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emport
@emport

Posts: 5
Joined: Mar 04, 2017

Bronchiectasis and staving off recurrent infections

Posted by @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!

REPLY

@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

@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

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Thanks so much for responding!! How are you being treated and is it working?

I was seen by an infectious disease doctor when I originally got pneumonia but not since. They never mentioned MAC

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

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?

@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

@jamienolson, Jamie? Wonderful post .. thank you! Really liked how you put your information .. thank you for jumping in! Hugs! Katherine

@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

sure thing, Katherine! 🙂 Have a nice night!

@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

Thanks so much @jamienolson and @katemn. Would love to hear from @windwalker, @lindam272 and @decosmo!

My symptoms are bad when it’s really cold and dry… or when it’s really hot and humid. Heavy dryness and humidity are both big exacerbators. For management, I’m on nebulized budesonide and formoterol twice a day (or Dulera inhaler), Ipratropium Bromide/Albuterol as needed, Ventolin inhaler as needed.

I also do the Neti pot, which is always helpful. I think I need to do it twice a day every day, as opposed to when I think I need it. I have a flutter valve that I should use more often, as well as hypertonic saline (nebulized). Mucinex is a bit helpful but makes me so spacey.

Just started taking Vitamin A.

Any other recommendations? I start a new project in a week and I am so scared of getting sick. I suffer from physical and mental fatigue.

Thank you in advance!

@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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Hello! Yes, I used to suffer from all of those things. I started treatment
at the Mayo four yrs ago and now the only negative I am dealing with right now
is extreme fatigue. I will have good days where my energy level is decent, but
only for a short while. Some days are couch days.(I am 58 yrs old, so
sometimes I resent couch days)  Still have shortness of breath. I have to
use oxygen at the gym and at night. I am not suffering physically in any way, so
that is a plus. On the upside, I did go dancing last Sat night. It was the first
time in yrs that I have been able to. I had a ball! I think my new meds and
going to the gym made that possible. I guess it depends on the severity of your
bronchiectasis on how much of a comeback you are able to make with good
treatment. It is a progressive disease, and it does not progress at the same
rate for everybody. I have just under 30% lung function and still enjoy life and
get around pretty good. I am told that a double lung transplant is in
my future, but until then, I will enjoy what I have now. I hope this
helps.
 
 
 
 

@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

@windwalker, Terri, love it .. LOVE IT .. and love you! What an attitude .. what a gal! With 30% lung function and going to the gym .. AND “On the upside, I did go dancing last Sat night” .. YOU are in inspiration to us all! If I DARE to start whining every again .. bring out the “wet noodle” whip .. I will deserve it! You go girl! So proud of you! Big Hugs! Katherine

@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

Hi there. Yeah, fatigue is my biggest enemy. Sometimes it is hell when the
spirit wants to and the body won’t let you! Weather used to be a big factor on
my health. The cold would burn my lungs and make me cough, the change in
barometric pressure would always mess me up. Since I was put on a new
antibiotic, I am no longer that sensitive to weather or smells. I still do have
a hard time breathing in humidity though.
 
 

@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

Awe, thanks Katherine. Agh…..sometimes it’s fun to whine!!!
 

@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

Jump to this post

Thank you @katemn

@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!

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?

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

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