I follow your posts because you write from experience besides all your reading.So you have responded to me before.As a reminder I was diagnosed with Bronchiectasis and MAC 2015 due to a bleed. I delayed treatment of Big Three until 11/21.Terrible side effects and a fall led to discontinuance.I faithfully follow airway clearance neb 3% twice a day(got a bleed from7%.) Also do the Vest twice a day.I exercise daily. Working with my third pulmonologist.Also visited The CF center at Colombia Presbeterian.
So why this post, I am losing weight. I am looking for suggestions. I am not good at a few little meals a day.
How about trying this? Smoothies made from your choice of: fruits, veggies, yogurt or milk (or almond or soy or coconut milk) double scoop Protein powder ( I used orgain protein and greens) and peanut or cashew butter whirred in a blender. Drink 4-8 oz every hour. Favorites, in season or frozen, berries, banana, pineapple, Apple, carrots, avocados. I use a middle of the line Ninja blender. One pitcher lasts 2 days. Also, 1 oz meat or cheese cubes or Baby Bel cheeses, 1/4 c servings of favorite nuts. Chocolate protein powder in morning coffee with whole milk. Individual pizzas.
I nibbled from morning until night, ate like a bird at mealtimes. With all the coughing, eating very much at once was nauseating.
After I quit antibiotics it took 6 months to stop losing weight, another year to get close to where I was before. I'm now a perennial nibbler, able to maintain weight by adding a snack or prepared protein shake if I start losing again.
Cindy, this is truly a tough diagnosis to hear - all of us were overwhelmed at first, but also relieved to have a name for what was making us so sick.
So, you don't say what level of experience that your pulmonologist has with treating MAC, but it is a fairly rare disease, and many do not treat it frequently.
The standard protocol for treatment is the Big 3 three times each week for at least a year. There can be times, for example treating M.abscessus, when daily dosing happens from the start. I have a few questions.
Do you know which variety of NTM you have? Did the lung culture include colony count and antibiotic sensitivity testing? Is your pulmonologist working together with an infectious disease doc? Did you ask why you need the drugs daily?
If the answers are that the pulmo did not explain, I would seek answers there first, and if you don't get a good feeling, try Mayo or National Jewish Health in Denver or another lung center.
Because you are under treatment for RA, you need to confirm the compatibility with continued steroid and Levaquin use with the antibiotics. My daughter has been transitioned from steroids to a biologic plus Methotrexate to spare her lungs, which are scarred by lifelong asthma plus bronchiectasis (but no MAC)
Let me know what you have learned. After 9 months of treatment, I had to find a new pulmo who was willing tyto answer my questions and work with me, not dictate to me.
Sue, thank you for your comments and important information. The steroids and Levaquin are for the Bronchiectasis. I imagine if I go on the Big 3 he would take me off the Levaquin. I take Simponi (biologic) IV every 8 weeks for my RA. I don't think the lung biopsy did a colony count nor a sensitivity. He is not working with an infectious disease specialist. My pulmonologist says he has treated others and that they've done well. And no I didn't ask why I would have to take daily. Thanks for the information. I may try and go to Mayo in Jacksonville.
I follow your posts because you write from experience besides all your reading.So you have responded to me before.As a reminder I was diagnosed with Bronchiectasis and MAC 2015 due to a bleed. I delayed treatment of Big Three until 11/21.Terrible side effects and a fall led to discontinuance.I faithfully follow airway clearance neb 3% twice a day(got a bleed from7%.) Also do the Vest twice a day.I exercise daily. Working with my third pulmonologist.Also visited The CF center at Colombia Presbeterian.
So why this post, I am losing weight. I am looking for suggestions. I am not good at a few little meals a day.
Hi Rita, I’m about a month treatment with the standard 3 antibiotics. In addition infusion with Amikacin, I start feeling a bit better but the side effects are getting on me now, thanks God they are not that bad. We have to keep pushing, no choice at least for 3 months then you can search for other alternatives. Concerning the small meals is not for everyone, I have my 3 regular meals and in between some nutritious snacks.
God bless you and good luck. Carlos.
Sue, thank you for your comments and important information. The steroids and Levaquin are for the Bronchiectasis. I imagine if I go on the Big 3 he would take me off the Levaquin. I take Simponi (biologic) IV every 8 weeks for my RA. I don't think the lung biopsy did a colony count nor a sensitivity. He is not working with an infectious disease specialist. My pulmonologist says he has treated others and that they've done well. And no I didn't ask why I would have to take daily. Thanks for the information. I may try and go to Mayo in Jacksonville.
Perhaps before you start over with another set of docs, it would be worthwhile to ask questions of the current one. Then you can decide whether to change. Some doctors and patients take a little time to settle into a comfortable relationship. You could let your doctor know you are a person who needs complete info, time to process, and then ask questions & get answers. If the doc seems unreceptive to that, it is time to change.
Do you feel the doc is receptive to asking for more details?
Sue
I am a 76 year old female with alpha-1 anti-trypsin deficiency, COPD, bronchiectasis and now MAC. I did Azithromycin, ethambutol and rifampin three days per week. ( Previously- decades ago- I was allergic to erythromycin.) After 2 weeks i had a rash on my face. Then I developed an arrythmia and now tinnitis. ( Plus nausea, dizziness, poor appetite and fatigue.) Stopped the antibiotics so as to get cardiology consult and then try other antibiotics. Has anyone had to take the other drug that requires FDA approval? What other antibiotics could substitute for azithromycin? Help.
I am a 76 year old female with alpha-1 anti-trypsin deficiency, COPD, bronchiectasis and now MAC. I did Azithromycin, ethambutol and rifampin three days per week. ( Previously- decades ago- I was allergic to erythromycin.) After 2 weeks i had a rash on my face. Then I developed an arrythmia and now tinnitis. ( Plus nausea, dizziness, poor appetite and fatigue.) Stopped the antibiotics so as to get cardiology consult and then try other antibiotics. Has anyone had to take the other drug that requires FDA approval? What other antibiotics could substitute for azithromycin? Help.
Hello, Dear, I took the same 3, after a sensitive test, 3 times a weak, for almost 3 years, then I changed to Claritomicine and maintained the other 2, daily. But I really got better after 46 infusions of Amikacine, which I quit because of hearing losses. I am still in treatment. If you need further informations about my protocole, please let me know. Wish you sucess in your treatment.
I am a 76 year old female with alpha-1 anti-trypsin deficiency, COPD, bronchiectasis and now MAC. I did Azithromycin, ethambutol and rifampin three days per week. ( Previously- decades ago- I was allergic to erythromycin.) After 2 weeks i had a rash on my face. Then I developed an arrythmia and now tinnitis. ( Plus nausea, dizziness, poor appetite and fatigue.) Stopped the antibiotics so as to get cardiology consult and then try other antibiotics. Has anyone had to take the other drug that requires FDA approval? What other antibiotics could substitute for azithromycin? Help.
Given the complications and drug sensitivity, I would think you should be seen by an Infectious Disease specialist - they have access to the largest arsenal of antibiotics, and can try different combinations for you.
Have you been seeing an ID doc or a pulmonologist?
Sue
Welcome to Mayo Connect and the MAC & Bronchiectasis group. I hope you will find the members here to be very helpful and encouraging as you begin this journey. It may seem scary at first if you have read anything about the drug therapy, but feel free to ask any questions as they come up, and someone will try to answer.
Here is a recent discussion about the medications: https://connect.mayoclinic.org/discussion/drug-therapy/
and a little older one: https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/
A very little about my experience - When I started the medications, the pulmonology nurse suggested I start with one for the first 3 doses, add a second for the next three doses, and finally the third at 2 weeks. This gave my body a little time to acclimate. I struggled a lot with nausea from the meds, and finally figured out it helped to take all 3 at bedtime with a small snack. That way I slept through the worst queasiness. Maybe not ideal, again the wise nurse "the most effective medication is the one you take every time." I also had appetite and weight loss issues, and supplemented with protein shakes and homemade fiber and vitamin rich smoothies.
Can you tell me a little about what led to your diagnosis and the prescription for the "Big 3"?
Sue
Sue, will a trip to the beach make my MAC worse?
I had to stop taking the big 3 because of a bad reaction. I am asymptomatic, so am under observation by doctor—disease had not progressed after last x-ray.
What suggestions do you have for me?
Thank you—you always offer good info!
Sue, will a trip to the beach make my MAC worse?
I had to stop taking the big 3 because of a bad reaction. I am asymptomatic, so am under observation by doctor—disease had not progressed after last x-ray.
What suggestions do you have for me?
Thank you—you always offer good info!
When you say "a trip to the beach", which do you mean?
The ocean & gulf beaches are not considered to carry much risk because the saline water is inhospitable to NTM/MAC.
That said, many of us in this group spend time on or near fresh water every year. I spend a lot of time paddle boarding & playing on Midwestern lakes all summer. I take the single precaution of keeping my face out of and away from the water. That means no tubing, diving, etc, but I look forward to pontoon boat rides and picnics on the shore. (Hard not to explore the underwater with my littles, so occasionally I will don a mask and snorkel for a quick look.)
I am sure there is some risk involved, but since NTM/MAC is everywhere - air, water & soil - it is impossible to be completely safe. I just stay conscious of high risks & take precautions - like masks when I garden, and keeping the soil moist to reduce particles in the air.
AND I definitely continue 7% saline nebs and airway clearance to make my lungs inhospitable to MAC. Written as I puff & cough!
What level of risk do you find to be acceptable? Have you asked your doctor about visiting the lake?
Sue
When you say "a trip to the beach", which do you mean?
The ocean & gulf beaches are not considered to carry much risk because the saline water is inhospitable to NTM/MAC.
That said, many of us in this group spend time on or near fresh water every year. I spend a lot of time paddle boarding & playing on Midwestern lakes all summer. I take the single precaution of keeping my face out of and away from the water. That means no tubing, diving, etc, but I look forward to pontoon boat rides and picnics on the shore. (Hard not to explore the underwater with my littles, so occasionally I will don a mask and snorkel for a quick look.)
I am sure there is some risk involved, but since NTM/MAC is everywhere - air, water & soil - it is impossible to be completely safe. I just stay conscious of high risks & take precautions - like masks when I garden, and keeping the soil moist to reduce particles in the air.
AND I definitely continue 7% saline nebs and airway clearance to make my lungs inhospitable to MAC. Written as I puff & cough!
What level of risk do you find to be acceptable? Have you asked your doctor about visiting the lake?
Sue
Sue, thank you for your reply. We will be going to
South Carolina beach, so I assume this will be ok if I am careful. My MAC diagnosis has caused a lot of stress!
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How about trying this? Smoothies made from your choice of: fruits, veggies, yogurt or milk (or almond or soy or coconut milk) double scoop Protein powder ( I used orgain protein and greens) and peanut or cashew butter whirred in a blender. Drink 4-8 oz every hour. Favorites, in season or frozen, berries, banana, pineapple, Apple, carrots, avocados. I use a middle of the line Ninja blender. One pitcher lasts 2 days. Also, 1 oz meat or cheese cubes or Baby Bel cheeses, 1/4 c servings of favorite nuts. Chocolate protein powder in morning coffee with whole milk. Individual pizzas.
I nibbled from morning until night, ate like a bird at mealtimes. With all the coughing, eating very much at once was nauseating.
After I quit antibiotics it took 6 months to stop losing weight, another year to get close to where I was before. I'm now a perennial nibbler, able to maintain weight by adding a snack or prepared protein shake if I start losing again.
What have you tried so far?
Sue
Sue, thank you for your comments and important information. The steroids and Levaquin are for the Bronchiectasis. I imagine if I go on the Big 3 he would take me off the Levaquin. I take Simponi (biologic) IV every 8 weeks for my RA. I don't think the lung biopsy did a colony count nor a sensitivity. He is not working with an infectious disease specialist. My pulmonologist says he has treated others and that they've done well. And no I didn't ask why I would have to take daily. Thanks for the information. I may try and go to Mayo in Jacksonville.
Hi Rita, I’m about a month treatment with the standard 3 antibiotics. In addition infusion with Amikacin, I start feeling a bit better but the side effects are getting on me now, thanks God they are not that bad. We have to keep pushing, no choice at least for 3 months then you can search for other alternatives. Concerning the small meals is not for everyone, I have my 3 regular meals and in between some nutritious snacks.
God bless you and good luck. Carlos.
Perhaps before you start over with another set of docs, it would be worthwhile to ask questions of the current one. Then you can decide whether to change. Some doctors and patients take a little time to settle into a comfortable relationship. You could let your doctor know you are a person who needs complete info, time to process, and then ask questions & get answers. If the doc seems unreceptive to that, it is time to change.
Do you feel the doc is receptive to asking for more details?
Sue
I am a 76 year old female with alpha-1 anti-trypsin deficiency, COPD, bronchiectasis and now MAC. I did Azithromycin, ethambutol and rifampin three days per week. ( Previously- decades ago- I was allergic to erythromycin.) After 2 weeks i had a rash on my face. Then I developed an arrythmia and now tinnitis. ( Plus nausea, dizziness, poor appetite and fatigue.) Stopped the antibiotics so as to get cardiology consult and then try other antibiotics. Has anyone had to take the other drug that requires FDA approval? What other antibiotics could substitute for azithromycin? Help.
Hello, Dear, I took the same 3, after a sensitive test, 3 times a weak, for almost 3 years, then I changed to Claritomicine and maintained the other 2, daily. But I really got better after 46 infusions of Amikacine, which I quit because of hearing losses. I am still in treatment. If you need further informations about my protocole, please let me know. Wish you sucess in your treatment.
Given the complications and drug sensitivity, I would think you should be seen by an Infectious Disease specialist - they have access to the largest arsenal of antibiotics, and can try different combinations for you.
Have you been seeing an ID doc or a pulmonologist?
Sue
Sue, will a trip to the beach make my MAC worse?
I had to stop taking the big 3 because of a bad reaction. I am asymptomatic, so am under observation by doctor—disease had not progressed after last x-ray.
What suggestions do you have for me?
Thank you—you always offer good info!
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Helpful -
Hug
1 ReactionWhen you say "a trip to the beach", which do you mean?
The ocean & gulf beaches are not considered to carry much risk because the saline water is inhospitable to NTM/MAC.
That said, many of us in this group spend time on or near fresh water every year. I spend a lot of time paddle boarding & playing on Midwestern lakes all summer. I take the single precaution of keeping my face out of and away from the water. That means no tubing, diving, etc, but I look forward to pontoon boat rides and picnics on the shore. (Hard not to explore the underwater with my littles, so occasionally I will don a mask and snorkel for a quick look.)
I am sure there is some risk involved, but since NTM/MAC is everywhere - air, water & soil - it is impossible to be completely safe. I just stay conscious of high risks & take precautions - like masks when I garden, and keeping the soil moist to reduce particles in the air.
AND I definitely continue 7% saline nebs and airway clearance to make my lungs inhospitable to MAC. Written as I puff & cough!
What level of risk do you find to be acceptable? Have you asked your doctor about visiting the lake?
Sue
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1 ReactionSue, thank you for your reply. We will be going to
South Carolina beach, so I assume this will be ok if I am careful. My MAC diagnosis has caused a lot of stress!
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Like -
Helpful -
Hug
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