The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Constant sinus / throat / lung irritation

Discussion in 'Hypersensitivity and Intolerance' started by ebethc, Nov 3, 2014.

  1. ebethc

    ebethc Senior Member

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    ANY particulate matter - pollution, dust, pollen, mold spores, etc - irritate my sinuses, throat, and lung... I get headaches, joint pain, body aches and the dreaded brain fog.. I had comprehensive allergy tests and they all came up negative.. My allergist said that any particles irritate my sinuses, etc.; it's not an allergic reaction, per se. I know allergy testing is not nearly perfect, but I still think she's right.

    The air quality where I live is not terrible... If the air quality report for PM2.5 on the high end of "GREEN" then I feel the side effects, and if it's "YELLOW" then I'm completely miserable...

    I've tried everything (steroids, supplements, Chinese herbs) and I'm at my wits end... I could move to someplace with zero pollution, but then I'd have no place to work and no friends because I'd be living outside civilization! Plus, there's no guarantee that my new zero pollution home would remain zero pollution.

    Has anyone had this problem? Have you found anything that works?

    thanks!!

    ps I'm having the nutreval test this week - hopefully the results will help
     
  2. optimist

    optimist Senior Member

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    Yes, my sinuses and trhoat used to be constantly irritated for a year and a half or two. Now a days it is on and off. It is sort of a mystery, but stress and food that I don't tolerate well seems to be triggers. After I learned to calm down and eat properly, it has become better.
     
  3. ebethc

    ebethc Senior Member

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    @optimist - what changes did you make in your diet?
     
  4. Martial

    Martial Senior Member

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    Sometimes its not allergens directly but irritated nerves which react more acutely to allergens as another side effect. I get these intense sneezing fits some days from treating an infection in my CNS, its like something is just agitating the nerves and I go nuts lol. Everytime I kill a bunch of stuff off this always happens. Try Neuro Protek this will help with the reaction and shuts down the H1, H2 receptors responsible for histamine response. It's also "neuro protective" as the name states.

    http://www.algonot.com/neuroprotek.php

    like optimist mentioned diet changes, ie. removing gluten, wheat, soy, cow dairy and other common allergens from diet can also help, also taking digestive enzymes of some sort with meals. Low stomach acid can cause foods to ferment in the stomach because of a lack of break down. High protein meals can cause an allergen response while the body is trying to break the rest down too slowly. A paleo style diet usually works very well as a start template. Use goat dairy instead of cow as well its a great source of nutrients, most people who cut out dairy completely get low calcium levels. Goats dairy is actually anti inflammatory. The high glutamine content helps to heal tissue and restorative functioning of the digestion system.
     
    Last edited: Nov 3, 2014
  5. ahmo

    ahmo Senior Member

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    @ebethc I know mast cells has come up in your threads before. I haven't found anything w/ exactly your symptoms, but here's an interesting article, you might find something useful...Looks like @Martial is thinking along the same lines. As I was typing he's just posted re Neuroprotek, developed by mastcellmaster Dr theoharides. I looked at his site, mastcellmaster.com for articles, but didn't see anything directly related to your symptoms. Neuroprotek has been wonderful for me.

    http://geneticgenie.org/blog/2013/0...-chronic-illness-and-its-role-in-methylation/
     
    ebethc likes this.
  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Recommended by allergists and ENT docs:

    www.amazon.com/Neilmed-Sinus-Rinse-Starter-packets/dp/B000RJGB5C

    Based on the "Neti pot," you can physically rinse particles out of your nasal passages with a saline solution. (Don't use plain water as that will only make your nose worse!)

    I've used this a lot.

    ETA: The Neilmed kits come with packets of premeasured buffered salt, to be added to your own distilled water.
     
    Last edited: Nov 4, 2014
    ebethc likes this.
  7. Martial

    Martial Senior Member

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    You have to use distilled water if not a saline solution. Using regular water can cause a deadly brain amoeba infection, just thought that was very important to add!
     
  8. ebethc

    ebethc Senior Member

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    @Martial @CFS_for_19_years

    I use a Neti pot, usually w Saline solution that I get at walgreens w Rx.. Sometimes I add a steriod solution to bring down swelling, but I try to avoid it and just use the saline..

    @Martial - yikes.. thanks for the heads up re the tap water! I don't use tap water, but it's good to know that I shouldn't use it as a backup
     
  9. ebethc

    ebethc Senior Member

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    @Martial - yes, I think that this is what my allergist was getting at.. Good to get a patient's feedback as validation...

    I have this, and, unfortunately, have not noticed a big difference.... Quercetin and Pycnogenol and Mangosteen seem to help (approx ~30 - 50% improvement, which I'll take..)... Do these supplements indicate any particular histamine pathway? e.g., H1 vs H2... Benadryl doesn't really do anything for me, which I believe indicates no H1 prob..

    I've been eating a good diet then fell off the wagon in the past few weeks after a really bad setback.. I had a GREAT september due to diet & new protocol (diet = mostly gluten-free vegan w ~60 grams of animal protein per day, like chicken or lean meat or fish and supplement protocol below link). I was focused and energized mentally, had physical energy and felt like a normal person! In October I had a massive setback and felt major inflammation & brain fog & fatigue... I thought it was a bad reaction to arginine (I have the EBV virus w high titers), but who knows.... I've stopped taking the protocol and feel like i'm back at square one... taking nutreval tomorrow, so hopefully that will help. I think that nitric oxide may be helpful, so I'm trying to figure out the best way to raise it... I think that the arginine did this, and that's why I was feeling to so good in September... It stimulates baroreceptors and release of norepinephrine, which makes for a more focused brain... Maybe I just got too much Norepiphrine then crashed??? I just don't know, I'm very hopeless and negative at this point.

    http://forums.phoenixrising.me/inde...eaction-cracks-in-the-side-of-my-mouth.33021/


    ps thanks for answering all my questions, and sorry if they are redundant! I'm super spaced out, confused and overwhelmed after getting my hopes up in September then crashing in October...
     
  10. ahmo

    ahmo Senior Member

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    @ebethc I returned to this thread to add that my cluster of mast cell symptoms might be atypical. I've had to search them out individually. It might be similar for you...For me, tiny ulcerations in my ears, nose, blister-like flare on eyelid, blood blisters in mouth, urinary urgency. These things all come and go. This is definitely related to the state of my adrenals. Additionally, I think my skin blotchiness is probably fairly typical. I've found coffee enemas for clearing enemas helps me relieve these symptoms.

    I find my mind keeps returning to your symptoms and their non-allergic basis, wanting to make sense of them...:rolleyes:

    I see that you get a + response to Quercetin, mangosteen. Royal jelly is, I believe, more specifically useful for mast cell than histamine. Also, I get fantastic anti-histamine effects, almost immediately, from rutin....I hope going off your protocol doesn't mean you've resumed gluten...probably not a good thing. And there are also gluten cross-reactive foods:aghhh: (sorry...)

    Some links...

    http://www.histamine-intolerance.in...-Mast-Cell-Activation-cascade-of-symptoms.pdf Mast cells/histamines diagram

    ‪Mastocytosis with Theoharis C. Theoharides, MS, PhD, MD, FAA‬
    http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ

     
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  11. SOC

    SOC

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    @ebethc, for me going dairy-free was a big help with those kinds of symptoms. I've also gone largely gluten-free, although for me that doesn't seem to have had a large impact on sinus/throat/lung irritation.
     
    ebethc likes this.
  12. ebethc

    ebethc Senior Member

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    @SOC - thanks, I'm getting back on the program... I just don't understand how I could feel so good, eat right, take a supplement protocol that makes sense and still crash in October... So much time lost and I just don't know where I go from here... I'm taking Nutreval tomorrow, though
     
  13. ebethc

    ebethc Senior Member

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    @ahmo - Okay, but how do I do this? I have read that H1 responds to Zyrtec/Benadryl, but this doesn't work for me. I've read that Zantac alleviates symptoms for H2.. Are there other H's? How do I try to narrow it down to find the culprit?

    Colonics can help sometimes, but, overall, I haven't found them to be helpful (including coffee enemas).

    what's the dose for Royal Jelly? How often?

    I've taken neuro-protek, and haven't noticed a big difference vs quercetin or pycnogenol or mangosteen.. Not worth the money for me personally


    thanks!
     
  14. ebethc

    ebethc Senior Member

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    @ahmo - one more thing... What do you do to take care of your adrenals?

    thanks
     
  15. ahmo

    ahmo Senior Member

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    @ebethc Re searching, I meant something like, "throat irritation + mast cell"; "joint pain + mast cell"...Just to see if this is the path for you to pursue. It might not be...

    I'm taking 1x Paradise royal jelly 500mg 1-2x/day. Some days I don't need any; other days I need AM/PM. I dose according to my symptoms and use self-testing.

    Your non-response to colonics, coffee enemas might indicate that whatever's going on, it's not resulting from adrenal stress. There's a strong relationship betw adrenals and mast cells. Beyond this, I'm out of bright ideas.:whistle::balloons:

    And what do I do for adrenals? Primarily coffee enemas. I haven't found a better way to de-stress them.
     
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  16. ahmo

    ahmo Senior Member

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    ADD...well, one more thing in my experience, though maybe very tangential. I'm linking a questionnaire for pyroluria. I had a progression of sinusitis to bronchitis to asthma many years ago. Turns out that's not unusual w/ pyroluria, as are joint pains....

    http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria
     
    ebethc likes this.
  17. wootah88

    wootah88

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    @ebethc when you say irritation what exactly are the sensations? Itchy, scratchy, having to constantly clear your throat?

    Here is a comprehensive guide to mast cell disorders published recently by one of the leading researchers, Dr. Afrin. You'll have to scroll to the bottom to download the chapter in his book:

    https://www.novapublishers.com/catalog/product_info.php?products_id=42603

    He has also given talks about how patients can present with completely different symptoms, so just because your symptoms aren't "classic" MCAS does not rule out a mast cell problem.

    Here are some of his slides in a presentation talking about all the ridiculous ways people present with MCAS.

    http://www.mastocytosis.ca/2011 MSC Medical Lecture with Slides.pdf

    I'm not by any means suggesting you have it, but it is something to consider.
     
    ebethc likes this.
  18. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    There's an infection that can cause respiratory problems associated to Molds, Aspergillus.

    If people have undiagnosed immune suppression (arguably what ME CFS incorporates) it wouldn't be beyond possibility for patients to pick up relatively rare conditions, such as Aspergillus.

    Some CFS related reading:

    http://www.selbsthilfe-baklayan.com/Aspergillus-ChronicFatigue.htm
    http://cfspatientadvocate.blogspot.co.uk/2014/03/dr-joseph-brewer-and-mycotoxins-update.html
    http://forums.phoenixrising.me/inde...spergillus-niger-niger-candida-albicans.8237/
    http://cfswarrior.blogspot.co.uk/2008/11/mold-report.html
     
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  19. ebethc

    ebethc Senior Member

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    @Research 1st - I tested negative for mold allergies ..(both blood & scratch). I know that allergy testing is not perfect, but I was very surprised that the tests came back negative.. My allergist said that any particulate matter (mold spores, pollen, dust, pollution..) irritate my sinuses/throat/lungs... Since it's not an allergy, per se, allergy meds don't work. I'll read through the info anyway, so thanks for sending it along!
     

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