Pneumonia, MAC and Aspergillus ?!?

First, take a deep breath and try to relax while we talk about MAC and its treatment.

MAC is a very slow-growing infection that can take a long time to diagnose properly, but there is VERY little risk you die anytime soon.

A 3 day test showing MAC is very preliminary - it only shows you MAY have the infection. It takes 6 - 10 weeks for the type of MAC and how extensive it is to be determined from a sputum culture. Even then, it may not be serious enough to begin treatment with antibiotics, you may be able to manage or even eliminate it with a daily airway clearance routine.

Can you tell me what symptoms led you to go to a pulmonologist? Have you had a CT scan to determine the overall health of your lungs and determine if you have any other lung conditions like Asthma, Bronchiectasis or COPD?

An initial lung scan showed 'schmootz' in the right lung. Pulmonologist told me it was "Avium but we usually don't treat because treatment is so difficult". After complaining and sputum tests only revealing candida, Dr. finally order bronchoscopy with lavage and cultures, which revealed Aspergillius Niger and RML syndrome, caused by infection. I experienced 3 1/2 weeks relief-no coughing, but then cough came roaring back. While waiting for treatment for Aspergillus, Dr. had me do blood work-a month after bronchoscopy which revealed i was now negative for Aspergillus. After a few more weeks of cultures growing, Avium showed up. I was asked to see infectious disease dr. and met with his nurse practitioner who prescribed 3 different antibiotics, 3 times a week "probably for 18 months". I have not yet begun them as my primary wants a base-line EKG, which i intend to do. Also need to have appointment with eye Dr. as one of those meds can cause optical issues. I dread these antibiotics as i know i generally don't tolerate them well. Here is the conundrum i am facing, my symptoms seem to be lessening, I am not coughing the way i was. I am taking the Tessalon Perle to help suppress cough in the night so that I may sleep but that generally wears off, etc. Can i avoid taking these antibiotics is my question. Was it the Aspergillus which was making me cough, not the Avium? How does one know?! Do i need to take them to get rid of Avium anyway---when i asked the nurse practitioner what is the risk of not treating Avium, she answered, "it can get worse." Would love to hear your thoughts. Thank you

I would try the antiobotics and see how you tolerate them. MAC tends to grow if now managed. I’m on my third round of 18 months of drugs. Started ten years ago. Knocked it back a few years each time.
The drugs make you tired. And a bit of gastrointestinal issues. But that settles down at about month 3 of them.
I go for my quarterly eye exams. No issues so far.

@jenniferlp Your pulmonologist's statement "...it was "Avium but we usually don't treat because treatment is so difficult..." tells me they may not be totally familiar with managing and treating Bronchiectasis and MAC/NTM. This is not an indictment - both are rare, and many specialists may only see a case or two per year, compared to dealing with asthma and COPD every day.

Do you have access to one of the Bronchiectasis Care Centers listed below?
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/

@sueinmn Thank you so much for your response; there is one in SD, and Stanford, both in CA. I had my EKG this morning. I also spoke to nurse practitioner's office, her assistants consulted with her, confirming she saw recent blood work, indicating Negative for Aspergillus and she suggested i go ahead. I had suggested I wait a week, journaling my pattern of coughing, etc. She said, coughing will return. My confusion is: which of these two Aspergillus or Avium were causing the coughing, (post nasal drip/ scratchy throat). Sue, your comment that both are 'rare' in interesting as the nurse practitioner with whom I met, made the following comment twice to me: "MAC is the most common disease that no one has ever heard of." I daresay, this is a confounding situation. I just spoke to my primary who suggested, I 'wait and see' and if coughing returns, i should begin meds. Btw, assistants made the comment, that Aspergillus went away because it was treated. I corrected them,
I was only treated with Diflucan for Candida, not for Aspergillus. Unless they are considering the Bronchoscopy lavage/cultures- a treatment.

@westcottkm3040 Thank you for your response. This is good to hear. As I said below, I am at the ready should coughing return. "MAC tends to grow if not managed." is a concerning statement. The nurse practitioner answer when asked, 'what happens if it's not treated?'..."it can get worse". So this is indeed a consideration. I would like to ask you as you are now in your third round of meds and dealing with this, did you wait when you were first diagnosed to begin treatment, or did you diagnosis take a long time before you received or began treatment?

@jenniferlp Are you nebulizing with saline or albuterol, doing any airway, or otherwise trying to clear your lungs without antibiotics? If your doc or NP has not recommended these, they are not familiar with treating MAC and Bronchiectasis.

As to which infection causes coughing, they both do, as does bronchiectasis itself.

@sueinmn No, they have not recommended any of these. I followed the links you sent me Sue and also did a search for someone who is versed in MAC in Los Angeles, I found a Dr. (a pulmonologist) and called, his assistant doesn't know if he is taking on any new patients, he doesn't do 'second opinions'. I hope he will take me on. I was honest with her, I need someone who is knowledgeable about this disease. He is out for another week, she will let me know. Paws crossed, he will see me. I think my Dr.'s clearly have limited knowledge and I think my questions have become annoying to them and that's all i will say about that...no indictment, but I would like to see someone with more knowledge so that I may understand what I am dealing with. Thank you Sue for your expertise.

Hi Sue:
I am actively looking for a specialist in my area. I have spoken to a very nice woman at the Bronchiectasis & NTM Association who is doing some initial guidance for me. Before I begin this regimen of antibiotics, I want to consult with another Dr.
Thank YOU for all your guidance.

@sueinmn I am in touch with a second person at the Bronchiectasis & NTM Association who has given me much information, for which I am most grateful. I also have found another pulmonologist who is versed in MAC, etc. I will be seeing him. Again, thank you so much for your guidance. By the way, I am not taking those three antibiotics and have also become aware of the recently approved med-Brin Supri. Happy Thanksgiving.