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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dixer | @dixer | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

I was on IV amikacen for about 2 months then inhalation amikacen. I eventually had to have two lobes removed( lobectomy) which took all the bronchiectasis.
To date my cultures are clear except now I have been diagnosed with a rare lung fungus!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

Thanks for joining in the discussion Dixer. What is the rare lung fungus you've been diagnosed with?

REPLY
Lisa Y | @tutti | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

Did you have bad side effects from the amikacen? Did the antiboitics clear the mycobacterium abscessus? I'm planning on working while I have the IV. Sorry to hear you have a rare fungus, as if the other wasn't bad enough.

REPLY
dixer | @dixer | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

No but you need to get your hearing checked periodolicy

REPLY
dixer | @dixer | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

it is Ochroconis (Dactylaria) gallopava

REPLY
1 reply
dixer | @dixer | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

no none at all but you need to get your hearing checked. I really think the amikacen helped.

REPLY
Lisa Y | @tutti | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

I had a hearing test to get a base line.

REPLY
Lisa Y | @tutti | Jul 13, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

Thanks for the info!

REPLY
Katherine, Alumni Mentor | @katemn | Jul 27, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

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

REPLY
1 reply
Kay Strand | @kaystrand | Jul 27, 2016
In reply to @tutti "I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l..." + (show)
@tutti

I was diagnosed 8 months ago with bronchiectasis /mycobacterium abscessus. I have no symptoms so l have been on a watch, being checked every 3 months. And ct scan every 6 months. My ct scan I had last week showed significant changes. My doctors are recommending I start antibiotic treatment but are waiting for a sputum test results to come back. I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.
Have any of you had bronchiectasis mycobacterium abscessus and successfully been treated with antibiotics. If so what antibiotics worked for you.I hope to hear from someone as I've been told this mycobacterium is rare and difficult to treat.

Jump to this post

Hi Katherine
I'm also at Mayo at Rochester. I live in Minneapolis.

I see Megan Dulohery who is a MAC doc who works with Aksimet. I was finally diagnosed after a scope and lavage which showed MAC. Had pneumonia in Dec 2016 and my CT had a persistent cavity in my upper right lung.
Plan is I start the 3 drugs frequently given and CT scan and sputum in October. I should have the meds to start next week. I'm concerned about my kidneys as I take 4 blood pressure meds, but have no choice but to do what Mayo says.

Where in your lungs is your Mac? Any discussion of surgery? It seems that really ends it for those who have removal. I may be a candidate. It moves slow? I hear cavities are more aggressive, I have one in upper right as I said. Worrisome.

I'm trying to be positive but I have my moments. Lots to track with eye and hearing exams and frequent blood work. I'm overwhelmed but trying to get organized with when I have to do what.

It sounds like you are doing pretty well with this crazy disease and that gives me hope.

Any suggestions on things to do to tolerate drugs? Are you in the Minneapolis support group? I think meeting with others might help me. I feel isolated with thus weird disease and seeing others would help.

Thanks for your good posts. I'm giving it my all. Feed back appreciated!!

Peace

Kay

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