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 13:58:42

Nancyr
Administrator
Registered: 2016-05-30
Posts: 37

Palm Springs NTM meeting Feb. 20, 2012

PALM SPRING, CA AREA NTM SUPPORT GROUP

MEETING NOTES, FEB. 20, 2013





A NEW GROUP

A group of seven of us assembled for the first NTM get- together. For years, many of us were speaking on line and by phone, but seeing each other face-to-face added an extra dimension. We started the meeting with a difficult task for some; introducing ourselves outside of NTM realm…discussing our family, hobbies and interests. So many have defined themselves by their condition. We must remember we are taking steps to managing it so that we can return to our “normal” lives.

DRYNESS

Two in the group have been diagnosed with Sjogren’s syndrome, dryness of the body including eyes, mouth and joints. It is because of this that one of the gals may have difficulty swallowing. Blood tests and genetic testing are used to diagnose this condition. Some of her suggested remedies which can be applicable  to some of us with similar symptoms  is the use of Biotene (a non alcoholic mouthwash …also comes in a spray) and eye drops. Another group member finds that pouring dry rice into a sock and heating in the microwave as hot as one can tolerate, then placing over the closed eyes is helpful. Apparently, this moves the sub surface oil glands and opens the sinuses. An eye scrub was also helpful. She finds relief from stress with deep breathing, and soft relaxing music.

WE NEED TO BE OUR OWN ADVOCATES

A case in point was when one of our members entered the hospital for an unrelated NTM issue. She mentioned to the doctor on the case that she must have her NTM antibiotics, which had not prescribed, and he told her it wasn’t important and he wasn’t going to prescribe it.  It was obvious to her that he didn’t understand the importance of the meds. Rather than accepting this, she phoned her pulmonary  doctor who had been managing her NTM and handed her cell phone directly to the hospital doc. After that conversation, her problem was solved.  She also suggested that with all the free time we have when lying in a hospital bed, we should  document everything. Not only will it be time filler, but also it is a good record to look back on, if needed. Way to go, Linda!!!

GERD

The role of acid reflex (GERD, gastro esophageal reflux disease) was discussed. Many in the group deal with it. The opening of the flap can result in matter refluxing into the lungs, which can result in the growth of the bacteria . Although Nexium, Prevacid and the like can ease discomfort by reducing the acid, it can also promote bacterial growth in our lungs. Our type of bacteria enjoys the reduced acidic environment. For those who have GERD, it is strongly suggested sleeping in an inclined position. If you do not own a motorized bed, pillows can be used to prop the upper body. In addition, it is advised to place a pillow under the knees to prevent your body from slipping downward.

The dietary recommendation is to reduce or refrain completely from the consumption of foods that may add to acidity, such as citrus fruits, chocolate, tomatoes, alcohol and carbonated beverages.  One member suggested adding cucumber to water for variety, producing a clean, crisp taste.

REDUCING EXPOSURE TO BACTERIA

The subject of bacteria in the water was discussed.  It was mentioned that water filters (Brita, also those in refrigerators) could be a huge source of bacteria collection. Some people drink bottled water rather than tap water, but exactly what it contains is unknown. When visiting the dentist, be sure to ask if the water and air going through the tubes placed in your mouth are cleaned by an ultra violet light system. Otherwise, they, too, can be a source of bacteria. Also beware of pedicures. Ask the operator to keep the jets in the footbath off. We do not know what is in the pipes leading to the footbath.

DEALING WITH FLARE UPS

A flare can be an exacerbation of the NTM or a secondary infection in addition to the NTM. In either case, a patient becomes more symptomatic. For the “uncommon” (in our case) cold, one of our members limits her exposure to other people for 6 weeks after the flare for fear of becoming re-infected. The last time, she went out after a much shorter period of time, and became ill again. . I am not suggesting that 6 weeks should be the specific benchmark. We all deal with flares depending on how our own bodies recover, so it is important to pay attention and be aware.

STRENGTHENING THE IMMUNE SYSTEM

Maintaining the strength of our immune system is important to all of us. When taking strong  antibiotics, as many of us do, it is suggested to take a probiotic. One in our group has been undergoing antibiotic infusions. She found a product that has prevented gastrointestinal side effects, something she experienced in the past using another probiotics when on a lesser dosage of antibiotics. The product is Ultimate Flora Critical Care, 50 billion organisms . It is delayed released and has 10 different probiotic elements (dairy & gluten free). Be sure to ask your physician is this is right for you.

Some nutritional supplements and herbs can interfere with prescription meds. It is important to check with your physician before taking any.

TREATMENT OF NTM

One of the members in the group sees a physician who doesn’t take cultures. She is given CT scans and only treated when symptomatic. Many of us were dismayed. According to the latest edition of Insight (can be downloaded from www.ntminfo.org ). NTM is diagnosed and followed by sputum cultures, CT scans and medical history information. A sputum culture can detect the bacteria, degree of involvement and upon sensitivity testing, which meds might kill your bugs. With this information, one may be pro-active in taking steps to hold back progression.


KEEPING TRACK OF YOUR MEDICATIONS

(Submitted after the meeting)

One of our members says she carries a small piece of paper listing all meds/strength/dosage, supplements/vitamins, medical conditions, allergies, surgeries, doctors’ names & contact information including the phone and fax info, and emergency contact information for family. It saves so much time when asked to fill out forms in doctor’s offices. She suggests you ask them to photo copy and place in your file.  (If anyone suffers from the shakes like she does, filling out forms is difficult, so this makes things easier.)




NTM PATIENT CONFERENCE

May 17, 2013, Philadelphia area
Sponsored by NTMir
Information and Sign Up on www.ntminfo.org



Debbie Breslawsky, 2/24/2013

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