Received respiratory culture result today. In addition to the MAC I now have Pseudomonas. What is the treatment for this? How long and is it effective?
I had MAC and then pseudomonas which was treated with Levoquin. I am still on it but only a few days a week now as a precaution /preventative measure. Good luck. That’s a tough one. Irene5
I had MAC and then pseudomonas which was treated with Levoquin. I am still on it but only a few days a week now as a precaution /preventative measure. Good luck. That’s a tough one. Irene5
Thanks Irene. I'm going to try and not think about it. Just keep busy. Unfortunately, I took azithromycin for bronchitis and had no idea that I shouldn't. I will just wait and see and do something fun to get my mind off of this until my doctor's appointment. I'm just going to stay positive. Kathy
Please explain why you should not use azithromycin for bronchitis. I take it three times a week for lung inflammation and it works wonders. I have bronchiectasis and pseudomonas.
I would go for the big guns and ask for 14 days of IV antibiotics. I would not mess around. Then you will have the population of pseudomonas be minimal. You will need to learn to use either the Vest or the Monarch or the Aerobika along with nebulizing saline and albuterol and eventually you will be on pulmozyme and inhaled tobramycin and now I am also on cayston. Keep yourself in great shape. Walk, lift weights, do yoga, meditate, etc.
I would go for the big guns and ask for 14 days of IV antibiotics. I would not mess around. Then you will have the population of pseudomonas be minimal. You will need to learn to use either the Vest or the Monarch or the Aerobika along with nebulizing saline and albuterol and eventually you will be on pulmozyme and inhaled tobramycin and now I am also on cayston. Keep yourself in great shape. Walk, lift weights, do yoga, meditate, etc.
Did you do a course of IV? And if so which one? Do you find that the Albuterol makes a difference in your ability to expel the mucus? I read somewhere that Pulmozyme is not recommended for Non Cystic Fibrosis Bronchiectasis. But what has your experience been with using it? Also Pulmozyme and Cayston are not covered by medicare unless you have CF and they are super expensive. Do you have CF? Do you use Toby and Cayston?? Or just one of them now?
Please explain why you should not use azithromycin for bronchitis. I take it three times a week for lung inflammation and it works wonders. I have bronchiectasis and pseudomonas.
I just know it's a one of the important antibiotics in treating MAC and MAC can become resistant to Azithromycin. I don't know if my MAC is resistant, but it looks like it is for sure resistant to Clarithromycin.
Did you do a course of IV? And if so which one? Do you find that the Albuterol makes a difference in your ability to expel the mucus? I read somewhere that Pulmozyme is not recommended for Non Cystic Fibrosis Bronchiectasis. But what has your experience been with using it? Also Pulmozyme and Cayston are not covered by medicare unless you have CF and they are super expensive. Do you have CF? Do you use Toby and Cayston?? Or just one of them now?
I am immediately hospitalized with an infection and put on IV antibiotics. They use something that was effective for the last infection until the sputum culture results come back. Use any and all inhalation drugs you can. They all help. I have heard that pulmozyme is not useful with NCFBE but my doctor who takes care of me when I am hospitalized suggested I use it. I get it paid for by the company who markets it. Anyone can apply. I pay nothing. Cayston is now covered for NCFBE! I was approved right away! I am on Medicare/Medicaid. I do NOT have CF. Yes, I will be inhaling tobi one month and cayston the alternating month for the rest of my life. Use any and all meds you can. I walk 5000 steps a day. lift light weights, do yoga and kung fu. It is important for us to be in top shape. Helps you breathe, helps you fight against infections. I have pseudomonas which is not curable so I also do not drink water from faucets. I use a .2 micron filtration Lifestraw pitcher. I do not take a shower. It's dangerous due to aerosolizing pseudomonas. My faucets have the aerosolizers taken off. I bathe standing at the kitchen sink with a wash cloth. I wash my hair in the kitchen sink. I boil my neb cups after each use for 12 minutes every. time. I. use. them. which is 3 times a day. This is my life now.
I see dr Griffith at NJH And mypseudomonas which showed for three months in sputum were not treated either- I did not have symptoms and I was told they were colonized- right or wrong who knows. They have not shown so far. I noticed some people write here they were treated some were not.
I am immediately hospitalized with an infection and put on IV antibiotics. They use something that was effective for the last infection until the sputum culture results come back. Use any and all inhalation drugs you can. They all help. I have heard that pulmozyme is not useful with NCFBE but my doctor who takes care of me when I am hospitalized suggested I use it. I get it paid for by the company who markets it. Anyone can apply. I pay nothing. Cayston is now covered for NCFBE! I was approved right away! I am on Medicare/Medicaid. I do NOT have CF. Yes, I will be inhaling tobi one month and cayston the alternating month for the rest of my life. Use any and all meds you can. I walk 5000 steps a day. lift light weights, do yoga and kung fu. It is important for us to be in top shape. Helps you breathe, helps you fight against infections. I have pseudomonas which is not curable so I also do not drink water from faucets. I use a .2 micron filtration Lifestraw pitcher. I do not take a shower. It's dangerous due to aerosolizing pseudomonas. My faucets have the aerosolizers taken off. I bathe standing at the kitchen sink with a wash cloth. I wash my hair in the kitchen sink. I boil my neb cups after each use for 12 minutes every. time. I. use. them. which is 3 times a day. This is my life now.
That is major news that Cayston is now covered for NCFBE. Thank you for letting me know. When I tried it, it raised my heart rate quite alot. But I should try it again and see. I cannot use Toby as it caused reduced urine output for me. Even inhaled it can impact the kidneys for some people. If you can use it, you are fortunate!
I had MAC and then pseudomonas which was treated with Levoquin. I am still on it but only a few days a week now as a precaution /preventative measure. Good luck. That’s a tough one. Irene5
Thanks Irene. I'm going to try and not think about it. Just keep busy. Unfortunately, I took azithromycin for bronchitis and had no idea that I shouldn't. I will just wait and see and do something fun to get my mind off of this until my doctor's appointment. I'm just going to stay positive. Kathy
Please explain why you should not use azithromycin for bronchitis. I take it three times a week for lung inflammation and it works wonders. I have bronchiectasis and pseudomonas.
I would go for the big guns and ask for 14 days of IV antibiotics. I would not mess around. Then you will have the population of pseudomonas be minimal. You will need to learn to use either the Vest or the Monarch or the Aerobika along with nebulizing saline and albuterol and eventually you will be on pulmozyme and inhaled tobramycin and now I am also on cayston. Keep yourself in great shape. Walk, lift weights, do yoga, meditate, etc.
Did you do a course of IV? And if so which one? Do you find that the Albuterol makes a difference in your ability to expel the mucus? I read somewhere that Pulmozyme is not recommended for Non Cystic Fibrosis Bronchiectasis. But what has your experience been with using it? Also Pulmozyme and Cayston are not covered by medicare unless you have CF and they are super expensive. Do you have CF? Do you use Toby and Cayston?? Or just one of them now?
I just know it's a one of the important antibiotics in treating MAC and MAC can become resistant to Azithromycin. I don't know if my MAC is resistant, but it looks like it is for sure resistant to Clarithromycin.
I am immediately hospitalized with an infection and put on IV antibiotics. They use something that was effective for the last infection until the sputum culture results come back. Use any and all inhalation drugs you can. They all help. I have heard that pulmozyme is not useful with NCFBE but my doctor who takes care of me when I am hospitalized suggested I use it. I get it paid for by the company who markets it. Anyone can apply. I pay nothing. Cayston is now covered for NCFBE! I was approved right away! I am on Medicare/Medicaid. I do NOT have CF. Yes, I will be inhaling tobi one month and cayston the alternating month for the rest of my life. Use any and all meds you can. I walk 5000 steps a day. lift light weights, do yoga and kung fu. It is important for us to be in top shape. Helps you breathe, helps you fight against infections. I have pseudomonas which is not curable so I also do not drink water from faucets. I use a .2 micron filtration Lifestraw pitcher. I do not take a shower. It's dangerous due to aerosolizing pseudomonas. My faucets have the aerosolizers taken off. I bathe standing at the kitchen sink with a wash cloth. I wash my hair in the kitchen sink. I boil my neb cups after each use for 12 minutes every. time. I. use. them. which is 3 times a day. This is my life now.
Dr McShanes nurse said we’re not going to treat it. I’m confused.
I see dr Griffith at NJH And mypseudomonas which showed for three months in sputum were not treated either- I did not have symptoms and I was told they were colonized- right or wrong who knows. They have not shown so far. I noticed some people write here they were treated some were not.
That is major news that Cayston is now covered for NCFBE. Thank you for letting me know. When I tried it, it raised my heart rate quite alot. But I should try it again and see. I cannot use Toby as it caused reduced urine output for me. Even inhaled it can impact the kidneys for some people. If you can use it, you are fortunate!