Help with MAC lung disease treatment

HI. I'm a 66 yr old with MAC, Bronchiectasis and Congestive Heart Failure. (from one of the chemo drugs used to treat my breast cancer 5 years ago). So when it came to deciding whether to treat my MAC, discovered 2 years ago, I sort of freaked out thinking about taking more meds with some bad side effects. I had gut problems from just taking a 5 day pack of Azithromycin in the past. Because I live on a small island in Hawaii, and wanted to get the best consultation I could, I flew to National Jewish Health in Denver. They are so comprehensive and actually reassuring. Possibly the best advice they gave was to take a probiotic Jarro-dophilus, twice a day to offset any gastrointestinal problems. It really works. You can get it at Whole Foods or online from The Vitamin Shop. The great thing about it is that it doens't need to be refrigerated. I've been on Ethambutol, Azithromycin and Rifabutin for 2 years now. Going off next month. I stayed on a little longer than normal because I have no sputum and didn't want a bronch with my CHF. The last sputum I had (4 mos ago) was negative for MAC. While on the drugs I had my eyes checked every 2 months and labs every month for liver or kidney damage. I feel that I owe everything to this silly little pro-biotic that has managed to keep me as normal as possible and yeast infection free during the entire treatment time. Hope this helps anyone out there having a hard time tolerating the MAC meds.

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So much about Probiotics has me wondering if eating yogurt works the same? My husband will be starting a regimen of antibiotics tomorrow for a NTM infection that developed in his lungs after being diagnosed with PF in May 2010. Is eating yogurt not enough?

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A good video to watch.
1. http://today.msnbc.msn.com/id/26184891/vp/32874003#32874003

2. http://www.homedepot.com/h_d1/N-5yc1v/R-100372128/h_d2/ProductDisplay?langI d=-1&storeId=10051&catalogId=10053 Read reviews. Have these on both the showers.

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Dan active is a very small bottled drink that has a lot of probiotics in it. I drink one a day along with the other probiotic I am taking. It comes in an 8 pack and taste very good.

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Thanks so much for the information on the shower head bacteria. I will forward it to our family & friends, so that they can better understand what may have caused my husband's NTM. He started taking 3 antibiotics yesterday. I am praying for all those going through this. Thanks again for that video.

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Laureno
Don't forget to look at the link with the shower filter. The pulmonologist I used to see told me about this one and said, never to open my mouth in the shower because the toxic steam enters the lungs. The filters are great, have them on both of my showers. I don't think Home Depot has this one in the stores. It has to be ordered on line. Read the reviews.
For a while I was taking baths but kept having UTI's. The water is so bad in our country. America needs to find some solutions to our water problems. NJH felt I got the disease from the shower, breathing the vapors which carry contamanents. I was told only 4000 cases a year are reported however, there are that many if not more undiagnosed, especially people who have chronic bronchitis. They need to be tested for it.
http://www.homedepot.com/h_d1/N-5yc1v/R-100372128/h_d2/ProductDisplay?langI d=-1&storeId=10051&catalogId=10053

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The probiotic do help a lot if a person is taking the antibiotics. They rob you of your good bacteria and probiotics replaces. I ordered some from Vita Cost I had read on another board but only took them for a few days because it said they were stabalized and didn't need to be refrigerated. The professor of pulmonology told me to only take the ones that have to be refrigerated so any health food store has them and some supermarket pharmacies have them refrigerated. I take them even though I don't take the antibiotics because they do help to boost the immune system.

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Hi everyone out there with MAC and taking your antibiotics faithfully. I can offer some good news...and lots of hope.....I just got the results from my second and last sputum tested for MAC and it too was negative. This was after two years on meds. I stayed on them a little longer because it was impossible to get up any sputum and they didn't want to do a bronchoscopy because I have severe heart failure. (not from MAC, from one of the chemo drugs a few years ago). That's the hope I'd like to share with you........ to keep on with your meds as best you can for good results. I see all the posts about pro-biotics and they worked for me to keep my stomach from acting up.
I hesitate to add some reality to this post, but that's what we're all about on this site.........while the MAC is gone, unfortunately they have confirmed M.abscessus in each of the two sputum samples. Also the CT shows new nodules growing. So, here we go again, new meds and probably back to National Jewish to get started on treatment. This is not the common course of events so just focus on the fact that the meds do work against MAC and hopefully others will work against M.abscessus. I think this is a wonderful site and thank everyone for sharing their stories and suggestions for positive outcomes. And remember to let your friends and families know that the shower head problems only affect people with lung conditions, (like MAC/NTMs, COPD, CF, etc) or are immune compromised. The average healthy person should be unaffected. Yup, I guess we're pretty special in our own way.....

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Hello,
So glad that I have found this site. I have been diagnosed with MAC/Bronchieatasis. Going to see my Infectious Disease Doctor on Tuesday for the first time. I have been sick for two years. I had a bronchoscope which showed MAC and cat scans showing nodules. I really don't understand this disease and very concerned. I'm allergic to alot of antiobiotics, have GERD and meds make me sick with nausea and diarrhea. Any help or knowledge would greatly be appreciated. Thank you!!

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I recently started my second course of treatment for MAC. The first was Jan - Oct 2010, with Rifampin, Ethambutol and Azithromycin. Now I am taking Clarithromycin instead of the Azithromycin, along with the other 2. My initial diagnosis was the result of a bronchoscopy/biopsy. This time, the chest CT showed "cloudiness". I am unable to produce much for a sputum culture, so haven't done it. I'm a little uncomfortable starting the course of treatment without something more than "cloudiness" to diagnose. Anyone have thoughts? I am 39 years old healthy and active woman. It doesn't totally make sense that I have this. Feel free to comment on that as well.

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