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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 Jul 6, 2013 in Juicing, Nutrition |

Juicers Buyer’s Guide

Juicers Buyer’s Guide

Lies, Lies and More Lies …

OK, I'll admit it, this is not yet a buyer's guide …

I'm busy doing so many things that I hardly have time to update this site as it deserves. Fear not, it's only temporary! I'll be back, soon and I promise I'll turn this post into a proper buyer's guide. I feel I am en expert in juicers, as I've tried 7 before finding the perfect one.

But while I'm busy elsewhere, I wanted in the meantime to point you to the juicer I have been using for the past year or so.

Introducing he HUROM 100!

Watch this and admit you're impressed.



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Posted by on Jul 2, 2013 in Uncategorized |

Forum Question

Back in October I was referred for a bone marrow biopsy to a hematologist.

He was the first to admit that he had never had a patient with Mastocytosis, but was willing to do the procedure and learn along with me.  The results came back and he said they were negative. 

The thing that confuses me is this specific wording in my flow cytometry report,

Although there is no immunophenotypic evidence of mast cell neoplasm, note that less than 10 strongly CD117+/CD33+ mast cells were identified by flow cytometry.  Therefore our pending morphologic evaluation of the bone marrow biopsy, including CD117 immunohistochemistry, will be important to further exclude involvement by mastocytosis. 

There is no explansion of the meyloid blasts, but if clinically indicated, more detailed immunophenotypic evaluation of myeloid maturation could be performed. 

Finally, there is no immunophenotypic evidence of a lymphoid neoplasm.

So what are strongly CD117+/CD33+ mast cells? It also indicated,

.09% CD34+ blasts, .1% plasma cells and extremely rare, strongly CD117+ mast cells.  78% Tcells (CD5+) and 3.7% NK cells (CD5-, CD38+, CD56+).

I am just concerned that my doctor missed something.  Is anyone familiar with these results?

The bone marrow biopsy showed only

Mildly hypocellular marrow for age (~30-40%) with maturing trilineage hematopoiesis and no abnormal mast cells identified (see Comments.)”  With the comments saying, “The marrow appears mildly hypocellular for age; however trilineage hematopoiesis is noted with full maturation and no morphologic evidence of dysplasia.  No increase in mast cells is seen morphologically, by immunohistochemistry or by flow cytometry.  Correlation with overall clinical findings, including syrum tryptase levels is recommended.

It also says there are no spindle-cell collections.

Does this mean I can put the notion of Mastocytosis to bed and continue looking elsewhere for an answer?

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Posted by on Jun 29, 2013 in Vitamins |

Vitamin C

Vitamin C

Vitamin C

Analysis of 437 human blood samples has shown that when the plasma-reduced ascorbic acid level (VITAMIN C) falls below 1 mg/100 ml, the whole blood histamine level increases exponentially as the ascorbic acid level decreases. When the ascorbic acid level falls below 0.7 mg/100 ml, there is a highly significant increase in the blood histamine level. Oral administration of ascorbic acid (1 g daily for 3 days) to 11 selected volunteers resulted in a reduction of the blood histamine level in every instance.

Histamine and ascorbic acid in human blood

From Rochelle Cocco

One gram of Vitamin C should not be taken all at once. Taken in large amounts, Vitamin C has a very short half life. It gets taken out by the kidneys and excreted almost immediately.

In the article above, 0.5 gram of Vitamin  C was taken twice a day. Extended release would be better.

At very high levels Vitamin C becomes a mast cell degranulator (I had read that about a month ago and after doing some math figured out that the concentration that caused degranulation was higher than normal levels that could be reached with most supplements. I have to find the reference for this.).

When there's very low levels of Vitamin C, the kidneys recognize that and excretion goes down to nil. That's why it takes so long for scurvy to occur even though there's no intake of Vitamin C in the diet for months.

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