New to MAC and considering treatments options: What did you do?

Thank you for your patience and info. I will post an update about my appt!

Back from the appointment. No treatment at this point. Watch and wait. However, no colony count was done, nor sensitivity. Only culture, which came back as negative smear and positive culture. Are colony counts only done on smears and then only if positive on the smear? Is this normal protocol not to do a colony count at all?

Those are questions for your doctor, I think. Every practice has a different methodology. For example, my doc wants a minimum of 2, and preferably 3, samples collected over 48 hours, refrigerated and submitted at one time.

At my clinic, which is a larger network, suspect NTM slides are smear-checked in the central lab, then go to the State Dept of Health where it is cultured to rule out TB, even if the smear was negative. (I believe that is because our area is considered high risk for TB.) If the state lab detects TB, the results are reported to the clinic & they decide whether/how to treat.

If the culture shows NTM, our clinic protocol has it sent on to the lab at NJH for sensitivity & colony count. If I had to guess, I would say our protocol is because the chair of our ID department has a working relationship with NJH, and feels it is most accurate. My daughter's clinic is part of our largest metro hospital, and they do their own cultures in-house, with sensitivity testing, but no colony counts. They require 2 samples.

So, your doctor, or the lab they use, can answer the questions about their exact process.
Sue

My specimen was collected via a bronchoscopy. I do not have sputum to cough up for a specimen. Would that make a difference in why no colony count and sensitivity was done?

It should not be different - goes to the same labs.
Sue

So, to clarify. A colony count can be done on a bronch wash specimen the same as a regular sputum specimen but only if the smear is positive and has bacteria to count. Is that correct?

If the culture plate is positive, a colony count can be done - it is just that not every lab has it in their standard protocol, it needs to be requested in the doctor's order. And labs do it different ways - some quantify it as none, few, many, etc. Others apply an algorithm of some sort and arrives at a ##/ml of the culture.

The specimen from a bronchoscopy itself is a little different because a wash is usually a larger quantity, but more diluted by the saline used to get it. However the testing process is the same. But these are used in the same way to get an exact diagnosis.

A slide is used first, with a small amount of the specimen, to ID rapidly growing bugs, and "gram positive rods" (also referred to as AFB positive) or similar terminology. Perhaps washes are more likely to produce a negative slide because it is more diluted, or it may be because the infection is very limited (mild.)

The culture is performed by placing more of the specimen onto a culture plate, which is the incubated at a specific temperature for up to 8 weeks. This is where the NTM (non-tubercular mycobacteria) either grows or does not. After a few weeks of growing, if it shows up, it is analyzed to see which mycobacteria it contains.

Many mycobacteria may be there, but some are not harmful to us, so are not treated. Others are slow growing, and may or may not be treated, based on how many there are, and how many symptoms the person has. Other efforts to A few (most often m. abscessus) are treated as soon as identified, because they can grow more aggressively.

This is a crazy, complex system for finding the best approach for each person. Please know that the statistics show that as many as 50% of the people have a positive culture the first time get a negative one the next time. We don't really know why. Also, as a person who knows you are infected to some degree, there are things you can do to keep the infection down, even possibly get rid of it, without antibiotics.

Have your doctors talked to you about using 7% saline and airway clearance?
Sue

No other therapy mentioned. She said she would treat me with the 3 drug regime if I really wanted to but she felt it was not needed at this point since I am not having any symptoms and no bronchiectasis or cavitary disease. I do have "tree in bud" changes and some "ground glass". I understand it's a pretty tough and long treatment so I don't feel strongly about taking it at this point.
Has there been documented evidence of other treatments getting rid of the mycobacterium? I have not seen any medical documentation or information about other treatments- only the antibiotic therapy with the 3.

If your doctor does not mention airway clearance, it is time to change doctors. The guidelines for treating NTM are online. Anyone can look them up and any doctor can write a prescription. It takes a trained NTM specialist to know the rest. Please, find an institution with NTM department where pulmonologists, ID specialists work as a team along with respiratory physical therapists, pulmonary function lab and NTM microbiology lab. There you will get your respiratory functions tested to decide if you have any deficiencies, then you sit with a PT to teach you how to do airway clearance with special devices and medical grade saline solution. It has to be done correctly to benefit. The equipment must be cleaned and sterilized properly to prevent reinfection. They will teach you how to do it. You may be one of the lucky ones who clear up the infection without ever having to take the harsh antibiotics. Obviously, your infection is caught in its infancy, so you stand a very good chance. If going to NJH is a possibility for you, I recommend you start there. They know what to do like we know how to eat and drink. They have been doing it for ever and will schedule you to stay for a few days as outpatient. It is worth the time and cost. You will know you called the right place as soon as you speak to them. Beyond their testing and recommendations there is nothing for anyone else to add. I know that from experience. I wasted valuable time with local doctors who were not NTM specialists and my condition worsened until I discovered NJH and made the trip to them.
Best of luck.

Wow! Well, could you please tell me
1. how to find an NTM specialty department/institution (hopefully) nearest to me
2. the link for those guidelines that list the airway clearance as part of treatment

I appreciate your info and being direct to the point!