I was just diagnosed wit probable MAC ( ct scan). My dentist wants to wait to finish my crown until definitive diagnosis. Is this normal?
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@crepass Hello –
Sorry I missed this post. Do you have any more information on your infection from your pulmonologist? There are varying ways to get a sputum sample. When first diagnosed, I was coughing 24/7 and they just used what I coughed up in the AM for 3 days in a row, delivered to their lab. Later when I had trouble coughing up sufficient sputum for a culture, my doc had me neb with 10% saline in the office – I coughed like crazy & they got enough to sample. My daughter's doc was doing a bronchoscopy on her for another reason, and got a sample during the test (hers was negative, thankfully.)
Maybe the pulmonologist meant that there is some evidence of MAC infection on the CT, but not a lot – as MAC progresses, if not treated, some people begin to show more evidence of infection – pockets or shadows, I've had docs describe them various ways.
The sputum sample, cultured for 6-8 weeks, tells the doc exactly what strain(s) you have. The "bugs" are then subjected to sensitivity testing to see which antibiotics they respond to. This is very important, because various strains respond to different antibiotics. I have M. avium intracellulare and M. gordonae, both of which respond to a combination known as the "Big 3" here – azithromycin, rifampin and ethambutol. I was treated for 18 months until my symptoms and the evidence of infection on the CT resolved. My sputum still tests positive, so I use 7% saline & a bronchdilator to try to keep it down. If I get symptoms again, I may need to restart those antibiotics or different ones (praying not!) Other people with different strains may be treated with other drugs, but almost all must be treated with more than one antibiotic, either in combination or alternating, because NTM (non-tubercular mycobacteria) are notorious for developing drug resistance.
If you have done much reading, here or elsewhere, you are aware that MAC is very slow-growing, needs to be treated for a long time to eradicate it, and occurs just about everywhere in the environment, so reinfection happens if you have bronchiectasis or other risk factors.
One thing you can assure your dentist is that MAC is not contagious to him, his staff, or his other patients.
Good luck with your treatment. Keep us informed & feel free to ask questions.
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Hi Sue, This has been a rough year with COVID and work. I am a nurse in a clinic. Stayed healthy all year doing airway clearance and 3%saline nebs. My ID doctor went on maternity leave. The ct scans are unchanged and sputum still shows Mac. So my choice to see if I could kick it was all for naught. This month I got a virus which landed in an exacerbation. Just sent in my sputum sample to see what’s up. Listening to podcast NTM talk. Made me wonder whether I have gerd or aspirations of some kind, that are keeping me sick. I’m going to practice a healthy gerd regimen until my doctor comes back and hope that the augmentin I am on (given in ER), will calm cough and sputum. Working hard to manage this.
Oh well – It's the time of the year, apparently! I hope your regimen helps until you can see your doc.
I stayed completely well on 7% saline/levalbuterol nebs & inhaled Flovent through Covid 19, including travel and PT grandma daycare – only to come up with a horrid exacerbation 10 days ago. Coughing non-stop 24 hours and short of breath. My PCP is on a well-deserved one-month leave, and my Pulmo is available in August. So yesterday I saw a sub provider, who was more than willing to go with my provider's protocol, and confirmed no pneumonia & no apparent bronchiectasis changes with an x-ray (I was lucky the same radiologist read my last films, and thought to compare them). So we're trying duo-neb and Prednisone with a followup Pulmo appt. Here I though I had the magic formula!
Not exactly how I want to head out camping for 4th of July – hope I have an electric connection there!
Oh im so sorry Sue, did we catch the same thing? 😂. I’m heading to the young, ID md. Tomorrow. That im not really gung-ho about. She admitted that she is not familiar with MAC that much. So, she will look at my sputum culture and let me know if it needs to be treated. There is so much ignorance about MAC it seems. Oh well, I’m trying to get better before heading next month to Zion and Bryce nps. I hope you have a nice trip.
Now that people are out and about the number of infections around is amazing. I hope she has an answer for you.
I just told him I might have an infection(after ct scan). He said to wait and get definitive diagnosis before finishing crown. I’ll call him and try again now that the pulmonologist has said MAC. I’m not on antibiotics yet. He is still trying to get a “deep?” Sputum sample. By hydration , doxycycline, and bronchodilators for next 2 weeks. Hope it works . The pulmonologist also said it’s a “light” case of MAC. Is that a thing? Sorry so many questions. I appreciate your replies.
I'd be really careful with the diagnosis. I was diagnosed with Aspergillosis first time, set me back a year and I found out later that taking Voriconazole (prescribed for Aspergillosis) was harmful for future skin problems. Dermatologist informed me of this. I've never heard of a light case, so maybe ask your doctor exactly what is meant by a light case. Perhaps it's not cavitary; that would be great! Perhaps another reason. There's so much info as we go through this journey that it's overwhelming to keep asking questions and keeping track of all the info. Doctors are stressed about this disease I believe because it is so under diagnosed and SO LITTLE has done to advance this disease since the BIG 3 was first administered for this. Keep asking questions. Best to you on this journey.
Thanks..i have been on azithromycin and ethambutol for a year now(i had bad reaction to rifampin..lo platelets. Have been negative for mac on sputum samples for last 10 months. Looking forward to ct scan in February and maybe off antibiotics. Will always need airway clearance because of bronchiectasis. Never diagnosed with cavitation. Happy holidays. Cindy
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