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pejohnston (@pejohnston)

Long-term Antibiotics for Bronchiectasis & MAC

MAC & Bronchiectasis | Last Active: Aug 14, 2020 | Replies (164)

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@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name that you would like to use? To answer your question about long term antibiotics; you will see that many of our members are on a long term regimine. Most that are taking antibiotics are taking the 'Big 3' cocktail. People usually are on them anywhere from 18 months to 3 years. I am on a different kind of ongoing regimine. I have been taking alternating singular antibiotics on alternating months. I have been doing this since 2013. It is known as a prophylactic approach. My doctor explained that he liked this approach because it is more tolerable for the organs and prevents the mac from becoming resistant to the antibiotics.

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Replies to "@pejohnston , Hello, and welcome to the Connect community. Do you have a a first name..."

Terri: I spoke to someone yesterday at The Mayo and she urged me to stay in contact with people like you as I have had such a hard time with many antibiotics. I find you as I have mentioned so indeed supportive.

@windwalker888 my mom was diagnosed a year ago with MAC and just recently was put on antibiotics for bronchiectasis. Until I found this site I had no idea what bronchiectasis was.
At the same time the doctor found lung cancer. A small spot upper left lung. That was the surgeon. The specialist to deal with MAC advised against the treatment in lieu of removing the cancer. Mom was 82 at the time of surgery.
She's recovered from cancer surgery. But all the same pains and more, more easily winded – wheezing. Coughing up sputum all day.
She was strong and independent until a year and a half ago.
Now she's pretty much home bound.
Every doctor advises against the tradition big 3 treatment citing the harsh side effects.
I was wondering about your regimen? What is it?

I'm eighty-one. I use a nebulizer with a saline solution my doctor prescribed. It really helps. I only did one antibiotic for less than half a year and loss hearing as a result. Amazon has an easy to use nebulizer, Light to hold in the hand and it's quiet. It's an ultra sonic not a compressor. It cost about 26 dollars. I'm also on oxygen at night. A pain in the neck but I'm use to it now and it does make a difference.
I've had mac and bronc since 2010 and I am still functioning. I drive, run errands, visit run my own life. .

@lauriefrancis Laurie? Hi there, and welcome to our Connect group. Wow, I am so glad your mom tolerated her surgery and was able to have the cancer removed. Do you go to your mother's doctor appointments with her? It is important to get a copy of the lab results, tell them that you want the COMPLETE lab printout that also includes the susceptibility test. That is a test that was done on the mac to see which antibiotics will work. That varies from case to case. Ask the doctor what the load is (how infected is she?) Ask if she is only mildly colonized or not. If her doctor cannot provide this info, then she should seek a diff doctor. Here is my antibiotic regimen: I was put on 500 mg of Doxycycline 2x day for 10 days out of the month on alternating months. The other antibiotic used on alternate months is 500 mg Ciprofloxacin 2x day for 10 days. I started on this in 2013 and had sputem tests every 6 months and they came back negative. I did catch pseudomonas, another nasty bug, and then the doxycycline got replaced with tobramycin to combat that new bug. That went away after a month, but they kept me on the tobramycin on alternating months to keep the pseudomonas away. They alternate the meds to keep mac from becoming resistant to them. I am so sorry to hear that your mom has become housebound. That has to be depressing for her. She may regain some of her old self once she is on a treatment plan for the mac. This disease is notorious for stealing your energy away. I am 59 yrs old and I had to learn to pace myself. I cannot do all of the things I used to or at the speed that I used to. When I do housework or anything that requires movement; I do it in 20 minute increments. I will work for 20 mins and then sit and rest 20 mins. I would really like it if you would keep me posted on what plan on treatment they come up with for your mom. You are a wonderful daughter to have joined our group on your mom's behalf. Tell her please that I hope that she gets to feeling better soon. -Terri

@flib Hello and thank you for posting an update on how well you are doing. I too use nebulized saline, it's good stuff. I had read about it many years ago before it was passed for use here in the states. Thoracic journals had stated that saline had been used in France for several years with very good results. That is a bummer about your loss of hearing from the meds, I hear that from time to time from our members on this site. I too am on oxygen at night. I was diagnosed with mac in 2005. How is your energy level?

Hi Terri
Thanks for your detailed response. I don't go to all her appointments. My sister lives closer and she has gone to almost every appointment. I try to make it to the specialists. Our biggest concern is that the doctors here don't seem to want to treat our Mom for Mac. No one either has explained the bronchiectasis. From what I've read here that seems worse than Mac.
Also, we are in Canada. Our healthcare in Ontario is horribly broken in terms of wait lists and funding. We are concerned that the lack of treatment options is more cost related than health related.
Because my Mom has become so much weaker in the last year and a half yhe doctors all seem to agree that the traditional treatment of multiple antibiotics might be worse than not treating. That's why I was curious about your regimen.
I watched a video on YouTube of a woman doctor explain Mac and a bit about bronchiectasis she was from the Jewish Medical Center people have mentioned on this group discussion.
My Mom certainly fits the doctor's description.
We are waiting for an appointment with a respirologist. She hasn't seen one yet.
Thank you for creating this group!

Hi @lauriefrancis
I would like to add my welcome and also introduce you to fellow Canadians who are members of the Connect MAC group. Please meet @megan123 @nick52 @teresaml @mariposa @joanney and @tessie. They may be able to help with advice specific to finding a MAC specialist in Canada.
It has been suggested by other members that you ask to see an Infectious Disease specialist. You mention that you are from Ontario. Do you live near an urban centre like Toronto, Hamilton or Ottawa?

@colleenyoung @megan123 @nick52 @teresaml @mariposa @joanney @tessie thank you.
We are not *near* those cities. We are 3 – 4 hrs from Toronto. 8 from Ottawa. We live near the boarder across from Detroit MI.
My Mom is seeing an infectious disease doctor ( well she saw her for the diagnosis last May, and then in March of this year). Dr Kwan ordered the sputum tests. Waiting on results. The Dr keeps saying that because Mom has a bloated and painful stomach that the Mac treatment will make things worse.
Dr Kwan ordered a pulmonary function test (end of May) and appointment with respirologist in June.
We brought Mom to emerg by ambulance last Friday. She was wheezing a lot. Had been getting worse all week. After a chest xray EKG blood tests reviewing last CT from March the emerg Dr contacted on call Respirologist and supposedly Mom is being fast tracked to see one of 2 whichever can fit her in fastest.
The infectious disease Dr doesn't want to treat and so far all the Dr's seem not to know anything much about Mac and really haven't explained the severity of bronchiectasis to us.

My energy level varies. I have days when I own the world and days when I can barely get dressed. And days when it's a combination of both. Already a slim person I have lost about 25 lbs and don't seem able to gain weight. I've always had a light appetite. and not much of a cook. Thanks for telling me about the saline used in France. I use it twice a day. Sometimes it is difficult, makes me cough a lot and then feel exhausted. But I'm not complaining; whatever it takes to have the good days.

lauriefrancis, I'm glad to hear you've booked respirologist appt. in June. My Toronto doc successfully gave me treatment for MAC. It is true doc's don't know much about Mac, but I recommend find out if respirology doctors are qualified equally in bronchiectasis inclusive. I trust they also will get to the bottom of her bloated and painful stomach. It is possible she may have hernia. Best of care.

May I ask what you took for your treatment?

The weight thing is a tough one. Many people don’t understand. We never would think to say” Oh my gosh you are so fat!” But people think nothing of saying “ What’s wrong with you? Don’t you eat? Are you anorexic?” I always reply with a smile and say “That’s how the good God put me together!” I should reply with something less kind, but it’s not in my nature to embarrass someone back. People should not prejudge someone without knowing the “rest of the story.”The ID doctors hope to get me up to 100 pounds by taking an appetite stimulant and using marijuana. Since I’m not a party gal I haven’t even tried the latter. Anyway what made sense was the doctor telling me to force myself to eat more so that my stomach would get bigger. When you don’t eat your stomach shrinks which keeps the cycle of not eating going. With ten children plus teaching, I spent the better part of my life eating off of people’s plates. It may not have been the best, but it was easy, and I ate plenty. Good luck to you! The ID doctor tells me that if my nutrition improved the MAC would not be happy and might take up residency elsewhere. I am not sure about that as there are way more contributory factors. But I am trying to eliminate one!

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