1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

dkuhni | @dkuhni | Jun 14, 2017

I am in my fourth month of medications for MAC (Rifabutin 150MG, once daily; Ethambutol HCL 400MG, twice daily; Clarithromycin 500mg, twice daily). I have been able to function, but for the last month I have been experiencing pain in my joints, muscles, and generally throughout my body. Has anyone else experienced these side effects? What did you do? Thank you.

REPLY
2 replies
chinasmom | @chinasmom | Jun 14, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

@windwalker and others who have been on tobramycin. Is that the Toby podhaler? If so my insuance will not cover it because I don't have CF. They claim it is not approved for non CF bronchiectasis. I went through an appeal last year and lost. Now im in the middle of appealing my pain medicine. Ive been on it for 6 years and next month they will stop paying for it. Thanks for all the good information.
Becky

REPLY
Katherine, Alumni Mentor | @katemn | Jun 14, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

@chinasmom, Becky, I have Blue Cross Senior Gold insurance and they are covering the inhaled Tobramycin 100% for Pseudomonas .. I would fight them! Insurance companies deny until you fight .. usually until the 3rd or 4th round! Don't give up! Hugs! Katherine

REPLY
chinasmom | @chinasmom | Jun 14, 2017
In reply to @dkuhni "I am in my fourth month of medications for MAC (Rifabutin 150MG, once daily; Ethambutol HCL..." + (show)
@dkuhni

I am in my fourth month of medications for MAC (Rifabutin 150MG, once daily; Ethambutol HCL 400MG, twice daily; Clarithromycin 500mg, twice daily). I have been able to function, but for the last month I have been experiencing pain in my joints, muscles, and generally throughout my body. Has anyone else experienced these side effects? What did you do? Thank you.

Jump to this post

@dkuhni, Hi and weclome to this forum of great poeple. You will find knowledeg and support here. So feel free to ask lots of questions and share your experiences. I am wondering if you have been tested for rheumatoid arthritis. It seems there may be a connection with these 2 diseases alots of us have both. I use Tylenol, advil, or aleve for body aches. I get bad head aches and will use excedrine migraine first then go to prescription. But I should say that you should check with your doctor or pharmacist before adding anything. Over the counter meds can have the same ingredients and be called something diffferent. So better safe and ask your pharmacists. They are happy to help! Take care for now!
Becky

REPLY
Katherine, Alumni Mentor | @katemn | Jun 14, 2017

@dkuhni, I have not made a note of your first name .. what is it? More personal! @dkuhni, it MAY have nothing to do with your meds .. but I would place a call to your Infectious Disease doctors office .. report these symptoms AND ask what they think .. AND what you should do about it. We here on our Connect do not want to play "doctor" .. I would be concerned for you .. make that call! Hugs to you! Katherine

REPLY
1 reply
Katherine, Alumni Mentor | @katemn | Jun 14, 2017

@macjane, Jane, we have not heard from you in a while .. wondering how you are doing? Could you check in and let us know? We are here for you .. we've all been where you are! Hugs to you! Katherine

REPLY
jentaylor | @jentaylor | Jun 14, 2017
In reply to @tay4rake "Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they..." + (show)
@tay4rake

Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they gave me a 14 day Rx of ciprpfloxin. I I started feeling better in a few days, but within 2 weeks of finishing the Rx the symptoms started coming back. Amakasin is very expensive. I had very good insurance at the time, but I still had over a $1000 co-pay. I had to inhale it via my nebulizer 2x a day, for 30 days. IT WORKED and worth every dollar. Pseudomonas is commonly diagnosed with people with bronchestisis and difficult to eradicate. Good luck. Best, Elaine

Jump to this post

Hi @heathert,

Yes, the treatment was successful! After 14 days, I still was symptomatic so we decide to go for another week, ending up with a full 21 days. Apparently, IV Cefipime is a "big gun" way to kick pseudomonas's butt! I was very sick when I had it & I waited WAY to long to seek treatment because I have chronic illness with my lungs, so I just thought it was a regular infection that I'd have to just "tough it out"... BUT the difference from my usual infections was the incredible, excessive, THICK, navy GREEN, FOUL tasting/smelling MOCOUS, that increased WHEN I LAID DOWN. The mucous would actually start chocking me when I'd lay down! I felt like I was drowning (and I'm a person whose used to having a lot of excessive, thick mucous all the time!)! So by the time I went to the doctor, waited for the sputum culture report, I was very, very sick...that plus being already immune compromised is the reason, I believe, that they skippped the oral Cipro route. I'm so grateful that the treatment worked!!! I did home IV infusions via a PICC line. Easy as pie to do! ~Jen

REPLY
dkuhni | @dkuhni | Jun 14, 2017
In reply to @katemn "@dkuhni, I have not made a note of your first name .. what is it? More..." + (show)
@katemn

@dkuhni, I have not made a note of your first name .. what is it? More personal! @dkuhni, it MAY have nothing to do with your meds .. but I would place a call to your Infectious Disease doctors office .. report these symptoms AND ask what they think .. AND what you should do about it. We here on our Connect do not want to play "doctor" .. I would be concerned for you .. make that call! Hugs to you! Katherine

Jump to this post

Hi. My name is Dee Kuhni. Thank you for your advice.

REPLY
dkuhni | @dkuhni | Jun 14, 2017
In reply to @dkuhni "I am in my fourth month of medications for MAC (Rifabutin 150MG, once daily; Ethambutol HCL..." + (show)
@dkuhni

I am in my fourth month of medications for MAC (Rifabutin 150MG, once daily; Ethambutol HCL 400MG, twice daily; Clarithromycin 500mg, twice daily). I have been able to function, but for the last month I have been experiencing pain in my joints, muscles, and generally throughout my body. Has anyone else experienced these side effects? What did you do? Thank you.

Jump to this post

Hi! Thanks for your experience and advice. I will follow up with my doctor. Dee Kuhni

REPLY
heathert | @heathert | Jun 14, 2017
In reply to @tay4rake "Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they..." + (show)
@tay4rake

Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they gave me a 14 day Rx of ciprpfloxin. I I started feeling better in a few days, but within 2 weeks of finishing the Rx the symptoms started coming back. Amakasin is very expensive. I had very good insurance at the time, but I still had over a $1000 co-pay. I had to inhale it via my nebulizer 2x a day, for 30 days. IT WORKED and worth every dollar. Pseudomonas is commonly diagnosed with people with bronchestisis and difficult to eradicate. Good luck. Best, Elaine

Jump to this post

Hi @jentaylor, it sounds really nasty but thank goodness they can get rid of it for you. Hope all is going well for you today, anxiety is a nasty bug also, we all need to kick it to the curb!!!!!!! Take care

REPLY
View MoreView Less
Please sign in or register to post a reply.