The 12th Invest in ME Conference, Part 1
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Sinusitis Misery: Mast Cell Madness???

Discussion in 'Mast Cell Disorders/Mastocytosis' started by ahmo, Sep 23, 2016.

  1. Gingergrrl

    Gingergrrl Senior Member

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    So you only cook it in the pressure cooker for 30 minutes? This could work for me (30 min) as long as I then ate it fresh or froze it. Muffin tins is a great idea. My MCAS is better now so I think I am safe to attempt bone broth again.
     
    ahmo likes this.
  2. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    https://www.amazon.com/USB-Aromatherapy-Essential-Oil-Diffuser/dp/B01C1ZA3Q2/ref=sr_1_1?ie=UTF8&qid=1475198438&sr=8-1&keywords=mini vaporizer oil diffuser#Ask
    @ahmo This isn't the one I have. (I have an old one.) But this unit looks pretty good. However it beeps when it shuts off - I don't like beeping. At least the light can be turned off. Just plug it into the USB port on your computer. USB cable is included. $20. There are more types/brands. :)

    I'm very worried about your adrenals - pain in the kidney area is a very bad sign.

    I hope you have some Dr. Wilson's Adrenal Rebuilder (porcine glandulars processed to remove hormones) and licorice handy. Having that saved my life when I had an adrenal crash and couldn't get to doctor/hospital. :trophy:
    I had to continue taking both for many months afterwords to stay alive. Not something you can just quit.

    Respiratory infections are really rough on adrenals; in fact that is what caused my adrenal crisis. :fire: :eek:

    Unfortunately, the use of licorice and glandulars can skew adrenal test results which may cause problems if wanting corticosteroids. :cautious:

    Here is what I always keep on hand:

    https://www.amazon.com/s/ref=nb_sb_ss_i_4_8?url=search-alias=aps&field-keywords=dr wilsons adrenal rebuilder&sprefix=Dr wilso,aps,332

    https://www.amazon.com/Dr-Wilsons-Adrenal-Rebuilder-Capsules/dp/B00LR3555O/ref=sr_1_4_a_it?ie=UTF8&qid=1475200818&sr=8-4&keywords=dr wilson super adrenal stress formula

    https://www.amazon.com/dp/B000I4C4SY/ref=sr_ph_1_a_it?ie=UTF8&qid=1475200396&sr=sr-1&keywords=licorice root organic

    Iodized Salt - consume lots of salt water!

    http://www.adrenaladvice.com/licorice-adrenal-fatigue.shtml

    In acute adrenal failure (addisonian crisis), the signs and symptoms may also include:
    • Pain in your lower back, abdomen or legs.
    • Severe vomiting and diarrhea, leading to dehydration.
    • Low blood pressure.
    • Loss of consciousness.
    • High potassium (hyperkalemia) and low sodium (hyponatremia)
    https://medlineplus.gov/ency/article/000357.htm

    :hug:
     
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  3. ahmo

    ahmo Senior Member

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    Oh my!!!Thanks for that. I keep thinking that now that I'm treating this as an infection, the next day will see things cleared up. (Like every time I have an excellent day I begin thinking I may have a life again.:rolleyes:)
    Thanks for all the links. I'll get to them tomorrow, when I feel better . Actually, I'll definitely feel better, because I'll be eating.:)

    @Hip I see you've snorted powders directly. I thought about doing that w/ probiotics and serrapeptase, but was too fearful. So I mixed them into my saline solution. you're a very brave soul. I'll be studying your posts more thoroughly. Thx.
     
  4. piccirilli

    piccirilli

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    I was planning on starting a new thread for sinus treatment, but ran across this excellent thread. I have been working on a treatment for sinus infections, because everything mentioned here and elsewhere does not work for me. I've been living with sinus infections for decades and RX is no longer an option. Either I'm RX antibiotic resistant, or biofilms are at work. For the past 2 years I've experimented daily and everything I've tried failed miserably, including huge doses of L Sakei. Believe me I've tried it all both functional and standard medicine. Finally I stumbled on something while revisiting nebulizers for administering antibiotic/antifungal essential oils. The problem is nebulizers clog and can't handle the strong concentration of the needed essential oils. My solution substitutes using a large aroma therapy machine ($30 on Amazon), mixing a powerful concentration of 10 oils, and breathing vapor as close as comfortably possible into my sinuses. Note I do not use this like aroma therapy is normally used. The concentration of oils is far greater (way beyond suggestive aroma levels) and the discharge from the aroma therapy machine is inches away from my nose. I do this for 5-10 minutes a few times a day for acute infections and once/day preventive. Alternatively, you could sleep with it on near your bed, but I find breathing in the mist full strength for shorter period of time is most effective. The longer I use this technique the fewer infections occur and preventive treatment is needed less. I believe it's the only thing cutting through the biofilm and finally giving my sinuses a chance to heal. For reference, test cultures of my sinus revealed staph, strep, and aspergullus. I hope to refine this treatment to perhaps 4 or 5 oils, but for now I'm using the broad spectrum approach.
    In case anyone reading this has horrible sinus infections and want to try something new, here is the recipe. Again this method truly works above all else. I'm putting this here, because I am so thankful for what many of you have provided.

    Aroma therapy machine: https://www.amazon.com/gp/product/B0118QC1BA/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1

    In 8 oz of water add:
    2 droppers of each oil: Oregano, Thyme, Clove Leaf, Eucalyptus, Balsam Fir Needle, Rosemary, Juniper Berry, TeaTree, Peppermint and approx half dropper of Citricidal Grape seed.

    Yes indeed, this is a very concentrated solution. You can calibrate what works best for you by either cutting back on the concentration, or by moving your face closer or further from the mist output. I find most effective when the mist slightly stings in my sinus, then back off slightly. If you try this, I'd love to hear your feedback.
     
    Last edited: Oct 8, 2016
  5. ahmo

    ahmo Senior Member

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    @piccirilli Thanks for this. Great to hear you found something that works. I'm waiting to receive my mini vaporizer, looks very similar to yours, though it's 100ml instead of 500. Good to know you've been using such high concentrations. Wow, really high concentrations!!! I've mixed some of those oils together to inhale, which hasn't done much good. I'll now add the rest of your selection and up the amount. :thumbsup::hug:
     
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  6. piccirilli

    piccirilli

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    I have also used some of these oils in the past, but had limited success. One of my older posts explains how I orally administered large doses of these oils. This worked for a brief time, then stopped working. But it did prove how the gut has an influencing factor on sinus health. Note: This treatment is specifically for killing off bacterial/fungal infections and prevention of chronic sinus infections. It's not going to improve auto-immunity for rhinosinusitus allergy symptoms.

    In extreme desperation, I have also tried 'injecting' some of these oils via a modified ENT aspirator directly into specific areas of sinus cavities most infected. This also failed, likely due to lack of penetrating all effected cavities, reinfecting everything. And I would not recommend doing this due to the potential hazard. Why, all of the sudden, this method works I don't have a clear answer. I am using more oils.

    Also, the concentration and how it's administered plays a determining role here too. For example, if I let the mist mix with more ambient air and drop on my face while laying in bed, it exponentially looses it's effectiveness. So I move my face closer or further from the mist source until I find that fine line where it begins to sting. This is key. The more my sinus tissue is infected and compromised, the greater it will sting. This can vary daily, so I make corresponding adjustments in either concentration of oil mixture or distance from the source. So everyone will be different here and need to find your own threshold.

    Taking deeper inhalations through sinuses and holding it for a few seconds has an amazing effect of opening up swollen sinus cavities. If completely blocked, I gently allow mist into a blocked side by closing off the other side of nose with a finger.

    Again, I find shorter treatments approximately 5-10 minutes in length and done multiple times per day are more effective vs a long treatment.

    If it burns like hell, or having to force mist into sinuses, you are doing something wrong.
     
    Last edited: Oct 9, 2016
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  7. realturbo

    realturbo Senior Member

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    @piccirilli, I've been using Pine Needle essential oil mixing it 50/50 with baby oil and applying it inside my nose, as well as putting 4-5 drops of the neat oil to the back of my throat. I think this has helped to clear my long-standing sinus congestion. Incidentally, I have recently been having a lot of itching in my ears - I wonder if the buggers causing the infection are being dislodged and are being forced to move to other areas within the sinus cavities...
     
  8. piccirilli

    piccirilli

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    Pine/Balsam needle oil is definitely a good one if you had to limit your selection. However adding others maybe more effective, along with breathing it into sinus as a mist, which will penetrate far deeper than swabbing entrance nasal cavity.
    Also, I highly recommend the book released earlier this year by Leo Galland, called 'The Allergy Solution' . I'm not trying to advertise here, but this book gave me a bunch of new ideas on dealing with allergies and sinus conditions. IMHO, it's the best book ever written on the subject. Leo Galland was one of the early pioneers of gut microbiota back in the 60's when everyone thought he was nuts. Of course we all know better now. He is still doing research and clinical work today and much of his auto-immunity research is presented in this book with practical advice for self help.
     
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  9. ahmo

    ahmo Senior Member

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    @Chocolove Thank you for introducing me to this brilliant bit of technology. For $20 I got a 100ml mini vaporizer. Cool instant vapor. I could get out of bed and have instant vapor.:jaw-drop: With @piccirilli 's selection of oils. I think this + xylitol finally knocked out my sinus problems. What a relief. What a saga.
     
    Chocolove likes this.
  10. Chocolove

    Chocolove Tournament of the Phoenix - Rise Again

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    @ahmo Yeah!!! So glad you are feeling better. :) Sinus infections are notoriously hard to kick. This time of year respiratory illness becomes very common so I always start taking Source Naturals Wellness Formula Herbal Defense Complex in either capsules or horse pills. With vitamins, minerals and herbs it is a good all in one defense. (I have no relationship with this company.)

    I always keep it on hand so that when I am too sick to think, it is there. Better than trying to sort through 30+ bottles of different things...o_O http://www.sourcenaturals.com/products/GP1345/

    https://smile.amazon.com/Source-Nat...8-1&keywords=source naturals wellness formula
     
  11. crackedActor

    crackedActor

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    @ahmo How are you doing now? I've been struggling with sinusitis for the last 30 days, and I'm starting to grow concerned. I've never had any issues before that seemed so likely related to mast cell problems. 30 days ago I was subjected to intense acrylic fumes and have been struggling with fatigue, foggy-headedness, sinus pressure, headache and congestion - no mucus. I'm completing a 7 day doxycycline course and have been religious about sudafed, singulair and xylitol spray. I did self prescribe some old prednisone that I had lying around (20mg for 2 days) a couple weeks into this problem, and I'm hoping I didn't do any damage.
     
    Last edited: Jan 6, 2017
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  12. xrayspex

    xrayspex Senior Member

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    hey Chocolove, I take DGL licorice regularly, should that be of any help? some background---I am pretty sure have a sinus issue because my many teeth starting hurting during certain flares and I know that can tie in. A PT I showed an MRI report of my head to from a few years ago pointed out it said I had fluid in the sinuses and that could account for some of my headaches......I don't tend to have a severely runny nose or history of obvious severe plant allergies like hay fever (altho as I have aged with the CFS and sjogrens I sure react to most foods now and MCS a long time) but an allergist did tell me 17 years ago I have rhinitis (even tho I dont' blow nose a lot unless full on cold or flu, but do have scratchy throat and hoarse voice in morns) and should take flonase (yea that is like crack for me, not good idea when tried, hello mania and hate).......

    I know I tried licorice over course of cfs in the 90s when found out had hypotension per tilt table, but i can't recall effect, swtiched to DGL for GERD
    I used to take salt and even had few saline infusions from cool doc but didnt notice much dif and with my tendency these days to intracranial hypertension I thought maybe should lay off the salt even tho I have really low b/p---do you think salt or licorice could irritate pressure in the head?

    I am intrigued tho by your advice.
     
  13. xrayspex

    xrayspex Senior Member

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    do you get tooth or eye pain with your sinus headaches?
     
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  14. xrayspex

    xrayspex Senior Member

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    my face swelled when I tried saline infusions at a clinic a couple times and didnt increase my energy I dont think, even tho diagnosed with neurally mediated hypotension per tilttable and b/p always low.....too bad,a few cFS friends of mine got them religiously and loved the benefits

    also I have been doing acupuncture too lately and sometimes I think it is very much helping a flare I am in but every once in the while i think its adverse---you mentioned you thought it irritated things recently with congestion--how so? I did tell my acupuncturist to lay off on too many needles in neck and allow none in ear (had bad experience with in the ear) because I think if too many fluids like spinal or cranial fluid flow up to head it worsens headaches for me because I have cervical stenosis---a cranial sacral therapist and I figured that out 15 yr ago--I cannot get cranial sacral work because I get headache and neck pain thru the roof and it can last a month

    I had a crown pop off with chewy candy in DEc and ever since they put it back on have had symptoms suspicious in part to sinus pressure in head, that tooth never bugged me before but now its hot cold sensitive, getting pressure sensitive and a bunch of other teeth are acting up and getting headaches from lying down which i think increases pressure. I am going to get teeth checked to see dentally what is going on but chocolove or others could something weird have happened when the crown was off (just a day) and they put it back on could air have gotten pushed into my sinuses or the glue they used irritate them, cant figure out why it unleasehed bad flares since then, was in relatively stable phase but now chronic pain problem often acute again etc

    Ahmo do you get any issues like that with dental work? thanks for your thread because this was on my mind to explore here
     
    Last edited: Jan 27, 2017
  15. xrayspex

    xrayspex Senior Member

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    that is a good one to fight off cold/flu I noticed, also tried zinc when I tried this over this winter and the zinc seemed to help CFS and AI issues in general so I kept taking it, but since been in an ongoing flare I can't tell anymore if zinc still good idea or if overplayed my hand..been using hylands homeopathic cold zinc
     
    Last edited: Jan 27, 2017
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  16. realturbo

    realturbo Senior Member

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  17. ahmo

    ahmo Senior Member

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    I can't recall it at this point. But It was clearly not helping, and I wondered if it was somehow too stimulating? or something. Sorry, can't really answer.

    I haven't had problems following dental work. And I had quite a lot over the past couple years. Very fortunate. Sounds like what you've got is horrible.

    This was one of the things I tried during this episode, with no obvious effects. For me, the serrapeptase and xylitol seemed useful. Now having xylitol, which you can buy in bulk and make up spray easily, I wouldn't bother w/ serrapeptase. I now use xylitol/saline spray AM/PM, keeps my nostrils moist. No more sinus problems. whew!

    @crackedActor The problem resolved for me. I think it was the xylitol. Once I started it, things moved into obvious sinus infection, and then cleared. I now think it wasn't primarily a mast cell issue, but maybe the infection provoked mast cell flare.
     
  18. ebethc

    ebethc Senior Member

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    Great link! I'm going to try the kimchi trick

    I have lots of congestion & swelling, but NO make me feel better, more focused.... why do u think that is ( w regard to blood flow & vasoconstriction)
     
  19. Gondwanaland

    Gondwanaland Senior Member

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    What worked for me: histamine degrading probiotics 1 hour before breakfast + estrogen replacement (I tested extremely low for it)
    A couple of years ago I tried histamine degrading probx but since I was taking them at bedtime I had a poor outcome (couldn't get out of bed in the morning)
    sorry, I don't know the answer to your question. If I skip my morning coffee, I have a foggy, low-energy morning (caffeine is a vasoconstrictor).
     
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  20. perchance dreamer

    perchance dreamer Senior Member

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    I know that xylitol nasal sprays such as Xclear are supposed to be good for biofilm disruption, thus thwarting bacterial infections, but could xylitol encourage fungal infections since it's a sugar alcohol?

    I've tried other nebulizing NAC and glutathione to disrupt biofilm, but they both irritate my nose and make it stuffier.
     
    ebethc likes this.

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