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Systemic Mast Cell Disease:

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Oct 23, 2012.

  1. nanonug

    nanonug Senior Member

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    This is a beautiful PowerPoint presentation put together by Dr. Larry Afrin about Mast Cell Activation Syndrome. It contains lots of useful information on this condition. In particular, look at page 4 just to wet your appetite!

    Systemic Mast Cell Disease: An Update
     
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  2. Shell

    Shell Senior Member

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    Thanks - I'll have a read.
    Just watched the BBC thing with all those spectacular graphics. Wish they really could see inside us that clearly. Perhaps they will one day (minus the overdramatic music and hyped up voice over). In the meantime it's all in our 'eads...
     
  3. searcher

    searcher

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    Thanks for the presentation nanonug. I had read and linked to the PDF version but hadn't come across the PPT version, which is obviously much cleaner to read.

    The presentation is long but I think worth a read for anyone who is trying to delve deeper into the mechanism causing their symptoms. The case studies really struck a chord with me and it's encouraging to me that he has been able to help most patients using different medications ranging from H1 blockers to Gleevec. He touches on pretty much every strange symptom I have experienced, including those people may not associate with mast cells. For example he discusses night sweats and weight changes (p 40), breathing problems (p 45), cognitive dysfunction and GI problems (almost every case study), and temperature regulation (p 71) in addition to the usual mast cells suspects like flushing/itching/environmental sensitivities/POTS.

    So, um, I rate this presentation two thumbs up :)
     
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  4. GracieJ

    GracieJ Senior Member

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    I am a latecomer to this thread. I do not understand why the doctors are not yet putting these things together. Well, actually, I do - they just don't know enough. I am very grateful for the people on these forums pointing me in good directions!

    @nanonug The link in post 1 no longer works. I am finding more up-to-date info, from 2014,
    http://www.allergysa.org/journals/August2014/ThePresentation.pdf.

    How does this compare? Sounds like the PPT was excellent. Does anyone have it still?
     
    Last edited: Mar 9, 2015
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  5. justy

    justy Senior Member

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    Yes I am coming to this late as well and the link no longer works - would be great to still be able to see this presentation. An immunologist recently told me my mast cells are activated, which is causing the itching and problems with allergies increasing etc, but refused to discuss MCAS - he said Maastocytosis was extremely rare and my 'chronic fatigue' was not caused by mast cells. I asked him about histamine problems and MCAS and he refused to discuss it with me, but has wortten a letter to my GP saying my mastc ells are activated, and what to do. Unfortuntaely I am also reacting to the Zantac they gave me which is a shame because I feel a little better on it in other ways.

    He felt the issue would resolve in time, and hopefully it will, but I am keeping MCAS in the back of my mind just in case.
     
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  6. eafw

    eafw Senior Member

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    Was this through the NHS, how did you manage to get them to test for it ?
     
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  7. GracieJ

    GracieJ Senior Member

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    @justy I am having a huge wake-up call regarding allergies, skin conditions, breathing issues, arthritis, etc. Each area is being pursued to lessen symptoms, but I had no idea it was all related. I immediately started quercetin. The changes have been dramatic in three days. Lots to learn, including long-term use and management, what else to add, etc.

    I had started a thread about managing and avoiding insect bites, as it was such a bad experience last year. It is all making sense as I read and learn about mast cells.

    Ironically, mast cell activation was one idea I began reading about early on (relatively speaking) but the symptoms list read like the FMS list, which reads like the Lyme list, which reads like... arghhh, where to start?? You just don't know what you don't know.

    It occurred to me the other day that when this is all sorted out, our bumbling and stumbling in the dark will look silly to others down the road. We are the trailblazers. Can we please have the well, duh, moment now already?
     
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  8. justy

    justy Senior Member

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    I saw a private immunologist (he wasn't very nice so I wouldn't recommend). This was to talk about the severe itching for the past 4-5 months after a few days of Doxy kicked it off. Now I am reacting to all drugs with itching and anti histamines are not controlling it well so the GP suggested an immunologist - at least a year to wait on NHS so he sent a private referral -£150.

    The immunologist wouldn't discuss my other symptoms or Mast cell diseases - he clearly had his own pre conceived opinions about M.E/ CFS (or chronic fatigue as he kept calling it.) And he was horrified by KDM;s suggestions - outright said I couldn't have a chronic bacterial infection without even asking me what my symptoms where or looking at my test results - didn't even ask me which ones!!

    BUT he did do a skin prick test while I was on 15mg a day of cetirizine (anti h) so technically it shouldn't of worked, but I reacted to EVERYTHING - even things I am not usually allergic to. The histamine weal was massive and the dust one took two days to subside! (Normally takes an hour) I even reacted to the negative control. So he decided I needed to come off the omeprazole (he thought that was causing the activation to continue), switch to ranitidine (zantac h2 blocker) for the gastric reflux and keep upping the anti histamines until the itching was under control.

    Unfortunately I think I am reacting to the Ranitidine - itching is actually worse on it. Am also now taking 20mg a day of cetirizine. I have been having a lot of unexplained breathing issues (asthma tests normal) so this could explain it all. He wouldn't diagnose MCAD's - said they were rare and dismissed me - said the itching would clear up once off the omeprazole and would take a few months. But we seem to have just replaced one bad drug with another!

    Dr Sereviatne is the UK doc to diagnose MCAD or MCAS as far as I can tell - he is based in London - private apt £300. I am going to go and see him if we cant get this under control any other way or it doesn't start to resolve. Reading the above article I tick every single box for MCAS at least. have also hear of a professor in Southampton who can diagnose MCAS - will search out the name again - he can be seen privately.
     
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  9. eafw

    eafw Senior Member

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    Thanks Justy, wouldn't be able to get to London but was wondering if this was something that GPs recognised as a condition worth testing for and treating if there was a simple blood test.
     
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  10. justy

    justy Senior Member

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    Its not simple to test for and I don't believe you would find a GP willing to. But you could try getting them to read the article by Prof linked to above and trying some of the tests. My local rheumatologist did a couple of them last week, as she suspected MCAS as being a problem for me. She also dx me with EDS type III and MCAD'S are more common in EDS than the general population. The issue is that if it is MCAS, rather than Mastocytosis then the tests can be completely negative.

    The best bet would be to do some research and trail some of the drugs yourself - all of which can be bought over the counter - although if you have drug sensitivity reactions like I do this can be hard to work out.

    Second gen anti histamine to block H1 (such as loratidine, cetirizine)
    H2 blocker such as Ranitidine (zantac) -
    Quercetin as a mast cell stabiliser - not sure what else you can try
    Low histamine diet - quite a tricky one and not sure if this is helping me or not.

    I am not saying you should take these things, or diagnosing you - just this is what I am going to try - with the help of my GP. If the reactions to Zantac continue and I have to stop it I am going to ask my GP for a different H2 blocker and if this doesn't work am going to ask for Mast cell stabiliser.
     
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  11. taniaaust1

    taniaaust1

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    Hi justy, I'm very good to hear you are going to go and see an expert in this as I've thought you had a mast cell disorder for a while, your symptoms have been very much like mine (or like mine were, my allergies have semi settled down though I had a bit of an incident tonight).

    I'm like over 80% sure I have a mast cell disorder undiagnosed. (My uncle has systemic mastocytosis and keeps telling me he's sure I have it too.. his daughter/my cousin is sick like I are too with suspected masto so she never got the ME/CFS label put onto her due to her fathers masto). If wasn't basically housebound I could be seeking out a mast cell specialist :( .

    best luck with getting the issue diagnosed. (I not long ago found I had one of the common in masto genes but not the KIT one which would of helped me get diagnosed with masto, though I still may end up finding a KIT mutation as I haven't been through all my gene mutations yet and my uncle does have KIT one).
     
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  12. CantThink

    CantThink Senior Member

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    Last edited: Mar 9, 2015
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  13. CantThink

    CantThink Senior Member

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    Last edited: Mar 9, 2015
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  14. adreno

    adreno Learned helplessness

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    Are there any references for this? To my knowledge, even higher doses are antihistaminergic.
     
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  15. justy

    justy Senior Member

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    I was tking 500mg of vit c every three hours as I thought that would help. I have since dropped it donw to only one measly 750mg once a day... as I heard what cant think said above. Is a shame as Vit C helps me with other issues...
     
  16. GracieJ

    GracieJ Senior Member

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    Vitamin C is a mast cell stabilizer, but at higher doses causes degranulation? That doesn't make sense.

    One of the aspects I would like to learn about is the connection and correlations between mast cell activation, connective tissue abnormalities, and glutathione deficiencies.

    Some on the forums have talked about using a combination of high Vitamin C and use of salt to indirectly affect and heal the methylation blocks. I had been reading and pursuing glutathione issues, but have dropped that quest as I apparently have pressing issues with mast cell activation.

    First thing I am learning is that mastocytosis is rare and different from mast cell activation. Next thing is that mast cell stabilizers are more important and probably address the bigger picture as opposed to focusing only on histamine.

    Did we wake this thread up, or what? :rolleyes:

    Mr. @Sherlock, would truly appreciate your comments on this thread, as it was your observations that tipped me off to the mast cell connection.

    I thought I was going mad this past winter, dealing with heightened, increased symptoms in several areas, including exhaustion, energy level, breathing and swallowing, more rashes, and a body-wide flare of arthritis from you-know-where. Quercetin has affected every area in a short time in positive ways.

    Can't soak it in fast enough! I am very ill from these things, in bed sleeping every chance I get. I am also still making it to work, a zombie slogging through Jell-o to do so. The past couple of shifts were sooooooo much easier that I know I am on to something huge.
     
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  17. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Consider this: cardiologists had long been prescribing prescription niacin for heart patients. But many patients wouldn't comply because of the flush. Aspirin and other measures don't work so well - but quercetin abolishes the flush very well. I doubt that many cardios recommend quercetin or would believe it if you told them or showed the papers by Theo.

    I believe a person should just treat themselves and not worry about a diagnosis (though showing dermographia to a doc should carry a lot of weight). There is a paper in this forum showing that quercetin works better than the prescription drug MC stabilizers anyway.
    Here is a list from Theo, 2004:
    upload_2015-3-9_17-54-30.png


    [edit http://mastcellmaster.com/documents/cam-theoharides.pdf ]
     
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  18. adreno

    adreno Learned helplessness

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    Yes, I think this is a misunderstanding. The only quote I could find was this :

    http://www.jhoonline.org/content/4/1/10

    All this means is that the author recommends no more than 750mg per day, not that it increases mast cell activation.
     
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  19. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Vitamin C is said to increase absorption, some brands include a small amount.

    There are quercetin containing foods, such as red or yellow onions, not so much in the white. Also citrus and tea. These kinds of lists vary.

    Here is one:

    http://umm.edu/health/medical/altmed/supplement/quercetin

    Some say to take quercetin supplements with quercetin containing foods, as that might increase absorption and/or provide co factors. If it's simple and easy (such as with tea), then that's what I do.

    But there is some evidence showing that taking a LOT of quercetin capsules might harm the liver - then there is also evidence saying that it does not.
     
    Last edited: Mar 9, 2015
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  20. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    Yes, thanks go to all of you for that. :)

    I might get some chondroitin sulfate to try, because I just read that on Theo's list. Meanwhile, I'm going to swill some glucosamine sulfate right now - though it hadn't worked before, and neither had the chondroitin sulfate pre-CFS.

    @justy Do you have lots of gut issues? I'm convinced that leaky gut makes mast cells more easy to go bang. E.g., having sugar can bother my joints. Sometimes.

    I'd been afraid in the past if building up a tolerance, but have lately been upping the doses all around.

    Congratulations on finding something that helps so much. Boswellia is the one said to help most with breathing, but it was no miracle for me. Maybe I should quadruple dose it.

    Very important
    : do you ever get food stuck in your esophagus? (Eosinophilic Esophagitis, aka EoE)

    I believe I have neither, but have overactive MCs nevertheless because of a high background of histamine et al.

    methyl folate nor methyl B12 did nothing for me

    When you find out, let me know :) It's not easy to track down the 'why' of it.
     
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