NTM Northwest Support

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

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#1 2016-07-27 15:05:31

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 177

New York Metro NTM Meeting JULY 20, 2016

NOTES FROM THE NY METRO AREA NTM SUPPORT GROUP
MEETING OF JULY 20, 2016

GUEST SPEAKER

We were fortunate to have Elisha Malanga, Associate Executive Director of Research with the COPD Foundation who gave us an overview of the ongoing collaboration between the COPD Foundation and NTMir. Recently, the new BronchandNTM360 social site was launched. BronchandNTM360social is a global online community for individuals affected by Bronchiectasis and/or Nontuberculous Mycobacteria (NTM) lung disease-two of the most common forms of which are Mycobacterium Avium Complex (MAC) and Mycobacterium Abscessus.

www.BronchandNTM360social.org

Highlights of Elisha’s talk

The site reflects the voice of the patient. Patients, caregivers and medical professionals can find it helpful. It includes comments from patients…their challenges, what it’s like to live with NTM, etc.  It also contains pertinent information for patients. The site is a good one to share with your physician. It can be accessed by computer and will be mobile friendly for devices in the future.

The site is funded by government, pharmaceutical companies, and some not-for-profits as well as by private donations. These funds are “unrestricted” meaning they are given without any conditions attached. Our friends at Insmed who are conducting the liposomal Amikacin trials are part of this collaboration. For their trial, they are looking for more patients with MAC. Patients with m. abscessus do not fit their criteria. Information for all trials is listed on this site.

The site is manned by one full time person and also monitored by patients and caregivers who were given some training by Dr. Charles Daley, Chief of Infectious Diseases at National Jewish Health.

If you register your interest in clinical trials, you will be asked some questions, then would be contacted directly if you meet the trial’s specific criteria. There exist trials for bronchiectasis in 16 countries, of which 80 are in the US and 6 in the New York area.

The COPD Foundation has a phone number to call for information, which is listed on their site. 1-866-316-COPD.
A note about sites containing community discussions. Keep in mind that some information provided by non- medical people can be misleading, incorrect or even scary. Much of it may not ever pertain to you. If you are concerned about a posting, or if you have any questions, Betsy and I would be happy to clarify. Debbie: breslaw1@gmail.com , Betsy:  eglaeser@nyc.rr.com

PATIENT ISSUES

There was a question whether rheumatoid arthritis had any effects on NTM or vice versa. Can the medications for one impact the other? This is a question to ask your doctor or pharmacist. In our years of dealing with NTM patients, we have not encountered any specific connection.

How do we know where NTM came from?

National Jewish is conducting genetic research to study which mutations may be associated with NTM, and how to turn those mutations off (and maybe some others, on) to treat our condition.  Some in the group mentioned that turning down the temperature of our water heaters, a suggestion made many years ago to conserve energy, might be directly related. The supposition is that lower water temperatures do not kill the NTM in water, so our exposure could be greater. An NTM pulmonary specialist in NY mentioned he is finding more cases in younger patients with no bronchiectasis.

Satisfaction with ones physician (or not)

One of our new members has been dissatisfied with her treating physician. She has not been doing well for many months and feels her doctor has done nothing for her. She was encouraged to find another doctor, and the recommendations by our group were helpful. We provided her with a list of questions to ask her doctor.

Treatment considerations

Another of our new members has had a persistent cough for 10 years. Many tests were done, but nothing was found. (Sound familiar?) Finally her present doctor made the correct diagnosis of MAI & bronchiectasis. She has been on a GERD diet and found that avoiding those certain foods has helped her cough. She is concerned about using a bronchodilator containing steroids, so she has been using Spiriva, a non steroidal which has been effective for her in opening her airwaves. Decisions as to what to use should be left to your doctor. It will depend on a number of factors such as the severity of your case, the philosophy of your doc as well as what else may be going on with your health. A suggestion was made to treat GERD other than using a PPI (protein pump inhibitor which reduces acid and can proliferate the growth of the NTM bugs). The medication suggested is Dexilant. After some research, it turns out Dexilant is, in fact, a PPI.

Recommended Reading for Treating GERD

Chronic Cough Enigma, by Jamie Koufman

Dropping Acid, by Jamie Koufman

Actions to prevent sickness as a result of traveling by plane

Some of our members find themselves becoming ill and developing exacerbations after being exposed to the re-circulated air and germs on an airplane.  Here are some of the precautions taken to prevent flare- ups.

Wear a mask. The N-95 is the most effective for blocking, but it can be very hot and uncomfortable to wear. Try other types with the highest rating (smallest openings) that you can tolerate.  Heavy dose of Vitamin C prior to boarding is helpful for some of our members. Products such as Airborne or Emergen-C are available over-the-counter.

Carry antibacterial wipes. Use them on seatbelts, tray tables, and armrests and in bathrooms and on doorknobs before use.  Use hand sanitizer often, when soap or wipes are not available.

Typical Characteristics of NTM Patients
(These hold true for most patients, but not all.)

Thin Caucasian woman of European dissent
High palate
Flexible joints
Mild scoliosis
Abnormal spine
Protruded sternum
Mitro- valve prolapse

Patient Profile

It has been observed that there is a greater percentage of men in the Palm Springs, CA group than in NY. Some of the researchers who have broken out the demographics seem to think that because of the wide spread agriculture and landscaping in southern CA, there are many men who hold such jobs and are greatly exposed to soil and water. For workers with compromised lungs, this exposure can be problematic.

NTMIR Info

The Patient Voice
Published by NTMir




http://www.ntminfo.org/top-news/article … ient-voice

Geographic Diversity of NTM Species Among Infected Populations in the United States
http://www.ntminfo.org/images/media/New … poster.pdf


Next Meeting: Wednesday, Sept. 7, 2-4 pm
St. James Episcopal Church Parish House
Madison Avenue, Corner E 71 St.

Submitted by Debbie Breslawsky, 7/27/2016

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