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Just Diagnosed with GERD, Bronchiectasis and MAC
Hello. I was just diagnosed with GERD, broncheastis, and MAC. I have just begun antibiotic treatment: 3 antibiotics, 3 days a week. This is all new to me. I've never had a serious medical issue before this, and I am glad I found this group.
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A CT scan alone is not sufficient information with which to begin treatment - the culture will show the type of MAC (there are several) and what antibiotics it is sensitive to.
Have they done a sputum culture yet? Recommended using airway clearance with saline to try to stop/slow the infection? Are you seeing a pulmonologist or ID doc experienced in treating MAC? MAC is still quite uncommon, so many do not have experience treating it.
Sorry for so many questions, but you might want to do a little studying before you commit to treatment with antibiotics.
Here is a link to a recent educational conference at the Medical University of South Carolina where "To treat or Not?" is discussed in the first session
Defining NTM lung disease, Patrick Flume, M.D.
Mycobacteria & the Environment, Susan Dorman, M.D.
Non-Pharmacologic Therapies, Wayne Barfield, RT & Christina Mingora, M.D.
Antibiotic Treatment of NTM Lung Disease, Patrick Flume, M.D.
Drug Toxicity and Monitoring, Wendy Bullington, PharmD
Emotional Wellness and Quality of Life While Living with NTM, Lillian Christon, PhD
What is in the Drug Pipeline? Susan Dorman, M.D.
Patient Advocacy, Sue Gray, RN
Panel Q&A
Patient Perspectives, Faculty Panel
I hope this information will help you.
Sue
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2 ReactionsI will be getting the bronchoscope in January as well to determine type. I do see a pulmonologist that specializes in MAC. Up to this point he has not recommended any treatment, but now that there are changes to the scan he will be moving forward with treatment. No airway treatment has been discussed yet as I have to symptoms not a cough or anything.
Just to be clear, the airway clearance process (via PEP device and nebulized saline) is to mitigate the progression of your bronchiectasis. It's not to treat your MAC infection (although a small percentage of people have been known to clear their infection via airway clearance).
This process also mitigates the risk of 'exacerbations' such as pneumonia that could land you in hospital. Airway clearance for bronchiectasis patients is recommended regardless of being asymptomatic.
Unfortunately, a large number of pulmos in the US are not aware of the importance of airway clearance and, consequently, fail to educate their patients accordingly. Insmead currently have a bronchiectasis drug under trial and plan to do a nationwide educational roadshow to socialize this concept with physicians.
Is there a reason they're getting a sample via bronchoscopy vs sputum induction? If they don't know about sputum induction, I recommend you go to a specialist who does. Bronchoscopy is expensive, time consuming, and not without risk (both from the procedure and from the anesthesia). For the purpose of obtaining a sample to determine AFB status, a sputum induction is considered standard per NTM diagnostic guidelines. Once they have the sample, they should be able to tell you the following if you're AFB positive:
1. Species
2. Colony count
3. Drug susceptibility
If you do go on treatment, standard protocol recommends getting monthly sputum samples.