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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 6, 2018
In reply to @spencersok "My wife was on the Triple Treatment and had to discontinue it. Since she is Immune..." + (show)
@spencersok

My wife was on the Triple Treatment and had to discontinue it. Since she is Immune Suppressed, she was bed-ridden for the total six months. The treat helped her for awhile after she discontinued it, but the cough has come back, worse than before. I have been searching for an "alternative treatment, I am not medical savvy, but I do lots of internet research, that's how I found this group. My question, Has anyone out there been treated with AMIKACIN?

Jump to this post

@spencersok here is a post to help with your question about amakacin. Posted by heathert @heathert, Fri, Nov 9, 2018 8:18pm
@jasmine321 Yes I was in the trial for Amakacin inhaled and I think it is called Arikayce. I think it did a good job while I was on it, I had a clear sputums finally.So glad it is approved. It was easy to take.

REPLY
1 reply
america | @america | Dec 6, 2018
In reply to @anniepie "@america Hi america, me too - I have Sjogrens too -- dryness mainly affecting my mouth..." + (show)
@anniepie

@america Hi america, me too - I have Sjogrens too -- dryness mainly affecting my mouth and less my eyes. I've heard it can be one thing predisposing us to NTMs because it causes immune dysregulation, meaning not just an overactive immune system but can go low as well. I wish you good luck and hope you feel better soon

Jump to this post

Hi annipie, I am so sorry to hear you hear you have Sjogrens. It’s so difficult to eat and swallow and the dryness all over my body is insane. The most difficult thing for me is eating without saliva. And with NTM it’s become a daily struggle. I was sick for the last six weeks coughing and sore throat... it was so hard to even drink water. But today I feel a bit normal and like my self again and for that I am overjoyed. I still have a little soreness in my throat but I’m not going to complain. I wish all the best. Please keep in touch Rita.

REPLY
1 reply
Jane S. Brown | @macjane | Dec 6, 2018
In reply to @windwalker "@colleenyoung I am still 'old school'. I also keep a three ring binder to help me..." + (show)
@windwalker

@colleenyoung I am still 'old school'. I also keep a three ring binder to help me keep track of what is going on with everyone. I now have about 150 or more members that I have interacted with. The binder helps me not to repeat a question like "what meds are you on?" when I haven't texted with that person in awhile.

Jump to this post

Great idea.

REPLY
Jane S. Brown | @macjane | Dec 6, 2018
In reply to @colleenyoung "Such an important consideration, @margiebanks. Yes, we are currently embarking on a mobile first redesign and..." + (show)
@colleenyoung

Such an important consideration, @margiebanks. Yes, we are currently embarking on a mobile first redesign and are looking for volunteers to provide feedback.
Anyone interested in taking part in a 50-minute telephone interview next week, please send me a private message (PM). I'm PMing a few of you. We are looking for participation from long-time members to new members and lapsed members.

Jump to this post

Yes. My name is Jane Brown and will be going to Rochester in January.

REPLY
1 reply
Jane S. Brown | @macjane | Dec 6, 2018
In reply to @macjane "Yes. My name is Jane Brown and will be going to Rochester in January." + (show)
@macjane

Yes. My name is Jane Brown and will be going to Rochester in January.

Jump to this post

Do you need phone number? Jane

REPLY
anniepie | @anniepie | Dec 7, 2018
In reply to @america "Hi annipie, I am so sorry to hear you hear you have Sjogrens. It’s so difficult..." + (show)
@america

Hi annipie, I am so sorry to hear you hear you have Sjogrens. It’s so difficult to eat and swallow and the dryness all over my body is insane. The most difficult thing for me is eating without saliva. And with NTM it’s become a daily struggle. I was sick for the last six weeks coughing and sore throat... it was so hard to even drink water. But today I feel a bit normal and like my self again and for that I am overjoyed. I still have a little soreness in my throat but I’m not going to complain. I wish all the best. Please keep in touch Rita.

Jump to this post

@america Glad you're feeling better now Rita. Was the coughing and sore throat a flare up of the NTM? I get a very sore throat when I have had the NTM exacerbations. What meds are you taking for MAC?
Yes Sjogrens is a hassle. Do you use the mouth gel -- In Australia it's called Oral Care or Oral Balance gel. I do on and off. But yes its very hard when you're sick with a bad sore throat.
But you're not alone. Hugs, Annie

REPLY
1 reply
anniepie | @anniepie | Dec 7, 2018
In reply to @heathert "welcome, I know the feeliing, this is a wonderful group." + (show)
@heathert

welcome, I know the feeliing, this is a wonderful group.

Jump to this post

@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie

REPLY
5 replies
Helen | @helem | Dec 7, 2018
In reply to @anniepie "@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in..." + (show)
@anniepie

@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie

Jump to this post

I have tinnitus since I have been on the drugs since July. Have you had your hearing checked? I didn’t know to get a baseline and when I went after three months I had a little hearing loss in the upper range. Since I hadn’t had a baseline I don’t know if the drugs caused the loss. I’m going to go in soon for another hearing test. To tell you the truth, I’ve just gotten used to the tinnitus.

REPLY
1 reply
Margie E | @margiebanks | Dec 7, 2018
In reply to @windwalker "@margiebanks There is no magnifying glass icon on the mobile phone version, only a box at..." + (show)
@windwalker

@margiebanks There is no magnifying glass icon on the mobile phone version, only a box at the top of this feed that says 'Search'. It is the same function though.

Jump to this post

@windwalker hey Terri, I've tried the "Search" in the box at the top of the feed months ago (and again every time this query pops up). I do have a smart phone, perhaps this user is not up to speed with the capabilities of her phone! haha Thanks tho! I'm sure more will be revealed! Margie

REPLY
america | @america | Dec 7, 2018
In reply to @anniepie "@america Glad you're feeling better now Rita. Was the coughing and sore throat a flare up..." + (show)
@anniepie

@america Glad you're feeling better now Rita. Was the coughing and sore throat a flare up of the NTM? I get a very sore throat when I have had the NTM exacerbations. What meds are you taking for MAC?
Yes Sjogrens is a hassle. Do you use the mouth gel -- In Australia it's called Oral Care or Oral Balance gel. I do on and off. But yes its very hard when you're sick with a bad sore throat.
But you're not alone. Hugs, Annie

Jump to this post

Hi anniepie, I took the big 3 about 3 years ago. And I was doing good with no meds after that for about 2 years. This year was not good to me I got sick a lot and I found this group that actually saved me. Windwalker is amazing! She told me about Mayo Clinic and I am being treated there. I was on Tobramycin for almost 2 months and I started with the sore throat and I had to stop. So I’m not on any meds now. But I will be starting something different soon. I may be staying azithromycin not quite sure until I speak with my doctor. And yes I did use it and got ringing in my ears not constantly it would come and go. I wish I could help. Hugs!!! Hang it there it’s a long journey but we are doing it. Rita

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