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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clynnford | @clynnford | Nov 8, 2022
In reply to @msk "Thank you do much for your thoughts. It gives me hope. My next appointment is Nov..." + (show)
@msk

Thank you do much for your thoughts. It gives me hope. My next appointment is Nov 1 and will see what she gas to say. Recently saw a video of Dr Hewitt and she mentions if after 6 mo still no negative sputum you should add amikacin. Do you have thoughts on that.?
Again thank you.

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Do ACT 3 times a day. Might help.
And pray for healing, that never hurts.

Best,
Cheryl

REPLY
northland | @northland | Nov 9, 2022

Phage therapy is being studied. They currently use it in the country of Georgia. It's been around over 100 years, You might want to goggle it, but...I believe there are some trials they are doing in CA with it. If the mass you have is large enough and can do surgery, that maybe what you will be offered. Seems like I'd have one step forward and one step back all the time. (I'm Still in that phase), Hang in there, think the best and that will help your outcome. Praying for all NTM patients.

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diane47 | @diane47 | Nov 10, 2022
In reply to @msk "Avium most of the time but intercellular too" + (show)
@msk

Avium most of the time but intercellular too

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I was diagnosed 2 months ago so I'm fairly new at this. I didn't know there was a difference between Avium and Intercellular. My doctor has used both terms, but mostly he talks about MAC. What is the difference between Avium and Intercellular? Is the treatment the same for both?

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1 reply
dulwich | @dulwich | Nov 11, 2022

Treatment is the same but intracellulare is sometimes more resistant or slower to respond. It is more likely from soil exposure vs avium from water. You should ask your doctor to check antibiotic sensitivities for your strain and identify the bug as much as possible- especially useful to tell if you have relapse or reinfection if recurs after treatment, which is very common

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phoenix29412 | @phoenix29412 | Nov 11, 2022

Taking B12 and other B vitamins plus drinking more water has helped me. I have a nebulizer and a flutter vest.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 11, 2022
In reply to @diane47 "I was diagnosed 2 months ago so I'm fairly new at this. I didn't know there..." + (show)
@diane47

I was diagnosed 2 months ago so I'm fairly new at this. I didn't know there was a difference between Avium and Intercellular. My doctor has used both terms, but mostly he talks about MAC. What is the difference between Avium and Intercellular? Is the treatment the same for both?

Jump to this post

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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2 replies
diane47 | @diane47 | Nov 11, 2022
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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Thank you for this very helpful response. I was diagnosed with bronchiectasis about 2 years ago. A CT scan and a bronchoscopy were done at that time because I couldn't produce a sputum sample. I didn't receive any treatment and my SED rate went down, but I didn't feel well.

My primary care doctor didn't want to leave it at that, so this summer I was assigned a new pulmonologist and a second bronchoscopy was done and then MAC was grown in the lab. The new doctor couldn't explain why the MAC didn't show up on the initial bronchoscopy 2 years ago, but I guess it was just missed somehow. Anyway, I have been on the Big Three for 10 weeks and I'm not feeling better. I really appreciate this group and I have a lot of questions that I'm sure I'll be asking soon. My new pulmonologist seems to be very proactive and also seems to know a lot about this rather rare condition.
Diane

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northland | @northland | Dec 3, 2022
In reply to @northland "Hi, MAC is hard to kill. Are you taking the meds everyday or three times a..." + (show)
@northland

Hi, MAC is hard to kill. Are you taking the meds everyday or three times a week? Ethambutol is based on your weight. I see my ID doc every month and he checks to make sure the ethambutol is at the correct dosage for my weight, even a couple pounds difference can make a difference in the dosage. For me, I think part of the exhaustion and malaise was due to the meds. I don't know anything about Duke, I haven't gone to NJH (National Jewish Health) but know they are #1 for NTM patients. I tried to get an appointment there while Covid was more active and it took over 7 months plus to get a response. by that time we knew I needed surgery so had the surgery at Mayo, which was closer. It just may take a long while to get in the NJH although things should be a bit better, It'll still take months from the day you send all you medical files in to when they will call to take you. Huff cough, boiling water for drinking, taking baths versus showers (cleaning shower heads regularly if you do), masking while gardening, making sure your Vit. D and Vit A are in normal range (I researched the later on PubMed and brought the articles to my MD who tested and found I was low on both. Basically doing everything you can to decrease your exposure since it's everywhere. I've been a long hauler and on five antibiotics besides using the vest and sodium chloride solution. Since surgery, I've been negative. It's made a world of difference finding that hidden spot and dealing with it. Only a couple more months and I'm off all meds! Praise God. Blessings to you on your journey, be patient and determined. Hope may seem impossible at times, but it's not, it's just around the corner.

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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!!!

REPLY
1 reply
suethenanny | @suethenanny | Dec 4, 2022

I've been on the meds for 7 months now. I'm mild but on 7 days a week. Bronchiectasis is stable so I'm happy with that. I've only done one sample which is so far negative so I'm assuming it's worked for me. I don't produce much sputum generally but continue with nebulising saline as to me, that's cleaning my lungs. I heard someone say it is usually between 6 to 12 months before the meds kick in. Fingers crossed for you

REPLY
kzadmgt | @kzadmgt | Dec 25, 2022
In reply to @northland "Hi, MAC is hard to kill. Are you taking the meds everyday or three times a..." + (show)
@northland

Hi, MAC is hard to kill. Are you taking the meds everyday or three times a week? Ethambutol is based on your weight. I see my ID doc every month and he checks to make sure the ethambutol is at the correct dosage for my weight, even a couple pounds difference can make a difference in the dosage. For me, I think part of the exhaustion and malaise was due to the meds. I don't know anything about Duke, I haven't gone to NJH (National Jewish Health) but know they are #1 for NTM patients. I tried to get an appointment there while Covid was more active and it took over 7 months plus to get a response. by that time we knew I needed surgery so had the surgery at Mayo, which was closer. It just may take a long while to get in the NJH although things should be a bit better, It'll still take months from the day you send all you medical files in to when they will call to take you. Huff cough, boiling water for drinking, taking baths versus showers (cleaning shower heads regularly if you do), masking while gardening, making sure your Vit. D and Vit A are in normal range (I researched the later on PubMed and brought the articles to my MD who tested and found I was low on both. Basically doing everything you can to decrease your exposure since it's everywhere. I've been a long hauler and on five antibiotics besides using the vest and sodium chloride solution. Since surgery, I've been negative. It's made a world of difference finding that hidden spot and dealing with it. Only a couple more months and I'm off all meds! Praise God. Blessings to you on your journey, be patient and determined. Hope may seem impossible at times, but it's not, it's just around the corner.

Jump to this post

May I ask where did you have the surgery? And what was your major symptoms before the surgery? How long you have been diagnosed of MAC by the time you had the surgery? Thanks so much!

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