Participant summary of NTM webinar 9/14 with Dr. Kevin Fennelly

Posted by terryb1 @128128terry11t, Sep 14, 2017

Just finished listening to Webinar “Nontuberculous Mycobacteria-Practical Points” delivered by Dr. Kevin Fennelly of the National Heart, Lung and Blood Institute. They will be emailing a link to this recorded webinar to all participants. I promised that I would report back and wanted to do so immediately. There was only about 15 or so minutes devoted to questions; the rest of the time was a general discussion on NTMs. A few points that were my “take aways”:
All patients have two diseases: the underlying lung disease (structural, damaged airways) and NTM
Rifampin has drug interactions with many drugs, particularly steroid or hormone drugs. Need to check with physician as these drugs may be affected and dosage needs to be adjusted. He mentioned that Estrogen replacement therapy now appears to be safer than originally thought.
Clarithromycin can be diminished by rifampin. Thus, it is important to monitor drug levels.
Good idea to make your own “Flow Charts”– a spreadsheet of blood work, sputum results, lab tests over the months.
Mentioned the new evidence of patients being contaminated who have had open heart surgery and developed disseminated disease
If you use water filter in home, it must be changed as frequently as the manufacturer recommends or you can be amplifying bacteria.
Due to the increase in NTM infections around the world, there will be more in terms of diagnostics and development of new drugs for NTMs.
It may be possible that if one is minimally symptomatic, saline and exercise may be enough and that drugs may not be necessary. That would be something that patient and doctor would have to investigate.
He believes that going to dentist should not be problematic. Patients can discuss with dentist about their concern for biofilm in water.
He states that “most bottled water is someone else’s tap water”. I believe that he stated that it is not necessary to drink boiled water (please wait for recorded webinar to be available to make certain that this is what he said). It is not necessary to take Draconian steps; one need not buy any special water. If filter is used in home, it must be changed frequently as stated before.
If one takes the Big 3 drugs for more than 10 years, he stated that he believes that there is no data to suggest that duration has a toxic effect. He is not aware of long term effects. There may be such effects with amikacin.
With first time MAC treatment, 60-75% will have microbiological “cure”.
If someone becomes infected within a few months of stopping drugs, it is the same infection. If someone develops another infection after many months or years, it is a new infection — not reinfection. I believe that he said that there is no evidence that the bacteria remains dormant and then resurfaces ???Again it must be emphasized that it is important to wait for recording to make certain that I have heard and stated this correctly.
There appears to be more interest in NTMs and this bodes well for new trials of other interventions. Liposomal amikacin is one such example.
Hope that this was somewhat helpful. Terry

Great report Terry! Thank you so much for sharing this.

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@pamelasc1

Terry – you did an excellent job in highlighting all the points.. the one thing that you wrote: ” I believe that he said that there is no evidence that the bacteria remains dormant and then resurfaces ???” was in fact what he said, which I found very interesting, and that if one does begin to cough again, it is more likely another bacteria…. I would conclude that any of us with MAC treated with the 18 month Big 3 still has a good chance of picking up other bacteria,so clearly we have to be vigilant. Pamela

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Best wishes for your knee surgery. Before the nebulizer saline was passed for use here, it showed lots of success in Europe.

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Thanks so much for the info – it means a lot to those of us unable to make it

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Thanks, Terri.

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NTM Info and Research Inc.’s webinar on NTM is now available online. If you go on website (www.ntminfo.org) or call them at 305 667-6461, I believe that they would provide a link. Terry

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Hi all, Here is the link to the webinar with by Kevin Fennelly, MD, MPH of the National, Heart, Lung and Blood Institute (NHLBI) presented on September 14, 2017.

“Nontuberculous Mycobacteria – Practical Points” https://www.thoracic.org/patients/lung-disease-week/2017/nontuberculous-mycobacteria-week/webinar.php

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