PV Reporter is very pleased to welcome Kate Newberry, Phd as contributing writer. She is a Senior Research Scientist in the Leukemia Dept at MD Anderson collaborating with Dr Verstovsek.
Kate has been working with me on the "Mast Cell Mania" series providing medical commentary, this is part 2 of the series.
Thanks David, , fascinating stuff, I love it as I'm into facts and like to know how things work , / interact. . It's encouraging to know these levels of research are being done around MPNs as it all helps to unlock the bigger picture of how we are affected. . , I for one am very grateful to all those involved in the different areas of research and I'm sure I speak for the many.
Thanks for the good word Chris, glad you enjoyed the article. I think Kate Newberry did an outstanding job of explaining a difficult subject and making it easy to digest.
I shall be taking particular interest in your post/ info because I was diagnosed with histamine intolerance in June, by Prof Seneviratne at St Mary's Paddington.
Despite a BMB not showing mast cell activation, my blood and urine tests showed that my mast cell activation level is 54 ( one point above the diagnosis level of 53) and my diamine oxidase levels are 5.9 ( should be 10 to 15) Unfortunately I can't tolerate Daosin.
I find HIT far more challenging actually than PV. Ghastly symptoms and far wider ranging. I'm loathe to load myself up with strong antihistamines, because I already take aspirin, levothyroxine and hydroxicarbamide, so I get by using the histaminintoleranz food compatability list from Switzerland - a life saver to say the least, but incredibly useful and the whole website is really informative. Sadly histamine intolerance isn't widely recognised in the uk, despite the fact that in the US, Canada, Switzerland, Germany and France, it is. Just goes to show how very far behind modern medicine is in this country I guess.
Is there a connection do you know between histamine and aquagenic pruritis?
Hi Louise - I am sorry to hear about your diagnosis with HIT. I did a good bit of research on the subject prior to writing my paper on the "Z and Z combo." There is a good deal of overlap between HIT, mast cell activation and other variations of mast cell disorders (including mastocytosis).
Because histamine levels are increased in MPNs, there seems to be a connection to aquagenic pruritus (a cause and effect relationship if you will). Thanks for pointing out the histaminintoleranz food compatibility list from Switzerland. There certainly looks to be a strong dietary connection as well. When the Part 3 article is written (no timeframe yet), it will likely include the "diet elimination" techniques and trigger foods. I am fascinated by this area, as it is rarely discussed in the U.S. as well and many symptoms look to be so closely related to our issues. Thank you for sharing your situation and solution.
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