1. < MAC & Bronchiectasis

Bronchiectasis and staving off recurrent infections

Posted by emport @emport, Mar 4, 2017

I'm 54, nonsmoker, and was diagnosed with bronchiectasis and mild asthma 3 years ago after a bad run of double pneumonia. The infections are becoming so frequent -- from a few months apart before to a couple of weeks. When I get infected, I go on 14 days of levacquin (750) and prednisone (40 and taper). It seems to work, but I get sick again very quickly. The symptoms are sore throat, major sinus issues, then coughing, bronchitis and fever. Also, my ability to think, work and engage in life is greatly compromised.

Has anyone worked with someone in the immunology field to try and build up their immune system? Is this done? Also, would it help to get vitamin injections? Any other ideas? I am desperate!

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2017
In reply to @jamienolson "Hello @emport and Welcome to the community! I would like to introduce you to others that..." + (show)
@jamienolson

Hello @emport and Welcome to the community!

I would like to introduce you to others that are here discussing living with Bronchiectasis . Please meet memebers: @windwalker, @lindam272 and @decosmo- would you all care to share you experiences with @emport? Do any of you also suffer from sore throat, major sinus issues, ability to think coughing, and fever? How are you dealing with it?

@emport, does the time of year effect your symptoms? How have you been managing them thus far?

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<br><br><br><br><br>Awe, thanks Katherine. Agh.....sometimes it's fun to whine!!!<br> <br><br>

REPLY
emport | @emport | Mar 7, 2017
In reply to @katemn "Dear @emport, ! was diagnosed with MAC in 2007 and unfortunately due to lack of knowledge..." + (show)
@katemn

Dear @emport, ! was diagnosed with MAC in 2007 and unfortunately due to lack of knowledge and information that can be found on this wonderful Forum I did not go on the antibiotic treatment until October 2011. I was on 4-5 antibiotics for thirty months due to the severity of my condition. I was on: : Azithromycin 250mg/Avelox 400mg/2-Rifampin (rifubutin) 300mg/Amikacin 2ml-inhaled and Ethambutol 800mg.

Due to previous difficulty adjusting to drugs I chose to add just one antibiotic per week so that I would know which drug was/if caused a side effect. Yes I did have fatigue, sleep disturbance, loss of appetite .. BUT in time I could deal well with my life .. working out and living life! Now I have been “stable” on off ALL antibiotics since May 2014 .. so there IS life after the treatment!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Read .. why? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way.

Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Sending you a Big Hug in this tough time. Katherine

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Thank you @katemn

REPLY
emport | @emport | Mar 7, 2017
In reply to @jamienolson "Hello @emport and Welcome to the community! I would like to introduce you to others that..." + (show)
@jamienolson

Hello @emport and Welcome to the community!

I would like to introduce you to others that are here discussing living with Bronchiectasis . Please meet memebers: @windwalker, @lindam272 and @decosmo- would you all care to share you experiences with @emport? Do any of you also suffer from sore throat, major sinus issues, ability to think coughing, and fever? How are you dealing with it?

@emport, does the time of year effect your symptoms? How have you been managing them thus far?

Jump to this post

Thank you @windwalker!

REPLY
jock007 | @jock007 | Apr 23, 2017

I'm 65, nonsmoker, diagnosed with bronchiectasis in September. I was tested for immune deficiency with regard to pneumonia and I'm a candidate for gamma globulin infusions. Have you been tested for immune deficiency?

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 23, 2017
In reply to @jock007 "I'm 65, nonsmoker, diagnosed with bronchiectasis in September. I was tested for immune deficiency with regard..." + (show)
@jock007

I'm 65, nonsmoker, diagnosed with bronchiectasis in September. I was tested for immune deficiency with regard to pneumonia and I'm a candidate for gamma globulin infusions. Have you been tested for immune deficiency?

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<br><br><br><br><br>Hello. I am not sure if I have ever been tested for that or not. I recently <br>had major lab work run on me, but I am not certain what all they checked for <br>because I have not looked up every single code yet. Do you know the initials <br>they use for that? Thanks, Terri M.<br> <br><br>

REPLY
thumperguy | @thumperguy | Apr 7, 2021
In reply to @katemn "@emport I also was a nonsmoker , had been diagnosed with asthma, had TERRIBLE pneumonia for..." + (show)
@katemn

@emport I also was a nonsmoker , had been diagnosed with asthma, had TERRIBLE pneumonia for over 3 months .. 5 rounds of antibiotics, 3 rounds of steroids .. SO sick. Finally my Pulmonologist had my sputum cultured. It came back showing that I had MAC .. Mycobacterium Avium Complex. She then sent me to an Infectious Disease doctor who confirmed it. I can only speak for myself .. but I had never in my life heard of such a thing .. but was determined to get to the bottom of it .. went to Mayo Clinic, Rochester MN who then confirmed it.

So if I was sitting in your shoes .. it can't hurt to request a sputum culture working with an Infectious Disease doctor just to rule out MAC. Frankly if I was you .. doesn't sound like your problem is building up your immune system .. your issue is getting to the ROOT cause of what is going on in your body. You can't put pretty clothes over a dirty body .. gotta clean up that body before putting on the ball gown! Just my opinion. If I was you .. I'd seek out the root cause .. not just keep tossing short term antibiotics at your poor body. Hope just a few of these thoughts help you. Sending you a hug in this tough time! Katherine

Jump to this post

“You can’t put pretty clothes over a dirty body .. gotta clean up that body before putting on the ball gown! Just my opinion.”

REPLY
1 reply
thumperguy | @thumperguy | Apr 7, 2021
In reply to @thumperguy "“You can’t put pretty clothes over a dirty body .. gotta clean up that body before..." + (show)
@thumperguy

“You can’t put pretty clothes over a dirty body .. gotta clean up that body before putting on the ball gown! Just my opinion.”

Jump to this post

“ You can’t put pretty clothes over a dirty body .. gotta clean up that body before putting on the ball gown! Just my opinion.”

And a cogent opinion it is Kate.

REPLY
glendamoseley1 | @glendamoseley1 | Apr 8, 2021
In reply to @katemn "@emport I also was a nonsmoker , had been diagnosed with asthma, had TERRIBLE pneumonia for..." + (show)
@katemn

@emport I also was a nonsmoker , had been diagnosed with asthma, had TERRIBLE pneumonia for over 3 months .. 5 rounds of antibiotics, 3 rounds of steroids .. SO sick. Finally my Pulmonologist had my sputum cultured. It came back showing that I had MAC .. Mycobacterium Avium Complex. She then sent me to an Infectious Disease doctor who confirmed it. I can only speak for myself .. but I had never in my life heard of such a thing .. but was determined to get to the bottom of it .. went to Mayo Clinic, Rochester MN who then confirmed it.

So if I was sitting in your shoes .. it can't hurt to request a sputum culture working with an Infectious Disease doctor just to rule out MAC. Frankly if I was you .. doesn't sound like your problem is building up your immune system .. your issue is getting to the ROOT cause of what is going on in your body. You can't put pretty clothes over a dirty body .. gotta clean up that body before putting on the ball gown! Just my opinion. If I was you .. I'd seek out the root cause .. not just keep tossing short term antibiotics at your poor body. Hope just a few of these thoughts help you. Sending you a hug in this tough time! Katherine

Jump to this post

@katemn hi, although this post seems to be from 2017, can you tell me more about getting to the root cause? What did you find out what the root cause for you? Thank you! Glenda

REPLY
1 reply
rocky0814 | @rocky0814 | Apr 8, 2021
In reply to @glendamoseley1 "@katemn hi, although this post seems to be from 2017, can you tell me more about..." + (show)
@glendamoseley1

@katemn hi, although this post seems to be from 2017, can you tell me more about getting to the root cause? What did you find out what the root cause for you? Thank you! Glenda

Jump to this post

Lucky I took a bad fall in January and my forehead hit the pavement while carrying 2 heavy bags from a store. 2 girls who worked there came running out and called an ambulance. They did a CT scan on my head and neck. The Doctor told me my head and next wer fine, BUT, he could see a node at the top of my right lung. I then set up a full CT scan of my lungs and that was the only node I had. The Doctor removed a portion of the lung and got all the cancer out but that air leak happened and I need for someone who knows about this to give me some advice......Like another Thoracic Surgeon. That's why I contacted the Mayo Clinic.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 8, 2021
In reply to @rocky0814 "Lucky I took a bad fall in January and my forehead hit the pavement while carrying..." + (show)
@rocky0814

Lucky I took a bad fall in January and my forehead hit the pavement while carrying 2 heavy bags from a store. 2 girls who worked there came running out and called an ambulance. They did a CT scan on my head and neck. The Doctor told me my head and next wer fine, BUT, he could see a node at the top of my right lung. I then set up a full CT scan of my lungs and that was the only node I had. The Doctor removed a portion of the lung and got all the cancer out but that air leak happened and I need for someone who knows about this to give me some advice......Like another Thoracic Surgeon. That's why I contacted the Mayo Clinic.

Jump to this post

Hi @rocky0814, welcome to Mayo Clinic Connect. I might suggest that you join the discussions in the lung cancer group here:
- Lung Cancer https://connect.mayoclinic.org/group/lung-cancer/

Mayo Clinic has one of the largest and most experienced thoracic surgery practices in the United States, with campuses in Arizona, Florida and Minnesota. Staff skilled in dozens of specialties work together to ensure quality care and successful recovery. https://www.mayoclinic.org/departments-centers/thoracic-surgery/sections/doctors/drc-20421046

Rocky, Have you already contacted Mayo Clinic? If not, here is the contact information http://mayocl.in/1mtmR63

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