I am sitting here in tears, because sudden my life makes sense. I was dx'd with floppy joint syndrome and orthostatic intolerance at 17. Thought id learned all about it, then forgot about it, basically. Im 51 now, dealing with basically everything listed and i felt like i was losing my mind. Im waiting for an appointment with an EDS specialist for specific testing, and i will be discussing this possibility with them. Thank you for giving me a glimmer of hope!
Thank you for posting this podcast. Spreading awareness and information about MCAS is much appreciated by those of us that have this, as few doctors and medical practitioners have even heard of it. It is far more common, life altering and devasting than most people realize. Thank you again.
It looks like very many MCAS cases are caused by hidden mold in the living/sleeping rooms. I would recommend every MCAS patient to try to sleep in another house for 2-3 weeks and look what happen. Also try to cut out Gluten, Milk and Sugar from your diet
North Carolina chooses not to regulate mold, and many other hazards to human health. There's corruption that we have to fight to help each other equally.
You are right on target had it all my life actually got diagnosed correctly a few months ago. Mcas, heds, tachcardia, Gerd, sibo, lbs, and more. Cromolyn oral solution has done wonders for pain and neuropathy. Been abused by medical field for years, been told I was crazy, hypochondriac ect. 18 operations latter and multiple destroyed muscles, injuries joints ect. I am a 59 year old male, disabled now. You are right on track. Jeff from Illinois usa.
Also took Tylenol 3 pain killers for over 30 years worked in warehouse heavy lifting and so on, also lot of computer work at desk. Since cromolyn have taken only 2 Tylenol 3 in 4 weeks.
how did you get a proper diagnosis for this? I've seen a neurologist, rheumatologist, allergist, cardiologist. None of them seem to understand this problem. I also worked in a distribution center and high EMF environments.
@@Zematus737 a rheumatologist that specializes in mast cell and ehlers danlos dr frankamano at Indianapolis. I have hypermobile type that does not show up on genetic testing.
Thank you for your presentation. My oldest daughter has been diagnosed with MCAS and I'm showing a lot of the symptoms as well. Now my youngest daughter is showing symptoms at 9 yo. Getting a diagnosis and treatment is challenging, even in the US. We lucked out and my daughter had an elevated tryptase when her other labs were drawn. We all suffer, but struggle to find the answers, validation, and support we need.
MCAS, widespread body pain and neurological symptoms are what I have experienced post C19 vaccine as millions of others for nearly 3 years now. It mirrors Long C19. I know for absolute certainty because it started within only hours and I've met so many with the exact same issues (or worse). There's groups all over the world of thousands upon thousands of us. I've not had C19 yet. Everything was caused by the jab. I would love to have my life back as it was taken instantly. Thank you, Dr. Virginia McEwen for posting such valuable information. Is there a list of doctors who recognize these conditions in the U.S.? I am repeatedly told I just have anxiety. My arm could be falling off and I would still be told it's anxiety. With the two pages of symptoms I have had and still have, of course I have anxiety, but that is not the root cause for all of my symptoms. Plus, studies have shown that the C19 vaccines cause dysautonomia and anxiety itself so, it's not in my head. Doctors refuse to do ANY in-depth testing or even simply, be curious and caring at all. No doctor has ever even ordered a vitamin / nutrient panel and I simply cannot understand WHY doctors do not start there as the first test always (other than the big payouts and ties they have with Big Pharma). I'm saddened to know that millions are going through this not realizing it's from the jabs as there was no informed consent.
Are you hypermobile if you are get tested for heds heds and mcas come together if you have that get tested autism ADHD I have the all with fybromyalgia CFS causation albeit unknown because big pharma drs don't want you to know there legalised drug dealers
Thank you for this informative discussion. The information you've shared will make a significant difference, and I will ensure it reaches all my colleagues. We frequently find MCAS in many EDS patients. Still, we see more and more cases pop up in people without EDS who have been diagnosed with IBS, IBD (diarrhea and constipation), nausea and vomiting, autoimmune spectrum disorders, chronic urticaria, hives, chronic inflammatory brain conditions like ADHD/ADD, mood disorders, depression, bipolar, insomnia, the full spectrum of neurological conditions, red, scratchy and blurry eyes, sinusitis, chronic pain syndromes (esp ice pick or debilitating localized pain) cervical injuries, food sensitivities, celiac, toxic exposure (esp mold) and POTS and the lists go on. You are correct that the diagnosis is tricky, especially when ordered in the ER or from an allergist or specialist. Tryptase is elusive, and even 24-hour n-methyl-histamine won't reveal much - because you have to catch it right when it's happening! These mediators don't always present which makes this diagnosis tricky - and though not the best, sometimes we do resort to mast cell stabilizers to calm things down and they work MOST of the time while we look for the triggers - infectious (usually) stress and toxins, This education is not just for people with an EDS diagnosis but for everyone with this sequelae. I am grateful for your erudite discussion and attention, especially with pain patients.
I felt a warmed heart as I listen to your introduction. I wish all the primary physicians that failed me had your passion and drive to be curious. I have Systemic Mastocytosis and it took years of bad diagnosises and therapies to get that Dx. It took one curious allergist to run a tryptase on me after she had read about SM. Then on to BMB. It’s been hell. Fragrances in perfumes/colognes, laundry, deodorants, air fresheners etc shut my respiratory system down. People don’t believe it, even some relatives leave their glade plug ins in, knowing I’m coming over. Thankfully im on bezuclastinib now and it’s been miraculous.
Also: When you have SM, you often have MCAS coupled with it. Meaning my body makes too many mast cells but those mast cells are also hypersensitive on top of that.
After dozens of specialists, I had vitamins labs done, which included Vitamin C, which I had a severe deficiency. I had taken 500mg twice a day without issues until I got an infected spider/tick bite, then quit due to reactions. 4 years later I pushed through and took Vitamin C and multivitamins, and things have greatly improved. My previous doctors ordered D3, B12 and folate, but none of the others. I have been able to eat beef again, and have been on a keto diet, and my GI symptoms have eased to where I stopped famotidine. I am also only taking diphenhydramine as needed. I previously was on Cromolyn Sodium, Xolair injections, and Low Dose Naltrexone with little improvement. Doctors should order vitamin panels, since many people are malnourished.
Wow doctor. You are so extremely polite and considerate. Thank you for your compassion explaining and guiding other doctors for us to be respected and validated. Do you have any input in future videos about the benefits of IV’s saline for MCAS patients? Thank you 🙏🏼
Agasp...That was Brilliant...with the science mapped out. I feel I 'm getting closer to understanding me. It appears we all are just beginning to see work in front of us is daunting. Head down ...move forward on all frontals. Thank you..
Dr. McEwen, thank you so much for posting and sharing this valuable information! And you did so perfectly! I wish I knew this information when I was going through the hell of medical mismanagement. The hope you bring to the Medical field is encouraging. Thank you again.
As a new born two moths premi- two weeks old , something set off my immune system. I was allergic to all forms of milk, severe asthma & allergies. I was allergic to dust, animals, smoke, grass, carpet, all but meat a few canned vegetables and a few fruits. Almost put in a bubble. I was allergic to the serum that held the allergy shots together and the syringe. My meds had to be special made outta state , given to me through a gold syringe and needle , or silver , I don’t remember. I had anaphylactic shock many times, severe asthma, severe allergies, bladder issues, welts, high fevers they iced me down in the hospitals. they had to ice me down, allergic to vaccines. Double lung pneumonia every year 1-2 times a year till I was 7 or 8. Fell out of a moving vehicle at four, hitting my head and causing severe migraines to hit , along with my allergies. We suspected I was allergic to my fluctuations in hormones.I couldn’t breath out both nostrils till 7th grade. Grade school and younger, I woke up eyes sealed shut from dried crust from allergic reactions. By junior high , I could eat many foods , and less reactions. Eventually I rarely reacted to much even lungs were great. 2007 I get Lyme , 100s of nymph ticks all over me. Got bit again in 09… realized Lyme wasn’t going away , treated then hit it hard from 201 0:405-19 Get CoVid , whole body nerves went on fire, felt like I was radiated inside. 2021 dr put me on ivermectin to treat Lyme coinfection, year later my Lyme is in remission. From late 2019 -2021 I had wide spread neuropathy, I also had a tumor on my pituitary, causing adrenaline dumps. Dr believes after 3 years of digging, I got reactivated MCAS . Only it was attacking my organs , nerves and brain, not how it was when I was young. I had so much adrenaline I had became my own epi-pen. Which is why we think my throat wasn’t closing and swelling shut like it did when I was little. Why it took so long to figure out. I’m 2021 everything went boom, CoVid brain infection 🤷🏼♀️ but I hallucinated, personally change, never violent, but sometimes got angry , didn’t call people names, but mostly fled or froze, …. autoimmune immune encephalitis. I lost almost every friend I had, a fiancé… no one believed I was hitting a ten pain in my nerves every 4 hours when my meds wore off. Three years of the worst hell and torture!! I had natural childbirth with one of mine, and this pain was way worse. But you can’t just go around screaming 🤦🏼♀️ I stayed in shock three years , in severe pain , 3-4 hours sleep. MCAS!! Dr believed the only reason i wasn’t having seizures was all the adrenaline. When I had the huge reaction in 21, I couldn’t eat for like 6-8 weeks, everything burned. Organs kidneys!! I ate just a bite of a cracker brand from Europe , a cracker or two for 8 weeks. Before we realized it was MCAS. I’m allergic to vaccines , medically excused for decades. The allergist I had for 25 years wouldn’t see me unless I got a vaccine, neither would the neurologist. My family Dr and I researched and we stumbled on MCAS. It wasn’t called that when I was little. So I’ve been on antihistamines, other things, cannibis is what I did for pain… needed opieds but no way was I getting on them. I feel like iv been tortured half my life
I this is amazing..your describing all my symptoms. And my triggers..I have constant pain..some days worse than others..diagnosis fybro..in 2008..I never believed it was…I got friendly with a girl who was Auvhedic..she told me two years back she thought this was what I had..
What I don’t like about these talks is that they never talk about prognosis, potential for remission, maybe root causes… it’s only depressing to hear, to be perfectly honest.
I believe my baby has been suffering from long COVID symptoms. She got it along with our family when she was only 2 months old. After this she became extremely allergic to almost all foods. I strictly breastfeed so I am on a very limited diet. It’s getting to me mentally. I am so restricted sometimes I don’t produce thick enough milk bc my baby cries a lot and wakes up often at night. I’m just starting to realize it could also be the way I’m not handling histamine well
Blessings, you both will be fine when time evolves. All breasth milk is very thin looking that is natura for all of us. I nursed total of 5 years. Old days we believed a big spoon of 'brewers yeast' in water ...due to the high Vit B results may help you both if you get this??? Don't doubt t yourselves. You both are expressing a very anxious time, also natural. Love your your selves. My old heart in the UK reaches to you both!
I have a question around 29 minutes where you talk about nerves registering pain. I have a question or challenge to that. As a long term back pain sufferer I've done extensive research on that topic. My understanding is that the latest Neurological stance on pain is that there are no nerves which register pain. Pain is said to be an output of the brain based on multiple factors. The nerves register physical phenomenon such as pressure and temperature but not pain as such. Just wondering if there is any clarification on this very important point?
I have high prostaglandin d2, Experience severe muscle pain, bone pain.Weakness stomach issues and anxiety and nervousness. started taking ketotifen, It helped a lot, gastrochrome Seem to make me worse.What else do I need to be doing. Is still have no energy and very weak.
I have had all the symptoms of MCAS lifelong but have no hope of finding a doctor who either believes this syndrome exists or would be willing to refer to one who does, even if such a person exists in my country (UK totally broken health system). Have seen a top immunologist who shrugged me off with an M.E. diagnosis ignoring 90% of my symptoms, a GI specialist who dismissed my symptoms as IBS & told me to stop eating broccoli as my treatment! I have to rely on self treatment & OTC supplements. Any help in that direction would be so appreciated, there may be 1000s of us who may have no access to a doctor like you or the money to afford private treatment.
"Stop eating broccoli", i got told to only eat one one tiny yoghourt for desert instead of two. It fixed absolutely everything immediately. Oh no, not exactly, it did absolutely nothing whatsoever. It was about as effective as slapping myself with a wet fish 3 times a day (don't try it, it's a waste of time and the fish wont like it). My condition is now far less of a problem than it was. It wasn't what i was eating, drinking, thinking, or even feeling that was triggering my immune system. It was what i was doing that is the most important for the cells of my body, it was what i was breathing. The chemical composition of the air is not exactly the same as what we were designed to breathe, because of industrialisation, micro plastics, Nano particles, off gassing, vehicle exhausts, perfumes, paints.... the list is huge of things that modify the air. Some of us, unfortunately, have far more difficulty than others coping with the "new air". We can't do a lot about the general environment, but we can considerable change the chemistry of the air inside our homes, which reduces considerably our exposition to the things our immune system doesn't like.
Thanks, I've been working on this too with air filters. Everything is a potential trigger it becomes so tiring trying to work out what was the last thing that set off this round of flaring symptoms. In one now & none the wiser. @@robinhood4640
Is there any good research that might help explain why this and associated syndromes are overwhelmingly experienced by females? Is there any known association with childbirth, lack thereof or any birth control methods?
I dont really care what the name of the condition of health issues. The real questions are what causes it and what removes it. The other questions why are people more ill now with allergys. I am thinking Psudo-foods, latent (hidden)dental infections as in root canals etc. Heavy metals, molds- (biofilms) -candida, nutrient deficiency, parasites, RF, wifi, data etc. Gall bladder-liver stones. Neuro toxins, BPA's, acetylhyde air freshners chemicals from modern homes formaldahyde-chemicals etc.
Thanks so much for this talk on MCAS! I’m very frustrated with my current situation. I know there are specific criteria for diagnosing SM and MCAS. But what about Hereditary Alpha Tryptasemia as a genetic cause for MCAS? I was diagnosed with HATS earlier this year by my geneticist, in addition to my hEDS & POTS. The allergy/immunology specialist I saw told me that a lifetime’s worth (53 years) of insane symptoms, disability and invasive medical interventions due to anaphylaxis, immune deficiency, severe gastroparesis chronic migraine, seizures, anxiety, ADHD and chronic pain syndromes etc. don’t qualify as MCAS? Do you think I might be better served going somewhere else? Maybe I’m misunderstanding something, but my medical records are packed with blood tests, elevated tryptase levels and other objective findings to support that the extra ALPHA tryptase genes that I have would explain my living hell! Could you possibly give me your opinion! Thanks again for this very helpful and easily understood video. I wish more primary care physicians would take more of an interest in MCAS and treatments for it given that 17% of the population suffer from it!
Do you happen to have Asperger's with your heds your insane symptoms sound lot like mine 26 years I haven't had tryptase levels checked far as I no my mum has severe ms trying to get her home at this moment from hospital terrible what we have to go threw
I have MCAS fibromyalgia definitely. I was just wondering could the Epstein-Barr virus and or herpes virus basically could any virus be the root cause of any of this????? Cromolyn sodium definitely works. Staying on an anti-inflammatory diet helps. This was an amazing in-depth video. Thank you so much🙏🏼💃💃💃💃
@@Amy-of7gw uneducated physicians in it for the wrong reasons I ask them straight out now do you want to go to heaven or hell amazing what response it gets
Such a great presentation, thank you ! I understand a bit better now how dasatinib ( protein tyrosin kinase inhibitor) taken for CML for over 5 years, has triggered this cascade of symptoms and stopping it along with great stress have worsened greatly this issue, that is MCAS. Would you agree ? Thank you ..
I very amazing video Can i talk to you? I need help i am in Montreal with very hard to have help and treatment Do you know doc like you in Montreal? Or around Merci
Doctor can I contact you anyway? I have a child with MCAS for 15 long years now. I think I understand what really happens. I am observing him for a long time, and live with mast cells reactions. Perhaps I can help understand this syndrome more. I would love to share with you what I have experienced with my son, and how did we deale with this for 15 y now. Mast cells do not "go wild". There is a reason. They do not lose chemicals because they are triggered. They do that in order to save someone's life. There is another creature that is the cause of the mess. And depending of the family of those bugs, you get different symptoms. I think I got it. I am a doctor...
I’m curious what this other element is. Myself and daughter are dealing w MCAS. Currently having my first experience w POTS that has made it hard to manage daily life.
@@ashleywuelfing4087 It is the air we breathe. The assumption that air is just air, is the problem. The chemical composition of the air is far more complex than, it's always been as it is, don't even bother thinking about it. We have been progressively modifying the chemical composition of the air we breathe, for many decades, and we can't get away with it forever, without it having a negative affect on our health. The oxygen is taken from the air and rushed to every cell of your body, to supply the much needed oxygen. When the cells somewhere in your body, anywhere, suddenly, for no reason, go "a bit mad", to use the medical explanation, do you think it is because the specific cells, suddenly became thirsty? Hungry? Psychologically stressed? Anxious? They received the order to do unnecessary stuff, for no reason whatsoever? All of this is extremely unlikely. Something triggered it. When you do things that trigger your problem, don't ask yourself, why is doing this or that triggering a flare? Ask what are you breathing while you are doing this and that?
I am sitting here in tears, because sudden my life makes sense. I was dx'd with floppy joint syndrome and orthostatic intolerance at 17. Thought id learned all about it, then forgot about it, basically. Im 51 now, dealing with basically everything listed and i felt like i was losing my mind. Im waiting for an appointment with an EDS specialist for specific testing, and i will be discussing this possibility with them.
Thank you for giving me a glimmer of hope!
Thank you for posting this podcast. Spreading awareness and information about MCAS is much appreciated by those of us that have this, as few doctors and medical practitioners have even heard of it. It is far more common, life altering and devasting than most people realize. Thank you again.
Do you have much fybromyalgia with your mcas and symptoms change over the years
@@Truerealism747 If you are asking me...almost none. Just not something I've ever really experienced, but I know many others do.
It looks like very many MCAS cases are caused by hidden mold in the living/sleeping rooms. I would recommend every MCAS patient to try to sleep in another house for 2-3 weeks and look what happen.
Also try to cut out Gluten, Milk and Sugar from your diet
Either mast cells are in a romantic relationship with mold.... Or at war or both. I doubt mold issues leave out mastcells.
Spot on.
North Carolina chooses not to regulate mold, and many other hazards to human health. There's corruption that we have to fight to help each other equally.
You are right on target had it all my life actually got diagnosed correctly a few months ago. Mcas, heds, tachcardia, Gerd, sibo, lbs, and more. Cromolyn oral solution has done wonders for pain and neuropathy. Been abused by medical field for years, been told I was crazy, hypochondriac ect. 18 operations latter and multiple destroyed muscles, injuries joints ect. I am a 59 year old male, disabled now. You are right on track. Jeff from Illinois usa.
Also took Tylenol 3 pain killers for over 30 years worked in warehouse heavy lifting and so on, also lot of computer work at desk. Since cromolyn have taken only 2 Tylenol 3 in 4 weeks.
So many us hear you.
how did you get a proper diagnosis for this? I've seen a neurologist, rheumatologist, allergist, cardiologist. None of them seem to understand this problem. I also worked in a distribution center and high EMF environments.
@@Zematus737 a rheumatologist that specializes in mast cell and ehlers danlos dr frankamano at Indianapolis. I have hypermobile type that does not show up on genetic testing.
@@Zematus737 most Dr's have no idea about any of it, we have found out
.
Thank you for your presentation. My oldest daughter has been diagnosed with MCAS and I'm showing a lot of the symptoms as well. Now my youngest daughter is showing symptoms at 9 yo. Getting a diagnosis and treatment is challenging, even in the US. We lucked out and my daughter had an elevated tryptase when her other labs were drawn. We all suffer, but struggle to find the answers, validation, and support we need.
MCAS, widespread body pain and neurological symptoms are what I have experienced post C19 vaccine as millions of others for nearly 3 years now. It mirrors Long C19. I know for absolute certainty because it started within only hours and I've met so many with the exact same issues (or worse). There's groups all over the world of thousands upon thousands of us. I've not had C19 yet. Everything was caused by the jab. I would love to have my life back as it was taken instantly. Thank you, Dr. Virginia McEwen for posting such valuable information. Is there a list of doctors who recognize these conditions in the U.S.? I am repeatedly told I just have anxiety. My arm could be falling off and I would still be told it's anxiety. With the two pages of symptoms I have had and still have, of course I have anxiety, but that is not the root cause for all of my symptoms. Plus, studies have shown that the C19 vaccines cause dysautonomia and anxiety itself so, it's not in my head. Doctors refuse to do ANY in-depth testing or even simply, be curious and caring at all. No doctor has ever even ordered a vitamin / nutrient panel and I simply cannot understand WHY doctors do not start there as the first test always (other than the big payouts and ties they have with Big Pharma). I'm saddened to know that millions are going through this not realizing it's from the jabs as there was no informed consent.
Are you hypermobile if you are get tested for heds heds and mcas come together if you have that get tested autism ADHD I have the all with fybromyalgia CFS causation albeit unknown because big pharma drs don't want you to know there legalised drug dealers
@guitarkatiedo you have fybromyalgia pain with your heds from mcas?
I probably have congenital MCAS (had problems all my life) but my symptoms skyrocketed after the Covid vaccines. As you, I didn't get infected.
I got it from the covid vaccine as well.
Thank you for this informative discussion. The information you've shared will make a significant difference, and I will ensure it reaches all my colleagues.
We frequently find MCAS in many EDS patients. Still, we see more and more cases pop up in people without EDS who have been diagnosed with IBS, IBD (diarrhea and constipation), nausea and vomiting, autoimmune spectrum disorders, chronic urticaria, hives, chronic inflammatory brain conditions like ADHD/ADD, mood disorders, depression, bipolar, insomnia, the full spectrum of neurological conditions, red, scratchy and blurry eyes, sinusitis, chronic pain syndromes (esp ice pick or debilitating localized pain) cervical injuries, food sensitivities, celiac, toxic exposure (esp mold) and POTS and the lists go on.
You are correct that the diagnosis is tricky, especially when ordered in the ER or from an allergist or specialist. Tryptase is elusive, and even 24-hour n-methyl-histamine won't reveal much - because you have to catch it right when it's happening!
These mediators don't always present which makes this diagnosis tricky - and though not the best, sometimes we do resort to mast cell stabilizers to calm things down and they work MOST of the time while we look for the triggers - infectious (usually) stress and toxins,
This education is not just for people with an EDS diagnosis but for everyone with this sequelae. I am grateful for your erudite discussion and attention, especially with pain patients.
I felt a warmed heart as I listen to your introduction. I wish all the primary physicians that failed me had your passion and drive to be curious.
I have Systemic Mastocytosis and it took years of bad diagnosises and therapies to get that Dx.
It took one curious allergist to run a tryptase on me after she had read about SM. Then on to BMB.
It’s been hell. Fragrances in perfumes/colognes, laundry, deodorants, air fresheners etc shut my respiratory system down.
People don’t believe it, even some relatives leave their glade plug ins in, knowing I’m coming over.
Thankfully im on bezuclastinib now and it’s been miraculous.
Also: When you have SM, you often have MCAS coupled with it. Meaning my body makes too many mast cells but those mast cells are also hypersensitive on top of that.
Bluzaclastinibe
bezuclastinib haha is the actual @@lane4294
Some family members are just assholes, plain and simple.
After dozens of specialists, I had vitamins labs done, which included Vitamin C, which I had a severe deficiency. I had taken 500mg twice a day without issues until I got an infected spider/tick bite, then quit due to reactions. 4 years later I pushed through and took Vitamin C and multivitamins, and things have greatly improved. My previous doctors ordered D3, B12 and folate, but none of the others. I have been able to eat beef again, and have been on a keto diet, and my GI symptoms have eased to where I stopped famotidine. I am also only taking diphenhydramine as needed. I previously was on Cromolyn Sodium, Xolair injections, and Low Dose Naltrexone with little improvement. Doctors should order vitamin panels, since many people are malnourished.
Wow doctor. You are so extremely polite and considerate. Thank you for your compassion explaining and guiding other doctors for us to be respected and validated.
Do you have any input in future videos about the benefits of IV’s saline for MCAS patients? Thank you 🙏🏼
omg 3 minutes in and you're already spot on with my neurologist's assumption about my diagnosis: functional neurological disorder 🙄
Agasp...That was Brilliant...with the science mapped out. I feel I 'm getting closer to understanding me. It appears we all are just beginning to see work in front of us is daunting. Head down ...move forward on all frontals. Thank you..
Dr. McEwen, thank you so much for posting and sharing this valuable information! And you did so perfectly! I wish I knew this information when I was going through the hell of medical mismanagement. The hope you bring to the Medical field is encouraging. Thank you again.
As a new born two moths premi- two weeks old , something set off my immune system. I was allergic to all forms of milk, severe asthma & allergies. I was allergic to dust, animals, smoke, grass, carpet, all but meat a few canned vegetables and a few fruits. Almost put in a bubble. I was allergic to the serum that held the allergy shots together and the syringe. My meds had to be special made outta state , given to me through a gold syringe and needle , or silver , I don’t remember. I had anaphylactic shock many times, severe asthma, severe allergies, bladder issues, welts, high fevers they iced me down in the hospitals. they had to ice me down, allergic to vaccines. Double lung pneumonia every year 1-2 times a year till I was 7 or 8. Fell out of a moving vehicle at four, hitting my head and causing severe migraines to hit , along with my allergies. We suspected I was allergic to my fluctuations in hormones.I couldn’t breath out both nostrils till 7th grade. Grade school and younger, I woke up eyes sealed shut from dried crust from allergic reactions. By junior high , I could eat many foods , and less reactions. Eventually I rarely reacted to much even lungs were great.
2007 I get Lyme , 100s of nymph ticks all over me. Got bit again in 09… realized Lyme wasn’t going away , treated then hit it hard from 201 0:405-19
Get CoVid , whole body nerves went on fire, felt like I was radiated inside. 2021 dr put me on ivermectin to treat Lyme coinfection, year later my Lyme is in remission.
From late 2019 -2021 I had wide spread neuropathy, I also had a tumor on my pituitary, causing adrenaline dumps. Dr believes after 3 years of digging, I got reactivated MCAS . Only it was attacking my organs , nerves and brain, not how it was when I was young. I had so much adrenaline I had became my own epi-pen. Which is why we think my throat wasn’t closing and swelling shut like it did when I was little. Why it took so long to figure out. I’m 2021 everything went boom, CoVid brain infection 🤷🏼♀️ but I hallucinated, personally change, never violent, but sometimes got angry , didn’t call people names, but mostly fled or froze, …. autoimmune immune encephalitis.
I lost almost every friend I had, a fiancé… no one believed I was hitting a ten pain in my nerves every 4 hours when my meds wore off. Three years of the worst hell and torture!! I had natural childbirth with one of mine, and this pain was way worse. But you can’t just go around screaming 🤦🏼♀️
I stayed in shock three years , in severe pain , 3-4 hours sleep. MCAS!! Dr believed the only reason i wasn’t having seizures was all the adrenaline. When I had the huge reaction in 21, I couldn’t eat for like 6-8 weeks, everything burned. Organs kidneys!! I ate just a bite of a cracker brand from Europe , a cracker or two for 8 weeks. Before we realized it was MCAS. I’m allergic to vaccines , medically excused for decades. The allergist I had for 25 years wouldn’t see me unless I got a vaccine, neither would the neurologist. My family Dr and I researched and we stumbled on MCAS. It wasn’t called that when I was little. So I’ve been on antihistamines, other things, cannibis is what I did for pain… needed opieds but no way was I getting on them.
I feel like iv been tortured half my life
Thank you for publishing this!
I this is amazing..your describing all my symptoms. And my triggers..I have constant pain..some days worse than others..diagnosis fybro..in 2008..I never believed it was…I got friendly with a girl who was Auvhedic..she told me two years back she thought this was what I had..
Long exposure to mold started mine. Well mold and severe stress
you made this information very digestible and entertaining
What I don’t like about these talks is that they never talk about prognosis, potential for remission, maybe root causes… it’s only depressing to hear, to be perfectly honest.
I believe my baby has been suffering from long COVID symptoms. She got it along with our family when she was only 2 months old. After this she became extremely allergic to almost all foods. I strictly breastfeed so I am on a very limited diet. It’s getting to me mentally. I am so restricted sometimes I don’t produce thick enough milk bc my baby cries a lot and wakes up often at night.
I’m just starting to realize it could also be the way I’m not handling histamine well
Blessings, you both will be fine when time evolves. All breasth milk is very thin looking that is natura for all of us. I nursed total of 5 years. Old days we believed a big spoon of 'brewers yeast' in water ...due to the high Vit B results may help you both if you get this??? Don't doubt t yourselves. You both are expressing a very anxious time, also natural. Love your your selves. My old heart in the UK reaches to you both!
@@spocksdaughter9641 awww thank you for your encouraging words 🤗🤗🤗
I have a question around 29 minutes where you talk about nerves registering pain. I have a question or challenge to that. As a long term back pain sufferer I've done extensive research on that topic. My understanding is that the latest Neurological stance on pain is that there are no nerves which register pain. Pain is said to be an output of the brain based on multiple factors. The nerves register physical phenomenon such as pressure and temperature but not pain as such. Just wondering if there is any clarification on this very important point?
I have high prostaglandin d2, Experience severe muscle pain, bone pain.Weakness stomach issues and anxiety and nervousness. started taking ketotifen, It helped a lot, gastrochrome Seem to make me worse.What else do I need to be doing. Is still have no energy and very weak.
I have had all the symptoms of MCAS lifelong but have no hope of finding a doctor who either believes this syndrome exists or would be willing to refer to one who does, even if such a person exists in my country (UK totally broken health system). Have seen a top immunologist who shrugged me off with an M.E. diagnosis ignoring 90% of my symptoms, a GI specialist who dismissed my symptoms as IBS & told me to stop eating broccoli as my treatment! I have to rely on self treatment & OTC supplements. Any help in that direction would be so appreciated, there may be 1000s of us who may have no access to a doctor like you or the money to afford private treatment.
"Stop eating broccoli", i got told to only eat one one tiny yoghourt for desert instead of two. It fixed absolutely everything immediately.
Oh no, not exactly, it did absolutely nothing whatsoever. It was about as effective as slapping myself with a wet fish 3 times a day (don't try it, it's a waste of time and the fish wont like it).
My condition is now far less of a problem than it was. It wasn't what i was eating, drinking, thinking, or even feeling that was triggering my immune system. It was what i was doing that is the most important for the cells of my body, it was what i was breathing.
The chemical composition of the air is not exactly the same as what we were designed to breathe, because of industrialisation, micro plastics, Nano particles, off gassing, vehicle exhausts, perfumes, paints.... the list is huge of things that modify the air. Some of us, unfortunately, have far more difficulty than others coping with the "new air".
We can't do a lot about the general environment, but we can considerable change the chemistry of the air inside our homes, which reduces considerably our exposition to the things our immune system doesn't like.
Thanks, I've been working on this too with air filters. Everything is a potential trigger it becomes so tiring trying to work out what was the last thing that set off this round of flaring symptoms. In one now & none the wiser. @@robinhood4640
Maybe this helps if you're not already familiar with it www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
This is fantastic. I have mcas, eds and pots.....
Any muscle pain
How do you keep mcas at bay?
Is there any good research that might help explain why this and associated syndromes are overwhelmingly experienced by females? Is there any known association with childbirth, lack thereof or any birth control methods?
It’s sex hormones
Charles Darwin had it with Asperger's
Thank you for posting 🙂
I dont really care what the name of the condition of health issues. The real questions are what causes it and what removes it. The other questions why are people more ill now with allergys. I am thinking Psudo-foods, latent (hidden)dental infections as in root canals etc. Heavy metals, molds- (biofilms) -candida, nutrient deficiency, parasites, RF, wifi, data etc. Gall bladder-liver stones. Neuro toxins, BPA's, acetylhyde air freshners chemicals from modern homes formaldahyde-chemicals etc.
You're bang on with your list !! 🤔 makes you wonder why there is this war on humanity!!
Would this cause lymph nodes to swell to large size and stay large? I was diagnosed with pots 2 weeks ago.
Thanks so much for this talk on MCAS! I’m very frustrated with my current situation. I know there are specific criteria for diagnosing SM and MCAS. But what about Hereditary Alpha Tryptasemia as a genetic cause for MCAS? I was diagnosed with HATS earlier this year by my geneticist, in addition to my hEDS & POTS. The allergy/immunology specialist I saw told me that a lifetime’s worth (53 years) of insane symptoms, disability and invasive medical interventions due to anaphylaxis, immune deficiency, severe gastroparesis chronic migraine, seizures, anxiety, ADHD and chronic pain syndromes etc. don’t qualify as MCAS? Do you think I might be better served going somewhere else? Maybe I’m misunderstanding something, but my medical records are packed with blood tests, elevated tryptase levels and other objective findings to support that the extra ALPHA tryptase genes that I have would explain my living hell! Could you possibly give me your opinion! Thanks again for this very helpful and easily understood video. I wish more primary care physicians would take more of an interest in MCAS and treatments for it given that 17% of the population suffer from it!
MCAS is genetic. MCAS is an overactive immune system.
Do you happen to have Asperger's with your heds your insane symptoms sound lot like mine 26 years I haven't had tryptase levels checked far as I no my mum has severe ms trying to get her home at this moment from hospital terrible what we have to go threw
I have MCAS fibromyalgia definitely. I was just wondering could the Epstein-Barr virus and or herpes virus basically could any virus be the root cause of any of this????? Cromolyn sodium definitely works. Staying on an anti-inflammatory diet helps. This was an amazing in-depth video. Thank you so much🙏🏼💃💃💃💃
Sure mcas is fybromyalgia
My doctor told me it was all bs🤦🏼♀️ looking for a new practitioner
@@Amy-of7gw uneducated physicians in it for the wrong reasons I ask them straight out now do you want to go to heaven or hell amazing what response it gets
I was always labeled from my doctor for years saying it’s your Epstein-Barr acting up. That’s a good question.
Try X 39 life wave patches and Modere trim and collagen to long to explain but my fibro pain in O and I’m feeling so much better. Only on it 3 months.
Thank you... Fyi the link for COPE has a subscription pay wall to access the link.
Thank you!
Dr. Virginia McEwen doesn't see patients via Telehealth in the US by chance does she?
I was very active and led a busy life like Becky ..also Cptsd..other trauma..
Can you recommend somebody in Europe to contact for help. I am sure I have this proble, for at least 40 years
Are you in uk go on the eds site for list are you hypermobile
Such a great presentation, thank you !
I understand a bit better now how dasatinib ( protein tyrosin kinase inhibitor) taken for CML for over 5 years, has triggered this cascade of symptoms and stopping it along with great stress have worsened greatly this issue, that is MCAS.
Would you agree ?
Thank you ..
I very amazing video
Can i talk to you? I need help i am in Montreal with very hard to have help and treatment
Do you know doc like you in Montreal? Or around
Merci
Anything in cci causing it in eds
Doctor can I contact you anyway? I have a child with MCAS for 15 long years now. I think I understand what really happens. I am observing him for a long time, and live with mast cells reactions. Perhaps I can help understand this syndrome more. I would love to share with you what I have experienced with my son, and how did we deale with this for 15 y now. Mast cells do not "go wild". There is a reason. They do not lose chemicals because they are triggered. They do that in order to save someone's life. There is another creature that is the cause of the mess. And depending of the family of those bugs, you get different symptoms. I think I got it. I am a doctor...
She’s in Ontario. Look her up on CPSO
I’m curious what this other element is. Myself and daughter are dealing w MCAS. Currently having my first experience w POTS that has made it hard to manage daily life.
@@ashleywuelfing4087 It is the air we breathe. The assumption that air is just air, is the problem.
The chemical composition of the air is far more complex than, it's always been as it is, don't even bother thinking about it.
We have been progressively modifying the chemical composition of the air we breathe, for many decades, and we can't get away with it forever, without it having a negative affect on our health.
The oxygen is taken from the air and rushed to every cell of your body, to supply the much needed oxygen.
When the cells somewhere in your body, anywhere, suddenly, for no reason, go "a bit mad", to use the medical explanation, do you think it is because the specific cells, suddenly became thirsty? Hungry? Psychologically stressed? Anxious? They received the order to do unnecessary stuff, for no reason whatsoever? All of this is extremely unlikely.
Something triggered it.
When you do things that trigger your problem, don't ask yourself, why is doing this or that triggering a flare? Ask what are you breathing while you are doing this and that?
A Dr what understand s with your personal experience does your child happen to be hypomobile
Does he have pain symptoms
Caused by Asperger's adhd
Meegwetch!