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

@coco1970 @raney @bestselfever
Being chronically curious, and seeking answers to the puzzles that are MAC, Bronchiectasis and related conditions, I am always looking for other reliable, science and research based resources for learning. So, I jumped in, joined the suggested group, went through the required steps for membership, and began reading.

Here are my observations, take them for what they are worth:
The posts and guides are a compendium of extracts, some without the source cited, excerpts from and/or references to self-published materials by the blog owner, and factually unsupported theories.
There are many interesting posts and questions, but in many cases quite typical blog post answers, without much support behind them.
The blog owner appears biased against antibiotic treatment, rather than offering a more balanced approach, wherein you try everything you can to stay healthy including antibiotics where indicated.
There is a strong emphasis on airway clearance, which is well-supported by evidence.

And here is what I plan to do:
Read it for a few weeks to see if there is good information to be learned.
Take any suggestions I find and run them through my "personal filter" - to find out whether they are supported by science and research, or are they anecdotal.
Continue to rely on Mayo Connect and NJH for my MAC, NTM and Bronchiectasis information.

What is your takeaway on the the page?
Sue

Third try! I seem to have forgotten how to use Connect this year.
I learned a great deal about lifestyle changes from the people here on Mayo Connect and National Jewish Health videos: https://www.nationaljewish.org/education/pro-ed/live-events/ntm-patient-videos

The very first thing I learned was to find a pulmonologist who understands bronchiectasis and MAC, and will collaborate with me and other docs to find the best practices for me. I found that in my second pulmonologist after the first one "fired" me for asking him to consult with an infectious disease doc to fine tune my treatment.

Full disclosure:
I am highly analytical, and have treated having MAC & Bronch as something of a science project. I have lifelong asthma & reactive airways. I do not have GERD, silent or otherwise, to contribute to my risks.

I know a simple cold or respiratory infection usually leads me to an exacerbation, which can lead to reinfection, so I am very careful to stay healthy and stay away from sick people. And to practice airway clearance. And wear a mask...as my brother with compromised lungs says "We wore masks before they were cool."

NTM and MAC are everywhere, and I cannot eliminate exposure completely unless I want to live in a bubble, which I won't. So I did a risk analysis to figure out the most likely exposures.

My highest risk is in the dirt, soil & dust, especially because of the strain of MAC in my lungs, having feral chickens in my yard/garden in Texas, and working extensively with soil and mulch in MN. So I limit my exposure to the soil/dust - masks, water it down, clean up after. Use HEPA air filters, keep windows and doors shut when windy or when mowing, etc is going on.

My water is from a well in Texas, making it unlikely to be contaminated by NTM/MAC. My water in MN is filtered and kept very hot to limit risk. I don't have/use a hot tub. So this is a lower risk, thus I don't boil my water, clean my shower heads, etc.

Do you have the option to find a doctor with more experience with bronchiectasis and MAC? If not, would your doctor be willing to consult with someone with more expertise?

Sue

You are a smart lady. It took me about 2 months to see what you saw in a short while. Whoever or whatever is named "kellyKats" is against most everything. Readers get brained washed. This KellyKats (???). Spouts info like an authority. But the description of this "person" is that she has many, many, possible diseases. Mother had bronchiectasis; handicap child; etc. etc. Maybe this is true or maybe it is just to have more people relate to "her." Not sure what it is, but I got a very uncomfortable feeling. Is some company "mining data" for a purpose? My daughter joined the group as a family member. She was called for pointing out that the research article that was referenced did NOT say that "guluten is an opoid" but that is what she stated loud and clear. I almost feel that members are being brainwashed and this "KellyKats" is the cult leader.

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.

thanks @rits. I did learn a lot from other group members and most of all I learned that I was not alone in my struggles. So, are you saying that you know her personally or just from what you have read on her FB pages? I did learn a lot from group members, and most of all I miss offering support to so many who are at the end of the rope. Unfortunately,I could not check out the accuracy of her credentials from the name KellyKats. I could not find other profile info to identify this person.
Doctoral candidate does not mean much. There are lots and lots of different doctoral degrees, and a candidate (??) . What does that mean. As a rental property owner I do a lot of background checks, so always looking for vague info that can't be verified.
This adds another layer of questions. How can someone be working on a doctorate degree; have all the illnesses that KellyKats has, and spend the majority of the day responding to posts, writing blogs, and doing research and reviewing articles. I don't think it is humanly possible for 1 person

No I do not know Kelly. But she is a real lperson who is in her videos. I don't have experience doing background checks but she doesn't share her last name so wouldn't that make it impossible to find her?

Have you joined the other two fb ntm groups? Kelly no longer posts on them so you can offer support for others without thinking about her.

Hi, Sue-

I, like you, run everything through my "personal filter." I have 100% adopted the airway clearance portions suggested but have filtered out some of the precautions suggested. If something makes sense I try to make it fit into my life but also have not gone to extremes.

I am also mindful that this is information coming from someone who is living through this and not as medical advice from a professional. I will say that I struggled with the decision to get a bronchoscopy after reading through some of the posts about the bacteria they can leave behind. I went to NJH in October 2021 because I was not getting any answers to the end-stage bronchiectasis that showed on my first CT scan in October of 2020 and my pulmonologist here was not as concerned as I thought he should be and put off a bronchoscopy here because of Covid and then at my 6 month appointment left that decision to me. I thought by that deferral to me that maybe it was not a necessary diagnostic tool but was continuing to get worse and had been on antibiotics almost every other month to keep myself functional. I had my first bronchoscopy on a Tuesday at NJH and the Doctor found a nodule on my right middle lobe orifice that had not been detected on any of the 3 CT scans that I had in the past year but he was using the greatest of caution and did not want to do a biopsy because it did not look like a typical cancer to him. I was then sent for another interventional bronchoscopy with ultrasound on that Thursday at Saint Joseph's in Denver for a biopsy. Once the doctor had the ultrasound to take a better look it was determined that the nodule was actually a AV malformation. After many test for all the other usual causes of bronchiectasis we are fairly certain that this malformation is blocking me from clearing my right middle lobe. I will go back in the spring for either a resection of that lobe or a coiling of that AV by Interventional Radiology.

Phew...that was a lot of information. The conclusion is that although I find much helpful information from the Facebook group and members it has to be tempered with my own good sense. I hope that anyone in the group would not put off a procedure or test because of fear from something they have read. I have learned many other helpful things from the group like being able to ask for Levalbuterol instead of Albuterol before my 7% and then also being able to ask for a lower dose of the Levalbuterol. I would not have known any of that and would have suffered with the effects that Albuterol was having on my heart. My culture from my bronchoscopy also came back showing pseudomonas and it has been helpful to search through the group for others experiences with the different drugs like I would here. Just another resource but for me a little more convenient. I manage a business Facebook page so am on Facebook daily and can do some quick searches or scroll through new posts.

Happy New Year. I am hoping for happiness and good health for us all in 2022.

@rits I also share these same thoughts about the group and Kelly. I give her so much credit for the time she takes to share her information and knowledge and am so happy that she has been able to keep herself infection free for so many years. I also know that because of my own diagnosis her methods won't be able to keep me well and I will need a resection of my right middle lobe. I do however, follow her Airway Clearance recommendations and many of the easily avoidable precautions that she recommends. My doctor at NJH says that my bronchiectasis is mild in the other areas I have it and will probably be able to go down to nebulizing once a day once I have that lobe resected but I think I will be always stick to the twice a day in an abundance of caution.

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

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.