(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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!

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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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@margiebanks

@colleenyoung Thanks for this info again. I'm wondering if the site will be working towards becoming more user friendly for those of us using mobile devices only. I have never found the "magnifying glass" to do a search (which you said may not work on mobile devices)

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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.

@debymacc

I have not been tested since 2009 …and no symptoms have reoccurred.

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Hi Deby,
How great you recovered. I needed to hear.. Im on a second round of antibiotics after a year of gbeing off them. Only this time the dosage is daily at 1650mg daily. I feel so weak! Did you feel weakened at all. I think the ethambutol makes me a bit less coordinated physically and decreases concentration. Im working part time and keeping that way for a while. Are you willing to talk by phone? I dont want to be in anyway intrusive. Only Its so good to hear positive news! Thanks, Debminuet

@margiebanks

@colleenyoung Thanks for this info again. I'm wondering if the site will be working towards becoming more user friendly for those of us using mobile devices only. I have never found the "magnifying glass" to do a search (which you said may not work on mobile devices)

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@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.

@colleenyoung

@annya @migizii @boomerexpert @ling123 and everyone. I hear you. A better search capability is high on my wish list too. It is definitely a functionality that we hope to work on with the developers in 2019.

In the meantime, here are some tricks that I use.

1. Sort a discussion from newest to oldest
Did you know that you can switch the ordering of messages in a discussion thread to see the new message first? Read this message to find out how:
* [NEW] Customize the Order You View Posts – See New Posts First https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

2. Search for a discussion in a Group
When I want to see if there is a discussion already on a certain topic, I do the following on my computer or laptop (not so good on mobile devices):
a) Go to the Group page, i.e., MAC https://connect.mayoclinic.org/group/mac-bronchiectasis/
b) Scroll to the bottom and click VIEW MORE until all the discussions are shown.
c) Click Ctrl + F on my keyboard. This will open a search window in the upper right corner of your screen.
d) Enter a search term in the search window. For example "probiotics". All mentions of probiotics in the discussion titles will be highlighted in yellow.
e) Click the discussion of interest.

3. Searching for a specific term WITHIN a discussion.
You can use the same method as above for a discussion, click VIEW MORE until the entire discussion is unfolded. With over 7000 message in this particular discussion thread, that would be a long and frustrating task. But for the shorter discussions it can be useful.

You can always use the magnifying glass search at the top of the screen. It does return results from within discussions. But the sheer number of results can be overwhelming. The more specific the search term you use, the better the results.

And if all else fails … well you can always ask another member or send me a message. 🙂

Anyone else have any search tricks to share?

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@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.

@annya

Is anyone working with a registered dietician/nutritionist? Has it helped?

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@annya Hello Ann. Are you asking about a nutricianist because you are losing weight due to mac infection?

@prelle1

Who is the doctor . Could I have the name also, thanks , my docs here have been pretty useless!

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@prelle1 Hi there. Just want to remind you to put the @name of the petson you are replying to like I did here to get this directly to you. It looks like you were asking a question about a doctor reference from a member in an older post. Sometimes those members are no longer active and will not see your post. Let me know if I can be of any help in locating a good specialist in your area. My first choice is always getting to the nearest Mayo Clinic to your state. (In your case, the one in Jacksonville) You can also refer to the http://www.ntminfo.org site for a vetted specialist in treating mac by state. Some people are very ill and do not have the energy to do investigative searching for help. I understand that, and do not mind helping.

@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?

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@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.

@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

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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.

@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.

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Great idea.

@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.

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

@macjane

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

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Do you need phone number? Jane

@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.

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@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

@heathert

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

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@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

@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

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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.

Liked by heathert, anniepie

@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.

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@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

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