1. < MAC & Bronchiectasis

I was recently diagnosed with Bronchiectasis.

Posted by mmteach @mmteach, May 10, 2016

I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!

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irene5 Irene Estes | @irene5 | Jul 16, 2020
In reply to @nina1944 "I have had infection for a long time was only able to take antibiotics up to..." + (show)
@nina1944

I have had infection for a long time was only able to take antibiotics up to 4 a day 3times a week and didn't last 2 weeks till I got the c diff infection back and had to stop the meds. The Infectious Disease Dr wanted to put me on an inhalation medicine and my lung dr said it would make me more sick as the cure is worst than the disease. So I am nebulizing and using vest daily. What brothers me is the no energy and weight loss.

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@nina1944 Weight loss and no energy is typical with MAC. I used to tell my doctors that I have no stamina. I am sorry you have dealt with Cdif. That’s harsh. Your doctor who says the “cure is worse than the disease” is quoting what has been said for years. In many ways it is - however, there are new treatments and trials that are coming to the fore. My doctors have had to modify and adjust accordingly and frequently with me as we are all different. I started inhaled Arikayce a month ago. It has not been without side effects. But I finally feel like there is a light at the end of the tunnel in what has been a long five year journey. I would revisit what the ID doctor has suggested. You can not continue with weight loss. There are nutrition people who can help you with that. You can also find helpful diet info on this site. Your pulmonologist and your ID doctor should be working together for your benefit. irene5

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1 reply
nina1944 | @nina1944 | Jul 17, 2020
In reply to @irene5 "@nina1944 Weight loss and no energy is typical with MAC. I used to tell my doctors..." + (show)
@irene5

@nina1944 Weight loss and no energy is typical with MAC. I used to tell my doctors that I have no stamina. I am sorry you have dealt with Cdif. That’s harsh. Your doctor who says the “cure is worse than the disease” is quoting what has been said for years. In many ways it is - however, there are new treatments and trials that are coming to the fore. My doctors have had to modify and adjust accordingly and frequently with me as we are all different. I started inhaled Arikayce a month ago. It has not been without side effects. But I finally feel like there is a light at the end of the tunnel in what has been a long five year journey. I would revisit what the ID doctor has suggested. You can not continue with weight loss. There are nutrition people who can help you with that. You can also find helpful diet info on this site. Your pulmonologist and your ID doctor should be working together for your benefit. irene5

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What is the side effect of Arikayce? I can't take anymore diahrrea I'm 75 yrs old.

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2 replies
irene5 Irene Estes | @irene5 | Jul 17, 2020
In reply to @nina1944 "What is the side effect of Arikayce? I can't take anymore diahrrea I'm 75 yrs old." + (show)
@nina1944

What is the side effect of Arikayce? I can't take anymore diahrrea I'm 75 yrs old.

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@nina1944 Side effects vary, but I would say the most prevalent and for the most people seem to be scratchy voice and/or loss of voice which come back after stopping it. There are many side effects, but not everyone experiences them. Additionally, practicing “mindfulness as medicine” can help as well. One of the reasons Arikayce is recommended is because of patients who have difficulty with the Big 3 and/or do not achieve negative MAC sputum results. You know your body best. With that said, MAC is progressive for most people. There comes a time when we have to weigh the pros and cons of treatment options. In the research statistics, Arikayce appears to have good outcomes. irene5

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boomerexpert | @boomerexpert | Jul 17, 2020

I agree with @nina1944 - antibiotics are for an infection...bronchiectasis in itself is not an infection. I find an inhaler helps when I get flares from it...otherwise, eat healthy, get exercise (icluding breathing exercises) and of course, stay Covid free.

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nina1944 | @nina1944 | Jul 17, 2020

I do have infection but meds caused cdiff and I had to stop. Afraid to try anything else. On nebulizer and vest.

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heathert | @heathert | Jul 17, 2020
In reply to @nina1944 "What is the side effect of Arikayce? I can't take anymore diahrrea I'm 75 yrs old." + (show)
@nina1944

What is the side effect of Arikayce? I can't take anymore diahrrea I'm 75 yrs old.

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@nina1944 Hi My side effects from Arikayce were minimal also, just a hoarse voice which improved over time and with strepfen, and a bit of a cough when I stat inhaling, just have a glass of water near by. It is great stuff!

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1 reply
nina1944 | @nina1944 | Jul 17, 2020
In reply to @heathert "@nina1944 Hi My side effects from Arikayce were minimal also, just a hoarse voice which improved..." + (show)
@heathert

@nina1944 Hi My side effects from Arikayce were minimal also, just a hoarse voice which improved over time and with strepfen, and a bit of a cough when I stat inhaling, just have a glass of water near by. It is great stuff!

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How long did you take it

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1 reply
heathert | @heathert | Jul 17, 2020
In reply to @nina1944 "How long did you take it" + (show)
@nina1944

How long did you take it

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@nina1994 I took it for a year.
All the best Heather

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 19, 2020
In reply to @thumperguy "Gotta laugh. Taking a hint from Daniel Pecaut I recently tried to meditate while the vest..." + (show)
@thumperguy

Gotta laugh. Taking a hint from Daniel Pecaut I recently tried to meditate while the vest was giving me a thumping. Decided to concentrate on Pranayama breathing but my venture promptly tanked in the face of a swarm of thoughts about how to present my experience on this discussion board. As a meditator I’m not yet ready for prime time. 😂

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Thumperguy, You are a funny guy!

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 19, 2020
In reply to @gaylewroc "@windwalker Terri, I found a book on Amazon called "Beating Bronchiectasis", by Daniel Pecaut. He went..." + (show)
@gaylewroc

@windwalker Terri, I found a book on Amazon called "Beating Bronchiectasis", by Daniel Pecaut. He went all out changing diet, exercising and one interesting treatment..nebulizing L-Glutathione which is an anti-oxidant. He was treated at Mayo in Minnesota and his doctors knew he was nebulizing and didn't tell him not to, so I have been doing also. I admit I probably would be better if I was nebulizing twice a day but truth is I hate if....and put it off, and sometimes it's days before I do it. It just hurts, and I feel like I'm going to pass out no matter what is in the nebulizer!!! But that is a good treatment for people to try for sure!! And get the book on Amazon..it's cheap!!

Currently with my infection I have been without antibiotics until 2 days ago, so I have been nebulizing Colloidal Silver. I was careful to get a brand recommended by a local Herbalist. I think it has been helping, but I need to use it more. I have read that people use the silver along with their regular medical treatment and they don't have adverse reaction. But research....MAC and Colloidal Silver. You won't turn blue!!! Silver Shield by Nature's Sunshine (broad spectrum immune support).

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@gaylewroc, Hi Gayle! I hope you are doing well and staying safe from covid. I was just reading over this older post of yours, and was wondering how you are currently doing? Did the more natural route of treatment work for you?

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