1. < MAC & Bronchiectasis
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41 with MAC and Haemophilus Influenzae

Posted by silvermic22 @silvermic22, Sep 17 7:27am

Has anyone gone to Mayo Clinic in Arizona for Bronchiectasis? Any tips for Doctors to go to? Are they a center of excellence? How did you guys get through the big 3 medications? Very anxious newly diagnosed person here. I hope to still be alive long for my young daughter.

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

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kathyjjb | @kathyjjb | Sep 19 12:52pm
In reply to @silvermic22 "@kathyjjb thanks so much! You have given me hope. May I ask how much roughly you..." + (show)
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@kathyjjb thanks so much! You have given me hope. May I ask how much roughly you had to set aside in amount for 9 days in National Jewish Health? Is it expensive? Or worth it? Thanks. Also, does that mean you recommend Norton Thoracic more than Mayo? 🙂 I am unsure how to proceed…

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@silvermic22
I would definitely try and get to NJH. For me it took about 4 months to get in but I have heard that window is smaller now. Call NJH (303) 388-4461 and ask them if they take your insurance and if a referral is required. I didn't need a referral, but my doctor wrote one. As for local doctors, Personally, I would go to a Clinic that has been certified by NJH as one of their "Centers of Excellence" for BE/NTMs. I did not see Mayo on the list. Also, SET up the NJH appointment NOW, and if you decide not to go, you can cancel it.

Insurance should cover it but the NJH Insurance Dept can confirm your out of pocket. I stayed at a neighbor of a friend that has an Airbnb and gives great discounts if you contact her direct. Depending on length of stay, it could be as low as $100/ night. ALSO, you can walk to NJH as it's only a 10 minute walk (if that) from the rental home. NJH cafeteria lunches are super cheap and pretty good as well. So you can easily avoid restaurants, since home has a well equipped kitchen.
When I arrived at NJH, I was on Arikayce, Nuzyra, and LINezolid and within 2 days they reduced my daily Arikayce to 3/week and cut my Linezolid dose by 1/3. Some people can get Linezolid dose cut in half. Before I left for home, they took me off all my antibiotics and implemented watch and wait.

My Abscessus is resistant to Azithromycin and very difficult to treat BUT I absolutely do not believe that it will be my demise. It is also faster growing than MAC. I do nebulize 2/daily, take supplements for fatigue, eat healthy, and exercise. I am now increasing my exercise so that I sweat, which will allow me to reduce nebulizing to 1/daily but I'm still doing 2/daily.

Azithromycin is the BEST antibiotic for NTMs and if your MAC is not resistant, you should consider yourself very fortunate. Some people can't tolerate very well but MOST can. So, I hope that helps your outlook. It's very important to keep your stress level down. Maybe start with 10 minute daily calming meditations. Stress lowers immunity. I try and meditate or do qigong daily.

Stay positive!

Kathy

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ddoc79 | @ddoc79 | Sep 28 7:24am
In reply to @kathyjjb "@silvermic22 I would definitely try and get to NJH. For me it took about 4 months..." + (show)
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@silvermic22
I would definitely try and get to NJH. For me it took about 4 months to get in but I have heard that window is smaller now. Call NJH (303) 388-4461 and ask them if they take your insurance and if a referral is required. I didn't need a referral, but my doctor wrote one. As for local doctors, Personally, I would go to a Clinic that has been certified by NJH as one of their "Centers of Excellence" for BE/NTMs. I did not see Mayo on the list. Also, SET up the NJH appointment NOW, and if you decide not to go, you can cancel it.

Insurance should cover it but the NJH Insurance Dept can confirm your out of pocket. I stayed at a neighbor of a friend that has an Airbnb and gives great discounts if you contact her direct. Depending on length of stay, it could be as low as $100/ night. ALSO, you can walk to NJH as it's only a 10 minute walk (if that) from the rental home. NJH cafeteria lunches are super cheap and pretty good as well. So you can easily avoid restaurants, since home has a well equipped kitchen.
When I arrived at NJH, I was on Arikayce, Nuzyra, and LINezolid and within 2 days they reduced my daily Arikayce to 3/week and cut my Linezolid dose by 1/3. Some people can get Linezolid dose cut in half. Before I left for home, they took me off all my antibiotics and implemented watch and wait.

My Abscessus is resistant to Azithromycin and very difficult to treat BUT I absolutely do not believe that it will be my demise. It is also faster growing than MAC. I do nebulize 2/daily, take supplements for fatigue, eat healthy, and exercise. I am now increasing my exercise so that I sweat, which will allow me to reduce nebulizing to 1/daily but I'm still doing 2/daily.

Azithromycin is the BEST antibiotic for NTMs and if your MAC is not resistant, you should consider yourself very fortunate. Some people can't tolerate very well but MOST can. So, I hope that helps your outlook. It's very important to keep your stress level down. Maybe start with 10 minute daily calming meditations. Stress lowers immunity. I try and meditate or do qigong daily.

Stay positive!

Kathy

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@kathyjjb Airbnb contact in Denver?

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kathyjjb | @kathyjjb | Sep 28 1:26pm
In reply to @ddoc79 "@kathyjjb Airbnb contact in Denver?" + (show)
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@kathyjjb Airbnb contact in Denver?

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@ddoc79 Kelly (719) 353-2628. I believe she has a 3 or 4-night minimum.

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sarahlynn1960 | @sarahlynn1960 | Sep 29 5:42pm

Oh gosh yes, I hope you do go to NJH! One day after reading this forum, I just called them on a whim to see if it would be hard to get in. They took down my info right then and there, and said I would hear from an insurance person (who would review my insurance and tell me if I was covered, and by how much), then a nurse would call me to ask me a bunch of I take questions. It was so easy. I just called and the next thing I knew I was taken in by their system and guided the rest of the way! As for where to stay etc, we’re from NC so it was along way to get there, but we did get an air bnb or the other similar rental one. I hope you can go at least once. 💗

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sarahlynn1960 | @sarahlynn1960 | Sep 29 5:47pm

*….a nurse would call me with intake questions”…

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