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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@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.

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it is Ochroconis (Dactylaria) gallopava

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@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.

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

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@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.

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I had a hearing test to get a base line.

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@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.

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Thanks for the info!

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@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.

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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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@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.

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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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@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.

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Welcome Kay, so glad you found our Forum! In terms of my own lungs .. since I was diagnosed in 2007 .. my reports say “mild scarring both lungs” which show up any time I have an Xray or Ct scan. Absolutely NO has there every been any mention of surgery! You are in good hands at Mayo Clinic! Just do as you are instructed .. just as I did .. and you will come out just fine!

Kay, this is just me .. but my advise to you is read through ALL the past posts/pages. From these you will receive a LOT of good information and help. We are all individual in terms of what may work for us .. you will find REALLY good ideas on taking the meds. For sure watch for info on probiotics .. they are important .. lots of good info here on that. Good info on when and how to best try things and getting organized.

PLEASE do keep coming back to this Forum .. you will NOT feel isolated if you do so because we are ALL on this journey together .. and we share it together! For me PERSONALLY .. and it is only ME .. I found the local “support” group not a positive experience. For me .. MAI/MAC is only a piece of who I am .. it does NOT define who I am .. and in that particular group I felt it had become their identity. MAC/MAI is NOT my identity. Sorry but that was just my perception.

But Kay, I promise you .. if you keep coming back to OUR Forum .. you will be a part of all our journeys .. and you will NOT feel isolated! Sending you a Big Hug! Katherine

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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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Hello fransky, Welcome! First off .. WHY are you being told: “but I have to wait several months to see a specialist as my referral to the specialist has been marked “routine” “. Question: Is this an insurance issue .. your doctor’s decision??

I can ONLY speak for myself .. BUT as far as I am concerned “the squeaky wheel get the oil”!! If it is an insurance issue .. you DEMAND TO be referred/ GET TO an Insurance Supervisor and DON’T give up until you have been expedited to a quick appointment to an “Infection Disease Doctor”. Do whatever you have to do .. make as many phone calls as necessary to however many people you need to call. After you read the pages of this Forum you will know what to do/say/fight for!

Only AN “Infection Disease Doctor” who is familiar with MAC will be able to determine IF you have MAC or not. The reason I am advising you to PUSH HARD to get into a knowledgeable specialist is IF you DO have MAC colonies at this time .. yes they COULD multiply as time goes by without the necessary antibiotic treatment. This is at least my understanding. Myself .. I delayed antibiotic treatment and ended up with a second mycobacterium. Would it take months .. that I’m not sure of .. but for me .. I would err on the side of caution. You are given just one body in this lifetime .. take good care of it!

NOW .. that done .. do NOT put the horse before the cart (if you read past posts .. AND I encourage you to educate yourself by doing so .. you will see horse/cart is a favorite phrase of mine!) .. meaning .. do NOT assume you have MAC BEFORE you have even been diagnosed! AND then IF you are diagnosed with MAC .. nope it is NOT a life sentence! After you have read through all the pages of the posts you will be delighted to see that there are LOTS of us still kicking on our Forum .. ALL at various points of our journey with our MAC! Not only are we still “kicking” .. but many of us are actually having fun and enjoying life! How ’bout that! I know this is a tough time .. even kinda scary .. but know that you have found a place where we have all been on this same journey. Keep coming back .. there are really nice supportive people who are here to help you along every step of the way! Sending you a Hug! Katherine

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Thanks for your quick response, Katherine, and for your encouragement. I live in Canada which is why the long wait to see a specialist. My GP referred me to a respiratory specialist, but from what you are saying, I should see an infectious disease specialist as well. I will try to press this with my GP as well as other people in the system, as you suggest. I am scared. very scared. thank you for the hug. I really needed it. 🙁

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Hello fransky .. welcome back! I know ZERO about the Canadian system .. BUT I am a great “googler” .. so here is what I would do if I was you:
1. read through ALL the pages of this Forum .. you will be amazed at the knowledge you will pick up .. make notes about what you think may be relevant. Personally I cut and paste into my “Word” computer program . then print it out as a reference when you meet with your doctor.

2. I googled “TIPS ON GETTING A REFERRAL TO A SPECIALIST QUICKER IN THE CANADIAN SYSTEM” .. I didn’t read through any of it .. but was AMAZED at all the threads that came up!! WOW! Not surprised! Anytime you have a “system” .. people have figured out how to work it! SO .. YOU be smart and work the system .. just figure out how!

3. MOST importantly .. even IF you DO get a MAC diagnosis .. yes it IS pain in the batooty!! BUT it sure could be a WHOLE LOT worse!! Come on .. count your blessings .. it is NOT incurable cancer .. it is NOT SO many really horrible things .. PLUS you found this Forum of people who will walk you through it. Personally .. I was diagnosed in 2007 .. and have been stable since May 2014 .. AND am leaving on a WONDERFUL trip 8/31 to have a WHOLE LOT of fun in life! There IS life after the diagnosis. AND THAT IS IF you get the diagnosis .. as I said .. don’t put the horse before the cart .. count the blessings you have in your life right this minute .. be kind to yourself in this period of time .. and know that we are all here for you! Sending you yet another hug! Katherine

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@katemn

Hello fransky .. welcome back! I know ZERO about the Canadian system .. BUT I am a great “googler” .. so here is what I would do if I was you:
1. read through ALL the pages of this Forum .. you will be amazed at the knowledge you will pick up .. make notes about what you think may be relevant. Personally I cut and paste into my “Word” computer program . then print it out as a reference when you meet with your doctor.

2. I googled “TIPS ON GETTING A REFERRAL TO A SPECIALIST QUICKER IN THE CANADIAN SYSTEM” .. I didn’t read through any of it .. but was AMAZED at all the threads that came up!! WOW! Not surprised! Anytime you have a “system” .. people have figured out how to work it! SO .. YOU be smart and work the system .. just figure out how!

3. MOST importantly .. even IF you DO get a MAC diagnosis .. yes it IS pain in the batooty!! BUT it sure could be a WHOLE LOT worse!! Come on .. count your blessings .. it is NOT incurable cancer .. it is NOT SO many really horrible things .. PLUS you found this Forum of people who will walk you through it. Personally .. I was diagnosed in 2007 .. and have been stable since May 2014 .. AND am leaving on a WONDERFUL trip 8/31 to have a WHOLE LOT of fun in life! There IS life after the diagnosis. AND THAT IS IF you get the diagnosis .. as I said .. don’t put the horse before the cart .. count the blessings you have in your life right this minute .. be kind to yourself in this period of time .. and know that we are all here for you! Sending you yet another hug! Katherine

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Thanks, again, Katherine. You are a very positive person! I hope you have a wonderful trip. Where are you going?

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