So, you have been diagnosed with MAC lung disease, and you’re wondering what comes next. You are not alone, and your best tool is as much knowledge as possible to prepare you for your best possible outcomes. 

What is MAC Lung Disease? 

MAC lung disease, or MAC-pulmonary disease, is a non-contagious infection in the lungs caused by a group of bacteria called Mycobacterium Avium Complex, or MAC for short.¹ It is a chronic disease that will last for at least a year.² Typically, people who are diagnosed with it may have had weak immune systems or already had a lung condition like bronchiectasis or cystic fibrosis. Other factors that make you more likely to develop it include if you smoked before, or your genes make you more susceptible to being infected by MAC.³ Treatment and long-term outcomes depend on how advanced your lung infection is, how exposed you are to the risk factors for the disease, and how well you respond to treatment.³ 

What might my future look like? 

Your Recovery Journey 

After being diagnosed, your next step is to analyse your treatment plan. Treatment is incredibly complex, and in places where treatment isn’t free, it is very expensive. MAC lung disease will affect the quality of your life, whether you decide on treatment or not.⁴ Depending on the region you live in, treatment success can mean many different things, but is all measured by negative swabs of bacteria from your lungs. Whether that is after 3 negative swabs after 3 check-ups, or several negative swabs during 12 months is up to the rules in your region ⁴ 

Stage 1- Monitoring the activity of the bacteria in your lung 

MAC-lung disease exists on a spectrum of severity, but can be put into 3 groups: mild, moderate, and severe.¹ In some cases, your MAC lung disease will not need treatment. This is due to the bacterial infection being mild enough that treatment might have a worse effect compared to letting your immune system fight the infection on its own.¹ In this case, you just need to show up for your regular check-ups to monitor the progression of your disease. In about 40-60% of you, the MAC swabs will start showing no MAC, meaning you have been cured from the disease without any medication.⁴ This typically happens after at least 12 months, but can sometimes happen as early as three to six months after diagnosis. So don’t give up. Your treatment will be incredibly challenging, but you can push through to recovery. 

Stage 2- The Infection gets worse without treatment 

In some cases, MAC lung disease does not resolve on its own. Instead, the infection worsens, which can be seen from the results your routine swab test will provide. This is why it is important to show up to your routine check-ups. In this case, your doctor may prescribe antibiotics. Usually, you will be given macrolide-containing antibiotics. These are a type of medication that fights many types of bacterial infections. Your treatment will be long and complex. But don’t lose hope. You’re going to have to be incredibly patient with yourself and be resilient in the face of potential side effects. 

Typically, you are prescribed multiple different antibiotics, with at least one macrolide-containing medicine, to increase your chances of flushing out the bacteria over a long period. Your dosage will last for at least 12 months, with regular monitoring of the disease progression. Approximately 73.8% of you will show no MAC bacteria in your saliva samples after 12 months, which is considered a successful treatment outcome.² If you take only one antibiotic that contains macrolides, you have a high chance of becoming resistant to the medication. This means that the bacteria stop responding to the antibiotic and aren’t destroyed by it anymore. If you are in this situation, please see your doctor as soon as possible.  

Note: some side effects of using antibiotics include:³

• Nausea 
• Vomiting 
• Bloating 
• Abdominal pain 
• Reduced hearing 
• Tinnitus 
• Hepatitis 

Please see your doctor if you want to explore options for managing your side effects, rather than choosing to stop taking your medication. Stopping your medication before finishing your full dose has worse complications, such as speeding up the resistance of MAC to medication, leaving you with fewer options for treatment.⁵  

Stage 3- Surgery 

Where medication has not worked, especially after a 6–12-month period, you will be recommended to have a lung resection surgery.¹ This procedure involves removing part or all of the lung that is infected by the bacteria. The amount of your lung that is removed will be determined by the severity of the infection. Typically, the tissue infected is a single bit. In some cases, a whole lobe of your lung will be removed, and in severe cases, your entire lung could be removed.² While this surgery carries risks as with all other surgeries, the rate of clearance of the bacterial infection from your lung is as high as 80-100%.⁴

So please don’t lose hope. The next few years might be very difficult, with constant adjustments to your ‘new normal’. Try to stick to taking your medication when you need to. Be patient with all the changes that will happen to you or around you. The best thing you can do is learn about what is going on in your lungs and prepare for potential situations.  

Stage 4- Relapse Rates 

Unfortunately, due to MAC existing everywhere, there is a high chance of relapsing. This is when you are diagnosed with MAC lung disease after your lungs were previously cleared of it. The chances of relapsing are between 25% and 49%.⁶  

The words relapse and reinfection are used interchangeably; however mean two different things: 

• Relapse describes a situation where your lungs are infected with the same bacteria or bacteria strain as before⁵ 
• Reinfection is slightly different. This is where your lungs are infected with a different type or strain of bacteria⁵

Both situations are incredibly dire and should be taken seriously. Your chances of survival decrease with each relapse due to the bacteria gaining immunity from the medication.  

FAQs 

Can MAC-lung disease be cured? 

The term cured is usually not used because there is a chance that you can be infected again. However, when you have MAC lung disease, there is a good chance that you will be able to clear the infection from your lungs. We call that a treatment success.¹ 

Can I take my own supplements or natural medications whilst getting treatment? 

Please be careful when taking non-prescribed medication or supplements. They can interfere with the way the antibiotics work, which could lower your chances of getting better in time.  If you are considering or are already taking supplements or are using alternative medications, then please talk to your doctor about everything you’re using to make sure that you aren’t affecting your treatment.⁷

Why am I not getting better with the medication? 

There are many reasons behind your body’s lack of recovery with the medication. It might be a you-problem, a medication problem, or a bacteria problem. 

• You might not be taking your medicines as often as you should. Or you stopped taking them, maybe due to the side effects¹
• Your prescription isn't enough. You might have been prescribed one medication, which is dangerous because it means you have a higher chance of not responding to the bacteria anymore. Typically, you are prescribed three medications³
• The bacteria have become resistant to your medication. This means that the bacteria can no longer be affected by antibiotics. This is the most likely circumstance and might mean that you need to start considering surgery. But don’t worry, surgery has high treatment success outcomes⁴

If none of the treatments have worked, what are my options? 

There are new therapies that are still being developed to help combat the high resistance rates of MAC lung disease. Your best bet is to apply to join the clinical trials for these treatments. Remember, this is incredibly hard and expensive.¹ 

If the medication hasn’t worked, then your doctor may tell you that it is time to consider surgery. 

Will I die from MAC lung disease? 

MAC lung disease has a mortality rate of 27% over 5 years after diagnosis, with medical treatment ^3. It has a 23% mortality rate with surgical treatment. So, 4 out of 5 people will live for over 5 years.  

Summary 

MAC lung disease is a chronic condition requiring complex management and monitoring over a long period. For some, you may not need any treatment and could heal from nothing being done. For others, depending on the severity, around three antibiotics will be prescribed to be taken at once, which brings a myriad of side effects and may affect your quality of life. If this doesn't work, then surgery can be done to remove the affected parts of the lung. Your best weapon is knowledge to be prepared for what to do and how you can personally manage your MAC lung disease.