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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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MCAS Primer for Physicians

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Oct 17, 2012.

  1. nanonug

    nanonug Senior Member

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    Virginia, USA
    EMilo and Little Bluestem like this.
  2. searcher

    searcher

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    That is a fantastic document. I had several of the first-line tests done last week, and this document helped me realized my urine specimen wasn't handled correctly (left in a bin instead of immediately chilled.)

    I also really like Dr Afrin's presentation to the Mastocytosis Society of Canada. His case studies and explanations will likely resonate with a lot of people diagnosed with ME/CFS. I found myself nodding repeatedly while reading about the odd range of symptoms he had encountered in patients.

    It seems like he has had success with Gleevec in some patients, and the response can be very rapid. Does anyone know if any folks with CFS have tried Gleevec before?
    camas likes this.
  3. alex3619

    alex3619 Senior Member

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    I want to add some precautions to take prior to the prostaglandin tests that were not mentioned. In addition to NSAIDs, avoid alcohol (not hard for us), fish oil, borage or evening primrose oil, and any sizeable quantity of nutritional omega-3 or omega-6 fats, such as edible linseed, safflower etc.

    Glutathione based therapies might also throw the test off. So will high dose antioxidants of any kind.

    All of these may impact the testing.

    Bye, Alex
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  4. camas

    camas Senior Member

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    Here's how some masto patients recommend doing a 24 hour urine collection for the histamine and prostagladin tests.

    Put the large specimen container on ice in a cooler in your bathroom. The tub is a good spot. Cool the container before adding your first sample. Have a separate container for collecting the urine that you also keep on the ice. Let each urine sample cool in the smaller container before adding to the large specimen container.

    Transport the large specimen container to the lab on ice, and hope that they handle it as carefully as you did.
    nanonug likes this.
  5. searcher

    searcher

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    If you have an open-minded doctor I highly recommend having him or her write Dr Afrin. He will send your doctor the primer, will answer questions on diagnosis, and will provide treatment options based on your symptoms and test results. I don't know how he finds the time but it's really impressive.
    camas and nanonug like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    thanks for the link for this primer.. Im going to check it out when my brain is working better sometime :)
  7. FunkOdyssey

    FunkOdyssey Senior Member

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    Judging from his (admittedly small) collection of case reports it does seem like tyrosine kinase inhibitors were the most successful treatment option. A single drug that prevents mast cell degranulation seems like an attractive alternative to complicated multi-drug regimens that block downstream mediators and are only partially effective.

    Not terribly expensive if anyone is feeling adventurous: https://www.alldaychemist.com/supplier.php?id_supplier=615
  8. searcher

    searcher

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    FunkOdyssey - I always forget how easy it is to get generics from India. I am with you on the advantage of preventing the degranulation in the first place, especially since there are so many mediators so it's pretty much impossible to block all of them.
    I am thinking seriously about trialing imatinib once I determine what monitoring I would require. With those prices, I could spend $50 and have a non-negligible chance of waking up with no symptoms after a few weeks based on the case studies. There are advantages over spending thousands and waiting months with rituximab, and popping a pill is much simpler logistically than getting a rituximab injection.
    Little Bluestem and camas like this.
  9. EMilo

    EMilo Elizabethmilo.com

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    This link doesn't seem to work. Does anyone have an updated one? Thank you!
  10. camas

    camas Senior Member

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    Hi EMilo,

    I've attached the more recent version.

    Attached Files:

    EMilo likes this.
  11. EMilo

    EMilo Elizabethmilo.com

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    Seattle, WA
    Thank you so much, @camas !!
    camas likes this.

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