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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janovr | @janovr | Oct 27, 2019
In reply to @beatitnow "Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I..." + (show)
@beatitnow

Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!

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@beatit

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janovr | @janovr | Oct 27, 2019

Hi ... I was dx in 2015. I was on the meds 3 months and lost 40 lbs. due to ghastly side effects. Changed doctors. Never gone on them again. I had clear sputum culture in April, 2019. Took me 4 years to gain 20 lbs back. I am careful about hand washing, crowds, common sense, and so far so good. I have more issues with bronchiactisis but try too walk daily and stay hydrated. God bless! Jan/Fl.

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bomar | @bomar | Nov 26, 2019
In reply to @katemn "Hello Tutti, if you read though our other forum you will see that I was so..." + (show)
@katemn

Hello Tutti, if you read though our other forum you will see that I was so fearful of the antibiotic treatment that to my regret I did not agree to treatment until I was diagnosed with the second mycobacterium: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES.

This of course required my body to fight off not one but two mycobacteriums now but of course that is exactly why I began writing on the forum .. to let others know NOT to be as fearful as I was .. that it is NOT so bad .. that you will NOT get all the side effects that you hear about! Each persons body is different!

I did the inhaled Amikacin for thirty months for 5x a week and then later for 3x a week as I got better (and whined a LOT to Dr. Aksamit!!) There are a few little tricks to the trade to the inhaled Amikacin so if you are going to be put on it let me know and I will tell you how I did it to try to make it as efficient and least hassle as possible.

I am SOOO glad your Doctor is working with Mayo .. gives me peace of mind. Absolutely two heads are better than one. Now EACH PERSON is different so DO NOT think this is what YOU should do .. but it is what Dr. Aksamit prescribed for my particular situation and MY two mycobacterium:
** 1. Azithromycin 250mg 2. Avelox 400mg 3. 2-Rifampin 300mg 4. Amikacin 2ml - inhaled 5x a week and later 3x a week 5. Ethambutol 800mg

Prior to the start of the antibiotic start I had a "baseline" hearing test and vision test for which I requested a copy so that if I traveled I would have a copy on hand for comparison.

During treatment:
Monthly I did: blood tests
Quarterly I did: vision tests and hearing tests

Tutti, if you have an option .. opt for inhaled Amikacin .. I KNOW I am biased .. but I feel Dr. Aksamit is the Guru of this disease .. and HE said to inhale the Amikacin directly into my LUNGS .. NOT an IV into my whole body!! The abscesses was in my LUNGS .. and that is where the inhaled Amikacin is DIRECTED!! Now I am NOT a doctor .. but I just googled it .. and here is what I found: Conclusion Aerosolized delivery of amikacin is a promising adjunct to standard therapy for pulmonary nontuberculous mycobacterial infections.

AND THAT is directly from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1808062/

As you all know .. I am big on educating yourselves. Do your own due diligence and make up your own mind on this but I'd go for inhaled Amikacin even though it may be a bit more trouble. Personally I did not have any side effects from the Amikacin .. I would just watch TV as I carefully .. fully inhaled.

Any other questions .. just let me know and I will try to answer .. I am back home now until the end of August. Hugs to you! Katherine

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My name is Bomar an I've been following these posts an I have Bronchiectasis but know nothing about watching your eye site an getting hearing tests. How does bronc. Affect eyes sn ears

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1 reply
bomar | @bomar | Nov 26, 2019
In reply to @fransky "I was recently diagnosed with bronchiectasis as well and I was quite shocked. I have it..." + (show)
@fransky

I was recently diagnosed with bronchiectasis as well and I was quite shocked. I have it in several areas of my lungs, but I have had virtually no symptoms until recently - I had slight shortness of breath and oddly enough, since the diagnosis, I feel more tight in my chest. I haven't had many chest infections throughout my life. I thought that perhaps I was misdiagnosed, but I guess CTs don't lie? I also have a "possible" mycobacterial infection or colonization but I have to wait several months to see a specialist as my referral to the specialist has been marked "routine". This doesn't seem like routine to me. I am concerned that the mycobacterial infection could be further damaging my lungs. Does anyone know if this is possible? I am concerned about the wait to see a specialist. Please help! I feel like this is a life sentence!

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Go see a Pulmonologist.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 27, 2019
In reply to @bomar "My name is Bomar an I've been following these posts an I have Bronchiectasis but know..." + (show)
@bomar

My name is Bomar an I've been following these posts an I have Bronchiectasis but know nothing about watching your eye site an getting hearing tests. How does bronc. Affect eyes sn ears

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@bomar Hi there. I see that you have just recently joined our group. Welcome. To answer your question about hearing and vision issues; it is the medications to treat mac that can give you those side effects, not the bronchiectasis itself. If you are ever put on the 'Big 3' as we like to call them; then you must have baseline tests done for hearing and vision. Sometimes one of the meds can cause hearing loss or tinnitus (ringing in the ears) another may cause temporary or permanent vision issues. Has your dr discussed putting you on a three antibiotic treatment plan? Most drs like to prescribe that, but there are other alterrnate ways to treat mac. It would depend on the specie of mac you have and the extent of your infection and susceptibility tests. Please scroll down our topic list on the Discussion Board on this group's main page. There you will find LOTS of info from our past posts.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 29, 2019
In reply to @beatitnow "Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I..." + (show)
@beatitnow

Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!

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@beatitnow Hello. Did you go off of all meds?

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thumperguy | @thumperguy | Dec 9, 2019
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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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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1 reply
nina1944 | @nina1944 | Jul 16, 2020

I have bronchiectasis and was on antibiotic treatment but got c diff and can no long use antibiotics is there something else Im 75

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lindam272 | @lindam272 | Jul 16, 2020

@nina1944 - You wouldn't necessarily need an antibiotic for bronchiectasis so you must have had an infection, I'm assuming to be on one. I too have horrible gut reactions to long term antibiotics. There are enzymes and probiotics you can buy to help with that. What is your doctor telling you? Linda Martin

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nina1944 | @nina1944 | Jul 16, 2020

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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