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.

Jo Ann K | @jkiemen | Apr 19, 2019
In reply to @tdrell "@Jo ann k good luck with biopsy.....and so far no bronchiectasis shows on my CAT scans,.....other..." + (show)
@tdrell

@jo ann k good luck with biopsy.....and so far no bronchiectasis shows on my CAT scans,.....other stuff which is why l have follow up CAT scans based on Fleischner Society guidelines used by radiologists which really is for checking for Cancer ....over a ten year period no changes in the stuff (nodes and nodules )present....there is inflammation which they feel is from the reflux...l guess because l have never smoked there has been no mention of biopsies and the fact that there has been no enlargements in recent years ....l went to a Dr Claudia Altmann an ID doctor at Grafton Auorora once but went for second opinion at NJH and did not go back to her....again good luck with biopsy
tdrell aka terri

Jump to this post

@tdrell Thank-you so much. I am fighting the nodules thing. My MD told me "that's what your type does, it makes nodules". I just want to make sure it is not anything else first then see if the treatment needs to change. I should look into National Jewish at least for a consult and to be established since I expect this will be a lifelong situation I still am struggling to manage in my mind.

REPLY
1 reply
mariierod123 | @mariierod123 | Apr 19, 2019
In reply to @jkiemen "@tdrell Thank-you so much. I am fighting the nodules thing. My MD told me "that's what..." + (show)
@jkiemen

@tdrell Thank-you so much. I am fighting the nodules thing. My MD told me "that's what your type does, it makes nodules". I just want to make sure it is not anything else first then see if the treatment needs to change. I should look into National Jewish at least for a consult and to be established since I expect this will be a lifelong situation I still am struggling to manage in my mind.

Jump to this post

Thats shat i have nodules are they checking it for cancer?

REPLY
1 reply
tdrell | @tdrell | Apr 19, 2019
In reply to @jkiemen "@tdrell It sounds like National Jewish was the way to go." + (show)
@jkiemen

@tdrell It sounds like National Jewish was the way to go.

Jump to this post

@jo Ann K....yes for me NJH was the way to go....l brought a lot of my previous tests which they accepted without repeats.....they examined my whole self.....wholistic....found out that after 30 years...l do not have asthma....other stuff but not asthma...my medicare and supplement covered everything and continues to ….no bills....it is medicine done as it was years ago....and with the specialization in NTM/ mycobacterium section. Had my insurance said NO....l have found one should fight /protest and try to get them to change....it is worth it...they count on people not protesting....see "Sicko" by Michael Moore.....tdrell aka terri

REPLY
Jo Ann K | @jkiemen | Apr 19, 2019
In reply to @mariierod123 "Thats shat i have nodules are they checking it for cancer?" + (show)
@mariierod123

Thats shat i have nodules are they checking it for cancer?

Jump to this post

@mariierod123 They will check that too when they do the biopsy. Of course that adds to the stress.

REPLY
1 reply
mariierod123 | @mariierod123 | Apr 19, 2019
In reply to @jkiemen "@mariierod123 They will check that too when they do the biopsy. Of course that adds to..." + (show)
@jkiemen

@mariierod123 They will check that too when they do the biopsy. Of course that adds to the stress.

Jump to this post

Yes i dont want to do the biopsy im scared

REPLY
1 reply
mariierod123 | @mariierod123 | Apr 19, 2019
In reply to @mariierod123 "Yes i dont want to do the biopsy im scared" + (show)
@mariierod123

Yes i dont want to do the biopsy im scared

Jump to this post

When they scaped and brushed the area its shows no cancer

REPLY
Jo Ann K | @jkiemen | Apr 19, 2019

@mariierod123 This will be my second Biopsy. The first was in October of 2015. I don't want to do it either. But I think I need to know exactly what is going on with that area. They are sending the sample for culture to Jewish National.

REPLY
1 reply
mariierod123 | @mariierod123 | Apr 19, 2019
In reply to @jkiemen "@mariierod123 This will be my second Biopsy. The first was in October of 2015. I don't..." + (show)
@jkiemen

@mariierod123 This will be my second Biopsy. The first was in October of 2015. I don't want to do it either. But I think I need to know exactly what is going on with that area. They are sending the sample for culture to Jewish National.

Jump to this post

What did it show in oct and did it hurt to do it?

REPLY
Jo Ann K | @jkiemen | Apr 19, 2019

@mariierod123 The biopsy grew MAI and there was granuloma which is kind of like tissue that is engulfing the bacteria and kind of scarring. They use IV sedation to do it. It was a little sore afterwards.

REPLY
angiejohnson | @angiejohnson | Apr 19, 2019
In reply to @tdrell "@angiejohnson ...was your lobe removed via closed surgery or did you have the traditional open lobectomy???hope..." + (show)
@tdrell

@angiejohnson ...was your lobe removed via closed surgery or did you have the traditional open lobectomy???hope it heals well and helps the MAC situation....will they do cultures afterwards for follow up.?
And the Aurora ID doctor l went to in Grafton Wi was the one who automatically would have put me on the big three after one positive culture and no evidence on CAT scan....no would not go back to her ….also was sent in the Froedert system in West Bend a few years later (after I switched from Aurora Pulmonologist to Froedert one in West Bend) to a ID doctor ,.....a Dr Castro or something simililar….again he was nice and l think conscientious but not l sensed too aware of NTM protocol....wanted to treat me after one positive culture...and no CAT scan evidence....NJH for annual appt there again said "NO signs of infection" Tdrell aka Terri

Jump to this post

@tdrell I had a robotic lobectomy. It’s healing nicely! I’m 10-11 days out and have been doing some laundry, taking short walks, moving about just fine. I have some minor pain still, but just taking Tylenol and muscle relaxer. My Pulmonologist said 2-3 months on medication. I don’t know if they will do cultures to determine when to stop. I may look into NJH for follow up.

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