First Interview – Mast Cell Activation Disorder 

It’s been a while since I posted any new writings on “The Life Unexpected”. There is good reason for that. Our journey to unravel my youngest daughters mysterious disorder has taken many twists and turns and has led us to uncover a disorder we, as well as many of her doctors, had never heard of, Mast Cell Activation Disorder (MCAD).

Originally my daughter was diagnosed with juvenile fibromyalgia/chronic fatigue syndrome and in an effort to help her and others I did several interviews with renowned fibromyalgia and chronic fatigue experts to share with my listeners. I now feel compelled to let you know about MCAD and mast cell disorders as I truly feel it is at the core of the problem for many (not all) suffering with fibromyalgia and many other debilitating mystery illnesses, it was for my daughter.

drt

Mast cell disorders, once considered to be rare may actually be more common than previously thought and are often misdiagnosed or are comorbid with many disorders: Fibromyalgia, Chronic Fatigue Syndrome, Autism, Lupus, Chronic Lyme Disease, Interstitial Cystitis, multiple Sclerosis, Postural orthostatic tachycardia syndrome, (POTS, also postural tachycardia syndrome)Ehlers–Danlos syndrome (EDS), Neuroanatomia and many others. This devastating and mystery illness is difficult to diagnose and treat. Most patients see dozens of specialists before, if they are lucky, they uncover the organic basis of their widespread pain, fatigue, severe allergic reactions, debilitating migraines, neurological and brain fog.

To better help you understand the myriad of symptoms that add to the confusion, here is a short list of commonly associated symptoms and complaints:

hot flushing
palpitations
lightheadedness
headache
shortness of breath
chest pain
nausea
diarrhea
stomach pain (sometimes severe)
Migraines
loss of appetite
weight loss
swelling of the liver, which can cause jaundice (yellowing of the skin and eyes) and make you feel lethargic
swelling of the spleen, which can cause abdominal and shoulder pain
joint pain
swelling of the lymph nodes
weakness
fatigue
changes in mental state, such as confusion, irritability, poor attention span and impaired memory
urinary symptoms (needing to pass urine frequently, or pain when passing urine)
Low Blood Pressure (Hypotension)
dizziness
fainting
blurred vision
general weakness
muscle,bone and connective tissue pain
Brain fog
Life threatning anaphylaxis:

breathing difficulties
dizziness
swollen eyes, lips, genitals, hands, feet and other areas (called angio-oedema)
itchy skin or nettle rash (hives)
a strange metallic taste in the mouth
sore, red, itchy eyes
changes in heart rate
a sudden feeling of extreme anxiety
unconsciousness due to very low blood pressure
abdominal cramps, vomiting or diarrhea
fever

I am truly honored to have Dr. Theoharides join me for this interview. A scheduled 40 minute interview turned into an hour and twenty minutes, that’s how loaded with information it is!

We discuss it all:

What are mast cells
What is the cause of mast cell disregulation
Diagnosis difficulties
How do mast cells affect pain
Mast cells in the brain
What causes delayed reactions
Known and unknown Triggers
Stress, anxiety and panic
Treatment options
Elimination diets
Antihistamines
Antidepressants
Medication sensitivity
Food intolerance, sensitivity or allergy
Environmental allergens and mold toxicity
Supplements – What they are and how they work
Neuroprotekt
Autism and mast cells
and believe it or not … much more

Theoharis C. Theoharides, M.S.,
M.Phil., Ph.D., M.D., F.A.A.A.A.I.
Dr. Theoharis Theoharides is the
Director of the Molecular
Immunopharmacology and Drug
Discovery Laboratory, as well as a
Professor of Pharmacology,
Biochemistry and Internal
Medicine at Tufts University
School of Medicine and the
Sackler School of Graduate
Biomedical Sciences, Tufts
University, Boston, MA
(www.mastcellmaster.com)

Dr. Theoharides received all his degrees from Yale University and he is the only one of six graduates
since Yale was founded in 1701 that received five degrees from Yale. He also received a Certificate in
Global Leadership and Management from the Fletcher School of Law and Diplomacy at Tufts University
and was awarded a Kennedy Fellowship for an MPH at the JF Kennedy School of Government at
Harvard University. He is a member of 17 scientific academies and societies. He has published over 320
research papers and 3 textbooks. He has been placed in the top 1% of authors most cited in
pharmacological and top 5% of immunological journals. He helped develop the Department and Graduate
Studies in Pharmacology and Experimental Therapeutics at Tufts, of which he was the Director of Medical
Pharmacology (1986-1993). He served on the Students Promotion Committee, three Curriculum Revision
Committees, two Accreditation Subcommittees for Basic Sciences, as well as on the Program and
Faculty, the Promotion and Tenure, and the Strategic Implementation Committees. He has trained 28
high school students, 30 college students, 16 medical students, 22 Doctoral, 7 Masters and 50 postdoctorate
students. Dr. Theoharides has served on 19 different NIH Study Sections, on the Board of
Directors and on the Executive Committee of the Brookline Education Foundation, the Hellenic CollegeHoly
Cross (Brookline, MA) and as the Clinical Pharmacologist of the Massachusetts Drug Formulary
Commission (1983-2012). In the Hellenic Republic, he served on the Board of the Inst. Pharmaceutical
Res. and Technol. (IFET) and Special Advisor for the establishment of the Laboratory for Drug
Bioequivalence (1994-1999), as Chairman, Intl. Committee for Medical Education of the Ministries of
Education and Health (1995), on the Supreme Scientific Advisory Health Council, Ministry of Health
(1997-2001), on the Supreme HealthCare Board of the Institute of Social Welfare (IKA), Ministry of Labor
and Social Insurance (1999-2002), and on the National Public Health Council, Ministry of Health (2003-
2008). He helped establish and is the Scientific Advisor for the Allergy Clinical Research Center at Attikon
Hospital (2005-2012), Athens, Greece, and was visiting Professor at Athens University Medical School
(1985, 87). He also served on the Committee for Research Evaluation, Italian Ministry of Universities and
Research. (2005). Dr. Theoharides was inducted into Alpha Omega Alpha, the National Medical Honor
Fraternity, and received over 20 awards including the Tufts Alumni Award for Faculty Excellence, twice
the Distinguished Faculty Recognition Award, ten times the Award for Excellence in Teaching, New
England Medical Center’s Oliver Smith Award “recognizing excellence, compassion and service”, Boston
Mayor’s Community Award, the Boston Diocean Award, the Dr. George Papanicolau Award, and is
“Archon Ieromnemon” of the Ecumenical Patriarchate of Constantinople. Dr. Theoharides is much more
than just a dedicated teacher, eminent physician and pharmacologist. He goes a step further in posing
new theories and defining the cutting edge of translational research. He was the first to show that mast
cells can be stimulated by non-allergic triggers, such as stress hormones, to secrete inflammatory
mediators selectively, as well as secrete mitochondrial components extracellularly that are misconstrued
as “innate pathogens” leading to auto-inflammatory responses. Dr. Theoharides is passionate about
mentoring young medical scientists, extends his expertise beyond theory into practical options, and offers
hope for patients with diseases that have defied treatment to date.

Listen to the interview

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Watch My Mystery Symptoms and Mast Cells:

 

Second Interview

Brain Allergies and Autism

The best discoveries are often found completely by accident. It seems that may be happening again for Autism.

Dr Theoharis Theoharides (Dr. Theo) from Tufts University, has come across a breakthrough in Autism.

Several years ago when Dr Theoharides was researching a completely different disease called Mastocytosis, he noticed an extremely high co- occurrence of Autism in these people. Through a simple survey it was found that 10% of people with Mastocytosis also had an ASD diagnosis. That raised a big red flag to Dr. Theo since having that big of an increase of having a disease within a certain population ( 1 in 10 for Mastocytosys) compared to the regular population (1 in a 100) points to a direct connection. This compelled Dr. Theo to do testing of autistic children and lead to the discovery that autistic children had activated Mast cells.

Activated mast cells cause many of the same symptoms found in autistic children. Listen as we discuss how mast cells can affect behavior, language, stress and neurological symptoms.

Click on the player box below to listen

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3 Responses to Dr. Theoharides – What do mast cells “Mast Cell Activation Disorder” have to do with pain, fatigue, allergies and even autism

  1. Pingback: Fatigue and EDS | Oh Twist!

  2. kristi parr

    I have 2 teenage daughters 15 and 17 with dysautonomia, POTS, NCS and mast cell. Times are hard. I believe with the stress I am starting too.

  3. Susan Gannon

    i have had Pots since I was 13 years old. I am 54 years old and I have developed Mast Cell Activatin the past two years. I enjoyed the video. Please send me any websites or information. Thanks, Susan Gannon

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