1. < MAC & Bronchiectasis

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

Posted by jkin467 @jkin467, May 5 2:53pm

I was diagnosed with MAC Lung disease 4 years ago due to findings on CT Scan and sputum cultures. However, recently hospitalized with pneumonia and a different Pulmonolgist did thorough research on my case and believes that I was misdiagnosed and don't have MAC. Just wondering if anyone else has had this to happen? Luckily, I chose not to get the extensive antibiotics treatment because I felt the treatment was worse than the disease. Would appreciate knowing if others have experienced this.

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suzanne11 | @suzanne11 | Jun 24 12:56am
In reply to @becleartoday "Good morning Suzanne, I’m so sorry you’re not feeling well. I strongly suggest you reach out..." + (show)
@becleartoday

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

Jump to this post

Hi Linda,

I went to Mayo clinic last September. I do use nebulizer on and off. I do not mind be part of the study. I am talking to a my immunologist at stanford. Hopefully in the next 2 weeks I will have an answer. I have thought bout contacting the National Jewish Health.
Right now my pulmonologist has prescribed Azithromycin 500MLG for 5 days a week for 2 weeks and start the next one in 2 weeks. I will keep you posted.

Thanks,

Suzanne

Thank you

REPLY
1fancydancer | @1fancydancer | Jun 25 10:08am
In reply to @rstel7272 "You need a solid confirmation that you do indeed have MAC and a solid treatment plan...." + (show)
@rstel7272

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

Jump to this post

An Infectious Disease Dr. is your best bet. They seem to know more than a Pulmonologist. My Pulmonologist talks a lot to my Infectious Disease DR and they work closely together. Infectious Disease diagnoses and treats infection while the Pulmonologist treats the breathing problems and mucus production. The pulmonologist also got my airway clearance vest approved for insurance and keeps my asthma under control. He does my bronchoscopy when needed as well to wash the mucus out of my lungs.

REPLY
1fancydancer | @1fancydancer | Jun 25 10:13am
In reply to @suzyqueue "Typically the best way to diagnose MAC is through a bronchoscopy. The ct scans only show..." + (show)
@suzyqueue

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.

Jump to this post

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

REPLY
1 reply
suzyqueue | @suzyqueue | Jun 25 11:24am
In reply to @1fancydancer "A sputum sample will show MAC as well. At least mine did." + (show)
@1fancydancer

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

Jump to this post

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

REPLY
2 replies
jkin467 | @jkin467 | Jun 25 12:07pm
In reply to @suzyqueue "Mine did too but it doesn't all the time. Bronchoscopy is the only for sure way" + (show)
@suzyqueue

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

Jump to this post

Thanks, that's probably true I haven't been able to see a pulmonolgist since the negative cultures but I have an appointment next month and will find out what he recommends.
Thanks for your response.

REPLY
Rick | @rstel7272 | Jun 26 7:45am
In reply to @suzyqueue "Mine did too but it doesn't all the time. Bronchoscopy is the only for sure way" + (show)
@suzyqueue

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

Jump to this post

Or a surgical lung biopsy

REPLY
1 reply
suzanne11 | @suzanne11 | Jun 27 5:21am
In reply to @rstel7272 "Or a surgical lung biopsy" + (show)
@rstel7272

Or a surgical lung biopsy

Jump to this post

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

REPLY
1 reply
Rick | @rstel7272 | Jun 27 7:15am

The trend and studies are moving to less dosages. Daily AZ is pretty tough on the GI. Much prefer MWF myself

REPLY
jkin467 | @jkin467 | Jun 27 11:10am
In reply to @suzanne11 "Hello everyone, I was recommend to start treatment with azithromycin and ethambutol. One of my Pulmonologist..." + (show)
@suzanne11

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

Jump to this post

Please let us know what your Mayo Clinic pulmonolgist tells you about the nasal spray.
I signed up for a Clinical Trial for MAC Lung disease 2 years ago but declined to do it when it was moved out of Dallas. I'm not sure but I think the Clinical trial was testing a spray of some sort but I'm not sure about that.
Hopefully, a better form of treatment will be developed than taking all those antibiotics for such a long period of time.
Good luck with your treatment and health.

REPLY
suzanne11 | @suzanne11 | Jun 27 1:15pm
In reply to @becleartoday "Good morning Suzanne, I’m so sorry you’re not feeling well. I strongly suggest you reach out..." + (show)
@becleartoday

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

Jump to this post

Good morning Linda,

Did you see my recent post?

REPLY
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