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DiscussionAnyone been mistakenly diagnosed with MAC Lung disease but not MAC?
MAC & Bronchiectasis | Last Active: Jul 19 11:19am | Replies (31)Comment receiving replies
Replies to "You need a solid confirmation that you do indeed have MAC and a solid treatment plan...."
An Infectious Disease Dr. is your best bet. They seem to know more than a Pulmonologist. My Pulmonologist talks a lot to my Infectious Disease DR and they work closely together. Infectious Disease diagnoses and treats infection while the Pulmonologist treats the breathing problems and mucus production. The pulmonologist also got my airway clearance vest approved for insurance and keeps my asthma under control. He does my bronchoscopy when needed as well to wash the mucus out of my lungs.
Had solid confirmation from sputum tests by pulmonolgist who diagnosed MAC Lung disease. He referred me to an infectious and contagious specialist who offered me the extensive antibiotics treatment but informed me of the dangers of this treatment and I decided against taking the only treatment available for MAC Lung disease. My PCP recommended that I take the treatment but I believed that the treatment was worse than the disease, therefore, I did not do the antibiotics treat. I continued to see that same pulmonolgist for almost 4 years, until he left for employment elsewhere. He referred me to another pulmonolgist, since he was leaving.
I saw the pulmonolgist he referred me to once and he retired. My next routine appointment, I saw a different doctor and she did the most thorough of all my records and she ordered more sputum cultures because my condition was not in line with someone who had MAC Lung disease for 4 years. The repeat sputum cultures didn't show the bacteria that had previously been found on sputum cultures. So, I was shocked by these results but extremely happy.
I haven't been able to see a pulmonolgist since this discovery but will be seeing a different pulmonolgist next month.
I was just curious to know if this had happened to others.