gentle & natural but EFFECTIVE for my anaphylactic reactions. My reactions are throat & lungs swelling, chest pain, digestive upset & abdomen extreme swelling, nausea, diarrhea, confusion, clumsiness, extremely pale, feel like everything in my body is shutting down, & I'm going to collapse.
@@katfield13 does it happen immediately or a delayed reaction to allergens?
Am 48, and was so allergic to everything that I had allergy shots 2x per week from 6 months of age until 12 years of age, as well as daily allergy pills during that time. I was also diagnosed with ADHD and ADD...but I'm now realizing I was pretty hypermobile as a kid. Now my 24 year old daughter is having tachycardia, pre syncope, and digestive issues. She passed the 5 point marker for EDS by her rheumatologist. This video definitely helps to put the pieces together. Thank you.
She is great !!!
It’s definitely like trying to move a mountain .
I went to an allergist to find out what triggers me because everything affects me it’s like living in hell and my doctors don’t know how to help me .
I have hEDS and I have allergies of any anti inflammatory drugs and the sun and seem to have bad POTS attack and anxiety the day after drinking alcohol or having high caffeine but I don't have mast cell syndrome. It's not a daily issue for me. Its just once in a blue moon maybe once or twice a year. I feel quite lucky. As a kid though I did have a lot of allergies but I grew out of a lot of them at the age of 17. However I still have acid reflux if I eat sugar or highly processed foods but this is due to my slow digestion and slightly weak stomach muscle finds it hard to digest
Our family probably doesnt have EDS (we were flexible), do react since a child to oders ....Did try eyedrop (ketitefin) and cleared up pain. If try more than 2/week, got a cold, and rarely ever get colds or flu. Wonder if antihistamines can raise or lower immune responses. IgE showed no food allergies, just low to mold and dust mites. Wish didnt react so much to heat or cold, any helps on that besides dressing warm and moving around or bringing ice pack or wet scarf??
Μast cell activation syndrome pre-exist virus invasion or a virus causes it?
Can you recommend a specialist in Queensland, Australia?
wow i have this how do i get treatment
please reach out to our helpline for information and support at www.ehlers-danlos.com/eds-helpline/
I need this lady in my life! Did anyone find the book she made and does anyone know where to find it ?
I just found out that I have a rare form of Mast cell disease called Telangietasia Macularis Eruptiva Perstans.
I have the same, can you share your symptoms? Do antihistamines work for you?
@@mandyrose5822 sure I'd be happy to share. With me, the Mast Cell Disease comes out in my skin. I get rashes on my skin or welts on my head that itch and burn. I take 1 Benadryl every night and that helps keep it under control. I only use certain products on my hair - Clean and Clear Shampoo and Clean and Clear Conditioner that you can buy off of Amazon. I also watch the histamine levels in food. High histamine foods can cause me to break out, itch or get welts. I hope this info helps and good luck on your journey. It's not horrible once you figure out the triggers - that part just takes some time. 🙂
@@sheiladyck5863 I was dignosesed with a skin biopsy. My skin burns. Antihistamines have not helped me. I have small pinkish dots.
@@mandyrose5822 oh yes - that is how I was diagnosed as well - through a skin biopsy on my neck. I also have small pinkish dots on my skin. Also my head burns when I am in a flare. I guess what we have is very, very rare. I actually went out to Mayo Clinic in Rochester to be diagnosed about 1 year ago at the age of 58. I am sure sorry that antihistamines are not helping you and so sorry that you have to deal with this disease! I have other autoimmune issues - Rheumatoid Arthritis, Crohn's and Sjogrens as well.
Can you find triplicate gene with 23 and me raw data?
I wonder if HCG injections would help relieve this?
When I'm pregnant I feel so much better. You could be right
I felt amazing during my pregnancy. It’s the best I felt in my whole life, all of my EDS symptoms resided and I didn’t have any allergies.
@@shellyrae777I was the opposite. My HEDS was at its most extreme.
@@AslansAngel1 sorry to hear this 😢
What about PEA for madt cell
Where can we go for help?
What’s the overall prognosis?
Is there any in the uk ?
Anyone get dr Maitland website or contact info?
Hi Jackie, you can find Dr. Maitland at www.drannemaitland.net/dr-anne-maitland
Where is the booklet. I have a PCP at a major Hospital Clinic in Oakland, California. No one has ever “ seen” a client w hEDS before. I was just dismissed for being able to sit w my legs crossed at 65 with a neck stabization collar. I’m so sick and so scared.
dont be scared try to check if you ahem mast cell issues...often mast cell are responsable for hEDS.Antihistamine medications and quercitine can help you alleviate the symptoms.
I have MCAD. I was born w hEDS. I’m scared because I cannot locate a physician to help me.
I can’t take antihistamines I am missing the enzyme to metabolize.
@@claire5399 try dr Claire frankamano at Indiana University. I have same as you, that is her specialty. I am 58 had it all my life. My prayers go with you.
You are the best
EIA ?
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covid has brought me here to heal my pots
Nice
find a naturopathic doctor!!!
So I am seeing a connective tissue specialist who will test me for Ehlers Danlos. But it’s weird because I also have a couple Mast Cell symptoms.... I wonder if I don’t have Mast Cell and those are caused by Ehlers Danlos. Because I am not prone to many rashes and stuff. I am very sensitive to mosquitos though and I get bad reactions to them
MCAS has a wide range of symptoms. Your case might look totally different from someone else's. Ehlers-Danlos *causes* MCAS, so if you have EDS and MCAS symptoms, you have MCAS.
@@chironOwlglass nothing proves it though, it could be the other way around.Many dr seem to say the MACS cause hEDS as mast cell mediators could be responsible for the hyper mobility.......
What are the implications for allergies to vaccines? Since we are in an age of vaccines.
@@JDubzDrumz Please do. I was just diagnosed with Ehlers Danlos Syndrome. I have been suffering for years to no avail. During covid I took charge of my own health, I began research. I have a wonderful GP, who was willing to listen. I have the Pfizer vaccines now, I went in proudly with epipen in hand thankfully I didn’t need it!
@@JDubzDrumz Thanks for sharing. Postponed my vaccine to speak to my specialist.
They are a huge cause.
I would be wary of them. Especially emergency use authorization ones. These are not fully tested. Of course it's your body and ultimately you are in control of it . As we are seeing now many injuries and less efficacy. 🤗
The main cause I'd say.
Does anyone know the other conditions that might cause mast cell activation that she listed. I couldn't see them on the screen. Thank you in advance. I have positive skin biopsy for tmep but h1 and h2 has not worked for me.
EDS symptoms began June 2015. MCAS started March 2016. POTS began January 2017. Began wheelchair use Aug 2021. Official EDS, and idiopathic mcas diagnosis Sept 2021. My allergies list is longer than Santa's list.
The mast cell society has removed the doctor database in the USA
I think: Professor Theoharides view is more on point, do it could because this is a 4year old video.
has there been any studies linking PUPPS during pregnancy to MCAS? That was a weird rare phenomena I experienced when pregnant with my boys but not my daughter. I get random itching, but with PUPPS, the rashes were so weird and huge and incessant. Benadryl calmed it down, but I have weird reactions to Benadryl so I had to take teeny sips of it here and there to manage the PUPPS symptoms.
reach out to our helpline at www.ehlers-danlos.com/eds-helpline/
So it seems that if you have EDS, a genetic connective tissue condition that cannot be changed, and you experience mast cell activation you are screwed? Your just always going to also experience mast cell activation. Is that correct?
Mast cell is not automatically a companion to CTDs, but is more often than not. But there is treatment to manage mast cell activation that minimizes effects, as well as treatments that help manage other CTD symptoms.
Mast Cell disease is progressive. And medications for mast cell help but don't necessarily make life normal ever again.
As with any conditions, people sometimes experience spontaneous healing without any medical explanation. So, keep your fingers crossed for a miracle =) Beyond that, eliminating triggers from your life and taking an absurd amount of antihistamines and mast cell stabilizers can make a big difference. There are like 6 different OTC mast cell stabilizers. It's important to take those, not just antihistamines, because histamine is only one of the many things mast cells release. For example, all summer I was allergic to sunlight, and antihistamines didn't help at all because mast cells release tryptase in response to sunlight, not histamine.
@@chironOwlglass can you list some of the otc mast cell stablizers?
@@tommyboy1986 Quercetin, fish oil, reishi mushroom, and Nasalcrom are what I use. (oral cromolyn is prescription, but you can buy the spray OTC and mix it into a lotion for skin reactions.) Nasalcrom is the only reason I have not scratched all the skin off my body yet!
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I found the presentation used by Dr. Maitland: www.ehlers-danlos.com/pdf/2018-annual-conference/A-Maitland-2018Baltimore-EDS-and-its-fellow-traveler-MCAS-S.pdf