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!

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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:
- 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.

heathert | @heathert | Jul 15, 2017
In reply to @jula73 "I am a 73-year-old female with a recent diagnosis of MAC along with a history of..." + (show)
@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

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Hi @windwalker , do you think that the tobramycin had helped you get rid of your MAC?

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heathert | @heathert | Jul 15, 2017
In reply to @heathert "Hi @katemn and all Sorry it has taken a while to get back to you about..." + (show)
@heathert

Hi @katemn and all
Sorry it has taken a while to get back to you about the vinegar/acetic acid concentration to kill mac, but here is the link : http://mbio.asm.org/content/5/2/e00013-14.full
It is very interesting as NTM is again more difficult to kill.

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@katemn , I purchased 80% food grade acetic acid/vinegar, from a eco chem place, the guy I spoke to was a biochemist I think,I mix with water to get 10%. It can be used for any cleaning ie soaking shower heads, loos, benches etc. Heather

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heathert | @heathert | Jul 15, 2017
In reply to @heathert "Hi @katemn and all Sorry it has taken a while to get back to you about..." + (show)
@heathert

Hi @katemn and all
Sorry it has taken a while to get back to you about the vinegar/acetic acid concentration to kill mac, but here is the link : http://mbio.asm.org/content/5/2/e00013-14.full
It is very interesting as NTM is again more difficult to kill.

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Yes @windwalker I have also thought of that too. wondered if we could inhale it in nebuliser some day. Might suggest it to my doc.

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JK | @contentandwell | Jul 15, 2017
In reply to @contentandwell "@beatitnow These questions posted by Amy are also of interest to me. For some reason I..." + (show)
@contentandwell

@beatitnow These questions posted by Amy are also of interest to me. For some reason I cannot find my way to Amy's post though. I am interested too if anyone knows anything about this. I use a chlorinated pool about 5 times a week for water exercise and I believe when we go away in October that the place where we are staying has a salt water pool.
___________________________________________________________________________________________

I know there was a thread one time about chlorinated pools, but I did not get a chance to follow the conversation. Does anyone have anything saved in their "file cabinet" about the pool topic, or any information you can contribute would be great!

Also, if there was any information about whether salt water pools are any safer? The house we bought has a pool, so I am going to have to research this. Thank you for any help you can provide!
___________________________________________________________________________________________

Thanks, JK

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@windwalker Of course my problem is not MAC so my question was more general, and being on immunosuppressants I have to be really careful. My transplant surgeon would not say absolutely to not go in hot tubs, he said he would leave that to my discretion. Probably because I told him I never go in unless I am in the pool for an extended amount of time and if during that time no one is in the hot tub I figure the chlorine by then must have killed off any lurking bacteria.
JK

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pfists | @pfists | Jul 15, 2017
In reply to @pfists "Hi all Haven't been on here for awhile. Saw my infectious disease Dr today. She wants..." + (show)
@pfists

Hi all
Haven't been on here for awhile.
Saw my infectious disease Dr today.
She wants me to get a second opinion at the Mayo clinic here in Minnesota just an one and half hours from here. I have been testing positive for mycobacteria abscesses for a year now. Had several CT scans throughout the year the last was a little better then the one before.
She said treatment May include a couple of IV's. I would administer myself. I have done IV's on myself before but was hoping for oral or inhalation medications.
Have others here had to do IV's.?
Really do not want to do this route.

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Thanks Kathryn
Will do!
Would I probably need to figure I will be there more than a day then?
Im relativity close could come back for more tests. I'm about and hour and a half away.
My infectious disease Dr here said shewanted me to go to the Mayo and she would work with them here too so it would be easier. So maybe some of the tests can be done here.

On a different note.
I have the Aerobika and put it in the baby bottle sterilizer to sterilizer. It seems not to clamp tightly shut now. I think it was safe for dishwasher washing.
I dicided to pop for a sterilizer to keep nibs easily sterilized.
Thanks!
Shari

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boomerexpert | @boomerexpert | Jul 15, 2017
In reply to @boomerexpert "@pfists I think the Mayo clinic will answer your questions...I'm interested in the natural improvement you're..." + (show)
@boomerexpert

@pfists I think the Mayo clinic will answer your questions...I'm interested in the natural improvement you're making without meds; think it's a good sign you don't need'em, and Mayo will give you good advice on that. As for IV vs. specifically oral...I'll be thrilled if I can avoid the stomach-killing oral drugs and do IV! Inhaled is best as it's most targeted,

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Sorry...missed the "abscessus" part...saw just the MAC...you know best!

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Katherine, Alumni Mentor | @katemn | Jul 15, 2017
In reply to @boomerexpert "@pfists I think the Mayo clinic will answer your questions...I'm interested in the natural improvement you're..." + (show)
@boomerexpert

@pfists I think the Mayo clinic will answer your questions...I'm interested in the natural improvement you're making without meds; think it's a good sign you don't need'em, and Mayo will give you good advice on that. As for IV vs. specifically oral...I'll be thrilled if I can avoid the stomach-killing oral drugs and do IV! Inhaled is best as it's most targeted,

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Boomer, I understand. Katherine

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unicorn | @unicorn | Jul 15, 2017
In reply to @jula73 "I am a 73-year-old female with a recent diagnosis of MAC along with a history of..." + (show)
@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

Jump to this post

Hi Katherine, thanks for that. feel better going in pool, even if the germies are there, love the muscles. Going to ask for aerobika in August and talk more about the bleeding, though not doing that now. That's the thing that knocks me down of course, but now I know it is part of the disease and not so scary. xo

REPLY
unicorn | @unicorn | Jul 15, 2017
In reply to @auntnanny "I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago..." + (show)
@auntnanny

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan

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Even old cowboys are sexy!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 15, 2017
In reply to @pfists "Hi all Haven't been on here for awhile. Saw my infectious disease Dr today. She wants..." + (show)
@pfists

Hi all
Haven't been on here for awhile.
Saw my infectious disease Dr today.
She wants me to get a second opinion at the Mayo clinic here in Minnesota just an one and half hours from here. I have been testing positive for mycobacteria abscesses for a year now. Had several CT scans throughout the year the last was a little better then the one before.
She said treatment May include a couple of IV's. I would administer myself. I have done IV's on myself before but was hoping for oral or inhalation medications.
Have others here had to do IV's.?
Really do not want to do this route.

Jump to this post

Hi all,
Keep telling your docs about Connect. Hearing about it from you who have benefited from the forum is really powerful!

If time permits, you can also provide this link to them so they can find out more about Connect:
- Mayo Clinic Connect Promotional Toolkit https://socialmedia.mayoclinic.org/mayo-clinic-connect-promotional-toolkit/
- About Connect https://connect.mayoclinic.org/about-this-community/

Connect is operated by the Mayo Clinic Social Media Network under the leadership of Medical Director Dr. Farris Timimi and Director Lee Aase. (Just in case they ask. 🙂

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