1. < MAC & Bronchiectasis

MAC advise

Posted by msk @msk, Oct 24, 2022

Hello everyone
Its been while since I wrote to you all. I wanted to get some thoughts on your experiences after taking the meds and how you did.
I have been taking the 3 meds for MAC now for 9 months and my sputum is still positive. I have no major side effects but I feel exhausted all the time and not well.
My ethambutol was increased last month. I just feel like the meds are not working. I thought since they said I was mild to medium infection that it would clear it up. I guess I wasn’t as mild as they thought. My lung ct are not cleared either.
I do albuteral, saline 7% on my nebulizer and a flutter valve . I really do not see much help getting my sputum up.
My infectious disease doctor wants to send me back to Duke for another opinion. Don’t know about that. I was thinking maybe getting her to get me an appointment at Jewish health hospital for an opinion.
Would like to hear your thoughts. I am at a crossroads and need help.
Thank you all
Miriam

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kzadmgt | @kzadmgt | Dec 25, 2022
In reply to @northland "Thanks you all for the hugs and likes. We're in this together. I was thinking that..." + (show)
@northland

Thanks you all for the hugs and likes. We're in this together. I was thinking that it would be great to have a virtual hug day for people with NTM, for more awareness in our communities and to remind each other we are not alone in these struggles. But I don't know ANYTHING about how to do that. I didn't grow up in the computer age. I will suggest it to NTMir website and see what happens...in the meantime...hugs back at you!!!

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Hi Nothland, I have been on big 3 for two years and plus amikacin. Amikacin really helped me turn negative but I can’t tolerate it after a couple of try. Now I have experiencing back pain/ rib pain, and the night sweating. Would you mind sharing your symptoms before having the surgery? I am only 90 pounds BMI 17.5, not sure whether I can afford the surgery in this physical condition. Would love to learn your experience. Also is your doctor a Mayo doctor? I am thinking to have a visit there. Not sure which doctor I should make an appointment with. Your experience would be really appreciated!

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helenrivera | @helenrivera | Apr 30, 2023

Hi, I have not posted in awhile as became very sick and hospitalized. I have lost so much weight but, more concerned as I lost my muscle tone and my skin looks so horrible it scared me. I have gotten past this and have reached out to NJH in hopes they can do something. I recently had a Picc Line inserted and after 1 week was advised I am resistant to the Amikacin. Picc line removed this past Saturday. My other options are to start Clofazimine or Bedaquiline, not sure if I will take either one with the big 3 antibiotics as I feel so unwell just about all the time, and had horrible side effects from the amikacin (picc line). I am on oxygen 4 litters and higher with any excercion. I don't really exercise as my oxygen will drop pretty low and I have to recovery with supplemental oxygen. NJH has reached out and my Kaiser doctor did submit a referral they are reluctant as I would need to travel about 9 hours and recently had a oxygen evaluation and failed the test for a portable concentrator. Not sure how I can travel with so many tanks of oxygen. My body is saying I need a break from the meds as I have been on the big 3 + Amikacin inhaled + steroids for 8 months over 2 years with the steroids. Anyone else just stop taking the meds and what did you experience and now how are you doing. I do airway clearance 2 x a day and take vitamins. Please any advise appreciated...

REPLY
1 reply
dlynn1210 | @dlynn1210 | May 1, 2023
In reply to @helenrivera "Hi, I have not posted in awhile as became very sick and hospitalized. I have lost..." + (show)
@helenrivera

Hi, I have not posted in awhile as became very sick and hospitalized. I have lost so much weight but, more concerned as I lost my muscle tone and my skin looks so horrible it scared me. I have gotten past this and have reached out to NJH in hopes they can do something. I recently had a Picc Line inserted and after 1 week was advised I am resistant to the Amikacin. Picc line removed this past Saturday. My other options are to start Clofazimine or Bedaquiline, not sure if I will take either one with the big 3 antibiotics as I feel so unwell just about all the time, and had horrible side effects from the amikacin (picc line). I am on oxygen 4 litters and higher with any excercion. I don't really exercise as my oxygen will drop pretty low and I have to recovery with supplemental oxygen. NJH has reached out and my Kaiser doctor did submit a referral they are reluctant as I would need to travel about 9 hours and recently had a oxygen evaluation and failed the test for a portable concentrator. Not sure how I can travel with so many tanks of oxygen. My body is saying I need a break from the meds as I have been on the big 3 + Amikacin inhaled + steroids for 8 months over 2 years with the steroids. Anyone else just stop taking the meds and what did you experience and now how are you doing. I do airway clearance 2 x a day and take vitamins. Please any advise appreciated...

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I’m considering taking a break from the 3 meds also as I have been on them for almost 3 years. My quality of life has been spiraling downward since last year. Within a few months I went from my normal 125 lbs to 94 lbs and looking at my body in a mirror is scary. I had a technician ask if I had noticed I was losing weight. Of course - no way to ignore it!

REPLY
1 reply
fdixon63 | @fdixon63 | May 1, 2023
In reply to @dlynn1210 "I’m considering taking a break from the 3 meds also as I have been on them..." + (show)
@dlynn1210

I’m considering taking a break from the 3 meds also as I have been on them for almost 3 years. My quality of life has been spiraling downward since last year. Within a few months I went from my normal 125 lbs to 94 lbs and looking at my body in a mirror is scary. I had a technician ask if I had noticed I was losing weight. Of course - no way to ignore it!

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dlynn1210 - What do you propose to do going forward?? Back on the meds. I've lost (over 4 years) from about 128 to 115. I'm at 117 now according to the doctor today. Hoping that is a good thing that will continue.

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elaine3625 | @elaine3625 | May 1, 2023
In reply to @sueinmn "There are hundreds of Mycobacteria species, and even more subspecies, so terminology gets confusing REALLY quickly...." + (show)
@sueinmn

There are hundreds of Mycobacteria species, and even more subspecies, so terminology gets confusing REALLY quickly. Worldwide, the most common are M. tuberculosis (TB) M. bovis (Bovine TB) & M. leprae (Leprosy.)

Then there are the species that we talk about here, NTM or non-tubercular mycobacteria, which, in spite of how active this group is, are quite rare (maybe 100,000 - 200,000 people per year) M. avium and M. intracellulare are the most common NTM, and have a number of further distinctions (subspecies.) M. aviums & M. intracellulare are often referred to interchangeably as MAC or MAI as they are closely related, and the diagnosis and treatment are very similar. There are other, less common species, some of which can cause even more serious infection than MAC, M. abscessus is one. And a few that may be present along with MAC but are not considered risky to humans.

So what exactly do we need to know? Mycobacteria can be SEEN on a slide in the lab, using an alcohol/acid precipitant on the slide. That is what the initial "positive AFB" lab results mean. At that point we know there is some Mycobacteria present in the sputum sample - but not which one, in what quantity, and whether it is one that needs to be treated.

So, an AFB positive specimen is sent to a lab that does a culture (grow it in a special medium for several weeks) to see how much bacteria grows. Once it has grown, the specific species & subspecies, can be identified. Next, recommended antibiotics are applied to the culture to see which ones kill your specific bacteria.

Wait, we're not quite done yet! Finally, your doctor evaluates the test results, your other symptoms, the severity of infection in your lungs, and your overall health to determine whether to begin treating you with antibiotics.

I bet that's a lot more than you wanted to know, but I hope it helps you understand why it takes so long to figure out what to do. The good thing is, MAC/MAI grow VERY slowly, so a delay in beginning treatment is not dangerous to you.

What stage are you at in the diagnostic process? Have you also been diagnosed with bronchiectasis?
Sue

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Hi Sue,
Your information is very informative. Can you explain after the doctor evaluates the test results, what other symptoms would he be looking for?
Thank you!

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 1, 2023
In reply to @elaine3625 "Hi Sue, Your information is very informative. Can you explain after the doctor evaluates the test..." + (show)
@elaine3625

Hi Sue,
Your information is very informative. Can you explain after the doctor evaluates the test results, what other symptoms would he be looking for?
Thank you!

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Here is an incomplete list to the best of my recollection: cough, a lot of mucus or chest congestion, fatigue, weight loss, evidence on CT or x-ray of lung cavities or nodules...
Sue

REPLY
2 replies
elaine3625 | @elaine3625 | May 1, 2023
In reply to @sueinmn "Here is an incomplete list to the best of my recollection: cough, a lot of mucus..." + (show)
@sueinmn

Here is an incomplete list to the best of my recollection: cough, a lot of mucus or chest congestion, fatigue, weight loss, evidence on CT or x-ray of lung cavities or nodules...
Sue

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Thank you Sue!

REPLY
dlynn1210 | @dlynn1210 | May 5, 2023
In reply to @sueinmn "Here is an incomplete list to the best of my recollection: cough, a lot of mucus..." + (show)
@sueinmn

Here is an incomplete list to the best of my recollection: cough, a lot of mucus or chest congestion, fatigue, weight loss, evidence on CT or x-ray of lung cavities or nodules...
Sue

Jump to this post

For me it has been learn as I go and then connect the dots. My first symptom that stood out was excessive fatigue. While I was diagnosed with MAC 3 years ago I lost a lot of weight last year - 125 down to 94 lbs. in an attempt to find out why my primary care doctor ordered a full body scan - neck down. I had this done at a hospital and the results came back - pneumonia. What they were seeing in my lungs was MAC and I even told my primary care doctor my belief at that time - MAC not pneumonia. I have to remind myself that MAC is rare so not many doctors (even pulmonologists) have treated women with MAC. My first pulmonologist has had me on 3% saline from the beginning. I have an appt with him next Friday and one thing I am going to insist on is an increase from 3% to 7% saline. My CT scan in Dec showed MAC twice as bad as the previous Dec. I have learned more about MAC in the months I have been on this site than 3 years under pulmonologists care.

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