NTM Northwest Support

A Pacific Northwest support group for sufferers of Nontuberculous Mycobacterial (NTM) Infections and Bronchiectasis

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#1 2018-03-17 12:46:46

Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 192

Member Supplement List 3/15/2018

(Note below from Cynthia regarding VitD3)

Name    Supplement     Dose/Day     Reason
Laura     Mega spore Probiotics     2/day     Intestional Flora
    SAM-E     1 mg/day     Energy
    Milk Thistle     150 mg/day     Liver Function
    5-MTHF 10mg     10 mg/day     MTHFR - Lack Enzyme to process folate (for Healing)
    Magnesium     480/mg/day     Intestional Processing and Sleep
    Super K     2600 mcg/day     Energy
    Vitamin D3     5,000 IU/day     Bone Health and Healing (many other benefits)
        Allicin Max (Garlic)     180/mg 2/day     Intestional Flora
    Green Tea     1 cup/day     Antioxidants
    N-A-C     1000mg/day     Liver and Lung Function
    Co Q 10     100 mg/day     Free Radical Scavenger
    Alpha Lipoic Acid     250/mg/day     Free Radical Scavenger
    Methylcobalamin (Methyl B12)     1000mg/day     Energy
Jude     Multiple vitamin       
    Thorne Meriva-SF (curcumin phystosome)     500 mg / 2/day     anti-inflammatory
Lottie    Carlson Cod Liver Oil     1100 mg. Omega 3s  1 tsp     NRD recommendation anti-inflammatory and therapuetic
    Garden of Life: Woman's multi 40+     2 per day     keep up general health
    Garden of Life: Vutanub Cide Raw C     250 mg 2 x/day     keep up general health
    Natren: Megadophilus, Bifido Factor and Digestive Lac.     1/4 tsp of each 1x/day     Homeopathic practitioner recommended 1/2 tsp per day    Rebuild digestive flora
    Natural Factors: Vit. D3      4,000 units divided 2x/day     HP recommended 10,000 IU to fight upper respiratory infections
Nancy    Pro-DHA fish oil     400 mg  Omega 3s/day     general health and mood elevator; recommendation by RD
    Vit. D3      2,000 IU daily in liquid form     general health
    Meriva (curcumin)     250 mg. / day     Naturopath recommended for reducing  general inflammation
    Similase for Sensitive Stomach (amylase, lipase, cellulase)     1 capsule/day     enzymes to help digestion and reduce gastic reflux
    Basic Nutrient by Thorne     1 capsule/day     RD recommended.  General health plus calcium levels
    Beta Glucan     500 mg/day     immune support       Naturopath recommendation
    Turkey Tail Immune Support     1 mls/day     anti-cancer immune support
    NAC     500 mg/day     reduce phlegm and congestion in lungs - Naturopath recommendation
    Probiotics     various kinds     general gut health
Cynthia    NAC     600 mg/day     might help lower rate of exacerbations
    SuperLysine by Quantum Health     1 dropper/day     boost immune system (lysine and shitaake mushroom)
    SuperLysine+ lip balm     as needed     controls canker sores and dryness (because of Sjogrens syndropme)
    BoneStrength by New Chapter     3 slim tabs/day     helps maintain bone density
    Vit. D3      2000 IU 5x/week     need to maintain level of 40-50,000 in blood (test annually)
    Probiotics     various forms     change brands, use mostly refrigerated, use kombucha occasionally
    Respiratory Support and Defense by Nature's Secret        sometimes switch this for NAC just for variety
    Fresh ginger tea USE WHEN SICK     several times a day     Improve blood circulation, breathing vapors can help lung congestion,
    1/8 t cayenne powder in 1/4 c warm water     1X IF COUGH BLOOD     to stop hemoptysis (blood in sputum)hot tip from a CF
         patient to Cynthia..said it worked great. No scientific support for this...might want to ask pulmonologist before doing long term
Dana    NAC       
    Mucinex Tabs     2 x /day

from Cynthia...I am not a doctor, but I want to note there is some controversy over how much Vit D3 is too much. (google it and you will see) The few western NTM docs that have weighed in seem to want blood levels at 40-50,000. I was able to get there taking about 2500-3000 IU daily.  When I went up to 4,000-5,000 daily I wound up at 90,000 which my GP thought too high, especially since I did not have an active NTM infection at the time. Seems to be some thinking that it does play a role in helping the body fight lung infection. Don't forget to add ALL the Vit D3 you are consuming.  It was in both my multi-vitamin and calcium supplements.  And if you are getting lots of sunshine, count that in too. The more skin the better. It is after all the best source.  Too much Vit D3 and you can develop a bad condition called hypercalcemia. Naturopaths often want you taking up to 10,000 IU daily. It would be great to get some info backing up that target. When I get an exacerbation that seems infection based I take 10,000 three times a day, but then drop back to 2,000-3,000 daily when feeling good again.


#2 2020-05-31 16:43:35

Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 192

Re: Member Supplement List 3/15/2018

UPDATE MAY 2020.  I had a telehealth mtg with my pulmo Dr. Horan and I mentioned my previous GP thought insurance would not cover the cost of blood test for Vit D level when I did a regular blood draw for annual wellness.  She thought it was not warranted with NTM or bronchiectasis.  Dr Horan said they should as it is important in regulating internal inflammation. So be sure to push for this from your provider.  Be an advocate for your best care. If your GP pushes back...go over their head and get your pulmo doc to request it.


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