(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Dear toons, bring your own bottle of water with you to restaurants.
Here are my options:
1. I boil a pot of tap water at home for 10+ minutes, pour some in glass bottles and save the rest for washing vegetables and fruits to be eaten without cooking.
2. I use LifeStraw pitcher that filters tap water. I use it for drinking and herbal tea. I bought the 10 cup pitcher so I refill it every other day.
3. Bottled spring water, is supposed to have very little mycobacteria, if any. I bring one with me in the car and into a restaurant. There is no issue with bringing it to any restaurant.
In my bathroom, I have AquaMed filters for the shower and sink.
I hope you find a way that works for you.
Best of luck.

May I know the method of lung (autogenic) squeeze. It is good that your bacteria count is 0 and remain stable for 3 years.

Hi, went to my infectious disease Dr and he said 2 cultures ago only 1 out of 3 grew anything and it wasn't the one they were treating me for. However the latest 3 aren't growing anything. If the next 3 are negative I will start my last year on the big 3 antibiotics as long as they stay negative. Have been diagnosed since Feb 2022, on big 3 since 8/22. Keeping my fingers crossed. Have side effects but worth it if cultures finally come back negative. He said I can stop the nebulizer since it wasn't working but if cough gets worse have to start using it again.

Hi, I am Jane and was diagnosed with mac a year sgo and put on the big 3 - Ethambutol, Azithromycin and Rifampin. There have been some side effects but tolerable considering my cultures are starting to come back negative. I am hopeful but still hesitant as I know it could turn around. Just stay with whatever program they put you on and give it a try. I was very hesitant because of all the horror stories but you have to give it a try it will be worth it. Good luck.

I also use the LifeStraw Pitcher but you don't boil your water before putting it in pitcher do you? From my understanding I can use tap water and the LifeStraw will filter it. I had once read where Fiju and Smart Water were safe to drink but then recently someone posted they were not. The spring water sounds like a good alternative. Let me know if you have any more tips because it is so helpful since I just started the Big 3.

I joined a Facebook group called Lung Matters: Covid, Bronchiectasis, MAC, NTM, Nocardia, Pseudomonas & more. There is a lot of good information shared there. There is also a great resource that I believe was produced by the woman who started that facebook group. It covers a range of topics including airway clearance techniques and I believe a lung squeeze (not sure it is called that) is included there.
https://selfmattersinstitute.wordpress.com/a-handbook-for-lung-matters/

I have to confess that, after nearly 5 years of feeling unwell (I had recurrent chest infections, nausea, weakness, sweats, etc for a year before I was diagnosed), I get kind of weary with always trying to eat right, exercise, do airway clearance twice a day, sterilize everything, be cautious around water and soil, etc, etc. Covid has made this much worse. However, the 6 months on the Big 3 and the resultant hearing loss and constant tinnitus are a good and constant reminder why I’m doing this.

Hope this helps.

Hi. I was seeing a pulmonologist who referred me to an Infectuous Disease doctor. The ID doc has asked if I was keeping up with my pulmonologist. I would prefer not to see both. Do many people see both? Both doctors are part of a big system and was wondering if that might be the issue. Maybe the system wants their doctors to encourage many referrals in-house??? It will be my 5th month on MAC antibiotics for strains Intracellularae and Porcinum. Also, has anyone used their good pulse- ox levels to reduce treatments. It would seem that the o2 levels might be a good indicator of need for more or less bronchodilator medications. Albuterol has caused large tremors with me when using regularly. Thanks for any advice and so glad to participate in this forum.

I think each of us has had a different experience with MAC & bronchiectasis.

In my case, I saw both an ID doc, who managed my meds, and a pulmonologist, who manages my lung health. It was extremely helpful because they functioned as a team, and kept my primary in the loop as well.
Now that I have been off the antibiotics for 3 years, I continue to see the pulmonologist (first every 3 months, then 6 months, now annually unless I get worse.

As for bronchodilators. my pulmonologist has transitioned my from (inhaled and/or nebulized) levalbuterol plus budosenide as needed to a (generic) Symbicort inhaler, which has calmed my tremors a great deal. It has been the BEST management tool for my combination asthma and bronchiectasis. I made it through allergy seasons and a respiratory virus without a major exacerbation for the first time in probably 10 years. I also neb 7% saline and do airway clearance (Aerobika) to keep the NTM at bay.

As for the O2 sat question - hmm... I personally have wonky O2 sats - probably due to a lifetime of lung issues so have never considered this. I think the better question, if you are dealing mycobacteria, is "Are you keeping your lungs clear of mucus by doing regular airway clearance?" If you are able to do so without albuterol, maybe ask the doc about 1)stopping, 2)stepping down to a puff on an inhaler, or 3)substituting a less tremor causing med like levalbuterol or Symbicort.

Are you doing airway clearance regularly? Do you use saline nebs or a device to help move the mucus out?

Sue

I take my water bottle in and ask the wait staff if I can just drink my water. Only one restaurant has said no. They will bring me an unopened bottle of water for $1.00. That works for me.

I always take a Smart water with me.