NTM Northwest Support

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

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#1 2016-06-19 14:43:38

Registered: 2016-05-30
Posts: 37

Seattle NTM Meeting Dr. Horan August 15, 2015

Dr. Horan with Virginia Mason Hospital in Seattle trained in USA but immediately worked with TB patients in Angola.  Her presentation summarized much of the research on NTM, and was most interesting. 

Commonalities in NTM patients :   immune-suppressed, GERD, lower BMI, coughing habit, pectus excavatum or caved in sternum (11% NTM pts have versus .1% of general population), scoliosis (51 % versus 1.9%), not able to store fat as it should be, hypermobile joints (like Abe Lincoln), Cystic Fibrosis gene mutation (11% of NTM pts. have this). and of course taller, skinnier women.

GERD and NTM:  ANY lung disease has higher incidence of GERD.  64% of NTM pts. have GERD. Acid suppression meds. reduce stomach acid which prevents NTM bugs from being killed (so don’t swallow phlegm).  Thus if you aspirate, the NTM bugs can reinfect your lungs. The increased coughing increases GERD because acid pops up the esophagus.

Why does NTM happen?    NIH and other studies can’t show why this immune system defect happens.  IF you get “cured” of NTM, it is likely you will just get it back again because of all these factors. Moist areas of the world do NOT always have higher incidence  e.g. study in dry areas such as Australia (? I think).  Hawaii has the highest incidence of NTM.  With age, bronchiectasis “happens anyway” so not necessarily always related to NTM bug itself.

Coughing:  Habitual suppression of cough to be “ladylike” is a bad thing.  “Better out than in”, use Kleenex to rid self of sputum, do not swallow phlegm since your lower acid in stomach won’t kill the bug.

Shower:    She talked a lot about “biofilms”, the slime that happens on a moist surface such as shower heads.  Biofilms are “bacterial condos” for NTM bugs, and others like pseudamonas (spelling wrong?).  The good news:  bugs do not disperse but stay within the biofilms.  The bad news:  studies show that when we clean a surface or shower head with bleach or other disinfectants, we are making the problem WORSE by wiping out the “good bugs”.  It will not touch the MAC or bad bacteria and may make them stronger.  20% of shower heads have NTM bugs, but you can do this to lower your risk:   1. use metal shower heads (less biofilm build up)  2.  keep water temp. at 130 degrees (if no children or cognitively impaired at home),  3. DON”T USE BLEACH.   4.  Bath and showers have the same risk.  5. AVOID hot tubs and indoor fountains.,  Chlorine makes it worse, droplets in the steam have more NTM bugs and your face is right there if you are in a hot tub!

Statistics:   of NTM patients, 78% have cough, 69 % have increased phlegm, 83% fatigue, 54 % night sweats, 65% SOB - shortness of breath.

Non-antibiotic treatment:   usual bronchiectasis care such as flutter valve, purcussive vest, exercise, identify and treat other bacteria such as staph, pseudomonas.  Surgical resection if necessary.  Most important:  “Watchful waiting”

Other tidbits:  It is important to manage inflammation in your life (e.g. dust, toxins,) since that can worsen NTM.  Increased inflammation of any kind increases your risk for stroke, etc.  Will this bug kill me?  “likely not” but incidence of death from NTM is higher if you live in Hawaii, Louisiana are male, white, have COPD too and are over age 55.    NTM is difficult to study since population being studies is so diverse (e.g. liver transplant patients get MAC and are included in studies.)
There is NO proof that NTM pre-disposes us to higher incidence of cancer.  BUT having cancer first before NTM can predispose you to the MAC bug because of swallowing problems, and it’s relationship to GERD and aspiration of the bugs. 

Thank you Cynthia for organizing this most helpful meeting and thanks to Rita for driving all the way from Friday Harbor in our largest rainstorm and lightening storm of the year!!!  (Please correct any of my facts, if you notice errors.)

Nancy in Seattle


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