Pulmonologist versus Infectious Disease Dr

@bbeers I was diagnosed with mild bronchiectasis and MAC five years ago by a pulmonologist who has since moved away. I had coughed up blood, but had no other symptoms and great spirometer readings. The pulmo had me visit an ID doctor, who monitored my health, but agreed that I didn't need treatment. I started on 7% saline after reading about it here. The first ID doctor retired and my new one, who treats MAC patients, told me to keep nebulizing the saline if I wanted, but that I didn't need to see him again unless I had some symptoms. He felt that many people were getting "treated" who didn't need to be, and that sometimes the "treatment" is worse than the disease. (I am 76. I exercise, walk about 2 miles/day, and try to eat healthy food.)

Thanks to you Sue and this site I just had my first visit with an ID doctor locally. I was diagnosed with BE in August 2022. Found Mayo Clinic Connect just a few months ago and after reading the posts I have learned a great deal and then asked my PCP for a referral.... He referred me to an ID doctor with years, and years of experience with MAC etc. He has suggested, his opinion, after reading the test results from October at NJH, that I go on Biaxin and Myambutol due to the bacteria results that were found and diagnosed in October while I was at NJH for the week long testing. NJH read the MAC was minimal and the head doctor in charge of my visit said it wasn't time to start anti biotics because the amount was minimal. Local pulmonologists and Tyler pulmonologist had all the same information from NJH and did not suggest my going on anti biotics. So, this shows you how different thoughts are. The ID feels that it is worth taking the chance with the anti biotics (the side affects and what we would do if side effects began was discussed and who to see also, .my eye doctor etc. ) to see if it will clear the bacteria or at least help by subsiding my need to constantly clear what is nearly constantly in my throat. He mentioned what he sees with me (NJH tests and pictures on my cell phone of what I bring up and out) to be the same symptoms as the Lady Windermere Syndrome. I had read about the syndrome a while ago when trying to understand the constant clearing of the throat and the foamy white bubbly "sputum"/"mucus" that comes up much of the time. He also did agree to Mucinex and NAC.
He asked me to give it all more thought and let him know what I came to as a decision after my doing my due diligence, thought/research etc. I am also waiting for the mid February sputum test results sent to Tyler. Thoughts Sue..... and others who have been expereincing this chronic disease called BE for a while etc.

I have Lady Windemere as well- classic I have been told. I took and still take Biaxin when needed which has helped flareups of BE. In my opinion I would try the two antibiotics suggested by your new ID doctor. You can always stop. The Clarithromycin ((Biaxin) has been beneficial for my ongoing BE Good luck. Irene5

Thank you for your reading my post and your response.
I have to constantly clear my throat of. At this point in time nearly every second of the day.
It goes from the foamy white bubbly to clear bubbly. When it reaches the point of clear bubbly it seems to let up.
Questions:
1. Is what you exeperienced or experience, the need to clear the throat of what gathers in your throat.?
2. Is it/was it the foamy white bubbly sputum when you clear your throat.?
With how I work to clear it out, I don't necessarily consider what I do as a cough, it's more like a pulling out of what is in my throat, what I would call a sucking out.
3. More specifically what do you feel the Biaxin was doing/ is doing/did?
More than anything the needing to clear my thoat of the substance every second, (mostly in the mornings and more so after I eat) is what causes me great disappointment...and especially the apparent confusion of what it is or is not per the doctors. It sure does limit my social life.

Thanks to you Sue and this site I just had my first visit with an ID doctor locally. I was diagnosed with BE in August 2022. Found Mayo Clinic Connect just a few months ago and after reading the posts I have learned a great deal and then asked my PCP for a referral.... He referred me to an ID doctor with years, and years of experience with MAC etc. He has suggested, his opinion, after reading the test results from October at NJH, that I go on Biaxin and Myambutol due to the bacteria results that were found and diagnosed in October while I was at NJH for the week long testing. NJH read the MAC was minimal and the head doctor in charge of my visit said it wasn't time to start anti biotics because the amount was minimal. Local pulmonologists and Tyler pulmonologist had all the same information from NJH and did not suggest my going on anti biotics. So, this shows you how different thoughts are. The ID feels that it is worth taking the chance with the anti biotics (the side affects and what we would do if side effects began was discussed and who to see also, .my eye doctor etc. ) to see if it will clear the bacteria or at least help by subsiding my need to constantly clear what is nearly constantly in my throat. He mentioned what he sees with me (NJH tests and pictures on my cell phone of what I bring up and out) to be the same symptoms as the Lady Windermere Syndrome. I had read about the syndrome a while ago when trying to understand the constant clearing of the throat and the foamy white bubbly "sputum"/"mucus" that comes up much of the time. He also did agree to Mucinex and NAC.
He asked me to give it all more thought and let him know what I came to as a decision after my doing my due diligence, thought/research etc. I am also waiting for the mid February sputum test results sent to Tyler. Thoughts Sue..... and others who have been expereincing this chronic disease called BE for a while etc.

I always had to clear my throat, but attributed it to being a teacher and talking all the time until, of course, I was diagnosed with MAC in 2015/16. I don’t think I have had the throat experience quite as bad as yours but the Biaxin will most likely clear that up. It always has cleared up exacerbations of bronchiectasis with me. Do you have GERD? I am wondering if that is part of your problem. ?? There have been time I feel like I’m choking on it all so I sleep with a wedge and three pillows. I was never a coughing kind of gal until I got hit with RSV last fall. I am so sorry you have this.

So, you see doctors from Tyler, NJH and local pulmonologist and an ID doctor?

Gerd.
There is a bit of confusion and therefore a big, do I or do I not have GERD or GORD.
The gastroenterologist locally in 2022 did the scope and said I needed to take a PPI for acid reflux. I decided not to take it at that time.
The gastroenterologist in NHJ 2023 who did the 24 hour probe study test through the nose with camera said I didn't have GERD or GORD after having done the test.
I do have a hiatal hernia.
So, for me I do the Wedge pillow with two other pillows to keep me up high and as well stay away, mostly, from all the foods they say not to eat. All this is the same one needs to do for GERD/GORD or hiatal hernia from what I have read. It is small, the hernia per NJH.
I am not giving up on finding the answer to the constant throat clearing and what I bring up and out. It could be heart, and I have an appointment this week with a cardiologist. I have seen more doctors in the last year and a half than I have seen all my 81 + 5 months of life and it all began due to the throat clearing and what I bringing up.
I have been very fortunate health wise most of my life....this however is one I can't apparently "beat." I don't feel like I'm choking with the substance in my throat...at times it is thick. I think the thickness of it depends upon how much water I took in that day. I am also starting slow with taking a small amout of liquid CVS guaifenesin in hopes of keeping it thin.
Waiting for the last sputum test sent to Tyler, TX mid February before starting the Biaxin and Myambutol and as well talking with, running it by, the pulmonologist in Tyler about the diagnosis of Lady Windermere Syndrome and the Meds suggested.
Hoping for the right answers and diagnosis....if it is possible. Thanks for your responses.

Well God love you!! You have the right attitude, and you will persevere till you get the correct answer. I’m only 74 - just a baby. It seems the throat thing bothers you most. I’m no doctor but maybe all the things together ( hernia, GERD, BE, and MAC are the catylist). I sure hope you get an answer. I think not knowing the “why” is unnerving. The liquid CVS G syrup is excellent. My husband has been taking it for years. Perhaps that will make a difference. Praying for answers for you! We Lady Windermere’s need to stick together. 🙂 irene5

Wow, seeing that (hernia, GERD, BE and MAC) took me back in terms of the reality of it. Since all this has transpired I now understand why the "elderly" become more medically complicated health wise as we age with our bodies having changed with time and living life. Yes you are right the throat clearing and no answer or idea of what it is from ENT's, Pulmonologist's and PCP .....and only the local ID doctor who stated he has seen in other patients what I bring up and out. So, I will be giving much thought to what I am going to do in the next few weeks.
Thank you for letting me know about your husband taking the CVS G syrup. I went to get more today and nothing on the shelf. The pharmacist had to help me because he doesn't feel they are going to be stocking it anymore. So he said he could order it for me on his system, it will be in on Monday. P.S. My middle name is Perseverance.🤣 We teachers had to do just that, persevere. Thank you. Barbara