1. < MAC & Bronchiectasis

Pulmonologist versus Infectious Disease Dr

Posted by bbeers @bbeers, Dec 2, 2023

I was diagnosed with MAC in August. Pulmonary Dr. wanted me to start Big 3 even though I have no symptoms. I asked if I could take one at a time rather than all three at once. He said no. I just wanted to space them out so I could determine which one, if any, was causing side effects. I decided to see an Infectious Disease Dr. and her approach is different. Do you have a preference over one type of Dr. to another. I feel like the ID Dr. might be better equipped to handle this disease. Thank you

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

jnmy | @jnmy | Mar 10 8:42am
In reply to @blm1007blm1007 "Gerd. There is a bit of confusion and therefore a big, do I or do I..." + (show)
@blm1007blm1007

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.

Jump to this post

On the issue of GERD, I was told anyone, from time to time, can have symptoms of GERD but not have a diagnosis of GERD that shows up on the 24 hr PH test. Likely no need for PPI’s in that case, but Gaviscon (or other product) or using a wedge pillow could help. Also taking a PPI before having a meal that might trigger your symptoms can work too.

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Mar 10 10:50am
In reply to @jnmy "On the issue of GERD, I was told anyone, from time to time, can have symptoms..." + (show)
@jnmy

On the issue of GERD, I was told anyone, from time to time, can have symptoms of GERD but not have a diagnosis of GERD that shows up on the 24 hr PH test. Likely no need for PPI’s in that case, but Gaviscon (or other product) or using a wedge pillow could help. Also taking a PPI before having a meal that might trigger your symptoms can work too.

Jump to this post

Thank you for reading my post and for your reply. All who read and answer posts are wonderful. Such great help being given to each other.
Yes, just like with the Covid tests and other tests....nothing is perfect. False positive, false negative etc. etc. So for me, I do all I can (diet, wedge etc.) with the thought that I have GERD and also since having learned in October I have a small hiatia hernia,....other than taking a PPI. I also listened to Dr. Gwen Hewitt's video, as mentioned in one of the posts in Mayo Clinic Connect, and she confirmed my decision of over a year ago to not start a PPI. I was told of Gaviscon by a friend, but again did not take it. Although I believe in letting the body heal itself with the right nutrition and common sense (regarding supplments etc.), and it always worked in the past, I realize my body and its "systems" are different now and I may have to change my way of thinking and healing myself by taking med's. What a learning process this is and has been.

REPLY
squire123 | @squire123 | Mar 10 8:42pm
In reply to @blm1007blm1007 "Thank you for your reading my post and your response. I have to constantly clear my..." + (show)
@blm1007blm1007

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.

Jump to this post

Interesting, my viscosity of slime seem to change, very dense and sticky to more slippery. Yes it also has the bubbles in it. Mucus 101! Lol

REPLY
2 replies
sweethighland | @sweethighland | Mar 11 3:28pm
In reply to @squire123 "Interesting, my viscosity of slime seem to change, very dense and sticky to more slippery. Yes..." + (show)
@squire123

Interesting, my viscosity of slime seem to change, very dense and sticky to more slippery. Yes it also has the bubbles in it. Mucus 101! Lol

Jump to this post

I have that slippery every day, not clear, always yellow/green. So tired of this.

REPLY
blm1007blm1007 | @blm1007blm1007 | Mar 12 10:15am
In reply to @squire123 "Interesting, my viscosity of slime seem to change, very dense and sticky to more slippery. Yes..." + (show)
@squire123

Interesting, my viscosity of slime seem to change, very dense and sticky to more slippery. Yes it also has the bubbles in it. Mucus 101! Lol

Jump to this post

Has it been confirmed by pulmonologist or ID doctor etc. that the bubbly (mine starts out white foamy bubbly and changes later in the day to clear bubbly) is coming from your lungs due to BE?
When the doctors, pulmonologists, see what I bring up they say "I don't know what that is." Do you have a hiatal hernia, possble GERD along with MAIor MAC as I do?
A helpful post to me suggested that the combination of it all could be the cause of always having to clear out, of what seems to be a gathering place in my throat for this "junk", the "junk"....what I bring out. I generally can sleep O.K. at night if I nebulize 7% in the late afternoons. Thanks for your reply

REPLY
View MoreView Less
Please sign in or register to post a reply.