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Mast Cell Activation Symptomatology

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 4, 2012.

  1. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    The skin condition is shown very well at this spot in the video here (which hopefully will show up as a still in this post):


    [edit: look at spot 5:17 in the video, the site software won't use a URL that directly specifies the spot such as youtube.com/watch?v=CplxXGpFeKQ&feature=player_detailpage#t=317s]

    and shown also on a guy nearer to the end.

    Also, when you say "sometimes slightly raised", that would likely be the effloressences (flowerings) that you mentioned elsewhere. In the video, the term dermatographism is used, meaning 'skin writing'.

    Early in the video (3:15), one doc (Greenberger) mentions UpTodate as being an authoritative and respected resource for clinicians. Maybe that can help you with your own doc appointment.
    http://www.uptodate.com/contents/se...NPUT&searchControl=TOP_PULLDOWN&searchOffset=

    (And btw, this video is what I'd watched last week that prompted me to order quercetin. That's also where I'd heard first of 'that thing in olive oil', which turns out to be the luteolin mentioned in the NeuroProtek by nanonug.)

    The docs in the video are:
    Cem Akin, U of Mich Allergy and Immunology
    Mariana Castells, Brigham and Women's Allergy and Immunology
    Norton Greenberger, Brigham and Women's ???
    Theoharis Theoharides, Tufts U Immunopharmacology

    I'd guess that like Theoharides, they are all FAAAAI which is Fellow of the American Academy of Allergy Asthma and Immunology
  2. Calathea

    Calathea Darkness therapy

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    Bit dopey tonight, and it's after 9.30 so I have my orange-tinted glasses on (darkness therapy), but yes, those lesions look about right. The other photo I'd seen had huge lesions, the person in question had more lesions than unaffected skin on their back. I still have no idea how likely a dermatologist is to consider them worth fussing over. They never showed the slightest interest in all those skin tags, for instance.

    Dermatographism - also known as dermographism or dermagraphism (and I think it's the most poetic name ever for a medical condition), and I got diagnosed with that years ago. Though I think I have it quite mildly, but it's hard to tell, it's normal for my skin.

    I never took to drinking coffee, partly because I don't really like it, and partly because it made my nose peel every time. I don't think I've tried it in fifteen years or more. I wouldn't have put cream in it, but no idea about dairy. The thing is, it was a very specific reaction, and I never got it when I ate dairy at other times. Not that I've had any dairy since 1997!

    As you say, the healthcare systems in different countries suck in different ways. If I were in the US, I don't think I'd be getting any healthcare at all, considering my income - I know a number of Americans who are stranded without essential medication, or unable to access appropriate contraception, and it's heartbreaking to see. Here at least we do have free access to practically everything, but there are waiting lists for specialists (not too bad these days), and you rarely get to pick your specialist personally. Although sometimes you do, I've had a certain amount of choice with my gynae and my physio. I don't think I have the option of an allergist, really, I'm not showing any signs of being allergic to anything, so there's no reason for a GP to refer me to an allergy clinic.

    I'm 34. I notice that my underarms feel a bit sore occasionally, but I think that's it for lymph nodes.

    Is CBC a complete blood count? No idea what it showed, they check me out for anaemia every now and again as I'm vegan and pale-skinned, and I never come back as anaemic. That's all I'm told of the results. Progression to marrow? Progression of what?

    I don't think "I have these little brown marks which are sitting there quite peacefully and YOU MUST DO SOMETHING THEY MAY BE LIFE-THREATENING" is quite the best approach! More likely to put them off, if anything. I was a bit stressy when my GP saw me about an ear problem a while back (sleep deprivation and PMDD) and she ended up saying she wanted to refer me to a functional neurologist (ick) rather than the ENT department. Looking like a hypochondriac really doesn't impress doctors.


    Not really, they see it as "patient who thinks they know better than the doctor". Plenty are better than that, but you're best playing it safe until you see what the doctor is like and whether they can be trusted. Some are OK if you ask about a condition you're wondering if you have, others get really huffy, and won't diagnose you unless you fit their personal criteria - which may have nothing to do with the official criteria. I once saw a gynae who supposedly specialised in PMS, who wriggled out of diagnosing me purely because I didn't do well on her pet drug (Cerazette, which makes PMDD worse in most patients, as it did for me), and also refused to look at my symptom history, which should have enabled her to diagnose me in one minute flat.

    Those tests you recommend sound like they're likely to set off the same alarm bells, plus I don't understand them. Could you simplify it a bit for me? Should I ask about histamine levels, and are histamine levels something I can ask to have tested?

    Thanks for all the help, I really appreciate it.
  3. nanonug

    nanonug Senior Member

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    Plasma histamine levels most probably won't show anything so don't ask for them. Histamine is quickly metabolized into N-methylhistamine and excreted with urine. That's why the 24-hour urinary test has diagnostic value. Tryptase is released by mast cells and is a direct marker of mast cell activation. But one must catch "it" at the right moment to be able to see an increase.
  4. Calathea

    Calathea Darkness therapy

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    And is this right moment predictable? My appointment's for 9am, which is a little before the time I usually get up.
  5. Ocean

    Ocean Senior Member

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    I have wondered about mast cell issues since I tend to get a lot of flushing. I'm hoping to see an allergist/immunologist to look into it. My tryptase was normal but I didn't get it done during a flushing episode. It's been hard for me to get to a lab during the time I have symptoms which usually occur in the evening when labs are closed.
  6. nanonug

    nanonug Senior Member

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    In my case, it is. After I eat, some 30 minutes or so, the extreme fatigue and brain fog begin. Ideally, one does a tryptase test prior to an "event" and then during an "event". If tryptase increases by more than a certain amount then that signifies mast cell activation.
  7. Calathea

    Calathea Darkness therapy

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    I'm going to have to look up tryptase before I work out what these events are, aren't I. I often conk out after lunch, but not so much with other meals. And then there are the meals when I break out in a sweat halfway through. The GP did explain what that was about, but I was groggy at the time and it escapes me. Probably something totally different.

    Ach, the latest anti-histamines they tried me on made me feel crap (I've somehow been on four different ones recently), so I came off them about a week ago. And tonight I am horribly itchy. I grabbed the anti-histamines I was on before, they're milder but I remember them as being better than nothing, and they don't give me nasty side effects. Three hours later, I'm still itchy. I'd forgotten how unpleasant it can be.
  8. taniaaust1

    taniaaust1 Senior Member

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    Their can be any number of them and any size..eg one can have so many that they can end up joining up as large patches or one may only have a few tiny spots. It is also possible to have systemic mastocytosis and have no spots at all showing up on the skin. There are quite a few different kinds of mastocytosis (I think once came across a list of about 4-6 different kinds.. Id previously only thought there was only two kinds).



    or you could print out a picture of someones masto spots which look the same as yours do and point out to the doctor it looks the same and hence you'd like it ruled out as its a serious disease... maybe a doctor seeing the similarity would help to convince them to look into it further. (there is quite a few pictures of this online in various places).


    The masto society website is at http://www.tmsforacure.org/welcome.php
    From that website
    "A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do. "

    So yeah.. some how having one of those spots biopsied would be the way to go.
  9. lansbergen

    lansbergen Senior Member

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    I always regarded mastcell activation as a normal respons to infection.

    To me itching and rash are signs the immunesystem is fighting an intruder.

    And I know the itching can get so extreme that it drives one crazy.
  10. lansbergen

    lansbergen Senior Member

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    Review

    The Effect of Bacterial, Viral and Fungal Infection on Mast Cell Reactivity in the Allergic Setting
    Sarah M. McAlpine, Mattias Enoksson, Carolina Lunderius-Andersson, Gunnar Nilsson

    Clinical Immunology and Allergy Unit, Department of Medicine, and Centre for Allergy Research, Karolinska Institutet, Stockholm, Sweden

    J Innate Immun 2011;3:120-130 (DOI: 10.1159/000323350)

    Abstract
    Mast cells are well known for their role in allergic inflammation where, upon aggregation of the high-affinity immunoglobulin E receptor, they release mediators such as histamine that cause classical allergic symptoms. Mast cells are located in almost all tissues and are especially numerous in organs that interface with the environment. Given this strategic location and the more recent notion that they are endowed with receptors that recognize endogenous and exogenous danger signals such as pathogens, it is not surprising that they function as important cells in immune surveillance. When mast cells are activated by pathogens they modulate innate and adaptive immune responses. In allergy, infections might cause exacerbation of the allergic reaction by affecting the reactivity of mast cells. With new developments within the field of mast cell biology, we will better understand how mast cells execute their effector functions. This knowledge will also help to improve the management of allergic diseases.

    Copyright © 2011 S. Karger AG, Basel
    Sherlock likes this.
  11. lansbergen

    lansbergen Senior Member

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    Parainfluenza-3 virus-induced enhancement of histamine release from calf lung mast cells – effect of levamisole

    Ogunbiyi, P.O., Black, W.D. & Eyre, P. Parainfluenza-3 virus-induced enhancement of histamine release from calf lung mast cells – effect of levamisole.J. vet. Pharmacol. Therap.11, 338–344.

    Clinically healthy calves were divided into five groups. Group 1 served as control; Group 2 received levamisole (LEV), 3 mg/kg, s.c; Group 3 was aerosolized with parainfluenza-3 virus (PI-3); Group 4 received LEV and PI-3 and Group 5 was inoculated with Pasteurella haemolytica. They were killed 6 days after virus exposure or 5–6 days after bacterial inoculation. Lung mast cells were prepared by enzymatic treatment. Mast cell histamine (HIST) release was assayed spectro-fluorometrically. Total HIST (m̈g/g) in mast cells was as follows (x̄± SEM): control (5.30 ± 0.26); LEV (5.27 ± 0.31); PI-3 (6.37 ± 0.65); LEV ± Pl-3 (6.21 ± 0.51); P. haemolytica (7.06 ± 0.85). Spontaneous HIST release was as follows (% total, x̄± SEM): control (10.38 ± 1.09), LEV (11.95 ± 2.13), PI-3v (73.57 ± 11.97), PI-3v ± LEV (19.50 ± 3.03), and P. haemolytica (70.59 ± 5.94). Calcium ionophore A23187 (5 times 10-6 M) -induced release (% total, x̄± SEM) was: 51.53 ± 3.05, 50.02 ± 2.70, 83.91 ± 4.09, 75.21 ± 4.51 and 70.59 ± 6.91 for control, LEV, PI-3, LEV ± PI-3 and P. haemolytica groups, respectively. Both virus and bacteria increased HIST content of lung mast cells and enhanced ionophore-induced release. Levamisole significantly reduced spontaneous HIST release in virus-infected calves but had no effect on ionophore-induced release. Results suggest a significant role for HIST in pathogenesis of bovine microbial pneumonia and that LEV probably does not modulate non-immunologic release of HIST from bovine lungs.
  12. Calathea

    Calathea Darkness therapy

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    A few people have mentioned "attacks". What are these attacks meant to be like? I get so many symptoms fluctuating all the time, I have no idea what could be meant here.
  13. nanonug

    nanonug Senior Member

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    After I eat, I get extreme brain fog, tachycardia, pre-syncope, bloating, sometimes chest pain, difficulty in focusing, rhinitis and sinusitis, sometimes headache, etc.
  14. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    As fate had it, I got sick this week, starting Tuesday morning with the increased sore throat and culminating yesterday with the brain fog and fatigue. Also, after eating around 2pm I got the nausea and upset stomach. I don't think that it was related at all to what I ate. Maybe just the mechanical action/pressure of the food or maybe the stomach acid triggered the presumed mast cell degranulation. Also, I note that the fatigue and fog preceded the pronounced stomach effects.

    Today, most of the symptoms that had been building through the week are gone. But if it's that way for you every day, that must be very discouraging.

    Early morning, I took 500mg quercetin on an empty stomach to see if it helped with the mildly burning eyes. Maybe it did, because for <1 hr the burning was gone.

    So I decided to take 500mg niacin, as I've done many times through the years. I've always flushed a lot with niacin. I'd read about people complaining about face flushing. I'd get it to the knees. Since having CFS, I get it to the ankles. Today, I got hardly anything at all. Quercetin blocked the niacin flush.

    So I looked and found Theoharides et al:
    https://www.ncbi.nlm.nih.gov/pubmed/18831918
    "A quercetin containing supplement reduces niacin-induced flush in humans"

    He's got a similar study with luteolin. All this ostensibly deals more with PGD2, but I'll see how it affects me overall and especially with regards to histamine.

    I miss the flush. Whereas others flee from it, I think it's healthy.
    alice likes this.
  15. nanonug

    nanonug Senior Member

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    "Frustrating" is the word I choose to describe my situation.

    I currently take both quercetin (w/ bromelain) and luteolin. South of the stomach, things have improved considerably. However, the neurological symptoms have only improved a little bit. Quercetin has terrible bioavailability. That may be the reason why it is working the way it is working (south but not north...) I decided to buy the NeuroProtek thing to see if bioavailability is better.
  16. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Well, it absorbed well enough in the standard dose to abolish the niacin flush, at least for me. Maybe PWCs are different.
  17. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    presumably, why quercetin works, very abbreviated: cGMP is the second messenger that transmits the signal from membrane to the intracellular cascade that results in MC degranulation. But cAMP opposes cGMP. Quercetin and other plant compounds increase cAMP.
  18. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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  19. xks201

    xks201 Senior Member

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    Problem is leaky gut. Combine that with SIBO and you have microbes and food going directly into your bloodstream. That is what is happening in a great majority of people. Even the people on here that claim to have exotic brain viruses and whatnot are having digestive problems. IF the gut is not good, nothing else will be.

    That allergic reaction of antigens entering the blood stream is what is causing your mast cells to go off in my opinion.
  20. taniaaust1

    taniaaust1 Senior Member

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    We were always told at Naturopathy collage that the niacin causing a flush indicated the person was low on this so hence a trial of it to see if a flush happened, was at times a way of testing out the need of it.

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