1. < MAC & Bronchiectasis

Mac + lung cavity

Posted by bevmac @bevmac, Jun 24, 2020

my 3 centimetre cavity has healed in 16 months with the 3 antibiotics - both shocked and delighted. Preventative medicine doctor assisted my immune system cope - also recommended a vegan diet for last 9 months.

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leimakamae63 | @leimakamae63 | May 16, 2023

I see! Thanks. So it’s possible that MAC May still show up? It’s only been a couple of weeks since the culture was done. I wonder if that would explain why after a whole round of antibiotics I still feel achy, fluish, weak, fatigued and with no appetite. I’ll ask my doctor about it. Thank you very much!!

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2 replies
dlynn1210 | @dlynn1210 | May 17, 2023
In reply to @healthybon "I get 7% saline Amazon." + (show)
@healthybon

I get 7% saline Amazon.

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We need a prescription and then must buy from a pharmacy to get insurance to pay for any portion.

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dlynn1210 | @dlynn1210 | May 17, 2023
In reply to @leimakamae63 "I see! Thanks. So it’s possible that MAC May still show up? It’s only been a..." + (show)
@leimakamae63

I see! Thanks. So it’s possible that MAC May still show up? It’s only been a couple of weeks since the culture was done. I wonder if that would explain why after a whole round of antibiotics I still feel achy, fluish, weak, fatigued and with no appetite. I’ll ask my doctor about it. Thank you very much!!

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Some viruses are slow growing according to my daughter who has been an RN for 30+ years and she told me 3 years ago when I asked this same question. Three years into this and 6 weeks is the norm to see results.

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kwi | @kwi | May 17, 2023
In reply to @leimakamae63 "I see! Thanks. So it’s possible that MAC May still show up? It’s only been a..." + (show)
@leimakamae63

I see! Thanks. So it’s possible that MAC May still show up? It’s only been a couple of weeks since the culture was done. I wonder if that would explain why after a whole round of antibiotics I still feel achy, fluish, weak, fatigued and with no appetite. I’ll ask my doctor about it. Thank you very much!!

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Yes, it’s still possible that MAC may show up Hopefully your doctor is checking for that bacteria.

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irenea8 | @irenea8 | May 17, 2023
In reply to @leimakamae63 "I’m all new to this forum. Can you tell me what MAC is? I have bronchiectasis..." + (show)
@leimakamae63

I’m all new to this forum. Can you tell me what MAC is? I have bronchiectasis and recently did a sputum sample with positive results of pneumonia and influenzae bacteria. It has been a gnarly ride! If I had MAC would it have shown up in the sputum culture?🤷🏼‍♀️

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IT is a specific sputum test your Dr would order. And as stated takes a long time for results.

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leimakamae63 | @leimakamae63 | May 17, 2023

Thank you! I finally got a hold of him and he said that theyares testing for MAC! Thank goodness!

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gjaleski | @gjaleski | May 19, 2023
In reply to @sueinmn "@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo,..." + (show)
@sueinmn

@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo, if only to confirm that your (more MAC savvy) doc is on the right track.

After 18 months on the 3 antibiotics, 6 months daily, my body was in full rebellion. So last December, with my ID doc & pulmo, consulting with NJH, we decided to stop & see, only using Flovent, 7% saline 1X day & airway clearance. So far, so good. Made it through winter, when I usually get bronchitis &/or pneumonia, and through 2 major allergy seasons, TX & MN, without any illness and minimal need for levalbuterol nebs. Lung scan will be repeated in Dec, sooner if I get symptoms.

I have recovered most of my energy, though none of the weight I lost, and still have no appetite, so must be vigilant about eating enough. As for using the Big 3 to prevent, that will not be something I choose to do - I was too tired and sick from the meds. It will be caution & watching - my docs are happy with that strategy, even though we all think treatment will have to happen again at some point. I get the feeling that is becoming a more prevailing philosophy with MAC, since no matter how long we stay on the meds, it seems we are never really "cured", but always at risk for recurrence. Maybe by the time I need treatment again there will be something better?

Can you produce a sputum sample, either on your own or using saline nebs, so you can avoid a biopsy? So much easier on the body.
Sue

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I had a growth in my RUL. I had a bronchoscopy to rule out lung cancer. Instead I have cavitary mac.

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1 reply
Rick | @rstel7272 | May 20, 2023
In reply to @gjaleski "I had a growth in my RUL. I had a bronchoscopy to rule out lung cancer...." + (show)
@gjaleski

I had a growth in my RUL. I had a bronchoscopy to rule out lung cancer. Instead I have cavitary mac.

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Same here, what we thought was a reoccurrence of Mac after 3 years turns out to be fungal/aspergillus. Started Voriconazole 6 months ago.

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suzanne11 | @suzanne11 | Feb 19 3:31am
In reply to @sueinmn "@ckscoville @bevmac I too am curious about this as it seems to contradict the National Jewish..." + (show)
@sueinmn

@ckscoville @bevmac I too am curious about this as it seems to contradict the National Jewish Health recommendation for extra protein while on antibiotics. I was losing weight at an alarming rate until I began following their diet recommendations, see


Sue

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Hi Sue,

My name is Suzanne. I am 55 years old. I was diagnosed with Mac Lung disease over a year ago. My doctors are not giving me antibiotics. They have suggested the nebulizer. One Dr. says to do it 2 times a day, the other doctor says few times a week. My condition is getting worse as I have non stop sputum. I am not sure what I should do. I am nerves about my condition, and afraid of the antibiotics side effects. 🙁

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 19 12:10pm
In reply to @suzanne11 "Hi Sue, My name is Suzanne. I am 55 years old. I was diagnosed with Mac..." + (show)
@suzanne11

Hi Sue,

My name is Suzanne. I am 55 years old. I was diagnosed with Mac Lung disease over a year ago. My doctors are not giving me antibiotics. They have suggested the nebulizer. One Dr. says to do it 2 times a day, the other doctor says few times a week. My condition is getting worse as I have non stop sputum. I am not sure what I should do. I am nerves about my condition, and afraid of the antibiotics side effects. 🙁

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HI Suzanne, You are in exactly the situation where none of us likes to be with this disease - getting worse and getting inconsistent guidance from your docs.

As for being afraid of the antibiotics, Have you read the comments in this discussion?
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
There is definitely a time and a place for antibiotics. I will liken taking them to a cancer patient having surgery only, radiation, chemotherapy or a combination of the three. Some slow-growing or early stage cancers can be treated with one method only. Others require a more aggressive approach to knock them out. There are side effects to treating, and then there is the very real side effect of not treating - spreading cancer, maybe even death.

So it is with MAC/NTM. Sometimes airway clearance with airway meds and/or saline can knock the infection down or out. Sometimes it doesn't work, and the antibiotics need to be considered. Yes, there are side effects, but failing to treat when needed has really bad side effects too - potential loss of all or part of infected lungs, need for a lung transplant, or if the infection invades too far, even (VERY rarely) death. So it is a balancing act.

This discussion contains links to some excellent resources that discuss the stages of MAC/NTM and the protocols on when to treat and when to watch and wait.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
You have told us your doctors are not specific on how much to neb, but what have they recommended using in the nebulizer? And have they prescribed a daily routine of airway clearance for getting the mucus out? It is the lovely, warm, moist breeding ground for bacteria in our lungs.
Sue

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