Starting MAC treatment with "big three" drugs: What to expect?

This is helpful, Sue. I think I got MAC from gardening, too. I have more exposure to soil and its contents than most. My doc hasn't suggested any lifestyle changes, air filters, or shower/water consumption changes. I keep reading about nebulizers and I have no idea how to start with one. Is there more information about them somewhere? Thank you for your help here. I'm so glad I found this site. I hope you continue to feel well.

I'm sorry for the misunderstanding. I am not and have never been a member of Kelly's group. I know her only from her past postings on the other two fb groups. I'm glad that you learned from her. I do not have any of the devices you mention. I don't need them.

Sue, my pulmonologist seems competent. I've not brought up a nebulizer nor has he but I will ask him about it. I'm not sure why I would need a new doctor; curious about your thoughts about this. Honestly, getting to this one and following through with recommendations takes all my strength. How does anybody here find time and energy to dig through resources and try new remedies.

I was just surprised that you had not been encouraged to nebulize to keep your lungs clear. If you work well with him, he may well be willing to endorse some of the suggestions you get here or from the NJH site.
Sue

Thank you @rits. I will check out the other 2 FB ntm groups. At this time, I am in the Mayo Clinic group only. Just keep an open mind as you read and post on KellyKats. Anyone or any company, or any country could pose as an individual. Check the group members posts. Are last names printed with each post as well as the name that they chose to use? I did learn a lot from that group, but after 2 months it was all redundant. As a result of being in that group, I now have an Instant Pot, Baby Bottle sterilizer and a LifeStraw pitcher and LifeStraw water bottle as well as ZERO filtering pitchers. These were suggestions that I picked up form members posts. I would suggest that if she makes a statement and references a research article then read the article and look for the credentials of the author of the article. You and I have communicated in that group discussion. I am happy that we are both in the Mayo Clinic group now
Happy New Year

@bestselfever See my post about KellyKats FB group. I left the group for reasons stated in my reply.

Kelly posted on the two fb ntm support groups prior to starting her own group. I know her videos where she demonstrates airway clearance, postural drainage, etc are very helpful to newbies. She lives in Denver so has the advantage of NJH for all her pulmonary care. She does share her personal info re for example her disabled daughter (deaf if I remember right), fireman husband and the fact that she is a doctoral candidate. Some in support groups share personal info and some don't. This shouldn't be an issue.

I didn't read many if her posts on those fb pages or follow her to her own group because she believes that one can avoid a MAC infection by taking what I consider draconian steps . I believe that ntm's are everywhere and there is no way to completely avoid inhaling some. That being said I will never sit in a whirlpool again (very sad) for example and I continue to rigorously do my nebbing and airway clearance 2x a day every day although it is very uncomfortable due to the state of my lungs and it takes over an hour each time.

There are other things I do to try to keep MAC gone from my sputum samples as it has been gone a while now. Everyone must decide what to do while living with this chronic disease. That is a personal decision.

Many people agree with Kelly and appreciate and follow the advice she gives. She has devoted a great deal of her time over the years researching and sharing. It is not a cult. It is a fb support group for those who find the group useful.

Just like this group.

Could you share a link (or name) for these FB NTM groups? Thanks

Oh yes, I was really scared to start the antibiotics, and the side effects, for me, were no walk in the park. But I persisted for 18 months, and knocked the infection way down but not out.

During my treatment, I learned on Mayo Connect about using 7% saline in conjunction with airway clearance. In December 2019, in consultation with my pulmonologist, ID doc, and NJH, I decided the side effects were no longer worth it for me. We did a trial of stopping the antibiotics, but continuing airway clearance & 7% saline.

Two years later here is my report: No observable reinfection, either by CT or symptoms. Only ONE exacerbation, managed with increased nebs and airway clearance for a month and a short course of steroids to calm my lungs.

Here are the ongoing precautions I take to keep from getting sick:
Twice a year visits with pulmonologist - sputum culture at one, CT at other to make sure I'm stable.
Super caution about exposure to respiratory illness. (If my kids/grands have any kinds of sniffles or cough they mask when with us - their idea.)
Keep my neb/breathing equipment clean.
Stay away from hot tubs.
Keep my water heater super hot (138F) to minimize MAC growth and take short showers.
Drink & cook with 2 micron filtered water at home. Drink spring water when not home.
Run HEPA filters in our homes.
Stay indoors or mask when dirt is blowing around, and when gardening in dry soil. Pay someone else to handle digging and mulch in my gardens. Change clothes and shower after gardening. (Pretty sure I got MAC from the dry Texas dirt where we had feral chickens in the yard.)

That's it - others may exercise more precautions, but this is working for me. I figure the extras - changing filters, equipment cleaning, masks, are a pretty minimal effort compared to dealing with the meds.

You will find a way to accommodate, and it will just be part of your routine...
Sue