1. < MAC & Bronchiectasis

My MAC and bronchiectasis treatment

Posted by pal131 @pal131, Jan 30, 2020

I have been diagnosed with Mac disease and bronchiectasis 15 years ago. I've had many bouts of pneumonia and bronchitis. Finally my local Dr in Naples FL has said that I have active MAC issues going on and he wants me to go on the 3 drug plan for 18 months. I am very interested in hearing from others that have tried this plan and see if it is worth doing in the long run. I have heard that it sometimes makes you nauseous and you lose weight. And from other friends that have already been on this plan and they still have many issues with both of these diseases. One has become resilient to taking many antibiotics and they are no longer effective. I feel like maybe I should just make sure that I have the pneumonia shot every other year and take elderberry, vitamin C, echinacea, probiotics and airbourne every day and give that a try and see if it is effective before doing the 3 drug program. I'm afraid that it will damage my organs etc because they are so strong. Any suggestions or help from others would be appreciated. I did have a bronchiscope done and sputum test and breathing test all came back with bad indicators of my serious problem. Thanks.

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migizii | @migizii | Feb 1, 2020
In reply to @thumperguy "@migizii, From my point-of-view not needing an antibiotic for a year or close to it qualifies..." + (show)
@thumperguy

@migizii, From my point-of-view not needing an antibiotic for a year or close to it qualifies as a big success. I seem to need a round every four or so months. Hope 7% is gonna change all that. Anyway, congrats to you for makin' it a year.

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Thanks so much! May we all stay as well as is possible❤️

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derbeltal | @derbeltal | Feb 2, 2020
In reply to @sueinmn "@derbeltal Well, everyone is different - you will hear that a lot here! My digestive issues..." + (show)
@sueinmn

@derbeltal Well, everyone is different - you will hear that a lot here! My digestive issues were up and down the whole time on the antibiotics - them getting much worse after 6 months of daily meds contributed to the doc stopping the drugs. I have been off for 6 weeks now, and the stomach issues are subsiding. Here is what I have been doing, at the direction of my primary doc, to help it along.
Take daily probiotics. Use a proton-pump inhibitor (PPI) - in my case Omeperazole daily, in the morning. She originally suggested two weeks & stop, then continue at two week intervals, up to 2 months, if the issues persist. I will try stopping again next week, and am hopeful of being done as my stomach is feeling much better. (She also said to take Tums or similar for digestive upsets, something you are not supposed to do while on the antibiotics.)
To counter the weight loss, which I could ill afford, I have been forcing myself to eat a small high-nutrition, high-calorie bit of food every two hours for over a year. I eat an ounce of cheese, a handful of cashews, a scoop of peanut butter, a scoop of guacamole on crackers, 1/2 a protein bar, 6-8 ounces of high-calorie homemade fruit/veg/protein smoothie or similar. I do it, whether I am hungry or not, from 10 am until at least 6 pm, plus meals. Also, Carnation Instant breakfast in my coffee. This stopped the weight loss, but since stopping the meds I still have no appetite and haven't regained any weight.
My primary says to be patient - it is not unreasonable to take 4-6 months for everything to rebalance after 18 months of the meds.
Good luck as you continue this journey. Feel free to ask more questions as they arise.
Sue

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Thanks for the input. My pulmonary dr. just put me on Prilosec. Maybe that will help. I have not been eating any snacks so I will start that. At least, it looks like it will get better since I am still new. I really appreciate all the information. Thanks so much. Hope everyone continues to do well.

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rits | @rits | Feb 2, 2020
In reply to @sueinmn "@derbeltal Well, everyone is different - you will hear that a lot here! My digestive issues..." + (show)
@sueinmn

@derbeltal Well, everyone is different - you will hear that a lot here! My digestive issues were up and down the whole time on the antibiotics - them getting much worse after 6 months of daily meds contributed to the doc stopping the drugs. I have been off for 6 weeks now, and the stomach issues are subsiding. Here is what I have been doing, at the direction of my primary doc, to help it along.
Take daily probiotics. Use a proton-pump inhibitor (PPI) - in my case Omeperazole daily, in the morning. She originally suggested two weeks & stop, then continue at two week intervals, up to 2 months, if the issues persist. I will try stopping again next week, and am hopeful of being done as my stomach is feeling much better. (She also said to take Tums or similar for digestive upsets, something you are not supposed to do while on the antibiotics.)
To counter the weight loss, which I could ill afford, I have been forcing myself to eat a small high-nutrition, high-calorie bit of food every two hours for over a year. I eat an ounce of cheese, a handful of cashews, a scoop of peanut butter, a scoop of guacamole on crackers, 1/2 a protein bar, 6-8 ounces of high-calorie homemade fruit/veg/protein smoothie or similar. I do it, whether I am hungry or not, from 10 am until at least 6 pm, plus meals. Also, Carnation Instant breakfast in my coffee. This stopped the weight loss, but since stopping the meds I still have no appetite and haven't regained any weight.
My primary says to be patient - it is not unreasonable to take 4-6 months for everything to rebalance after 18 months of the meds.
Good luck as you continue this journey. Feel free to ask more questions as they arise.
Sue

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I recently discovered Boost plus chocolate. It has 360 calories for a somewhat small bottle and is delicious.

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esssbeee | @esssbeee | Feb 2, 2020

A nutritionist at NJH told me the chocolate in Boost is cocoa and therefore not a problem for those of us with GERD, I love the Boost with 360 calories and the chocolate flavored variety is my favorite. I sometimes put 1/2 banana into a blender with it. Yummy!

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unicorn | @unicorn | Feb 2, 2020

just wondering if anyone is having heart palpitations with this disease?? I have been off meds for 2 years, destroyed my organs, and now the palpitations are getting much worse. High hemoglobin and hemotocrit, Possibly going on oxygen may help. Not the fashion statement I was hoping for.

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3 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 2, 2020
In reply to @unicorn "just wondering if anyone is having heart palpitations with this disease?? I have been off meds..." + (show)
@unicorn

just wondering if anyone is having heart palpitations with this disease?? I have been off meds for 2 years, destroyed my organs, and now the palpitations are getting much worse. High hemoglobin and hemotocrit, Possibly going on oxygen may help. Not the fashion statement I was hoping for.

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@unicorn What does your doc have to say about the palpitations? As far as I know they are not typically a MAC or bronchiectasis symptom, but we are all different. In your situation I would surely want them to find a diagnosis that fit the symptoms. Sue

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1 reply
heathert | @heathert | Feb 2, 2020

@unicorn I did not get palpitations from MAC but because I was anxious about having MAC and then about the palpitations I got them. Hope you can get this sorted out soon. Take Care Heather

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1 reply
kathyhg | @kathyhg | Feb 3, 2020
In reply to @heathert "@unicorn I did not get palpitations from MAC but because I was anxious about having MAC..." + (show)
@heathert

@unicorn I did not get palpitations from MAC but because I was anxious about having MAC and then about the palpitations I got them. Hope you can get this sorted out soon. Take Care Heather

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I got heart palpitations while I was on the Big 3. My respirologist discounted them but eventually stopped my medications when I got tinnitus and hearing loss. My palpitations stopped after I stopped taking the medications. I have since found a new respirologist.

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unicorn | @unicorn | Feb 3, 2020
In reply to @sueinmn "@unicorn What does your doc have to say about the palpitations? As far as I know..." + (show)
@sueinmn

@unicorn What does your doc have to say about the palpitations? As far as I know they are not typically a MAC or bronchiectasis symptom, but we are all different. In your situation I would surely want them to find a diagnosis that fit the symptoms. Sue

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thanks guys. Still going through testing to figure out whats what. I just wasn't sure if palpitations were one of the results of the big 3. It seems gerd and a lot of other things are, but now that I know they are not necessarily a side effect I will persue more forcefully. All the other things I got from the big three have stayed with me for 2 years since stopping. The stomach cramps have stopped but the bowels are not perfect so the weight loss is constant. Had blood tests and hemotacrit and hemoglobin slightly over normal. One cause of that is low oxygen, so I thought maybe we all had the palpitations. But not the case so maybe high cholesterol or something else. thanks again

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1 reply
Brenda R. | @brigby | Feb 3, 2020
In reply to @unicorn "thanks guys. Still going through testing to figure out whats what. I just wasn't sure if..." + (show)
@unicorn

thanks guys. Still going through testing to figure out whats what. I just wasn't sure if palpitations were one of the results of the big 3. It seems gerd and a lot of other things are, but now that I know they are not necessarily a side effect I will persue more forcefully. All the other things I got from the big three have stayed with me for 2 years since stopping. The stomach cramps have stopped but the bowels are not perfect so the weight loss is constant. Had blood tests and hemotacrit and hemoglobin slightly over normal. One cause of that is low oxygen, so I thought maybe we all had the palpitations. But not the case so maybe high cholesterol or something else. thanks again

Jump to this post

I started experiencing funny heart palpitations, so they had me wear a ZIO patch for 2 weeks, then had a radioactive isotope stress test. Thankfully it’s just tachycardia, and I am to ignore unless symptoms increase. I take Pulmicort 2x daily as an inhalant, and Gentamicin 1x daily, also as an inhalant. Have not had to start Big 3. I have m. Abscessus, MAC, MAI.

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