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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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

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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1 reply
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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