The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Mast Cells in Lung Homeostasis: Beyond Type I Hypersensitivity

Discussion in 'Mast Cell Disorders/Mastocytosis' started by osisposis, Jul 22, 2016.

  1. osisposis

    osisposis Senior Member

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  2. Hip

    Hip Senior Member

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    It's usually a good idea to explain a few details about the study you are posting, and say why you are posting it.
     
  3. osisposis

    osisposis Senior Member

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    I have ME/CFS from environmental exposure, namely moldy homes, all my research is centered around that, this pertains to the airways and mast cells, sorry, to much going on at the moment , I'm slow and everything takes a lot of effort and shareing my research beyond here gets taxing at times. I'll try to do better in the future
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @osisposis This looks really interesting and I bookmarked it so I can go back and read it later. Thanks for posting it. Do you have breathing issues and mast cell disease following mold exposure?
     
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  5. Hip

    Hip Senior Member

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    You are not really sharing your research, you are just creating dozens of empty threads on this forum with little or nothing written in them, apart from a link to a PubMed study on mast cells.

    But people can go to PubMed directly and look at all the studies on mast cells.

    To share you research, you would need to detail a bit about the study you are posting, explaining its significance for mold and environmental exposure, explaining what the study might mean to other ME/CFS patients with environmental exposure in terms of issues like understanding the pathophysiology of the disease, or in terms of possible treatments that might help other ME/CFS patients.

    Or if there is something in the study that you don't quite understand, you might want to ask other members some questions about it.

    Most of us here suffer from brain fog and slow thinking, but if you focus on one study, and take some time to digest it and explain it to others, you will create far more useful threads.



    By the way, have you looked at the studies by Dr Joseph Brewer on chronic sinus mold infections in ME/CFS patients exposed to mold, and his experimental treatment using antifungal nasal sprays to treat this mold infection?

    Dr Joseph Brewer found the following mycotoxins in ME/CFS patients: ochratoxin A in 83% of patients, macrocyclic trichothecenes in 44%, and aflatoxins in 12% of patients. None of these mycotoxins were found in healthy controls. Ref: 1 2
     
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  6. leela

    leela Slow But Hopeful

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    People have the agency and free will to share links however they like.

    OP has stated they are not up to the task of summarizing right now.
    Perhaps rather than critiquing their style, @Hip, you could add a quick summary yourself if you felt so moved, thereby helping OP and all
    other readers.
     
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  7. Hip

    Hip Senior Member

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    They have, but it's good etiquette and good practice I think to guide your reader at least a little bit to the point you want to make. Most of us have brain fog here, and limited ability to read text and plough through papers, so given this audience, it would be a good idea just to provide at least some summary or explanation of the paper.

    A lot of her threads only contain a URL, like these: 1 2 3 4 5 6 7 8



    If I am researching a subject, I will spend several days or weeks looking at the topic, and then it will take me around a day to write up a post for a new thread on PR.

    In the last month or so, @osisposis has posted over thirty new threads, with little in them apart from a single link to a study, but little or no comments, which seems a spammy to me.

    I guess maybe @osisposis is too time limited or brain fogged, and is hoping that others will read the papers for her, and then provide a summary or viewpoint. But think @osisposis will get a better response from members if some initial context is given. Most readers want to know: does this study indicate a possible new treatments; or does the study throw new light on the nature of ME/CFS.

    Also, since many of the studies posted are on the same topic, it may be a better idea to post these in a single thread on that topic, and develop the discussion on that thread.

    Just my suggestions for creating better threads.
     
    Last edited: Jul 26, 2016
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  8. osisposis

    osisposis Senior Member

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    I don't need anything explained to me, and yes, hard and slow for me too , is there somewhere to put it all together? cause ya that would be great, I'll work on the write up, to the best of my ability, I suffered pretty bad brain injury, so don't judge my writeing because my research is good.

    Theres a lot of new research out supporting the monacondria dysfunction/injury in ME/CFS , but what about fibromyalgia side of this? this is what this is about, fibromyalgia and having both allergic and non-allergic , anaphylaxis/anaphylactiod , multiple hypersensitivities, use to be call MCS multiple chemical sensitivity, mast cells are the bridge between the innate and acquired immune systems, water damaged are not just about mold and mycotoxins first thing and they are not all the same.

    I'll attempt to keep it simple, mold has many byproducts I wont go into all, there can be a low dose long term exposure(months to years) this may accure from a say 3 story Victorian home , no insulation, roof leaks off and on inside plaster walls may be years before it become visable but it will affect you in a low dose endoctrine disruptor kind of way.

    Inflammation, some level of involvement witch will over time get worse as the build up of defragmented dried mold and company become part of the dust in your house. Stachyboctrys (the black mold), fusarium mold might be some of the molds that might grow in this situation.
    A high moisture mold house say from the 70's airtight and insulated , (insulation gets wet stays wet, molds love it and plasterboard from that tim roof leaks, insulation wet and moldy, insulation so still no clean air, bad situation , like maybe that old moldy house down the road that has set there abandoned for years. Someone desides to fix it up cheap and sale for profit, the remodal but don't removed all the mold and clean everything down to the studs. They just cover up with cheap manmade materials and throw down some carpets that's offgassing, ewww, things just got worse, mold loves all this stuff and with the high moisture and humidity theres mold voc's and man made voc's, it's been raining and leaking and this place virtually seems to come alive and there no doubt is also high b-gulcan along with the high amount of mold, mold byproducts, voc's, chemicals, mold toxins, allergens, irritants, and pathogens.

    It's a war zone, bacteria's like moisture too, this , with everything involved is a high dose short term exposure, mast cells are involved in the process of becoming hypersensitive to both allergic and non-allergic stimuli, aka chemical/toxins, when the combined dose of everything mast cells can falter where theres a tipping point where autoimmunity, autoinflammatory, and systemic infection can accure.

    Yes other cells involved and in the wosre situations it can severely injure your airsways and involve the whole body rather quickly. if you look at the paper on aspergillus it causes mast cells to degranulate, this is a second poisoning because mast cell contents is toxic, so we got mast cells out the yingyang and ones that aren't degranulating are also putting out harm subtances and they play are role in BBB breakdown.

    They are in the airways and causing damage, and the sinuses are involved and the olfactory system ,bulb and tracts s, the lungs, the stomach , bowels, affects to multiple organs, the CNS. There can be damage to the dura matter and infection can set in this route sinus>brain/olfactory,frontal lobes,dura matter(myelin sleath). Pretty sure infection here and you will have re-accureing hot/sore spots on your scalp and no doubt suffered meningitis on top of everything else.

    You may or may not of realized that that dripping or running watery stuff coming from your nose and maybe even ears was CSF but if you had it had it comeing out your ears when you would go outside and they would unswell shut and it ran you might put your hand up there and let it run onto your hand and see the white streaks of infection in it.

    You will relate to little kids with severe autism and be said because you fell their pain and they cant tell anyone, you will relate the GWI TBI/PTSD because you suffered TBI AND YOU WERE LIKELY DIAGNOSED WITH ptsd BY A UNKNOWING DOCTOR., SORRY CAPPS. AND YOU KNOW BECAUSE OF YOUR RESEARCH THAT THEY ARE TRYING TO STRAIGHTEN OUT THE MESS BY GETTING US GROUPED AND ITS VERY IMPORTANT THIS PART GET RECONIZED, PS, MY NECK IS KILLING ME, NOTHING NEW, I HOPE THIS IS
     
    Last edited by a moderator: Jul 27, 2016
  9. osisposis

    osisposis Senior Member

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    good! sorry, my computer tried to freeze took me to long to write that. night.
     
  10. taniaaust1

    taniaaust1

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    in an ideal world yes, but just as many here dont have the energy to go and read everyones links, many here dont have the energy either to go and write summaries of explainations of why they are putting a link up.

    If a very sick ME person has a link they think we may be interested in looking at, I'd rather see them post it then feel they cant post it as they dont have the health to explain it all themselves.

    it isnt good manners to critsize another who is doing what they do and who may be cutting things short cause they are feeling too ill to do more.

    I dont like to see anyone here critiized cause others think they are not doing enough!

    "If I am researching a subject, I will spend several days or weeks looking at the topic, and then it will take me around a day to write up a post for a new thread on PR."

    Shouldnt expect others here to be able to do what you do, That could put some here out of action for a month of more, spending a whole day doing a write up. I tried to do a book review I'd offered to do for PR but found I was just unable to do that, I gave up after a couple of months.
    ..................................

    sorry osis .. my brain cant read that either without it broken up.
     
    Last edited: Jul 27, 2016
  11. justy

    justy Donate Advocate Demonstrate

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    My two cents worth. I went to the link - I have MCAS so thought it might be of interest to me. I read a whole lot of it, didn't really understand it, couldn't see the point of it for us or people with MCAS and eventually gave up.

    I agree with @Hip that if posting a link to a paper at least a sentence saying why others might find it useful is helpful, this at least would guide my reading.
     
  12. Hip

    Hip Senior Member

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    I appreciate that if someone's cognitive issues are significant, writing a long account of a study may be difficult.

    But if you have read a paper and understood it — and I think @osisposis understands science well, so her views and comments would be valuable — it shouldn't be that difficult to provide a one sentence summary about why a paper is interesting.

    ME/CFS patients are usually interested in possible new drugs or treatments, or new understandings of the biology of the disease. So for example you could summarize a paper in one sentence by writing: "in this paper, they are talking about using a new drug called X to treat MCAS."


    But if @osisposis really does find it too difficult at the moment to write a descriptive sentence or two, then I do understand. I have myself had major cognitive difficulties in the past, so I appreciate how these cognitive issues can severely limit you.



    What type of brain injury did you have, @osisposis? Was it meningitis?

    I had what appeared to be an episode of viral meningitis 10 years ago (I think it was from the same Coxsackie B virus that triggered my ME/CFS). The meningitis caused some permanent brain damage and loss of mental faculties.

    I developed severe ADHD after my meningitis, and as a result on many days, I was unable to read even a simple 3 sentence email. I had no problems intellectually understanding things, but the ADHD did not allow me to "input" written text into my brain. I still have trouble reading and inputing info from text sources, though I have improved quite a bit over 10 years.


    Do you have any anxiety symptoms as a result of your brain injury? I developed severe generalized anxiety disorder after my meningitis. Anxiety = mental tension and/or excessive worry. In my case, the anxiety was constant severe mental tension.

    My theory is that anxiety is often generated by chronic brain inflammation; in my case, long term brain inflammation resulting from my meningitis.

    I finally found some relief from the anxiety via certain supplements such as N-acetyl-glucosamine which I think work by reducing brain inflammation. My anti-anxiety, anti-brain inflammation supplements are detailed here:

    Completely eliminated my severe anxiety symptoms with three supplements!

    Non-Standard Anti-Anxiety Treatment

    Inflammation generally occurs in brain injury, so supplements that reduce brain inflammation may help you.
     
  13. osisposis

    osisposis Senior Member

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    Yes, I suffered meningitis. Yes, things are hard for me. Usually I pull the parts out of the links to express the points I am referring to but for some reason here when I try to post stuff if I don't post it one line at a time and try to post as I have it it gets all mexed up and in the order. Why is it doing that? so that's why I just posted the links.

    I suffer anixity but with exposure in a water damaged building, even in the low dose long term senserio that's a symptom in the beginning, but symptoms are just that, symptoms until it because disease and that involved break down of the immune functions.loss of homeostasis.

    I have better days and worse days, I have anaphylaxis to mold extracts if that gives you a idea about my life and trying to avoid my triggers witch is pretty much impossible but you have to do the best you can.

    I understand that many wont get or know the connections, I thought there were doctors here that might, I have always shared my research and in the sbs group I spent a lot of time backing up my research with my experiences because my research is centered around my insight to my ME/CFS. but I left that group and just continued shareing my research with some by email, and I don't have to go into detail because they are ready know my history and know where I'm coming from and pulling out bits of the link and short comments is enough for them, but somehow people mad ill by environmental exposures has to be brought into the lime light because it may very well be why many of us our here and I'm not just talking about exposure in a moldy house, chemical exposures to many things in our water,air, ground,foods, is chronic and few people think about not only what they put in their stomachs but what they breath and what obsorbs through the skin.

    I'm not going to opologize for how I write or spell or anything else, give me a break people, I'm a very bullheaded need to know person, my research has not been easy and I put it above relearning how to spell or trying to gain back my math abilities or anything else, for one I was house bound and thought I'd go crazy if I didn't do something with my time, in 2001 when this happened to me there was no help , it took me 5 -6 years just to get to the point that I could get online and I joined the sbs group and no one had answers, I began researching and pretty much that's all it took because everyone was thirsty for info. and because I had lived though two very different exposures that affected me differently but in some ways the same I did have some insight. I spent years rereading stuff trying to get it soaked into my brain, I had notes everywhere and still do, I have a hudge problem organizing but I have determination and I've also had to basicly learn ways to help myself
     
    Last edited by a moderator: Jul 27, 2016
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  14. osisposis

    osisposis Senior Member

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    this site doesn't appear to accomadate the way I do things so maybe it's not the place for me
     
  15. Hip

    Hip Senior Member

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    I know that feeling, @osisposis: the first year after my meningitis was very hard, trying to get a damaged brain to work again.

    Sorry I was demanding about your posts. I do now appreciate the difficulties you are facing, and if there is anything I can do to help, let me know.



    Can you explain a bit more what you mean about getting mixed up when you post? Perhaps I can help explain how to use the the features of the post box and text editor of this site.



    Did you have mold allergy before you were hit with meningitis, or did the mold allergy only appear afterwards?



    You don't have to worry about spelling. After I was hit with meningitis, my ability to spell words greatly deteriorated. I found it much harder to type words after meningitis as well: I often type the letters of a word in the wrong order, because my brain seems to find it hard to send the signals to my fingers in the correct order.

    Nowadays, I have to rely on the spellchecker to correct things. Every sentence I type has at least 5 or 6 typos or spelling mistakes. Thank goodness for spelling autocorrection.
     
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  16. osisposis

    osisposis Senior Member

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    may of had a few allergys prior to these moldy house exposures but no never was hardly sick prior and nothing like this the allergic disease/multiple hypersensitivities came from the exposure and the breakdown to my immune system over it.

    I have reset my password, not sure if that will help, when I post stuff it's on a note pad and I usually can cut and paste in that order and it goes in that order but for some reason now when I try to post here by cutting and pasteing it basicly gets backwards and all together and I have to try to cut and paste every line seperatly under the other and its very time consuming.

    I am getting ready to try again, I gathered some info. that might help others understand the mast cell, mastocytosis, autism, fibromyalgia links and how that plays in with not only a high moisture water damaged building exposure but with other chronic chemical exposures witch I thought that most people with mastocytosis may already be familur with.

    I cant stand dealing with word spell checker because it just takes more time, I desided long ago that it's good to be seen as is, and most people, if they want to can ask questions if they really cant figure out what your writeing, I'm just being real and my handicaps are real and I have managed what was very hard to do and that's research , I'm not perfect and don't pretend to be, the brain damage is real and I believe it is good to let people see that like it is, it doesn't mean I'm stupied, I never was.
     
    Last edited by a moderator: Jul 27, 2016
  17. osisposis

    osisposis Senior Member

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    heres some things that I said I'd post, vedios may be more easier than a lot of reading.

    heres how it comes out if I just select all on my note pad and cut and paste here, below I'll do it one line at a time

    . T. C. Theoharides presents “Mast Cell Disorders” http://jneuroinflammation.biomedcen...l.com/articles/10.1186/1742-2094-8-168Journal of Neuroinflammation2011Bodi ZhangTheoharis C TheoharidesEmail author and Neuro-inflammation, blood-brain barrier, seizures and autismhttp://www.sciencedirect.com/science/article/pii/S0925443910002954Mast Cells in inflammationVolume 1822, Issue 1, January 2012, Pages 34–41Biochimica et Biophysica Acta (BBA) - Molecular Basis of Diseasehttp://thecoffeeklatch.com/dr-theoharides-what-do-mast-cells-mast-cell-activation-disorder-have-to-do-with-pain-fatigue-allergies-and-autism/Dr. Theoharides – What do mast cells “Mast Cell Activation Disorder” have to do with pain, fatigue, allergies and even autismhttp://www.autismone.org/content/mast-cells-disrupt-gut-blood-brain-barriers-and-contribute-autism-theoharis-theoharides-md-pMast cells disrupt the gut-blood-brain barriers and contribute to autism by Theoharis Theoharides, MD, PhDhttp://www.autismfile.com/science-research/mast-cells-microglia-and-brain-inflammationPosted on November 6, 2012 by admin Mast cells, microglia and brain inflammation
     
    Last edited by a moderator: Jul 27, 2016
  18. osisposis

    osisposis Senior Member

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    Mast cells, microglia and brain inflammation
    Posted on November 6, 2012 by admin

    http://www.autismfile.com/science-research/mast-cells-microglia-and-brain-inflammation

    Mast cells disrupt the gut-blood-brain barriers and contribute to autism by Theoharis Theoharides, MD, PhD

    http://www.autismone.org/content/ma...-contribute-autism-theoharis-theoharides-md-p

    Dr. Theoharides – What do mast cells “Mast Cell Activation Disorder” have to do with pain, fatigue, allergies and even autism

    http://thecoffeeklatch.com/dr-theoh...to-do-with-pain-fatigue-allergies-and-autism/


    Biochimica et Biophysica Acta (BBA) - Molecular Basis of Disease

    Mast Cells in inflammation
    http://www.sciencedirect.com/science/article/pii/S0925443910002954

    Neuro-inflammation, blood-brain barrier, seizures and autism
    Theoharis C TheoharidesEmail author and

    Bodi Zhang
    http://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-8-168

    Dr. T. C. Theoharides presents “Mast Cell Disorders”
     
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  19. osisposis

    osisposis Senior Member

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    changing password didn't help, this didn't accure before here when I posted stuff just with this lastest stuff I have tried posting. also it would be great if there was a environmental exposure , subject heading cause I would have put it all there instead if trying to figure out where things should be posted under what heading
     
  20. osisposis

    osisposis Senior Member

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    no need to say sorry, I'm use to all that, my main goal is to bring awareness not even so much to patients (because I know how hard it is for me) as to the doctors, I'm trying to get this info. seen by ME/CFS doctors
     

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