NTM Northwest Support

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

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#1 2017-11-02 16:18:19

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 191

An overview of group support

(from Cynthia Flora, current Chair)

We are all different in severity, symptoms, and reactions. Some of us have mild cases easily managed that progress very slowly; others are more aggressive and complex. We harbor different NTM bugs and opportunistic pathogens, some drug resistant, some not.  Many of us have very productive, persistent coughing, others rarely cough. Some cough up blood. Some get very sick repeatedly every flu season, others are fine as long as they get flu shots and wash hands often.

We experience different efficacy to drugs and different side effects. Some of us also struggle with an auto immune disease, many have GERD, some osteoporosis, some an asthmatic component. Any fool can see why many of us will suffer from depression. Roughly two thirds of us will also develop bronchiectasis, although it is not clear which comes first. Indeed very little is black and white with this illness. The more they study it, the more the 'knowns" shift.

They are still sure NTM bugs are present in the soil and water. Our municipal water systems select for MAC bugs due to their relative high resistance to chlorine. They propogate rapidly on biofilms. NTM bugs have varying degrees of toxicity and growth patterns.  They seem to be able to mutate rather adeptly. For decades lttile research has been conducted and hence little progress made regarding treatment. The past few years have seen a spurt of research, some funded by big pharma, much by the government as a result of the Affordable Care Act.  There are several new drugs formulations nearing final FDA approval.

Microbiologists discover new NTM species regularly. Clinicians and researchers do not agree about how we get infected. Most agree we should avoid  situations that surround our head with pressurized, aerosolized water...think hot tubs, power washers. Where to draw the line is not clear.  Is it dangerous to lean into the asparagus in the produce department as water shoots out in a fine mist?  Is drinking water from a refrigerator door or ice from a frig ice maker, both of which travel in thin water lines that encourage bacterial growth also dangerous?
Many doctors think reflux from GERD and aspiration play a role in re-infection and recommend sleeping at an angle and avoiding activities that encourage aspiration.

Unfortunately no strong studies have been done around sources of infection and re-infection so it becomes a weary dance of fear and avoidance...what is worth worrying over? What should we really avoid?  For many years it was thought we were getting infected via our shower heads.  Now they are not sure. Studies have shown the presence of NTM in our shower heads, but cannot correlate that to our infections or reimergence of infection.

(I don't so much look for answers anymore as look for clues)

As so little is known, we as a group seek to question all aspects of our care, furthering wherever possible improvement in treatment and research.  We strive to support one another by sharing experiences, compassion, tips and encouragement.. We explore the possible benefits of adjunctive therapies and changes in life style to maximize our bodies ability to stay well and to heal. We look for laughter and understanding.

In the early days of my diagnosis when I was realizing with a grimace all the new constraints on my future, my first pulmonary doc gave me a sage piece of advice: if there is something you really love to do...find a way to keep doing it. Smiling and joy boosts your immune system.

We seek to help one another live our best lives.

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