1. < MAC & Bronchiectasis

Treatment for MAC

Posted by mb53 @mb53, Jan 21 2:38pm

I am on the verge of starting the 3 antibiotic treatment for MAC. I am interested to hear other people’s experience with this treatment. I use a 7% nebulizer treatment almost daily and walk and hike. Seems so weird to do this treatment when I feel ok, just coughing at times. Apparently if you wait until it gets worse it’s harder to treat?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

irene5 Irene Estes | @irene5 | Jan 29 11:15am
In reply to @animasgirl "Hi what are side effects of Arikayce? I wear a mask when I am tilling the..." + (show)
@animasgirl

Hi what are side effects of Arikayce? I wear a mask when I am tilling the dirt or dusty conditions,the Dr said to wet it down when possible. I am one of those that have no symptoms.I do not have enough “ stuff” for a culture.So frustrating

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So I have never been able to spit either - doctors had me go for induced sputums all the time. Nada! I did not have symptoms at the beginning either except I just didn’t feel well and couldn’t put my finger on it but was losing weight and I’m not a big person so that was concerning. The Big 3 never agreed with me no matter how many times I was on them, but Arikayce was easy for me in terms of outward side effects. It is time consuming because you have to sterilize equipment each time. I was in a clinical trial so had to keep a journal etc. etc.. The visible side effects I had were coughing during and after use. The only way for doctors to find out if it was gone was with a bronchoscopy. I have had many over the years. I also have CT scans every 6 months now. Arikayce did kill the MAC. Irene5

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ljostroga1973 | @ljostroga1973 | Jan 29 11:26am

I started the big three in November. Had a lot of apprehension. Have had various side effects they come and go I just have to work with it. I workout 5 days a week, walk an hour on the treadmill 6 days a week, golf 4-5 days Eat sensibly, neb in the evenings drink lots of water.

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1 reply
cwal | @cwal | Jan 30 4:54am
In reply to @ljostroga1973 "I started the big three in November. Had a lot of apprehension. Have had various side..." + (show)
@ljostroga1973

I started the big three in November. Had a lot of apprehension. Have had various side effects they come and go I just have to work with it. I workout 5 days a week, walk an hour on the treadmill 6 days a week, golf 4-5 days Eat sensibly, neb in the evenings drink lots of water.

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You are an active lady! Check that one on the list of things to do to take care of yourself!

Would you mind giving a little more "background" info regarding the status of your MAC, symptoms etc? Have you had symptoms, exacerbations? Only doing airway clearance once a day works well for you?

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maryjanechilds | @maryjanechilds | Jan 30 6:18am
In reply to @irene5 "Since you are intolerant to that MAC med, and I am so very sorry about that..." + (show)
@irene5

Since you are intolerant to that MAC med, and I am so very sorry about that eye complication, see if you can get inhaled Arikayce. Your MAC is coming from the dirt. You have apparently the genetic makeup to get MAC. You should (no matter how hard it may be), wear an N95 mask. Your MAC will unfortunately keep increasing which will ultimately cause serious respiratory disease. Arikayce will kill the MAC , but you will have to continue to avoid getting it again- hence the N95’s. If you don’t care then don’t worry about it. You may be a lucky one and just die with MAC but not from MAC. Clearly I have no crystal ball, but your wonderful annd noble occupation of farming ( which I have a huge amount of respect for) is where you got MAC. That was the first question asked of me years ago- Did I live or work on a farm or have contact with birds? If you do nothing medically at all at least start wearing a mask. Irene5

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Irene, please explain further your comment about birds. I have a bird feeder but have never heard that birds can be a source of MAC contamination. I have MAC now and am on the Big 3 and I surely don’t want to do anything to be reinfected.

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2 replies
suzyqueue | @suzyqueue | Jan 30 7:48am

The bacteria for MAC is in more than just dirt. It's in water, shower heads, other dusts etc. Therefore, there's no telling where it came from. The Arikayce side effects for me were loss of voice the first week or so until I started doing the treatment at night before bedtime and gargling with the warmest water possible after. It also may make you cough more in the beginning of the treatment.

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1 reply
irene5 Irene Estes | @irene5 | Jan 31 7:45am
In reply to @maryjanechilds "Irene, please explain further your comment about birds. I have a bird feeder but have never..." + (show)
@maryjanechilds

Irene, please explain further your comment about birds. I have a bird feeder but have never heard that birds can be a source of MAC contamination. I have MAC now and am on the Big 3 and I surely don’t want to do anything to be reinfected.

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@maryjanechilds The definition of MAC is mycobacterium AVIUM complex. Avium means birds. The good news I think for you is if I remember correctly when I was first diagnosed the doctors were more concerned about chickens, chicken coops, pigeons and the like. I think it’s that type of constant interaction where a person would be more likely to get MAC than from a bird feeder. Please don’t give up that beautiful part of your life. Bird feeders are lovely. Maybe wear a mask when changing the bird feeders would be a suggestion. I interacted with a pigeon as a child. My Penny’s cage was attached to my bedroom window so she could come and go as she pleased and be warm in the winter. My dad was an avid birder and bird photographer and felt no bird should be caged so he allowed me that one homing pigeon who even frequented my bedroom, and I held her a lot and did change her cage. Her band number was 2424. Where did I pull that from? 🙂 My aunt in Greenwich, New York had parakeets who flew all over her salon but went back to their cage whenever- open door policy:) except at night. Whether or not that’s where I got MAC is anyone’s guess. I came in contact with TB as a child somewhere as well so I’m told. Who knows. I never tested positive on a skin test so I think that’s questionable. Bird contact - feathers and whatnot are a source of MAC , but I’m going to go out on a limb and say don’t give up your bird feeders because there’s plenty of sources of MAC out there where certain people can find it - or it can find them. Irene5

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3 replies
maryjanechilds | @maryjanechilds | Jan 31 8:40am
In reply to @irene5 "@maryjanechilds The definition of MAC is mycobacterium AVIUM complex. Avium means birds. The good news I..." + (show)
@irene5

@maryjanechilds The definition of MAC is mycobacterium AVIUM complex. Avium means birds. The good news I think for you is if I remember correctly when I was first diagnosed the doctors were more concerned about chickens, chicken coops, pigeons and the like. I think it’s that type of constant interaction where a person would be more likely to get MAC than from a bird feeder. Please don’t give up that beautiful part of your life. Bird feeders are lovely. Maybe wear a mask when changing the bird feeders would be a suggestion. I interacted with a pigeon as a child. My Penny’s cage was attached to my bedroom window so she could come and go as she pleased and be warm in the winter. My dad was an avid birder and bird photographer and felt no bird should be caged so he allowed me that one homing pigeon who even frequented my bedroom, and I held her a lot and did change her cage. Her band number was 2424. Where did I pull that from? 🙂 My aunt in Greenwich, New York had parakeets who flew all over her salon but went back to their cage whenever- open door policy:) except at night. Whether or not that’s where I got MAC is anyone’s guess. I came in contact with TB as a child somewhere as well so I’m told. Who knows. I never tested positive on a skin test so I think that’s questionable. Bird contact - feathers and whatnot are a source of MAC , but I’m going to go out on a limb and say don’t give up your bird feeders because there’s plenty of sources of MAC out there where certain people can find it - or it can find them. Irene5

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Thank you Irene. Beautiful story of your growing up. Best to you.

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blm1007blm1007 | @blm1007blm1007 | Jan 31 9:37am
In reply to @irene5 "@maryjanechilds The definition of MAC is mycobacterium AVIUM complex. Avium means birds. The good news I..." + (show)
@irene5

@maryjanechilds The definition of MAC is mycobacterium AVIUM complex. Avium means birds. The good news I think for you is if I remember correctly when I was first diagnosed the doctors were more concerned about chickens, chicken coops, pigeons and the like. I think it’s that type of constant interaction where a person would be more likely to get MAC than from a bird feeder. Please don’t give up that beautiful part of your life. Bird feeders are lovely. Maybe wear a mask when changing the bird feeders would be a suggestion. I interacted with a pigeon as a child. My Penny’s cage was attached to my bedroom window so she could come and go as she pleased and be warm in the winter. My dad was an avid birder and bird photographer and felt no bird should be caged so he allowed me that one homing pigeon who even frequented my bedroom, and I held her a lot and did change her cage. Her band number was 2424. Where did I pull that from? 🙂 My aunt in Greenwich, New York had parakeets who flew all over her salon but went back to their cage whenever- open door policy:) except at night. Whether or not that’s where I got MAC is anyone’s guess. I came in contact with TB as a child somewhere as well so I’m told. Who knows. I never tested positive on a skin test so I think that’s questionable. Bird contact - feathers and whatnot are a source of MAC , but I’m going to go out on a limb and say don’t give up your bird feeders because there’s plenty of sources of MAC out there where certain people can find it - or it can find them. Irene5

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Gave me food for thought when I read "birds'.
While cleaning out a bird house I suddently thought to myself, you just breathed in some bad stuff. Dust etc. etc. ,,,,,,thought this as I was pulling out the birds nest to clean the house.
It was a few years ago and I was showing symptoms a good a few years before the final acknowledgement of my primary doctors decison to find out why I had lost so much weight in one year. He ordered the CScan 8/22/2022 and the result, as he held my hand,...Bronchiectasis. He is a caring doctor with an open mind however I believe he and doctors in general need to have a system that keeps a list and record of the concerns and symptoms you have been telling them during the long time period of telling them that something is wrong.... meaning the tool called a computer that could analyze all you have brought to their attention as time goes along. (Good luck with that intelligent use of computers 😁)
So, who truly knows if it was cleaning out the bird nest(s) from the bird house(s) or some of my other health problems that surfaced and were supposedly 'cured' along lifes journey. However, now that I know what can happen in living life and specifically dealing with nature and water, I do believe masks are in order, when logically can be used with good common sense, for many reasons.

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1 reply
Rick | @rstel7272 | Jan 31 12:37pm
In reply to @blm1007blm1007 "Gave me food for thought when I read "birds'. While cleaning out a bird house I..." + (show)
@blm1007blm1007

Gave me food for thought when I read "birds'.
While cleaning out a bird house I suddently thought to myself, you just breathed in some bad stuff. Dust etc. etc. ,,,,,,thought this as I was pulling out the birds nest to clean the house.
It was a few years ago and I was showing symptoms a good a few years before the final acknowledgement of my primary doctors decison to find out why I had lost so much weight in one year. He ordered the CScan 8/22/2022 and the result, as he held my hand,...Bronchiectasis. He is a caring doctor with an open mind however I believe he and doctors in general need to have a system that keeps a list and record of the concerns and symptoms you have been telling them during the long time period of telling them that something is wrong.... meaning the tool called a computer that could analyze all you have brought to their attention as time goes along. (Good luck with that intelligent use of computers 😁)
So, who truly knows if it was cleaning out the bird nest(s) from the bird house(s) or some of my other health problems that surfaced and were supposedly 'cured' along lifes journey. However, now that I know what can happen in living life and specifically dealing with nature and water, I do believe masks are in order, when logically can be used with good common sense, for many reasons.

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Here is a good paper from Texas A&M ..
https://www.tamuk.edu/finance/risk/animal-safety/mycobacterium-avium.html
10 years ago, I made the mistake of power washing pigeon poop inside a 2 stall barn several times.

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1 reply
lilianna | @lilianna | Jan 31 1:07pm
In reply to @rstel7272 "Here is a good paper from Texas A&M .. https://www.tamuk.edu/finance/risk/animal-safety/mycobacterium-avium.html 10 years ago, I made the..." + (show)
@rstel7272

Here is a good paper from Texas A&M ..
https://www.tamuk.edu/finance/risk/animal-safety/mycobacterium-avium.html
10 years ago, I made the mistake of power washing pigeon poop inside a 2 stall barn several times.

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Rick I noticed here that you are quite interested in the subject of MAC and infections that go with it. I found out three weeks ago I have pseudomonas aeureginosa, pseudomonas putida and today I got message from NJH that aspergillus fumigatus grew in my fungal culture. It seems I catch constantly something which they say is not treated unless... My question to all of you is, how to protects yourself the best you can against new bacteria, fungus etc. I do whatever I believe is right (7% sodium chloride, aerobika and vest, sanitize, wash, sterilize) and still. How do you even know when to let the doctors know that you have symptoms and if you have multiple bugs; how do they know what to treat?
Thank you

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