Anyone been mistakenly diagnosed with MAC Lung disease but not MAC?

Good morning Suzanne,

I’m so sorry you’re not feeling well. I strongly suggest you reach out to the researchers at the Oregon Health and Science University. They are the principle investigators of the MAC2v3study.org. This is the study where you are randomized into a group with either two drugs or the standard three. You can be part of this study even if you aren’t able to go to a study center. Over 450 people have participated and they’re looking for another 20 or so to complete the study.

There are international guidelines for MAC treatment regarding dosages. Your doctor should be able to reach out to National Jewish Health with questions. If for some reason he or she is unclear, you might want think about going there or to Mayo to see doctors who specialize in the treatment of NTM disease.

Are you doing airway clearance? Sometimes when some of our cultures are positive and some negative it could indicate a light bacteria load. And with enough airway clearance and exercise, we might be able to eradicate the bacteria without antibiotics. But of course you would need to be watched very closely to make sure your disease does not progress. Have you met with a respiratory therapist?

Please let me know if you need any more information, Linda Esposito

You need a solid confirmation that you do indeed have MAC and a solid treatment plan. You might need a pulminologist with some more Mac experience

Typically the best way to diagnose MAC is through a bronchoscopy. The ct scans only show if any damage yet. I grew a 10 cm cavity in my upper left lung within 30 days.

A sputum sample will show MAC as well. At least mine did.

Mine did too but it doesn't all the time. Bronchoscopy is the only for sure way

Mine did too but it doesn't all the time. Bronchoscopy is the only for sure way

Or a surgical lung biopsy

Hello everyone,

I was recommend to start treatment with azithromycin and ethambutol. One of my Pulmonologist prescribed 1 tablet of zithromycin (500mg )for 5 days a week and start ethambutoL 400 mg tablet to take 2 tablets (800 mg total) by mouth daily, 2 weeks after starting azithromycin.

My Infectious Disease specialist suggests azithromycin either at (250 mg daily or 500 mg ) 3x/week and ethambutol (15 mg/kg/day or 25 mg)/kg 3x/week.

I am very confused and nervous about the right dosage. So I contacted my Pulmonologist at Mayo Clinic. Whom originally when I meet last September did not think I should be taking the medications. He Suggested airway cleansing and sinus rinse with salt water and use a nasal spray.
I only did the sinus rinse with salt water for a few months, I hardly used the nasal spray, I wonder if that would had helped my situation?
I use the nablizer at least 5 times a week. I am pushing myself to do it twice a day/7 days a week as prescribed.

I am planning to start the medication as soon as I hear back from my Mayo Clinic Pulmonologist. I admit I am very nervous . 😟 😰

Do you think I should do a Bronchoscopy first? My last several septum test has been MAC positive. My last lung CT was last July. I have done so many CT scans, nervous to do more!!! ( Total CT scans since 12/22 / 3 times)
Since 2000/ 26 CT scans !!! Any time I go to emergency room they order a CT scan. 😭😭😭
Good news is they have built a new CT scans with much less exposure to radiation.
This is extremely hard not knowing what step I should be taking next, not even knowing what is the right medication dosage???
Has anyone gone through the same experience?
What about taking probiotics while taking the big 3? Did anyone took or is taking probiotics with taking the big 3 ? And if so how often? By the way they do not do big 3 anymore! I guess is the big 2 now... lol

I was also prescribed the airway clearance vest, my co-pay is extremely high, but if it works it is definitely worth it. Please let me know your experience with airway clearance? Does it actually help?

I greatly appreciate all your suggestions and experience on what to do and what to eat while on the medications? I have an appointment with my nutritionist tomorrow morning, so hopefully she would guide me on the right path.:)

This feels like a long Journey. I hope we all get better soon.
Thank you for your support.

Suzanne

Good morning Suzanne,

I’m so sorry you’re not feeling well. I strongly suggest you reach out to the researchers at the Oregon Health and Science University. They are the principle investigators of the MAC2v3study.org. This is the study where you are randomized into a group with either two drugs or the standard three. You can be part of this study even if you aren’t able to go to a study center. Over 450 people have participated and they’re looking for another 20 or so to complete the study.

There are international guidelines for MAC treatment regarding dosages. Your doctor should be able to reach out to National Jewish Health with questions. If for some reason he or she is unclear, you might want think about going there or to Mayo to see doctors who specialize in the treatment of NTM disease.

Are you doing airway clearance? Sometimes when some of our cultures are positive and some negative it could indicate a light bacteria load. And with enough airway clearance and exercise, we might be able to eradicate the bacteria without antibiotics. But of course you would need to be watched very closely to make sure your disease does not progress. Have you met with a respiratory therapist?

Please let me know if you need any more information, Linda Esposito