1. < MAC & Bronchiectasis

Need help with gut issues - feeling discouraged.

Posted by shooei @shooei, Dec 12, 2020

I know this too will pass, but I am struggling and looking for anyone with similar symptoms and/or maybe some tips to offer.
I have MAC/Bronchiectasis. Bronch is mild to moderate, but hasn't really changed much in over 4 years. I do faithful airway clearance along with my 7% saline, never been on the big 3. Take only NAC, famotidine 10mg 2x/day, Ion gut health probiotic, and some Pepsin GI. I have always had some IBS as well as GERD, but this seems different. I have been dealing with pressure in my upper center and left gut/stomach. It is very high and feels like someone has a fist pressed into my stomach & diaphragm. It is painful and exhausting pressure/crampy. When it is really bad I get overall muscle weakness & fatigue, sob, increased pulse rate, unable to eat, and frequent stools (sorry for the oversharing). Overall just feel weak & I told my husband I feel like I'm gonna die (ok, I MIGHT be a little overly dramatic 😉 ). This last severe bout, I also noticed it was at the same time as I was having more green & yellow sputum and more volume of sputum. My diet is SUPER restricted after having suffered bouts of this for the last 4 years and thinking it is food caused. I don't do any wheat, dairy (except for some hard cheese - zero sugar grams), gluten, sweets, mostly a low FODMAP. Interestingly, this all started at the same time as when I was finally diagnosed with MAC/Bronch and was having some hemoptysis. I have had full blood work twice for these issues (once just last week), and everything comes back totally "normal" (except I have high bilirubin from Gilbert's disease, which is a non-issue), and this last time I had low glucose, probably because I hadn't eaten much for a couple of days.

Questions: I know the gut-lung axis goes both ways - gut can affect lungs, lungs can affect gut. Do any of you feel gut symptoms get exacerbated with flare-ups of MAC/bronchiectasis? I don't think I really know what an "exacerbation" feels like for me - sometimes I just feel worse than others, and it ALWAYS seems to include my stupid gut issues. Could they be connected? My pulmo doc just has zero suggestions, and doesn't think there is a connection. At these times, should I be having a sputum sample checked? Any shared symptoms, suggestions, bad jokes......anything appreciated!! Thanks so much!

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Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 13, 2020

Hmm, it sounds like you're doing everything I would suggest. I will say, once I was off the Big-3, it was months before I could eat without pain and/or nausea. I managed to get through it all be eating tiny amounts of food every 2 hours, whether I wanted to or not. I often made a pitcher of protein smoothie, filled with whatever fresh fruit/veg I could tolerate as well as juice and kept it in the refrigerator, then poured 4oz at a time & drank it. My daughters cannot have dairy, so they substitute another "milk" for the Greek yoghurt I used. My friend uses goat milk kefir (fermented liquid yoghurt) in her smoothies.
It certainly would seem reasonable to have sputum tests done to determent the severity of your MAC, and whether there are any other infections like pseudomonas. Since your gut issues have persisted so long, have you consulted with a gastroenterologist to try to get a complete diagnosis?
Sue

REPLY
1 reply
shooei | @shooei | Dec 14, 2020
In reply to @sueinmn "Hmm, it sounds like you're doing everything I would suggest. I will say, once I was..." + (show)
@sueinmn

Hmm, it sounds like you're doing everything I would suggest. I will say, once I was off the Big-3, it was months before I could eat without pain and/or nausea. I managed to get through it all be eating tiny amounts of food every 2 hours, whether I wanted to or not. I often made a pitcher of protein smoothie, filled with whatever fresh fruit/veg I could tolerate as well as juice and kept it in the refrigerator, then poured 4oz at a time & drank it. My daughters cannot have dairy, so they substitute another "milk" for the Greek yoghurt I used. My friend uses goat milk kefir (fermented liquid yoghurt) in her smoothies.
It certainly would seem reasonable to have sputum tests done to determent the severity of your MAC, and whether there are any other infections like pseudomonas. Since your gut issues have persisted so long, have you consulted with a gastroenterologist to try to get a complete diagnosis?
Sue

Jump to this post

Thank you Sue! I did see a gastroenterologist a couple years ago, but it definitely wasn't the right one. They did an upper endoscopy, tried a med, and then offered to take my gallbladder out and sent me on my way. Makes you not too excited to try again, but I definitely need to.
I have an appointment with my pulmo coming up, so will ask for sputum tests. They haven't done any since diagnosis and they never could tell me bacterial load/count, and said that is not done. I will push to see if they can send to a different lab. If I didn't have all of you saying some of these things are necessary & possible, I wouldn't know what to ask for so thanks to everyone here!!! I'm sure I am known as the "problem patient", but I'd rather be that and get the right care!
Thank you!
sherri

REPLY
2 replies
irene5 Irene Estes | @irene5 | Dec 14, 2020

@shooei One of the many things I have learned from the members on the site is that you have to advocate for yourself. Sometimes that means leaving a doctor you have had for years, researching and then finding a new one. Change is difficult for most people but sometimes necessary. irene5

REPLY
migizii | @migizii | Dec 14, 2020
In reply to @pop55 "I was diagnosed with Mac earlier this year and also have GERD/Refulx. Last month I went..." + (show)
@pop55

I was diagnosed with Mac earlier this year and also have GERD/Refulx. Last month I went to National Jewish and saw Dr Huitt. She thinks my Mac is from the Reflux. She believes if I make some changes in my diet and lifestyle it will go away on its own without treatment. Some of the big changes are ....no sleeping on my right side, no more than 6 ounces of fluid per hour, no drinking or eating 3 hours before bed, no bending over, sleep with my bed elevated 30/40%. The diet is pretty simple but strict. No Caffeine, chocolate, mint, red sauce, fried foods, high fat foods, etc. The best thing I ever did was to go to National Jewish for a consultation. They check out everything and try to find out the reason you got Mac. Hopefully I can get rid of this without taking antibiotics.

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Wow! That is a thorough follow up! It sounds like a good deal of work, but hopefully it will help you immensely. So happy for you!

REPLY
pop55 | @pop55 | Dec 14, 2020
In reply to @shooei "Thank you Sue! I did see a gastroenterologist a couple years ago, but it definitely wasn't..." + (show)
@shooei

Thank you Sue! I did see a gastroenterologist a couple years ago, but it definitely wasn't the right one. They did an upper endoscopy, tried a med, and then offered to take my gallbladder out and sent me on my way. Makes you not too excited to try again, but I definitely need to.
I have an appointment with my pulmo coming up, so will ask for sputum tests. They haven't done any since diagnosis and they never could tell me bacterial load/count, and said that is not done. I will push to see if they can send to a different lab. If I didn't have all of you saying some of these things are necessary & possible, I wouldn't know what to ask for so thanks to everyone here!!! I'm sure I am known as the "problem patient", but I'd rather be that and get the right care!
Thank you!
sherri

Jump to this post

Most labs can't give the bacterial load or even the specific bacteria, they just say its Mac. As far as I know only National Jewish and Tyler have labs that can be specific. One of the main reasons I wanted to go to National Jewish is because they have a really good lab and can provide the bacterial load and specific bacteria. I had several cultures that came back with Abscessus and then I was told the lab made a mistake and it was really Mac.

REPLY
2 replies
poodledoc | @poodledoc | Dec 15, 2020
In reply to @shooei "Thank you Sue! I did see a gastroenterologist a couple years ago, but it definitely wasn't..." + (show)
@shooei

Thank you Sue! I did see a gastroenterologist a couple years ago, but it definitely wasn't the right one. They did an upper endoscopy, tried a med, and then offered to take my gallbladder out and sent me on my way. Makes you not too excited to try again, but I definitely need to.
I have an appointment with my pulmo coming up, so will ask for sputum tests. They haven't done any since diagnosis and they never could tell me bacterial load/count, and said that is not done. I will push to see if they can send to a different lab. If I didn't have all of you saying some of these things are necessary & possible, I wouldn't know what to ask for so thanks to everyone here!!! I'm sure I am known as the "problem patient", but I'd rather be that and get the right care!
Thank you!
sherri

Jump to this post

Hello @shooei, Did the GI doc say why he wanted to remove your gallbladder? I just read your original post and I think some of your symptoms could be gallbladder related. You are doing a lot of good things to keep the Bronchiectasis/MAC under control. You might try adding Mucinex along with NAC. As far as diet if you are eating animal protein you could eliminate the Famotidine and Pepsin from your regime by going with a WFPB diet (whole food plant based). Regarding the lung-gut axis question it is proven that reflux/aspiration can definitely contribute to lung problems. I don't see how lung issues could cause gut problems unless of course you are taking antibiotics for the MAC. Just my 2 cents worth. Bill

REPLY
1 reply
shooei | @shooei | Dec 15, 2020
In reply to @pop55 "Most labs can't give the bacterial load or even the specific bacteria, they just say its..." + (show)
@pop55

Most labs can't give the bacterial load or even the specific bacteria, they just say its Mac. As far as I know only National Jewish and Tyler have labs that can be specific. One of the main reasons I wanted to go to National Jewish is because they have a really good lab and can provide the bacterial load and specific bacteria. I had several cultures that came back with Abscessus and then I was told the lab made a mistake and it was really Mac.

Jump to this post

I know some docs just routinely send to National Jewish. I don't know why they don't think this is important, but I will as if it is possible for them to send to National Jewish. Hate to offend people, but.....when it's not their lungs I guess it doesn't feel so critical 🙂

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 16, 2020
In reply to @shooei "I know some docs just routinely send to National Jewish. I don't know why they don't..." + (show)
@shooei

I know some docs just routinely send to National Jewish. I don't know why they don't think this is important, but I will as if it is possible for them to send to National Jewish. Hate to offend people, but.....when it's not their lungs I guess it doesn't feel so critical 🙂

Jump to this post

The protocol at my clinic in MN is to send the culture to the State Dept of Health. If positive for MAC it is then sent to NJH for further analysis (med sensitivity testing.) A respiratory therapist explained that this comes from TB testing requirements since both are Mycobacteria. For public health reasons they want to know who has TB which is contagious and who has NTM.
Sue

REPLY
1 reply
migizii | @migizii | Dec 16, 2020
In reply to @pop55 "Most labs can't give the bacterial load or even the specific bacteria, they just say its..." + (show)
@pop55

Most labs can't give the bacterial load or even the specific bacteria, they just say its Mac. As far as I know only National Jewish and Tyler have labs that can be specific. One of the main reasons I wanted to go to National Jewish is because they have a really good lab and can provide the bacterial load and specific bacteria. I had several cultures that came back with Abscessus and then I was told the lab made a mistake and it was really Mac.

Jump to this post

Are you saying the Mayo labs are unable to determine specific bacteria or bacteria load?

REPLY
1 reply
shooei | @shooei | Dec 16, 2020
In reply to @sueinmn "The protocol at my clinic in MN is to send the culture to the State Dept..." + (show)
@sueinmn

The protocol at my clinic in MN is to send the culture to the State Dept of Health. If positive for MAC it is then sent to NJH for further analysis (med sensitivity testing.) A respiratory therapist explained that this comes from TB testing requirements since both are Mycobacteria. For public health reasons they want to know who has TB which is contagious and who has NTM.
Sue

Jump to this post

Makes sense, thanks Sue.

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