Do Bronchiectasis and MAC go together?

Posted by conniec @conniec, Apr 27, 2017

I was diagnosed with this in January. Had pneumonia in November. My dr didn’t tell me to get a sputum sample til my second visit this past week. He started me On nebs and aerobika treatment. I had a second Ct scan and am not sure if there were changes. Does bronchiectasis and MAC go together. It seems like most people here talk about MAC and not bronchiectasis?

Liked by lenibby

@tfritschy

Hello. My name is Teresa and I’ve just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I’m seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of 3 daily AB’s today. I’m in my 50’s and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I’ve faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

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Hi Becky, thanks for your encouraging words. I really do think that having a community of support from people who have lived through similar issues will be an enormous help. I went through the whole gamut with the cancer treatment (surgery, chemo, radiation and meds) but always had the hope and expectation of achieving remission, and life going back to a somewhat “normal” state. That treatment probably played a role in this condition though, as the area of cavitating lesions is exactly where I received the radiation. This chronic condition feels more oppressive, and I’m not sure if I can expect anything more than to just maintain my status and keep my symptoms from becoming progressively worse. If the MAC is successfully eradicated does the underlying bronchiectasis become less symptomatic? Would love to hear other perspectives on this.

@kanaazpereira

Welcome to Connect, @tfritschy; we’re so glad you’ve joined us.

I would sincerely encourage you to view this ongoing discussion, MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX, as well, where you will find so many caring and supportive members. While we wait for others to join in, would you share your concerns/fears about treatment options with us?

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I’m glad to have this forum available for questions and support. My reluctance to do the antibiotic treatments was primarily because of some noted side effects, particularly potential hearing/vision loss. I’m a sign language interpreter and both senses are critical for me to be able to do my job. Five years ago I had sudden sensorineural hearing loss to a degree that affected my work, and I’m terrified to think of losing more. I already wear glasses and am concerned about that getting worse too. Needless to say, if I can’t work I can’t afford my incredibly expensive health insurance! My pulmonologist is aware of my history and considered that when prescribing meds, and I will follow up regularly with my audiologist and ophthalmologist. Has anyone on the forum had issues with these specific side effects?

@kanaazpereira

Welcome to Connect, @tfritschy; we’re so glad you’ve joined us.

I would sincerely encourage you to view this ongoing discussion, MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX, as well, where you will find so many caring and supportive members. While we wait for others to join in, would you share your concerns/fears about treatment options with us?

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Hello Teresa and fellow Patients of Respiratory Disease. I agree this site is a great gift from those who share our Journey.
Thanks to Mayo. I ask members to be patient in receiving my posts as I am a 64 years young Widow who is self taught
in the Computer Tecnology world. My young grandchildren know more. Hahaha
I would also like to draw attention to the many Medical terms often used by those on this site. Appreciatively and
understandably, knowledge of our personal Disease can be reflective in the language skills that come from our
Medical Team who introduce us to them respective of our Disease. In being careful to not paint all with the same
brush, I find myself having to do research to define some medical lingo written by informed patients. I guess what
I am respectfully asking is that we keep that in mind as we communicate with each other.
Thank you,
Judy
@DavisEyes2017
Unsure as to how I can send to a group, to all who have reached out to me will you forward this
to fellow Members Teresa?

@kanaazpereira

Welcome to Connect, @tfritschy; we’re so glad you’ve joined us.

I would sincerely encourage you to view this ongoing discussion, MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS, http://mayocl.in/2pMrIBX, as well, where you will find so many caring and supportive members. While we wait for others to join in, would you share your concerns/fears about treatment options with us?

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Hello Teresa,

I am new to this blog as well. I have not had this side effect after almost 1 year. I am on 3 antibiotics daily and go for an eye exam every 6-8 weeks as well as a blood draw for liver function. I am just now finding out that it may effect my hearing. My doctor or pharmacist never mentioned about hearing loss. This is something I will check into.

Thanks,
Kate

Kate

Jamie, I was diagnosed ten years ago by CT. My main complaint was cough. I have always had respiratory illnesses starting at age 12 with a bout with Pneumonia, and continuing with perhaps 10 or more Pneumonias since that time along with maybe 25 or 30 bronchial infections and then asthma in the last 10 years.
After being diagnosed with Bronchiectasis (BX) in 2007 I continued with really only a cough and a few respiratory infections. There was not any dramatic reduction in energy and my asthma was under control. i continued to work until 3 years ago and only stopped to begin to do other things like travel and acting and writing.
This all changed a little over two years ago after coming off of the Pacific Crest Trail in California walking up and down 4000 ft mountains in 105 degree heat and feeling perfectly more or less fine.
A month or so after coming off the trail I began to feel unhealthy with increased cough, sinus drainage, increase phlegm production, but most of all an marked decrease in my energy levels.
I saw a several doctors where I receive my medical care but they were sort of baffled until I saw the doctor who diagnosed me with BX. She did another CT scan of my chest and found what seemed to be a slight increase of the damaged in my lungs but maybe not enough to explain my fatigue.
I was an RN for 30 years so did a little more investigation on my own like being checked for “Vally Fever” which causes symptoms of fatigue and is prevalent in the area I was hiking on the PCT. But I didn’t have Valley Fever.
After seeing an ENT doctor I did have a sinus surgery that cleared my sinuses of some areas of infection he said. But again no decrease in my fatigue.
I have found a very good support group at the “Patient” web site for information like diet and exercise and of course personal support.
Since I was in and out of medicine clinic about every 4 to 6 weeks for antibiotics and steroids I decided to try using Azithromycin 250 mg MWF and that has helped with a considerable decrease in infections. I have had one infection since staring the AZ nine months ago but tested for Pseudomonas in my sputum.

I do have a concern with taking the Azithromycin long term as was pointed out by one of the members on our site, for example.
I would like to ask if going to Mayo Clinic in Rochester might be of big help for me, perhaps doing some other regime of antibiotics to decrease the number of infections as has been pointed out. My Pulmonologist here in New Orleans is not familiar with any uses of long term antibiotics and am seeing an infection disease doctor for the AZ.
Russ

@russt, Thank you for the information you provided. Welcome to Mayo Clinic Connect. As in the group, “Patient” that you participate in, we are not here to give medical advice. This site is used for connecting with other people who are here sharing similar diagnoses and medical experiences. I am not a physician, nor do I have a medical degree.

Your post was somewhat familiar to me in the sense that I was recently talking to a distant family member who was diagnosed with Valley Fever- up until then I had never heard of it.
As far as having your sinus surgery; Did you have sinus polyps or how was the surgical aspect approached or decided? When are you seeing the infectious disease doctor? Please keep us updated and let us know what they tell you- it will be a great help to future readers.

I have worked at Mayo Clinic for 17 years so I am quite biased to Mother Mayo. I cannot answer the question whether you should come to Rochester for evaluation but in my honest opinion, I wish everyone could encounter a patient experience like what we offer. I do know that we provide a multidisciplinary approach meaning our ENT surgeons work directly with the Pulmonologists, Allergy specialists and Immunology. If you are interested in seeking care in Rochester- here is the link to make an appointment http://mayocl.in/1mtmR63

I can understand your concern with long term use of antibiotics. I would like to introduce you to other members here discussing the same thing- Please meet @pamelasc1, @ilgrp4e and @windwalker. Have any of you been patients here at Mayo Clinic that you would be willing to advise @russt?

Also, please review some of the information offered within the posts on this link in our MAC group. http://mayocl.in/2qMZJDM You will find some of the information very helpful.

@jamienolson

@russt, Thank you for the information you provided. Welcome to Mayo Clinic Connect. As in the group, “Patient” that you participate in, we are not here to give medical advice. This site is used for connecting with other people who are here sharing similar diagnoses and medical experiences. I am not a physician, nor do I have a medical degree.

Your post was somewhat familiar to me in the sense that I was recently talking to a distant family member who was diagnosed with Valley Fever- up until then I had never heard of it.
As far as having your sinus surgery; Did you have sinus polyps or how was the surgical aspect approached or decided? When are you seeing the infectious disease doctor? Please keep us updated and let us know what they tell you- it will be a great help to future readers.

I have worked at Mayo Clinic for 17 years so I am quite biased to Mother Mayo. I cannot answer the question whether you should come to Rochester for evaluation but in my honest opinion, I wish everyone could encounter a patient experience like what we offer. I do know that we provide a multidisciplinary approach meaning our ENT surgeons work directly with the Pulmonologists, Allergy specialists and Immunology. If you are interested in seeking care in Rochester- here is the link to make an appointment http://mayocl.in/1mtmR63

I can understand your concern with long term use of antibiotics. I would like to introduce you to other members here discussing the same thing- Please meet @pamelasc1, @ilgrp4e and @windwalker. Have any of you been patients here at Mayo Clinic that you would be willing to advise @russt?

Also, please review some of the information offered within the posts on this link in our MAC group. http://mayocl.in/2qMZJDM You will find some of the information very helpful.

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Jamie, thnks for reply. I dont know if you caught it in my text but I was a RN for 30 years, so have to say that I'm not a doctor either.
To answer your question about nasal polyps; I think the surgery was to remove areas of infection.
I have asked my Pulmonologist to give a referral for Mayo to my insurance company. I feel like I'm saying to him that I think I can get better care somewhere else. He should be happy for me right? Sticky situation.
I liked you describtion of Mayo being a coperative experience between the disciplines.
I noticed that Mayo does Stem Cell therapy. My impression is that the success rate is in the lower percentages, but if Mayo is doing it perhaps they have a different success rate. It's $10,000 or more.
I would like to hear more about your experience with antibiotics if you would like to share it.
Best
Russ

@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hi, I’m new to the forum. I was diagnosed with MAC about 11 years ago, at the age of 39, after a chest x-ray for suspected pneumonia. They found nodules on my lungs. I went for about 5 years of pulmonologists “just watching it”… I tried the MAC prescription protocol 3 times and could not tolerate it, last time, put me in hospital 5 days with acute kidney failure. I’ve been through 4 pulmonologists and an Infectious Disease clinic. My latest pulmonologist did bronch, CT scan and blood word on Jan 13 and found I had bronchiectasis and multiple additional bacteria and fungus in my right lung. I have a small portion of my middle right lobe that is “dead.” I am guessing that associates the MAC and bronchiectasis. I am now at a point where they are sending me to another Infectious Disease specialist and have discussed removing that portion of my right lobe that is “not functioning.” I’m looking for anyone in a similar situation that has tried the protocol (ethambutol, rifampin, and azithromycin that could not tolerate it to see what your 2nd and further options were.

@tfritschy

Hello. My name is Teresa and I’ve just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I’m seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of 3 daily AB’s today. I’m in my 50’s and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I’ve faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

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Teresa, I have the same as you! What are the antibiotics they have you on? How are you tolerating them?

@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Welcome to the forum. I have been on that drug protocol twice in the last year and cannot tolerate them. I have now been referred to an infectious disease specialist. Waiting until June 20 for appointment. Other than the standard drugs, has anyone else had luck with others.

Hi new members @suzylulu @russt @kate1320 @tfritschy @dcathell.
How are you doing? I hope that you feel welcome in our MAC group. I also invite you to read through our main discussion

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2pMrIB

In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members. Come on over. Introduce yourselves and ask anything.

@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hello, I have a dead portion in my lung too, a good size chunk actually. My
lungs are so bad that they are considering a double lung transplant. Although to
meet me, you would think I was just fine. I owe my good condition now to
treatment at the Mayo Clinic in JAX. Don't know how long I will feel this good,
but for now I will just enjoy it!
 

@tfritschy

Hello. My name is Teresa and I’ve just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I’m seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of 3 daily AB’s today. I’m in my 50’s and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I’ve faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

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I have the same thing too. I never did the three drug combo. I started
monthly prophylactic antibiotics in 2013. I was diagnosed with MAC in 2005 and
was treated with azithromycin for a short period. Unbeknownst to me, my lungs
were deteriorating steadily until I started at the Mayo in 2013.
 

@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Hi Suzy, ask your doctor about inhaled antibiotics. Learned at a recent
conference that combining tobramycin with another antibiotic like cipro for two
weeks is good.
 

@colleenyoung

Hi Connie,
Several members sharing in this group have bronchiectasis. Some have both MAC and bronchiectasis.
@chinasmom @katemn @beatitnow @megan123 @ling123 @chinasmom @jock007 @flib @mmteach, Connie is asking about the relationship between bronchiectasis and MAC. I hope you can help answer her questions. This is all very new to her.

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Did they indicate at the conference how long to do this regimen?

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