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

Posted by janrn1 @janrn1, Tue, Jun 2 2:51pm

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

Hi @janrn1,
Allow me to tag fellow members @waterboy @djallan @windwalker @sueinmn and @danielad, who may have further information for you about finding treatment at a major treatment center for COPD and TB. You can also read some further experiences in these discussions:

– Zephyr Valve Procedure at Mayo Jacksonville and/or Scottsdale. https://connect.mayoclinic.org/discussion/zephyr-valve-procedure-at-mayo-jacksonville-andor-scottsdale/
– Recently diagnosed with active TB – what to expect? https://connect.mayoclinic.org/discussion/recently-diagnosed-with-active-tb-what-to-expect/

In the meantime, if you would like to seek help from Mayo Clinic, please call one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63.

Janm1, which Mayo Clinic location would be the most convenient for you? How long have you been living with COPD?

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@janrn1 HI Jan, I am a lung patient – asthma, bronciectasis and mycobacteria avium complex (MAC – a relative of TB), but not a Mayo patient. What I have learned in this journey is that you need both a lung doc well-versed in your condition and an infectious disease doc, preferably people who are accustomed to working together. If you are located in an area with multi-disciplinary clinics, I would start there. While Mayo is awesome, it helps in the long run to have a local team – maybe working in tandem with the Mayo docs – that is what my brother does with his complicated asthma condition.
If you let us know where you are located, there will be someone in the group with a suggestion for you.
Sue

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@janrn1 – Welcome to Mayo Connect. I am a lung cancer survivor and have COPD. I don't use Mayo because I'm in New England and use Mass General. There is no Mayo here, or close to here. I take a train there and back. There are many fine hospitals throughout the country if either hospital is out of your range. While you hunt for a team that suits you Connect is a wonderful place to meet people who have the same problems as you do and who offer support and tips and information that can be invaluable. If there is anything that I can help with please let me know.

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@sueinmn

@janrn1 HI Jan, I am a lung patient – asthma, bronciectasis and mycobacteria avium complex (MAC – a relative of TB), but not a Mayo patient. What I have learned in this journey is that you need both a lung doc well-versed in your condition and an infectious disease doc, preferably people who are accustomed to working together. If you are located in an area with multi-disciplinary clinics, I would start there. While Mayo is awesome, it helps in the long run to have a local team – maybe working in tandem with the Mayo docs – that is what my brother does with his complicated asthma condition.
If you let us know where you are located, there will be someone in the group with a suggestion for you.
Sue

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Hi Sue, I am in Lexington VA and about an hour and 30minutes away from the University Medical Center.TT
My lung culture they say will not be done until July for final results to establish MAC or TB. I do need an infectious disease wizard . I am not feeling well and can't imagine waiting 50 days for the final results. I am having a CT on Friday. Thanks for your help Sue

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@colleenyoung

Hi @janrn1,
Allow me to tag fellow members @waterboy @djallan @windwalker @sueinmn and @danielad, who may have further information for you about finding treatment at a major treatment center for COPD and TB. You can also read some further experiences in these discussions:

– Zephyr Valve Procedure at Mayo Jacksonville and/or Scottsdale. https://connect.mayoclinic.org/discussion/zephyr-valve-procedure-at-mayo-jacksonville-andor-scottsdale/
– Recently diagnosed with active TB – what to expect? https://connect.mayoclinic.org/discussion/recently-diagnosed-with-active-tb-what-to-expect/

In the meantime, if you would like to seek help from Mayo Clinic, please call one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63.

Janm1, which Mayo Clinic location would be the most convenient for you? How long have you been living with COPD?

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I was diagnosed in August of 2015. I quit smoking that day. I read that a few of the Mayo Clinics may be better for infectious disease Doctors than others. Can you make a recommendation on which clinic is best for my situation?

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@janrn1

Hi Sue, I am in Lexington VA and about an hour and 30minutes away from the University Medical Center.TT
My lung culture they say will not be done until July for final results to establish MAC or TB. I do need an infectious disease wizard . I am not feeling well and can't imagine waiting 50 days for the final results. I am having a CT on Friday. Thanks for your help Sue

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@janrn1 I understand the desire to find out quickly what is going on. However, mycobacteria are very slow-growing and it is vital for the docs to know exactly which strain you have and which antibiotic(s) it is susceptible to before commencing treatment. As far as I know there's no way to speed up the culture growth – it takes 6 weeks or more to grow the bacteria then challenge it with a variety of antibiotics to determine effective treatment.

What symptoms are you experiencing? It is possible there are meds, oral, inhaled, or nebulized, that you can begin before the exact diagnosis to help with shortness of breath, chest tightness, etc. The scheduled CT tells me whatever doc you have right now is intent on helping figure things out.

Good luck, let us know what you learn.
Sue

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@sueinmn

@janrn1 I understand the desire to find out quickly what is going on. However, mycobacteria are very slow-growing and it is vital for the docs to know exactly which strain you have and which antibiotic(s) it is susceptible to before commencing treatment. As far as I know there's no way to speed up the culture growth – it takes 6 weeks or more to grow the bacteria then challenge it with a variety of antibiotics to determine effective treatment.

What symptoms are you experiencing? It is possible there are meds, oral, inhaled, or nebulized, that you can begin before the exact diagnosis to help with shortness of breath, chest tightness, etc. The scheduled CT tells me whatever doc you have right now is intent on helping figure things out.

Good luck, let us know what you learn.
Sue

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Thank you Sue, My sputum sample was positive for MAC they had it for several weeks. Now they will test for sensitivities which will take more time. At this point, they want to treat the COPD but not treat the MAC as now. My Pulmonologist is overseeing all this now and does not want to treat the MAC as of now. I will keep you posted. Did you take medications for 1 year? My Pulmonoligist is going to treat my other symptoms od COPD right now.

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@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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What is Mac……….I am not familiar with this acronymn but do have COPD

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@sews

What is Mac……….I am not familiar with this acronymn but do have COPD

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@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

REPLY
@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.

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

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

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