My MAC and bronchiectasis treatment

Posted by pal131 @pal131, Jan 30 9:00am

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.

Liked by girlbybay

@marthachs

@pal131 , I’m so sorry you are needing to join the MAC club, but also, so glad to have you! In my case, by the time I started daily treatment with the “big three” I had a lot of fatigue and weight loss from the disease. After a month on the meds, my energy and appetite began to return. I've had other side effects (all things I can manage) but I can definitely tell that I’m better for taking the drugs. Now I’m worried about what will happen when I stop them in a month or so!

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@marthachs You may want to consider talking to your dr about going on maintenance meds. The infection may be mostly gone, but the reason you were able to catch is not. That is why there is a high incidence of the mac returning. I feel like now that most of us are on the 7% saline; that has helped curb this quite a bit. I have tested negative for mac since 2014, but I have been on monthly maintenance antibiotics up to the present. At first I was taking ciprofloxacin and doxycycline every other month for 10 days. Taking meds 10 days a month are very do-able, and it did knock out my mac. I later switched to just doing the cipro bi-monthly and tobramycin bi-monthly to keep pseudomonas away. All treatments must be tailor made for each patient. My treatment plan will not work for everyone.

Liked by Lisa Lucier

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@migizii

I haven’t commented as I don’t know if using the 7% saline solution is the reason for my success or not…..I guess even after a year or more on this forum, I have not contracted any major infections that necessitated antibiotic interventions for bronchiectasis. I was diagnosed in 2017, so at this point, I guess I’m a compelling reason to use it! However, when I say things like this, I get worried something will jinx everything as the pulmonologist said this disease moves at its own pace….unique to each person…..

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@migizi Hellooooo! Just want to say this; there is a reason salt was used to preserve fish and meat over the millinium. Bacteria won't grow in it! Stands to reason that mac wouldn't like salty lungs. Just sayin'….

Liked by ginak, lorifilipek

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@marthachs

@sueinmn I’m at 12 months now on daily antibiotics (I had a small cavity or 2). I had to drop azithromycin at about month 7 because it was damaging my hearing and substituted ciprofloxacin at that point. My cough has always been dry, so I had no treatment until I coughed up some blood and had bronchoscopy to get samples for culture. So, no idea about current status or when/if I achieved culture negative status. I just had my first follow up CT scan which looks somewhat improved, but not perfect by any means. I see the id doc in a couple of weeks to decide what to do next.
I take one Florastor capsule with the ciprofloxacin in the morning, a multivitamin, calcium tab, and one Culturelle capsule mid-day, and the rest of the antibiotics on an empty stomach at bedtime. I have tried the Aerobika but it doesn’t seem to change anything, so I don’t really do it. Never needed an inhaler and haven’t tried the saline. Think I might want to try the saline at this point after reading so much about it here, and especially as I think about coming off antibiotics.
Aggressively managing “silent reflux” has been key for me I think, and I boil all my drinking water now. If I eat chocolate or pizza, especially late in the day, or eat too close to bed time, my cough comes right back! Stress will definitely do it too. And I never lie down with my head and chest less than 30 degrees…unless I’m getting a CT scan!

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@marthachs From all that I have read, one should take their probiotics three hours apart from their antibiotic. The antibiotic will kill the probiotic for the most part. As far as pizza and chocolate causing you to cough; many of us have food triggers with this disease. When I had an active mac infection; most sugary food and gluten foods made me cough constantly. Pizza has a higher than usual amount of gluten in it. Many people in this group have stated the same; sugar & gluten. I did an elimination diet for years to figure out all of my food triggers. Besides sugar and gluten, it was food dyes as well. I could not drink Mountain Dew or eat M&M's due to the yellow and blue dye. Now that my infection has cleared up, I am able to tolerate sugar and gluten much better. I still avoid food dyes whenever possible. I stick to a whole foods diet. These are just 'tid-bits' from someone who has been there.

Liked by lorifilipek

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@migizii

I haven’t commented as I don’t know if using the 7% saline solution is the reason for my success or not…..I guess even after a year or more on this forum, I have not contracted any major infections that necessitated antibiotic interventions for bronchiectasis. I was diagnosed in 2017, so at this point, I guess I’m a compelling reason to use it! However, when I say things like this, I get worried something will jinx everything as the pulmonologist said this disease moves at its own pace….unique to each person…..

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Idle musing about antibiotics led to this thought. What little I know about commercial fishing happens to include awareness of one of it's downsides, i.e., something called "by-kill," the fish that are unintentionally caught and die along with the cash crop, but never end up on the plate of a person who eats things that swim.. An analogy fits nicely to what happens when we take an antibiotic to destroy an enemy microbe and unavoidably destroy a host of the good guys and gals in our gut; our gut microbiota if you will. It's why I'd bet lots of habitues of this forum swallow a probiotic capsule or, like me, eat a bit of fermented food each day. And now that there's lots of buzz about a communication "axis" between one's gut and one's lungs there's even more reason for us to keep healthy down there. Who would've thunk it? I realize I'm preachin' to the choir, but if you're a new "choir member" I'll add just for you, you don't have to take a pill or even ferment your own probiotic food. No, you can buy "unpasteurized" sauerkraut or kimchi in the refrigerator case at your grocery store. In (gut) Health, Don

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@derbeltal

I have been taking the 3 meds for three months. Still have digestive issues with stomach pain. I have lost 20 lbs. Will the digestive issues eventually stop? The excess coughing has subsided so it is working.

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@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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@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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@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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@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.

Liked by Brenda R.

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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!

Liked by heathert, Brenda R.

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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

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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@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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@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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@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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@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

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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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