What're the Symptoms of MAC Lung Disease

I got coughing phlegms since July this year. The mucus is clear to white color and occationally yellowish. I also got some shortness of breath because of the phlegms. I was diagnosed as and treated for astham and COPD for a few months. Eventually in November I was hospitalized for sever chest pain, pressures on my lung, coughing blood and SOB. I was then diagnosed as bilateral PE and pneumonia. A month later my sputum sample test results returned showing I have MAC Lung disease. I will be on antibiotics for year. Please anyone has this illness tell me your symptoms, how it's found and what treatment you are currently having or how's your current situation such as your recovery process?

Edited December 7, 2009 at 9:08 pm

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Hi there, MAC is rare in people without HIV. Mine was diagnosed with a bronchoscope lavage. However, I could not take the medication used to treat it. There was also thought to be a mix up in the lab since my open lung biopsy did not grow MAC. I have Sarcoidosis.

Not sure of the symptoms but they are similar to Sarc. I had the phelgm which was thought to be pnuemonia or TB due to xray. But once the open lung biopsy, lung resection, and thoraric surgery were performed my diagnosis was Interstitial Lung Disease (Sarcoidosis) because I had non-caesating granulomas.

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Dear back2normal:
Have had non HIV Mac for at least four yrs. I took treatment for Mac Lung Avium for 18 mo. It was said to
be clear but because the Docs I had were non too smart
and let me go with no back up treatment. I now have a
Mac Lung Absessus that is mostly not treatable. I urge
you to make sure that some type of antibiotics follow you once your cured. I found out too late. A great net
site to answer a lot of your guestions is maclungdisease.org, go to the Tyler, Texas page. It is
great. Some of the symtoms I have are extreme coughing, night sweats, fever, many bouts of bronchitis, weakness when I,m sick and coughing up
horrible amounts of mucous. I have had to give up most of my life because of shortness of breath.
Hope this helps. Would love to hear how you progress. Feel free to e-mail me. Good luck !
Gwyn63

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Thank you for the information. I will have pulmo. dr. and infectious dr. appointments in the next a few weeks. I'll see what they want to exam further. My symptoms now is just some chest presurre, sob and phlegms. I am not sure these are cuase by pulmonary embolism or MAC. It seems exercise can help reduce these sympotms.

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Hi! I just want to keep you posted. Today I saw my infectious specialist and she said I have three sputum samples generated during my hospitaliztion for PE and only one showed MAI positive that is not enough to show I have has this disease. She asked me to make another three samples to test. Also I am thinking since I don't have diarea (though I lost 10 pounds since I started coughing mucus) and fatigue that also made my case non-typical. Now my complains are upper left chest sore and lowere left chest feels heavy, I always feel need deep breath or mild shortness of breaths and coughing mucus (not sure if this is from PE or from MAI?), occationally feel chill(don't know if it's sycologically or physically) . I am glad she give me second chance to test to comfirm.

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dear gywn,
do you know this website which has lots of info regarding the abussesus infection. please let me know if it's a help to you?
thank you
http://forums.ntminfo.org/ShowForum.aspx?ForumID=5

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All the info above is very good for treatment. I have Psuedomonas Aeruganosa in my lungs...it's deadly and only quinolone drugs can slow it down, not completely kill it, and i can't take the side effects of the drug...so, here's what I wrote to another person with lung problems as to how I've been building better lung health by building better general health and in particular reducing inflamation. My lung dr has been truly impressed with results I've gotten and agrees with the dietary/supplements I've taken in the logic behind what I've done. In August I was pretty much 'death sentence' as the Drs didn't know what else to do. Now I'm radically improved in having good volume of air, pretty much clear passages from mucus, irritation and pain only occasional whereas it was severe, coughing only occasional (lungs are still a little sensitive but considering what they've been through I'm still healing). Anyway, at this link is what I've been doing https://www.inspire.com/groups/lung-infections-and-diseases/discussion/need -some-answers-2/?msg_activity=reply_posted&page=last&cmnt_id=725372 I'm now skiing, playing racquetballl, yoga, rock and roll dancing...whereas in August I could barely walk (the quinolone drugs tore up my tendons and connective tissue which is now healed) or breathe. I'm a big believer in cutting down inflamation as I'm doing so well, so, I have to share in the hopes that you may have some success from the things I did.

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I had MAC which was cured about 3 years ago. Now they say I have M abscessus just like you. How long did it take before you got short of breath and tired all the time? I am just beginning to have bad dry coughs, but I am very tired all the time.

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Zophie01:
Sorry it took so long to reply. I have been away.
Wow, you now have M abscessuss too, what bad luck.
I have been gradually getting shorter and shorter of air,
some days I have more air than others. It seems that each time i get a lung infection, it gets more scar tissue
and becomes worse. I have had Mac lung for at least 4yrs., I suspect that it started much earlier. It took over
2 yrs to diagnose. Have the Doc's suggested any treatment for you? They suggested IV treatment with
drugs that were so invasive that they would be worse
than the disease itself. I decided not to take them, and am still thinking that I or the specialists that treated me do not have enough info. Please feel free to e-mail me anytime. Maybe we can help each other.
Gwyn

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I have bronchiectasis with no HIV. It's believed to be a result of childhood pneumonia. I've been treated several times for mac, pseudomonas aeruginosa and aspergillus. Some of the meds are tough to tolerate. I was diagnosed with x-rays, ct scans and bronchoscopies. In addition to meds I have a Hill Rom vest which is supposed to help. The jury is still out on that treatment, for me at least. That came as a result of a consultation at National Jewish Hospital in Denver, an excellent resource.

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