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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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Posted by on Jun 29, 2013 in Medical Journals |

Histamine and ascorbic acid in human blood.

Head for The Masto Townhall forum to debate this paper.This article may be copyrighted. Notice to copyright holders. You can view the full article at the publisher here. This article can be downloaded for free
J Nutr. 1980 Apr;110(4):662-8.

Histamine and ascorbic acid in human blood.

Clemetson CA.

Abstract

Analysis of 437 human blood samples has shown that when the plasma-reduced ascorbic acid level 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.

PMID: 7365537 [PubMed – indexed for MEDLINE]

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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 Jun 24, 2013 in Uncategorized |

Video Tour

Welcome To The Me & My Mast Cells Site

Please watch this video tour, specially prepared to help you get the most out of our website.

Enjoy!

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Welcome

Hello and welcome to this short video tutorial on how to use the meandmymastcells.com website.

Introduction

meandmymastcells.com is a repository of information about mastocytosis.

This site is mainly intended for newly diagnosed patients, as information about mastocytosis is still scarce on the web.

However, for already diagnosed patients, the site aims to help you understand the medical concepts necessary to make sense of the medical research articles.

Poring over medical articles has become a necessity for patients of mastocytosis as, for this disease, the patient is very much in the driver’s seat, with the General Practitioner or Primary Care Physician becoming a trusted co-pilot.

We will keep updating the site with new medical research, news, explanations of medical concepts and the like.

Emergency Area

First things first, there is the emergency area, where you will find documentation you may require during emergency visits to the hospital.

There are two documents to guide you and your anesthetist on safe anesthesia practices for patients with mastocytosis, and two documents with guidance to ER personnel.

The emergency menu is conveniently located in the top middle menu position and highlighted in red.

Legal & Disclaimer

The next important item is the disclaimer, please do read it. It essentially says that, everything you read, see or hear on this site needs to be taken with a pinch of incredulity, and that I am not a doctor, and that you should talk to your doctor and yada, yada, yada.

You know the drill.

And also for legal purposes, let me point you to our contact form, privacy policy and notice to copyright holders, saying that if they believe that I have stretched the scope of fair use and posted something they dislike, that I’m very willing to take it down at their request.

Disclosures

Please note that this site has no commercial intent whatsoever, so there are no financial disclosures. We are not affiliated to anyone. As this is just a patient’s carer information repository, there are no conflicts of interest disclosures either.

Forum

Before I forget, let me point out that this site has an adjunct forum, where the topics are neatly organized so that your contributions are easily retrievable.

I encourage you to sign up and contribute to the forum, as forums are the best way to communicate between patients and carers alike.

Navigation Features

This site contains a lot of information. We have tried to make the navigation as easy as possible.

In order to expose as much content as possible on one page, we have divided navigation into three menu levels, top, middle and bottom. Some menu items will have sub menus.

Additionally, there is a category menu on posts other than the front page and each category leads you to separate areas of interest.

It is easy to believe that the front page is all there is, but this site has incredible depth to it, so we encourage you to browse around and enjoy the detail.

If at any time you wish to return to the Home Page, click on the prominent blue me & my mast cells title or on the grey home icon in the bread crumbs on every post.

The Glossary

One of the significant benefits of this site is the automated glossary feature. In any post, hover over the words underlined with dotted lines and a Netflix-like popup will appear giving you additional information about that word.

Most difficult medical terms are thereby hopefully de-mystified without disrupting your reading flow. We have tried to make the explanations as simple as possible.

At the time of launch, the automated glossary contains over 320 terms. We anticipate that it will grow to well over 800.

Media-Richness

A picture is worth a thousand words.

A video is worth a million words.

A good descriptive video animation is priceless.

So we have made this site as media-rich as possible. There are over 40 videos and animations, along with numerous pictures. This number will grow considerably in the near future.

Tone-Of-Voice

We have used a peculiar tone of voice which may offend some readers. Fear not, it’s not like Mickey Mouse peculiar. We have attempted to lighten the mood by being occasionally humorous, sarcastic or controversial.

This may not sit well with some of you. If you take umbrage, I hope you will see the wood for the trees and focus on the message rather than the delivery.

At no time do we mean to be glib or disrespectful. Believe me, we understand what you are going through and have the deepest respect for your ability to cope with this debilitating disease.

Top Menu : About This Site

If you are interested to know how this site came about, please read my partner’s Ann story. It is quite a typical (and eventful) scenario for mastocytosis sufferers.

As for my story, suffice it to say that never, ever, in my wildest dreams did I contemplate that I would be creating an information site on a rare disease, especially as I have not the slightest medical or scientific background or training.

Top Menu : FAQS

Please follow The FAQ link to get point answers to simple everyday questions you may have about this disease.

Top Menu : Resources

You will find a sub menu, offering a list of useful information sites, product sites and support sites.

Also, you will find alphabetical index of over 200 medical articles on, or related to, mastocytosis.

The abstracts of these articles are also available on the site, with the added-value benefit that the automated glossary makes the reading of these abstracts much easier for common mortals. For each abstract, there is a link to the full text, with a flag telling you whether the full text is available for a fee, or is available for free.

As medical articles are littered with abbreviations, we have collected the more common abbreviations and their explanation. This should be helpful if you read medical articles which are not on this site.

And lastly, a link to the site’s automated glossary is available

Center Menu : General

The center menu mirrors to some extent the home page.

The menu points to:

  • The Basics
    • Basic concepts needed to understand the condition
  • The Symptoms
    • Essentially, expect the unexpected
  • The Tests
    • What procedures are needed leading to …
  • The Diagnosis
  • The Treatments
    • Explains what the treatments are and how they work
  • The Drugs
    • Their use, and side effects
  • The Doctors
    • Doctors presumed to know how to treat the condition. We have not personally vetted these physicians and do not vouch for their capability. You should perform your own due diligence. A link is provided to the physicians profile, as well as the source of the referral, if one is available, and a link to the doctor’s publications, if they exist.
    • Clicking on each one of the menu items will bring up all the articles in that category, so expect a longer response time as the system collects all the articles.

Center Menu : Other

The Deep Dive menu will lead you to the following sections

  • Explain To Me (detailed posts on medical topics)
  • Genetics (an introduction to genetics)
  • Statistics 101 (an introduction to statistics)
  • Nutrition
  • Q&A (more detailed than FAQS, less detailed than Explain To Me)
  • News (medical research news)

Main Section Of Home Page

The main section of the home page shows, under each category, the individual articles which are available.

Clicking on one of the articles takes you to that specific topic. This is a much faster way to get to a topic of interest, rather than clicking on the category menu, as the latter will display all the articles in the category.

Below the main home page section, you will find a selection of featured videos. Followed by a selection of the most recent news articles.

Live Video Streaming

The site contains the necessary infrastructure to organize real-time video webinars using Google Hangouts. You do not need a Google account to participate.

If you believe you have a structured presentation or expertise in a particular area you’d like to present to members, please let us know and we can certainly facilitate this.

Please note that such presentations cannot be used to sell products or services. However, it is acceptable to introduce such products or services if they are ob clear benefit to members.

Guest Blog Contributions

We will gratefully accept guest contributions on any topic you may claim expertise on. As already mentioned, the mastocytosis topic is relatively new to us and we are still learning. We could do with much help to improve the content of the site. You would thereby be contributing to the education of those who do not yet have your level of expertise.

Conclusion

This concludes the brief tour of this site.

If you think this site could be of benefit to others, please share the site's information  on social media, using the appropriate buttons on each of the individual posts. Also, please join us on Facebook, Twitter or Google plus by clicking your preferred network in the top social media buttons.

Finally, please let me remind you of the forum. Unless you contribute to the patient community, through this  or any other forum, many of us will be left to our own devices.

Remember how it felt when you were in that situation. Please help.

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