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New to MAC and considering treatments options: What did you do?
Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!
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Hi,
I did not have a referral. I just went in their website and filled out the form requesting an appointment. They then had someone call to make a phone appointment with a nurse who took all my healthcare information and asked me many questions. They requested that I have sent to them, the last 2 years of medical records. A panel of professionals reviewed my information and came up with a plan for testing for my visit. I saw a pulmonologist, gastroenterologist, allergy and immunology doctor and infectious disease doctor. I was at NJH for a week. The testing started on Monday and finished on Friday. It took about 2 months to get my appointment. Then, it took about 2 months waiting for test results and follow up with the doctor. Please let me know if you have any further questions.
Thanks, very helpful.
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Hug
1 ReactionThank you so much for the hint of using yogurt while nebulizer. It has been so helpful! ❤️
This is excellent advice; don’t delay in getting in with other physicians but research on your own is imperative as well. Sue’s advice is spot on.
The result from my bronchoscopy was AFB Negative Smear and AFB Positive Culture. Does this mean the disease is "active" enough to be treated? If you are positive MAC with evidence of lung damage on CT Scan why do they not go ahead with treatment to prevent further progression and damage?
@cwal Welcome to Mayo Connect, and the discussions on MAC & Bronchiectasis.
I would like to introduce you to our discussion by newly diagnosed people -
https://connect.mayoclinic.org/discussion/new-to-mac-1/
There you will find a lot of information and a long discussion of when to treat.
The short answer is, "It depends." Yes, I hate that too! MAC is treated not with a "Z-Pac" or other short course of antibiotics, but with a long (at least 12 months) regiment of 3 powerful antibiotics that have onerous side effects for some people. For people who have mild MAC, are asymptomatic, have little evidence (in a CT scan) of extensive lung involvement, or have other health issues, often the answer is to wait and watch. This strategy is combined with a daily regiment of airway clearance, and for many of us halts the progression of MAC without the harsh effects of the drugs.
Soem other discussions that may help you are: Whether to treat -
https://connect.mayoclinic.org/discussion/new-to-mac-1/
Airway Clearance:
https://connect.mayoclinic.org/discussion/mucociliary-escalator/
Other treatments:
https://connect.mayoclinic.org/discussion/saline-nebulized-inhalation/
What led you to be tested?
Sue
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2 ReactionsThank you for your reply. I will check the links you provided. So, does a negative smear with a positive culture mean there is not active mycobacterium infection?
Mycobacteria is a slow-growing bacteria, which is why 2 tests are run. A "negative smear" just means there was not enough bacteria in the "smear" - that is on the slide - to grow out quickly in the lab - that is 24-48 hours. But there was enough in the sample to grow out on a culture plate, which is grown for up to 6-8 weeks in a special lab.
Usually the next step is to run "sensitivity testing" - applying different antibiotics to the culture - to see what will kill the MAC. In a perfect world, the "colony count" is also used on the culture to determine how much infection is present - but many labs are not equipped to do this.
Have you discussed the results with your doctors yet?
Sue
Not yet. I have an appt next Thursday.
A sensitivity testing would indicate which antibiotic would work best or does it indicate which particular "species" of the many different MACs I have?
I will ask for a colony count if one was not done! I suppose it's not too late to request and obtain that result? I don't know if there is a time limiting factor on the specimen for that. If there was enough to grow out on a culture plate is that an indication there was a lot of bacteria present?
The sensitivity test indicates which antibiotics your specific infection is sensitive to. I just learned in a conference this afternoon that the genetic variations number over a thousand, so some strains of the same bacteria can be susceptible to an antibiotic, whereas it's close cousin may be resistant.
Colony counts must be done during the culture process. Some labs simply label none, few, many ... others use more quantitative measures.
Please be assured that watching and waiting, especially if you have few or no symptoms, is a common practice with MAC/NTM, especially if you have had only one positive culture.
So, you have a week to read, here and elsewhere, about this infection and formulate questions for your doc.
I will be interested in hearing what the result of you visit is.
Sue