Asthma, COPD, CVID and MAC

Posted by bennb023 @bennb023, Thu, Jul 25 1:21pm

I am 63 yrs old and have been dealing with asthma, copd, Mac, and CVID. I do pretty well and am still working full time. Any others have MAC?

@bennb023
I'm a 64 year old COPD sufferer. I was diagnosed about 13 years ago. At that time i quit smoking and took up exercise. I work fulltime and exercise at a high level. Up until 2016 I never had a lung infection. In Oct of 2016 I was admitted into the hospital with pneumonia. I recovered. Then in March of 2019 I was admitted a second time for pneumonia. After my release my first chest x-ray showed a small area of infection. We waited until June for the repeat x-ray. That x-ray showed a recurrence of the pneumonia, although I didn't feel sick either time. I just finished a course of oral antibiotics (after the second but not the first x-ray). I have a ct scan next week. If it still shows an infection my primary will refer me to a pulmonologist. My primary doesn't believe my COPD is severe enough to be the cause of an auto-immune disease that is causing these recent lung infections. And if I had MAC or CVID why did I have my first lung infection over 10 years after I quit smoking? However, I'm afraid he is wrong and I have MAC or CVID. How did you get diagnosed? What specialist diagnosed you?

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benn, I don't know where you live, or how your primary care physician determined that your COPD isn't bad enough to see a pulmonologist. You are 64 so you will be eligible for Medicare soon….. get to a pulmonologist, get a lung function test done. Your bouts with pneumonia scare me. You have done two great things…. quit smoking and started a good exercise regiment. Have you been checked for Alpha 1… it is, and I am one, a genetic condition. You can be tested for free…. go to alpha1.org. It is a 1 in 2500 chance, but worth the effort, especially for your family if you are tested positive. I am not a medical professional in any way, but am a COPD ALPHA1 patient, will turn 70 in OCT, have a wonderful pulmonologist at Mayo, in Rochester MN, am on three different nebulizer medicines, on 2L O2 at night, and on a antibiotic. At about 25 EVERYONES pulmonary function decreases, when you quit smoking you returned to a healthy slope of decay, just at a lower level…. so it is important to know where you started. Good Luck and keep up the good work.

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@waterboy thank you I will look into an alpha 1 test as well as MAC and CVID tests (although I did have a normal sputum test)

I remember when I only suffered with COPD and lived in fear of my lung cancer from my yearly chest x-ray results. Now I know those were the naive, carefree days-gone forever. There are so many more hideous smoking related conditions to ponder: CVID, MAC and Alpha 1 ,to name a few. It wouldn't be so bad if the docs came up with just 1 cure for every 3 new lung diseases. Unfortunately, medicine is good at identifying and cataloging new diseases but so much at treating them. I wonder if by the time I die from lung disease, it will be a newly discovered disease, and will bear my name.

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Hi @bennb023 I wanted to join @waterboy and @joelars in welcoming you to Connect.

I wanted to share the following discussion and additional group as you may be able to learn from what others have said and may be able to find support.

Copd, pulmonary fibrosis, mac bacterial infection and honeycomb lung – https://connect.mayoclinic.org/discussion/copd-pulmonary-fibrosis-mac-bacterial-infection-and-honeycomb-lung/

MAC & Bronchiectasis – https://connect.mayoclinic.org/group/mac-bronchiectasis/

How long since you were diagnosed with these various conditions?

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@ethanmcconkey

Hi @bennb023 I wanted to join @waterboy and @joelars in welcoming you to Connect.

I wanted to share the following discussion and additional group as you may be able to learn from what others have said and may be able to find support.

Copd, pulmonary fibrosis, mac bacterial infection and honeycomb lung – https://connect.mayoclinic.org/discussion/copd-pulmonary-fibrosis-mac-bacterial-infection-and-honeycomb-lung/

MAC & Bronchiectasis – https://connect.mayoclinic.org/group/mac-bronchiectasis/

How long since you were diagnosed with these various conditions?

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@ethanconkey
I meant to welcome @bennb023 and @ waterboy in the group, as well and I hope my attempt at humor didn't offend you.

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@joelars

@bennb023
I'm a 64 year old COPD sufferer. I was diagnosed about 13 years ago. At that time i quit smoking and took up exercise. I work fulltime and exercise at a high level. Up until 2016 I never had a lung infection. In Oct of 2016 I was admitted into the hospital with pneumonia. I recovered. Then in March of 2019 I was admitted a second time for pneumonia. After my release my first chest x-ray showed a small area of infection. We waited until June for the repeat x-ray. That x-ray showed a recurrence of the pneumonia, although I didn't feel sick either time. I just finished a course of oral antibiotics (after the second but not the first x-ray). I have a ct scan next week. If it still shows an infection my primary will refer me to a pulmonologist. My primary doesn't believe my COPD is severe enough to be the cause of an auto-immune disease that is causing these recent lung infections. And if I had MAC or CVID why did I have my first lung infection over 10 years after I quit smoking? However, I'm afraid he is wrong and I have MAC or CVID. How did you get diagnosed? What specialist diagnosed you?

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I was diagnosed by positive sputum cultures and the colony was visible in a ct.

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@ethanmcconkey

Hi @bennb023 I wanted to join @waterboy and @joelars in welcoming you to Connect.

I wanted to share the following discussion and additional group as you may be able to learn from what others have said and may be able to find support.

Copd, pulmonary fibrosis, mac bacterial infection and honeycomb lung – https://connect.mayoclinic.org/discussion/copd-pulmonary-fibrosis-mac-bacterial-infection-and-honeycomb-lung/

MAC & Bronchiectasis – https://connect.mayoclinic.org/group/mac-bronchiectasis/

How long since you were diagnosed with these various conditions?

Jump to this post

Thank you for the welcome. I was diagnosed with copd in 2004, cvid in 2017,and Mac in 2015. Please don’t worry. Not offended by your humor. I think we need a big dose of humor to help deal with all of this!

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@ethanmcconkey

Hi @bennb023 I wanted to join @waterboy and @joelars in welcoming you to Connect.

I wanted to share the following discussion and additional group as you may be able to learn from what others have said and may be able to find support.

Copd, pulmonary fibrosis, mac bacterial infection and honeycomb lung – https://connect.mayoclinic.org/discussion/copd-pulmonary-fibrosis-mac-bacterial-infection-and-honeycomb-lung/

MAC & Bronchiectasis – https://connect.mayoclinic.org/group/mac-bronchiectasis/

How long since you were diagnosed with these various conditions?

Jump to this post

Thank you for the share and welcome. I am greatful for any and all info.

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Hi @benn023 My diagnosis was pneumonia. I completed antibiotic treatments. the follow up x ray showed a small area of infiltrate which the doc said is lingering pneumonia. He prescribed antibiotics. I just finished those and I'm scheduled for the follow up ct next week. My question is what is the difference between pneumonia and CVOD and MAC

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I read that cvid and mac are autoimmune diseases that may be but don't have to be related to copd. Is this true and if so does this mean that unlike copd it may be curable"

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@joelars

Hi @benn023 My diagnosis was pneumonia. I completed antibiotic treatments. the follow up x ray showed a small area of infiltrate which the doc said is lingering pneumonia. He prescribed antibiotics. I just finished those and I'm scheduled for the follow up ct next week. My question is what is the difference between pneumonia and CVOD and MAC

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@joelars – @benn023.
There are variants to all of these diseases and some can be fatal.

Pneumonia is a virus or bacterial infection that usually goes away with treatments.
https://www.mayoclinic.org/diseases-conditions/pneumonia/symptoms-causes/syc-20354204

COPD is a chronic inflammatory of the lungs which restricts breathing. Right now there are no cures and it is progressive.
https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679

MAC is a bacterium that can hit people with immune problems.
MAC is primarily a pulmonary pathogen that affects individuals who are immune compromised (eg, from AIDS, hairy cell leukemia, immunosuppressive chemotherapy). In this clinical setting, MAC has been associated with osteomyelitis; tenosynovitis; synovitis; and disseminated disease involving the lymph nodes, the CNS, the liver, the spleen, and the bone marrow
eMedicine Logo

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@merpreb

@joelars – @benn023.
There are variants to all of these diseases and some can be fatal.

Pneumonia is a virus or bacterial infection that usually goes away with treatments.
https://www.mayoclinic.org/diseases-conditions/pneumonia/symptoms-causes/syc-20354204

COPD is a chronic inflammatory of the lungs which restricts breathing. Right now there are no cures and it is progressive.
https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679

MAC is a bacterium that can hit people with immune problems.
MAC is primarily a pulmonary pathogen that affects individuals who are immune compromised (eg, from AIDS, hairy cell leukemia, immunosuppressive chemotherapy). In this clinical setting, MAC has been associated with osteomyelitis; tenosynovitis; synovitis; and disseminated disease involving the lymph nodes, the CNS, the liver, the spleen, and the bone marrow
eMedicine Logo

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thanks @merpreb so I can probably rule out MAC (unless I have hairy cell leukemia and I think that would come up in blood tests?) what about cvid? (Assuming the next ct scan I still have the infection, what would you call pneumonia that responds to antibiotics but keeps returning or a small portion remains? ANd what if the infection was greatly reduced by the antibiotics but a vestige remains? Do I just continue with another round of antibiotics?

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@j oelars- I'm not a medical professional so I really can't give you professional medical advice. It will be up to your doctor to decide whether you need more medicine, depending on what didn't work. Did you have the same antibiotic both times? Sometimes it take a while to clear up pneumonia, depending on whether it's bacterial or viral. Do you know what the names of the medicines that you have taken?

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@merpreb I know I had viral and bacterial pneumonia in March (the only other time I had pneumonia, 3 years ago, it was just bacterial) I don't know the names of any of the antibiotica. But as I stated in my previous post, I'm feeling much better (actually normal) so the antibiotic must have done some good. I realize my subjective feelings aren't the acid test, the upcoming ct scan is. (still, if I can feel as good as I do now, I'd declare myself cured).
what I neglected to mention through this is when I was hospitalized in March I walked out against doctor's orders because I felt so much better. The hospital did give me orals to take when I left, but my walking out early may have had something to do with this problem which I created in its inception by heavy smoking. Of all my life's challenges it turns out I was my worst enemy. That ain't easy to live with.

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@joelars– I think at time we all are our own best enemy! Best thing to do is to try not to do it again and listen to your doctor! You are a lawyer not a doctor so you aren't the professional here, lol. But really leave the medical stuff to him, can you do that and stop worrying?

Liked by joelars

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