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terryb1
@128128terry11t

Posts: 178
Joined: Jan 07, 2017

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

Posted by @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

REPLY

Thanks Bunches Terry – Very Interesting – I will not share with others til you get the hard copy.

Thank you Terry for writing these notes while the webinar was still fresh in your mind.
If anyone else watched the webinar, please add your key take-aways here. What did you learn?

Terry11t…thank you so much…very helpful tdrell

Terry, On the points you weren’t sure about, I heard the same as you. It seems there are a few things that are contradictory to what we have been told in the past, but I believe those are conversations we need to have with our doctors. I’m encouraged to know that there is more interest in research now. I did take photos of some of the slides. Not sure how many I can post at once so I’ll divide them up. These aren’t all of them, just a few I wanted for reference.

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One more to go!

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Sorry. Looks like it duplicated some that I posted. I didn’t know we could post media on here! It was a good webinar. Not a lot of new information, but every little bit helps! Linda M

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@barbie46

Thanks Bunches Terry – Very Interesting – I will not share with others til you get the hard copy.

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Please feel free to share. Don't know what you mean by hard copy. If I get a link to the recorded Webinar, will post. Terry

Terry Bordan

@lindam272

One more to go!

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What is the "one more to go"?

Terry Bordan

@lindam272

Sorry. Looks like it duplicated some that I posted. I didn’t know we could post media on here! It was a good webinar. Not a lot of new information, but every little bit helps! Linda M

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@128128terry11t – I had one more slide to post; however, when I posted it, I also re-posted the 4 before it. First time using the media button and late night so mistake made. I hope the information proves beneficial. Linda M

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

@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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Terry and Lindam -thanks to both of you for all the information about the MAC webinar – the charts were helpful and interesting. It is interesting that there is no evidence that the bacteria lays dormant but that is what most of us have been told. I took the Big 3 for a year and thought I still had it but a bronchoscopy showed I did not but did have another bacteria. After several people talked about the horrible sweating, I really remembered that and then realized it had stopped. Whenever we have a weak immune system from an exacerbation and/or a lot of prednisone, we are much more prone to get other things. I was first diagnosed with asthma almost 25 years ago and have taken advair 50/500 for many years after other inhalers. One doctor thought It was always COPD and not asthma. My current pulmonary doctor said it is bronchiectasis and that I have probably had it for many years. My lung capacity is in the low 40’s. I was coughing up crude and coughing all day until I started the 7% saline about a year ago. I have tried other inhalers that have not helped and was on 5 mg. of prednisone daily for a few months which did not seem to help either so I stopped. My doctor had also suggested a low dose of daily antibiotic which I said I did not want to do. The antibiotics just kill the good bacteria in your gut and mess you up. I have taken probiotics for many years which I believe help me. I get short of breath easily and have been on two liters of oxygen at night and when I exercise for two years now. I am having a knee replaced next week. It was supposed to have been done four years ago when I first got MAC and was on the Big 3 so my orthopedic doctor would not do the surgery. Since using the 7& saline I have been better and my pulmonary doctor and heart doctor (a-fib) said I could have the surgery. I just pray my lungs do okay. Well I’ve gone on long enough for now.

@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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Barbie, Glad the information was helpful even though confusing. There were a few points in the conference that seemed contradictory to what we’ve been told or thought we understood, but that just goes back to how much isn’t known about this disease. I wish you good luck with your knee replacement surgery. Linda M

@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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Wishing you a speedy, full, and uneventful recovery. Terry

@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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A big thank you to Linda and Terry!

Thank you! Verifies pretty much how I’ve been informed. Very good information.

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