My mystery symptoms and mast cells

[kariivins-senft]

My heart goes out to all those who suffer from this hideous illness and who have endured years of misdiagnosis like my daughter and I.
At times mast cell has stopped us in our tracks and we have lost everything tangible from medical debt and the love and support from our family and friends as no one has believed us. We are isolated and often sick with some sort of symptom. God bless you people in this video for making this more known. I will help, I will be an activist.

[eleicajunstrom]

I pray that this doctor can find a cure or the medication to make living with this disease bearable. I know we all know this statement, "I am so tired of being sick and tired.", but truly, I feel that I am at the end of my rope. Thank you for posting this video. It has giving me something to hope for and to hang on to.

[dancalmusic]

This video is from February 2015 - In August 2018 nothing really changed: ME/CFS and MCAS continue to be diseases for the sufferers but not for the medical community. The cornerstone of the solution hasn't been posed yet, sadly.

[gracieparker]

I have this debilitating syndrome, 5 of my 6 children hate me as sometimes I was bedridden during their childhood. I am poor, on disability, they are embarrassed of me. My family does not believe me and has poisoned the children’s minds against their own mother. I have made poor choices based on this illness which has severely affected my life. People abuse me constantly due to this, people are mean and selfish. When I try to explain it to them they say I am a hypochondriac and self absorbed. I struggle everyday trying to improve my symptoms. I never give up. I know I can get better than I am now. It’s cold outside, I react to the cold, the heat, smells, forest fires and the list goes on.

[jorunnjohnsen]

This fantastic man has all the answers and a focus on all affected organs

[ancientmoonhealing]

I am diagnosed at 37 years of age; finally, and doctors are shocked by my glee in finally knowing what is wrong. Yes, I live with these symptoms everyday, I live it...and I know. It feels really good that I won't be classified as a doctor "seeker", and that there is an answer.

[fuelerr]

I am Lyme positive (15 yrs) and have recently been diagnosed with Mastocytosis. My LLMD suspected me of having either MCAS or Mastocytosis after i stopped responding to my Lyme treatment (some Lyme symptoms and mast cell issues are easily transferable and the fact i had elevated Tryptase). I have had long term brain fog, gut issues, CHRONIC fatigue, bone pain, gluten intolerant and was diagnosed with Hashimotos Thyroiditis and Adrenal fatigue. Recently started to have acute and chronic anaphlaxis. Flushing, facial and throat swelling, nausea and dizziness are now big issues i have daily. We need to get the medical community to open their minds to these diseases and except them as real issues. I spent years going from dr to dr being told i had fibro, chronic fatigue syndrome or (like most people out there in our positions - stress or "its all in your head" diagnosis) before i was tested for Lyme and now MCAD. For those of you out there who haven't been diagnosed yet but know there is something wrong Do NOT give up. Find yourself a good GP and start from there. I have been on a 20 year path of dispair and frustration before getting here. I wish I was not here and were fit and healthy but wishing does not get you anywhere. A BIG thankyou for posting this video.

[vjcarter]

I went on Vacation to visit my mother and I was will my husband and his daughter, and I can totally relate to that feeling of loneliness when people don’t acknowledge the issues or ask how you’re doing.

[philosophiedesgesundwerden]

I´ve been suffering from eczema from the day that I was born, then followed by food allergies, seasonal allergies, asthma, later neurological problems, fatigue and extremer environmental and food reactions, mostly still with the skin, also hives, flushing, mental problems, energy and mood problems... I noticed that I can fight histamine reaction with ascorbic acid (intravenously is better to protect the gut) because it destroys the histaminmolecule in the blood (see Reinhart Jarisch for reference). But I had eczema reactions which looked the same but didn´t respond on vitamin c so they seem to derive from other inflammatory mediators. My major triggers are: Mold (I think due to an IgE reaction, and thats why I feel much better in summer), histamine in aged food, oxalates, citrates, maybe orotates, fructose. I live mostly of meat, vegetables, coconutproducts, butter and rice, in that order. I don´t have to take any medication and can already tolerate many more foods. I think healing is possible! Bulletproof diet and Paleo Autoimmune protocoll helped alot because I´m convinced that MCAS is an inflammatory condition and can be healed with food and lifestyle. What also is healing to me is making holidays in environments like islands or in desert climate where there is no pollution, no agriculture, no pollen, no mold. There I suddenly can tolerate almost all foods.

[alexweiss]

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,

[erin-leighgallop]

Very informative. Getting this properly diagnosed is difficult.

[JohnBedson]

When a doctor tells you that it's all in your mind, anxiety and stress are the cause of your illness, you need cognitive therapy, they are telling you that they are too ignorant and lazy to figure out your disease and that they want you out of their office as fast as possible and don't come back.

[evl]

Very interesting that he said steroids can make it worse. I think this happened to me.

[rebeccachitham]

Great video. Thank you so much for sharing. Keep up the good work team

[vidfio]

I have most of these symptoms and been diagnosed with Fibromyalgia. I always think that I am misdiagnosed. Can one have Mast Cell Activation Syndrome or Mastocytosis and not have flushing or hives and anapylaxis shocks?

[paulojustinianookubo]

Can severe itchiness with out rash be a symptom as well? I have pain brain fog prostate pain gastro problems like burning. Idk whats going on as I feel I am losing my mind and drs can't seem to find my problem

[banzobeans]

I do hope they took a good look at B12/folate.

[kattsqueen]

Sounds so much like me.. I also researched and began to find my answers.. Andersen Tawil syndrome+ and Ehler Danlos or some other type of connective tissue disorder. Very large family tree also discovered I descend from almost all of the founders for genetic disorders in Canada.. the original settlers. Autonomic type symptoms. triggers are sodium, carbs, exercise heat and cold intolerance. Periods of extreme weakness are less severe now that I take large doses of potassium magnesium and many vitamins etc. Physical signs in my family are scoliosis, jaw finger and toes. Lidocaine resistance and paradoxical reactions to med.. life is tough sometimes. I have been diagnosed with Andersen Tawil syndrome clinically and am improved with neuroprotective diet and supplementation. Am hoping to try dichlorphenamide now that it will soon be available in USA.

[brykateemma]

He talked about coming out with a cream to help us masties, well, I wish Burts Bees would start selling their carrot cream again because that seemed to do so much for me! I miss it!

[virginiatozier]

He's absolutely wrong about soy. Epidemiological studies of Asian countries have shown dramatically less incidence of breast cancer. Until that is the started eating the western diet and left off their traditional diet.
Isoflavonoids are highly refined and belong in mooned diet.
As with any advice, trust but verify.