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Appointment regarding MCAD with Dr. Afrin 1/26/17

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Lynn, Jan 26, 2017.

  1. Lynn

    Lynn Senior Member

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    I will be seeing Dr. Afrin tomorrow for my first time to evaluate me for MCAD. I have been waiting for this appointment for 9 months after reading his book last year. It's hard to imagine how much I want the tests to show positive (which seems really weird). But after decades of ME/CFS I would like to have a diagnosis for which there are treatments!

    I'll post again after the appointment. If anyone has advice for me please feel free to share or PM me. I don't know why I didn't think to ask for advice before.

    Lynn
     
    Neunistiva, keenly, Allyb510 and 6 others like this.
  2. Zombie_Lurker

    Zombie_Lurker

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    Let us know how it goes! I just started reading his book this week.
     
  3. Lynn

    Lynn Senior Member

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    The appointment went well. He wanted a detailed account of symptoms from early childhood. I think his theory is that MCAS symptoms start early even if they are not noticed at the time. Other than that it was a typical doctor's visit.

    I asked him if he had examined an ME/CFS patient that did not end up being diagnosed with MCAS. He replied that he had not. The diagnosis is not clinical. They are running a bunch of tests on my blood and I have to do a 24 hour urine test starting tomorrow. The tests must show signs of mast cell activation.

    I probably won't see the results for about a month but I will post when I get them.

    Lynn
     
  4. eljefe19

    eljefe19

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    Do my other MCAS people get absolutely horrible stomach cramps? I just got diagnosed with this at OMI 10 years after it being diagnosed IBS.
     
  5. ryan31337

    ryan31337 Senior Member

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    Yes, very common symptom amongst sufferers. Afrin talks quite a lot in his book about stomach biopsy being diagnostic for MCAS, but its all very contentious and the dermatologist I see suggests you'd see elevated numbers of mast and other cells simply due to inflammation from other causes.

    Have they suggested any treatment for you @eljefe19? Antihistamine H1/H2, anti-leukotriene, ketotifen & sodium cromoglicate are useful starters for most.
     
  6. eljefe19

    eljefe19

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    Haven't gotten my MCAS biomarkers back yet, but my intense stomach aches went away 95% with a regimen of Ketotifen, Ebastine (H1), Ranitidine (H2), and Mesalazine. I am considering adding a beta adrenergic agonist like Fomotorol as this stabilizes mast cells and quickly.
     
    keenly likes this.
  7. ryan31337

    ryan31337 Senior Member

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    That's good news, congrats. When you say 95%, do you mean severity or frequency? If its frequency I'm curious if you know what triggers the 5%?

    I've managed to get my postprandial bloating/cramps/diarrhoea down to a minimum through restrictive diet & the antihistamine/antileukotriene combo. Unfortunately as soon as I go beyond my baseline and overexert they flare right up again for a few days, despite keeping to the same 'safe' foods :thumbdown:
     
  8. Fogbuster

    Fogbuster Senior Member

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    Hi Lynn,

    How did your trip to Dr Afrin go?

    You're about 9 months ahead of me in my journey i'd say. Your post resonated with me, as i'm sure i'll be going through the exact same emotions when I see him in the not to distant future. I've just started getting back into MCAS research after failing a diagnosis 2 years ago. I had my tryptase & histamine levels checked, along with maybe one other test, the tests came back as normal...

    I knew at the time getting a diagnosis for it could be quite hard, but I had no idea how complicated the route to diagnosis was going to be for some of us! I've just recently read a few parts of his book and came across his section about idiopathic nosebleeds.

    I had my nose quarterized three times from the age of 11-15, I feel that's quite unusual. I also used to have quite a lot earaches, problems going even 1m deep under water without ear pain. The latter seemed to reduce quite a bit as I got into teenage hood.

    Although one of my annoying symptoms now is constant fullness in ears 24/7, even when I pop them the pressure remains. Just thought I'd mention this, just in case you've experienced anything similar or you got a nugget of info from Dr Afrin... :)

    Hopefully hear from you soon.

    regards,
    Jamie
     
  9. Lynn

    Lynn Senior Member

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    Hi Jamie,

    All of the tests came back normal. I chose not to get retested. Dr. Afrin is leaving the Univ. of Minnesota so it looks like I will not get a diagnosis of MCAS.

    The good news is that I have been doing the antihistamine 1 & 2 protocol since January. I take 1 generic Zyrtec and 1 generic Zantac (from Costco) each morning and then again at night. My sleep patterns have totally changed since starting the protocol. I used to get up at about 11 am each morning. Now I wake up around 7-8 am. It's amazing to have so much more of the day. Other than sleep, I have not noticed any other changes in symptoms.

    I am sorry to have not got the diagnosis. I think I would have benefited from some prescription MCAS drugs given the improvement in sleep. Dr. Afrin was not willing to prescribe anything since the tests were negative. I didn't realize how slim of a chance there was to get a positive result when I started the process.

    My right ear pops every time I swallow. It's been that way ever since I can remember. I developed allergies at about 15 years old and have been taking antihistamines since. I also have a problem with flushing. I think many of us with ME/CFS have those issues as well.

    One thing Dr. Afrin did tell me is that if I was able to trial prescription drugs, I would definitively know when one of them worked. I have tried dozens of things for ME/CFS and didn't notice any great results except the antihistamine 1&2 protocol.

    I'm hoping Dr. Davis or the Rituximab study comes through and we have more hope for the future.

    Lynn
     
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  10. Fogbuster

    Fogbuster Senior Member

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    Hi Lynn,

    Thanks for your response. I'm sorry you didn't get your diagnosis! As I'm sure you're well aware, that shouldn't stop you from giving the medications a try if you feel they may help you.

    I've tried to google search it, but can't seem to find it. Could you possibly link me to the antihistamine 1 & 2 protocol? Also if you don't mind me asking, what was the cost and waiting time to see Dr Afrin? Rituximab is a drug I've had an interest in, but I think its something to consider way down the line for me at least.

    When you say "I didn't realize how slim of a chance there was to get a positive result when I started the process." Do you mean that most suspected MCAS patients don't show signs of MCAS when tested by him?

    I'm sorry to ask you so many questions!

    BW,
    Jamie
     
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  11. redo

    redo Senior Member

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    I've had the same experience using famotidine, which is somewhat similar to Zantac. I took it at 6 pm, and didn't feel sedated or anything, but after taking it my sleep pattern totally changed. I used to get to sleep at 4-5 am, but now I get to sleep a little over midnight. And I used to get up at noon or later, now I get up at 8-10 am.

    It seems counterintuitive that a drug against heartburn would have such an effect, just by chance, having nothing to do with either histamines or mast cells.

    My sleep improved, but it also seemed to have somewhat of an effect on my cognitive symptoms.
     
  12. rockymountainmama

    rockymountainmama

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    Dear @Lynn, @redo, @Fogbuster,
    After 21 years of missteps, I have recently met with a "Dr. House" type doctor who thinks I may have MCAS. I've read that Dr. Afrin's colleague, with who he now shares an office, Dr. Tania Dempsey states on her website that the TESTS ARE OFTEN NEGATIVE. She sends patients THREE TIMES before giving up. Read item #3 on why tests are often negative: https://www.drtaniadempsey.com/single-post/Ask-The-Expert-Mast-Cell-Activation-Syndrome

    Because of this, I read on a German website that they sometimes use the patient inventory plus a drug trial to see if there is success. Also researchers have stated that they believe 17% of the German population has this condition. I believe Afrin has stated 10-15% of the USA population may have this, it is probably as common as allergies, though different. Mast cell activation is without the IgE antibody that comes with allergies. Important to note: EVERYONE GETS THIS DIFFERENTLY, HETEROGENEITY OF SYMPTOMS IS IT'S HALLMARK. Sound familiar?

    Since I only saw mention of H1 and H2 antagonists in the thread, I would like to mention the mast cell mediators (such as a supplement called Quercetin - try Solaray QBC 2 pills 2x/day, and Cromolyn Sodium - at OTC nasal spray NasalCrom or Rx drug Gastrocrom, both very easy to tolerate). Here is an excellent diet guide:
    https://wendybusse.com/practical-guide-low-histamine-diet/

    Since knowing about the diet I've realized that foods I eat all the time are extremely high in histamine: soy sauce, balsamic vinegar and grated aged romano cheese.This list shows the mg/kg of some trigger foods:
    https://healinghistamine.com/histamine-in-foods-list/

    My "Dr. House" says it will take 6 months to see if the diet/supplements/mast cell mediators and H1/H2s are going to make a difference. One must do some experimenting.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    For people like me who did not tolerate Cromolyn/Gastrochrom, an excellent alternative is Ketotefin (which is also a mast cell stabilizer). I apologize if you mentioned this and I missed it! It comes in compounded pills and eye drops (in the US).
     
    rockymountainmama likes this.

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