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Posted by on Jul 13, 2013 in Blog |

The Nocebo Effect as a Mast Cell Trigger?

The Nocebo Effect as a Mast Cell Trigger?

A member form the OnlineTMSSupport group called Dave, a.k.a. “reconstructions”, recently posted an interesting article about the nocebo effect and how his negative thoughts about his condition were making his life much more difficult. With Dave's permission, I am reposting his article in full for your own enjoyment and careful consideration.
Do your negative thoughts sometimes interfere with your wellbeing? Would you like to share the specific strategies you use to quieten your mind? Do you have strong opinions about the placebo / nocebo effects? Why not join us in the forum and have a chat about it? 

Hi Everyone,

I have been trying to put together some information on another major trigger for my mastocytosis which has caused me big problems in the past and which have I have been learning to mostly control.

I was very sick for a long time before I was diagnosed, and of course during this time I really suffered from all the kinds of non-specific symptoms which most mast cell patients have. Basically for 8 years I had weight loss, tremors, balance disturbances, tinnitus, diarrhea, dizziness, cognitive problems, anxiety, blurry vision, headaches, muscle pain, joint inflammation, anaphylaxis, gut pain, sleep disturbances, heart rate and blood pressure disturbances, thyroid and adrenal hormone disturbances, etc, etc.

Because no one could diagnose what was wrong with me, I became really anxious about my health, and the sicker I got, the more anxious I was. In retrospect it is clear to me that some of my worsening health had to do with anxiety attacks and gross emotional upset directly triggering my mast cells. But my worry about my health was kind of continuous, and most of the time I was not grossly anxious, but just really involved in trying to rationally figure out what was going on with me.

After I got diagnosed and started having reduced sensitivity to my major triggers (exercise, heat, cold, stress, food allergies), I began to notice that thinking about my health condition really affected the behavior of my mast cells. In order to avoid stress and get control of the mental part of my condition, I had been meditating 2-3 hours per day and playing music a lot of the rest of the time.

Because I knew my health issues were a source of stress, I avoided thinking about them at all for months. I would studiously intervene whenever I started thinking about my health or reading about medical conditions, and turn my mind somewhere else. Of course I was still really diligent about observing all my physical and mental limitations, taking my meds, seeing the doctors, and so forth. I just avoided dealing with all of my health issues for more than a little while every now and then. When I had gross symptoms caused by cold exposure of something I couldn't avoid, I would use meditation, music, or television to just rest in the sick state without wishing it to be otherwise, without thinking about it, and without trying to figure it out.

I began to realize that if I started to get involved in medical considerations and thinking about my condition, even just a little bit, my mast cells instantly became less stable. It wasn't a question of anxiety causing symptoms, but something more subtle. Even having a couple of annual tests (all of which showed major improvement) would be enough to set off a couple of weeks of mild increased mast cell activity.

I had my wife (a molecular biologist) search for a mechanism which could explain this. She came up with some studies on the “nocebo effect”, in which patients believing themselves to be sick (or experiencing or fearing sickness) can make themselves ill. This is the opposite of the placebo effect, and they have recently found a likely mechanism in a hormone called cholecystokinin. If the secretion of this hormone is blocked, patients won't experience the nocebo effect:

Worried Sick : Expectations can make you ill. Fear can make you fragile. Understanding the nocebo effect may help prevent this painful phenomenon.

My wife did some searches, and found that there is evidence that cholecystokinin might directly trigger mast cell secretions, at least in some animal models:

Effects of cholecystokinin-4 on secretory activity of rat mast cells.

I thought this was a reach as science, but of course we all need to listen first of all to our conditions in trying to figure out how to manage our masto. I can't think of any disease which is more complex, mysterious, and inscrutable, and which requires more awareness and thought about how to manage it.

But for myself, I have become convinced that, for the most part, I do more harm than good by thinking about it more than is absolutely necessary! And I am convinced that there is a benefit to willfully ignoring the symptoms when I have them.

– Dave

Header picture attribution : By (originally posted to Flickr as The end isn't near) [CC-BY-2.0 (], via Wikimedia Commons

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Posted by on Jul 10, 2013 in Blog |

Yet Another Bone Marrow Biopsy


Peripheral blood and bone marrow, biopsy, clot and aspirate:

  1. Normocellular marrow with trilineage hematopoiesis and adequate storage iron.
  2. Few multifocal atypical mast cell infiltrates (5%). See comment


This is a normocellular marrow with trilineage hematopoiesis and adequate storage iron. There are no significant dysplastic changes, increase in blasts or atypical plasma cells infiltrates. Flow cytometry (FC-13-G3 57) shows no increase in blasts or atypical lymphoid populations. There are few multifocal atypical mast cell infiltrates, some associated with lymphoid aggregates.

Given the patient's clinical history and significantly elevated serum tryptase level (46.5 mg/L), marrow morphologic and immunohistochemical findings support the diagnosis of systemic mastocytosis.

Marrow involvement appears to be minimal with less than 5% of atypical mast cell seen, based on the biopsy sections with immunohistochemistry

There is no evidence of an associated clonal hematological non-mast cell lineage disease, based on the morphologic features in the current sample.

CBC red cell indices together with the findings on peripheral smear are consistent with thalassemia.


Bone marrow:

Examined are biopsy, aspirate smears, clot sections, and touch preparations.

The biopsy and clot sections show normocellular marrow with an estimated cellularity of 40-50%.

There is trilineage hematopoiesis with unremarkable maturation and distribution of the precursors.

Adequate megakaryocytes with unremarkable morphology are present. Vessels and bony trabeculae are unremarkable. No granulomas are seen.

There are few scattered loose lymphoid aggregates composed of small mature lymphocytes and admixed clusters of mast cells. Some of the mast cells have atypical (spindled) morphology and show degranulation of the cytoplasm.  Giemsa stain with functional control highlights some of the non-degranulated mast cells.

Reticulin stain shows no significant overall increase in reticulin fibrosis.

Immunohistochemical staining for CD3, CD20 and CD117, with functional controls, shows that the lymphocytes within the aggregates are composed of CD3+ T-cells and CD20+ B-cells. Increased numbers of CD117+ mast cells, both spindled and non-spindled, are present within aggregates, around vessels, and focally in linear arrays (overall <5% of marrow elements)

Aspirate smears and touch preparations show trilineage hematopoiesis with M:E ratio of approximately 2: 1.

Myelopoiesis is synchronous and complete to PMNs. There is no dysplasia or megaloblastic change of myeloid cells.  Blasts are not increased.  There is mild eosinophilia, but no significant basophilia or monocytosis.

Scattered mast cells are seen, some of which have irregular cytoplasmic granulation and spindled nuclei. Erythropoiesis is normoblastic without dysplasia.

Megakaryocytes have unremarkable morphology. Lymphocytes and plasma cells are not increased or atypical. Adequate storage iron is present on iron-stained smears with functional control. Ringed sideroblasts are not seen.

Peripheral blood:

RBCs are microcytic with occasional target cells seen There is a slight polychrollasl3. The platelet estimate is nornal with occasional large or giant platelets present There is no neutropenia, neutrophilia, left shift or Pl.1N dysplasia. No eosinophilia, basophilia, or monocytosis is present Lymphocytes are not increased or atypical. No blasts arc seen.


Bone marrow aspirate:

No increase in blasts or abnormal lymphoid population is detected. See comment.


The immunophenotypic findings do not support involvement of the marrow by acute leukemia or B or T-cell lymphoproliferative process. Correlation with the morphologic features is recommended (BM-13-263)
Corresponding surgical specimen #: BM-13-263


Received is a sample of bone marrow aspirate in heparin Viability is 95%. The smears show trilineage hematopoiesis with slightly increased numbers of spindled mast cells. Biopsy and clot sections show scattered lymphoid aggregates. The specimen is prepared using a direct lysis procedure. Immunophenotyping is performed using limited panel of monoclonal antibodies and multicolor gating.

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Posted by on Jun 26, 2013 in Blog |

Does your GP/PCP Just Not Get It? The Thousand Faces Of Mastocytosis

Does your GP/PCP Just Not Get It? The Thousand Faces Of Mastocytosis

Do you want to share your thoughts about The Thousand Faces? Or let us know whether your doctor is more receptive after reading the article? Please head for the forum and let us know what's up.

Having That Feeling, Again?

Don't you feel embarrassed when YOU do know what's wrong with you, and when you go and see your GP/PCP to share your symptoms with him/her, your doctor looks at you and goes, like,

Yeah right …

Well, it seems this situation is a common challenge for mast cell disease sufferers. More so for females than for males, apparently.

Compassionate Mast Cell conditions experts from the University Of Toronto, who have come to deal with patient's misery day after day after day, consider this to be a real problem for patients. So much so that they have written an excellent paper to help redress the situation.

Enter the “Thousand Faces of Mastocytosis: Mistaken Medical Diagnoses, Patient Suffering & Gender Implications”, by Aysan Sev'er, University of Toronto, R. Gary Sibbald, University of Toronto & Women's College Hospital and Carrie D'Arville, Mastocytosis Society Canada. (Credit: University Of Toronto) (click on the name of the article to download it)

This is a must read, put-your-foot-down-and-force-your-doctor-to-read article. You should have it in your back pocket every time you visit your doctor. It is written BY doctors, FOR doctors.

When You Gotta, You Gotta

Believe me, download it and read it now. Although the paper contains several sorry accounts by patients, it will make you feel better as you'll realise that your doctor's attitude is not personally geared at you. Your doctor just applies the knowledge he/she acquired during his training.

I know, I know … you don't have the time to read a 29 page document …

Well, I've got news for you.

It’s YOUR Life

Unless you make the time to inform yourself about your own condition, no matter how much effort it takes, no-one else will.

Our GPs/PCPs have NOT had the benefit of studying mastocytosis. They don't even know it exists! They don't have the time to get to grips with it either.

Remember, mastocytosis is considered a RARE disease. Depending on which research you read, the mastocytosis prevalence ranges from 0.3 per 10,000 to 1 per 500,000! So, what's a busy GP to do, spend the time learning about one obscure condition which affects maybe 1 or 2 patients in their practice?

I think not. Do you?

So, sit down, download the thing and read. It's an easy read as well.

Will It Work?

Want to be sure this will help you convince your doctor? Here's the abstract of the paper:

The goals of this paper are to help a larger circle of medical professionals by creating greater awareness of Mastocytosis. Our focus is on the complexity and seriousness of the symptoms, and medical tests which are helpful in diagnosis. We include first hand experiences from 12 Mastocytosis patients who are long-term sufferers of this elusive but cruel malady. Finally, we will make recommendations to the medical community, as well as the Mastocytosis sufferers, about how to recognize and live with this disease. It is our sincere hope that our participants’ struggles and their experiences with Mastocytosis, as well as with their medical professionals, will improve the diagnostic process for Mastocytosis. It is also our sincere hope that the possible gender biases in dealing with female patients will be reduced or eradicated in the face of a plethora of Mastocytosis symptoms. It is not blame we seek, and we certainly do not wish to point fingers. Our aim is the creation of more accessible knowledge, faster diagnosis, mutual respect between patients and caregivers, and better ways of dealing with this frightening disorder.

Oh, and by-the-way, out of the 29 pages in the article, there are 10 pages of patient's testimonials and 2 and a half pages of references. And you've already read the one page abstract. So, only … hmmm … let's see … er … 15 1/2? Yeah, only 15 pages and a half to read, if you're strapped for time.

So, reading the stuff is not the end of the world. Get on with it. Print it, highlight the passages that you want your doctor to read, book a double appointment and ask him to read it.

Come on … You know you want to …

And please let us know how you got on with your doctor in the forum.  Any success?

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Posted by on May 10, 2013 in Blog |

Effects of Histamine Release

Effects of Histamine Release

Histamine is the chemical in the body that causes allergic reactions. According to, when someone encounters an allergen, the body releases IgE antibodies to fight off the substance. This release causes a chain reaction in the body that causes the mast cells to over-produce histamine. Increased histamine causes irritation and inflammation in various parts of the body. The most common places histamine causes a reaction is in the skin, the nasal passages and the bronchial tubes. Talk with a doctor about any allergy-related symptoms for the most effective treatment options.

Upper-Respiratory Symptoms

The most common condition in the upper-respiratory system affected by histamine release is called allergic rhinitis. This allergy condition primarily focuses on the sinuses and the eye's reaction to increased histamine, according to the University of Maryland's Medical Center. Common symptoms include nasal congestion, a runny nose, sneezing and sinus pressure pain. Post nasal drip is associated with allergic rhinitis, especially when the nostrils are obstructed. Other symptoms in the upper-respiratory tract are irritation in the eyes and throat irritation. The eyes become red, swollen, watery and very itchy. The throat feels scratchy and can become sore from post nasal drip.

Skin Symptoms

The release of histamine can cause skin rashes throughout the body, according to the American Academy of Dermatology. This type of reaction causes symptoms such as redness, inflammation and severe itching on the skin. The skin can develop welts or small blisters that can burst, making the skin more susceptible to infections, such as impetigo. The most common skin reactions caused by increased histamine levels are eczema, hives and contact dermatitis. Avoid scratching the skin, wear loose fitting clothing, and stay away from hot and humid conditions. Talk with a doctor if skin symptoms do not improve within a 24-hour period.

Asthmatic Symptoms

Asthmatic symptoms due to the release of histamine are referred to as allergy-induced asthma, according to the Asthma and Allergy Foundation of America. Allergy-induced accounts for 50 percent of asthma condition in the United States. When the body releases histamine, it causes the bronchial tubes to become inflamed and swollen. This leads to restricted breathing and wheezing. The person may feel tightness in the chest and will not be able to take a deep breathe. She may feel faint or develop anxiety because of the lack of air. Asthma can lead to a life-threatening situation and needs to be evaluated by a physician.

Excess histamine release causes inflammation and allergy. They are chemicals released by specialized cells, called mast cells, as a defense mechanism. Mast cells also play a role in immunity. Histamines have an inflammatory effect on the body.

Itching and Pain

Excess histamine release causes itching and can also cause pain. Two types of histamine receptors that are known to cause specific effects are present in the body are H1 and H2. Itching is caused by activation and release of H1 receptors when the body is exposed to foreign substances that induce an allergic reaction. Because histamine (H1) receptors are abundant in the skin, exposure to an allergen causes their release, producing itching and pain from stimulation of sensory nerve endings. An example is itching, swelling and pain that occurs in response to an insect bite.


Swelling is an effect of excess histamine release and happens when blood and fluid escape from the capillaries and leak into extracellular spaces. Blood vessels dilate and collapse, causing blood to become trapped and contributing to swelling, also known as edema. Anaphylactic shock is a severe type of allergic reaction that results from excessive release of histamine. Swelling in the throat, around the eyes, and lips, and wheezing and difficulty breathing are hallmark symptoms of anaphylaxis. The effect of histamine release on the lungs can lead to pulmonary edema, fluid that collects in the respiratory air sacs, from leakage of fluid through the veins in the lungs (pulmonary veins). The same mechanism is what causes runny nose, itchy eyes and sneezing in response to a cold virus or allergen.

Increased Gastric Secretions

Specialized cells in the stomach, called parietal cells, secrete hydrochloric acid. Too much hydrochloric acid leads to ulcers and inflammation. Mast cells are also present in the lining of the stomach that release histamine and contain H2 receptors. Histamine has an effect on parietal cells, combined with other enzymes, that leads to increased gastric secretions.

Sleep and Wakefulness

Histamine affects brain chemicals that regulate sleep and wakefulness. They act as neurotransmitters in the brain. Neurons in the brain that transmit signals contain histamine that increase when we are awake. The effect of histamine on wakefulness explains why antihistamine medications make us sleepy.

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