Long-term Antibiotics for Bronchiectasis & MAC

I had the same reflux advice. I changed my diet,and got rid of the reflux. I sleep on two stacked pillows. I knew I'd get no rest half sitting up. It worked for me.

@macjane Hello Jane! Did I ever tell you that my cousin has sarcoidosis? She has it in her lymph nodes, her stomach, and her lungs. She pretty much stays in bed a lot due to lack of energy. Fortunately, she works from home on her laptop (in bed). Sadly, she is battling an aggressive form of breast cancer at this time.

I bought a 7” wedge at Bed, Bath & Beyond. I use that and my regular pillow. I’ve read others just put blocks under the legs at the head of their bed to raise it up. I would prefer to do that put I have a 4 poster bed and it wouldn’t work.

@macjane I sleep with 3 pillows and on oxygen at night only.

@macjane I ride my bike often. It was difficult at first, back in 2014. I am conditioned to it now and in better shape. I don't have to stop to catch my breath when riding any longer. My hubby and I walk every evening around a big block (30 mins). I avoid swimming pools because I do not want to chance catching mac again. Exercise is the best thing we can do for ourselves.

@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!
Laurie

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.