1. < COPD: Chronic obstructive pulmonary disease

Anyone here who has COPD and TB and was treated at the Mayo Clinic?

Posted by janrn1 @janrn1, Jun 2, 2020

I am deciding where I can go for help with my COPD. Which clinic is best and I have newly diagnosed TB and need treatment there also. Please help

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

janrn1 | @janrn1 | Jun 7, 2020
In reply to @sueinmn "@sews MAC is Mycobacterium Avium Complex - Mycobacteria are a slow growing class of bacteria that..." + (show)
@sueinmn

@sews MAC is Mycobacterium Avium Complex - Mycobacteria are a slow growing class of bacteria that include TB, and several strains are widespread in air, water and soil. For most people, they are not problematic., but for those with some lung conditions, like bronchiectasis or cystic fibrosis, who have trouble clearing mucus, and therefore contaminants from their lungs, there is risk of infection. Being warm,dark & moist, the lung provides an ideal breeding ground for opportunistic infection to set in. I believe the research is now showing some people with COPD are also at elevated risk for developing MAC infections, but have not researched it thoroughly.

Some symptoms of MAC infection include fatigue, weight loss, increased shortness of breath, worsening cough with increased green/yellow sputum, fever and night sweats. Not every person has all the symptoms, and they usually come on gradually. MAC is diagnosed through a sputum culture, which must be sent to a specialized lab and takes up to 6 weeks to grow out.

Treatment is generally with a long course of multiple antibiotics, though mild cases may just be monitored and treated with airway clearance techniques.
Sue

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I have most of those symptoms, But I'm assuming that it will have to grow longer to see exact bacteria that continues to grow? I had a positive test for MAC. They are choosing not to treat it but I feel so bad I think something has to be treated. The only thing that my Dr is doing now is Busonomide 0.5 through a nebulizer. This is my third day into it and I do not feel a difference in my breathing or fatigue.Any advice? I am thinking maybe a visit to the Mayo clinic might be good.

REPLY
janrn1 | @janrn1 | Jun 7, 2020
In reply to @sueinmn "@janrn1 Yes, the sensitivity testing is only done in a few labs and tkes quite a..." + (show)
@sueinmn

@janrn1 Yes, the sensitivity testing is only done in a few labs and tkes quite a while.

I took the meds for 18 months, the last 6 it was daily because my cultures were still positive and I had lesions in my lungs. The longer I was on the meds, the more side effects I was experiencing, so the id doc finally stopped them about 6 months ago and I
have just been nebbing with 7% saline and levalbuterol. My lungs looked clearer and he said some people never completely clear the MAC. We shall see how things are going, I see pulmo next week and expect a repeat CT to be ordered soon. Not having any symptoms so hoping for good news.

There are a number of people on this group who have MAC and do not take antibiotics, either because their symptoms are mild, or they do not tolerate them.

Let us know whag you learn.
Sue

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Problem is Sue, I have pretty bad symptoms and feel like I am going downhill quickly.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 7, 2020

@janrn1, you may wish to also follow the MAC & Bronchiectasis support group here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 7, 2020

@janrn1 I think your doctor is taking a very typical approach to treatment. It is customary to wait for the sensitivity test results before commencing antibiotics because the regimen is difficult and different drugs are effective on different mycobacteria.

Even on the antibiotics, it was at least 3 months before I began to see improvement in my MAC, and over a year for the fatigue to lessen. I don't think that's unusual as MAC is as slow to go away as it is to grow.

In this time of covid-19, just the logistics of traveling to Mayo, staying in hotels, etc while feeling ill would be enough to make me wait for the tests and the CT. You can also ask your doctors to consult with Mayo or National Jewish Health about the best course of action once all results are in.
When it comes to MAC or TB, treatment takes a long time, can be unpleasant, and teaches one much about patience.
Sue

REPLY
sews | @sews | Jun 7, 2020
In reply to @sueinmn "@sews MAC is Mycobacterium Avium Complex - Mycobacteria are a slow growing class of bacteria that..." + (show)
@sueinmn

@sews MAC is Mycobacterium Avium Complex - Mycobacteria are a slow growing class of bacteria that include TB, and several strains are widespread in air, water and soil. For most people, they are not problematic., but for those with some lung conditions, like bronchiectasis or cystic fibrosis, who have trouble clearing mucus, and therefore contaminants from their lungs, there is risk of infection. Being warm,dark & moist, the lung provides an ideal breeding ground for opportunistic infection to set in. I believe the research is now showing some people with COPD are also at elevated risk for developing MAC infections, but have not researched it thoroughly.

Some symptoms of MAC infection include fatigue, weight loss, increased shortness of breath, worsening cough with increased green/yellow sputum, fever and night sweats. Not every person has all the symptoms, and they usually come on gradually. MAC is diagnosed through a sputum culture, which must be sent to a specialized lab and takes up to 6 weeks to grow out.

Treatment is generally with a long course of multiple antibiotics, though mild cases may just be monitored and treated with airway clearance techniques.
Sue

Jump to this post

Thanks. I wear oxygen 24/7 so do experience shortness of breath and cannot be without oxygen. No other symptpms

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 10, 2020
In reply to @janrn1 "Thank you Colleen, where do I find those? Group Directory?" + (show)
@janrn1

Thank you Colleen, where do I find those? Group Directory?

Jump to this post

Hi @janrn1, yes. All groups are listed in the Group Directory https://connect.mayoclinic.org/groups/

Here is the direct link to the MAC & Bronchiectasis group here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

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