(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

@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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@katemn Ha!
My Dr at Mayo didn't know about this forum either. He thought it was
wonderful.
 

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@lindam272

One more thing – for all those using the Aerobika – that needs to be changed out every 6 months. It says it in the booklet that mine came with and I verified it with my respiratory therapist. Just an FYI.

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@lindam272, Linda, my guess would be those greenish rubberish parts I see .. probably give out in time? I guess we need to use indelible marker to date them! Thanks Linda! Hugs! Katherine

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@katemn

Dear All,
As many of you know .. I also see a trusted Homeopathic Practitioner .. I am always concerned about a repeated use of ANY over the counter product .. I counseled with her on my use of the sleep product Unisom for my sleep disturbance.

Her response was: “With the Unisom, diphenhydramine or doxylamaine, it dries out the bronchioles, so that may cause rebound cough. Also, with long term use, it may cause memory issues. ” Members, I am SO glad I check with a professional .. remember she is also a Pharmacist! Per her recommendation I have updated my File Cabinet per below! Hugs to all! Katherine

So my updated File Cabinet is:
SLEEP DISTURBANCE I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now “stable”. As I have posted I really don’t know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn’t really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use nightly two things : a. ONE TwinLab Magnesium 400mg tab
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1484004326&sr=1-1&keywords=twinlabs%2Bmagnesium%2Bcaps&th=1
The TwinLab tabs have really helped me .. can’t say they would for you .. but do be aware they will result in looser stools! I no longer need to take Fibercon 2x per day!

SECONDLY .. UPDATE: ** Sleep disturbance b. and ONE 3mg Nature Made Melatonin tab (As we age, our bodies produce less and less melatonin. If you’re one of those people who say melatonin keeps you awake, it likely because you’ve been taking too big a dose. A few people can take 20 mgs and it puts them to sleep! Many of us will toss and turn with 10 mg. A small 3 mg dose works fine for me. You can always take two (or more) to find the dose that works for you. Melatonin is not a “One Size Fits All” )

Melatonin may improve sleep disturbances in a wide range of patients, including those in the intensive care unit (ICU) and patients with Alzheimer’s disease. Several published cases report improvements in sleep patterns in young people with damage to the pineal gland area of the brain due to tumors or surgery. Based on preliminary research, melatonin may improve sleep in patients with asthma or depression. Further research is needed in these areas before a firm conclusion can be reached.

Another Tidbit .. I read a while ago about this and have been practicing nightly to try to get to sleep at night since I really do have trouble getting to sleep. This is what I read and what I do:
You can do this anywhere but especially to quiet the mind to get to sleep
Gently press your thumb against your index finger, then your middle finger, then your ring finger, then your pinkie finger.
When you touch your index finger, say: I
When you touch your middle finger, say: AM
When you touch your ring finger, say: AT
When you touch your pinkie finger, say: PEACE
Breathe deeply as you say each word. Go as slow or as fast as you’d like.
For me I find I do not need to do the actual pressing of the thumb to the fingers .. it is more of a mental visual of that process. Then as my mind wanders with the issues of the day .. I just bring my mind back to this Mantra of I .. AM .. AT .. PEACE. I find it is really helping get to sleep easier. I thought I would share it .. hope it helps someone! Hugs! Katherine

( You could also use this technique will get you through all kinds of stressful emotions and help you release more quickly .. even in the middle of a fuss with a partner or friend.)

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I just crawl into bed with the tv on with the sleep timer set at one hour. I am usually asleep within 20 mins. or less. The tv keeps my mind from thinking too much; that is what used to keep me awake. Plus, my bed is like a super comfy nest. Everything is soft and billowy. All cotton sheets and covers are a must because they breathe and keep you cool. Polyester blends do not, they hold heat. Ceiling fan to keep air moving. Oh yeah, and hubby in his own room! ; )

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@lindam272

Hi, All, – I had my check up with my ID doc a couple of days ago. I went with a yellow pad and a page full of questions, primarily initiated from posts on this forum. I also went back and reviewed my sputum text results from the beginning before my appt. I have 2 docs collecting my lovely mucous – my ID doc and my CF doc. I realized in reviewing that my ID doc had the results of a clean test in March and my CF doc had a clean test from me in June! (I started the Big 3 in December 2016 and have taken them every day) So I’ve had 2 clear sputum tests and didn’t even know it. No one told me and I didn’t know what I was looking at when I reviewed the results – until you all came along! I just took another sample into the lab earlier this week which I know will come back clear. I’ve had some brain fog lately – enough to cause a small accident while backing out of a parking space last week. I’ve also had some other close calls and am having trouble keeping things straight in my business as a Realtor. I mentioned to my ID doc and told him in light of the fact that I have 2 samples clear and that I’m breathing better, I am going off the Big 3 meds. He wanted to keep me on until March 2018 to “be sure” those little buggers were dead. I said – Not happening! I’m off now. They are dead. I know they are dead. So prayers that they are! I have a CT scan scheduled for early next month about 10 days before I go back to see my ID doc and review this CT with my last one done last November. You all – most especially our Mentor, Katherine, are the best! I appreciate each and every one of you so much! I will keep you posted on my final results, but I know it will be a good outcome. Blessings! Linda M

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@lindam272 Linda, I am so happy for you! – Terri

Liked by lindam272

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@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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@auntnanny, Jan, We have a very dear friend who has a form of ALS who is a lifelong musician .. worked his way through law school as a sax player. As his lung capacity diminished he was determined to continue with his jazz band AND enhance his lung capacity .. sure enough .. he took up the harmonica AND has maintained as much of his lung capacity as possible with daily harmonica practice! So the below really caught my eye! Thought you might enjoy it! Katherine

Modern Healthcare, Meet the Harmonicats: Using musical therapy for COPD, “Play three verses of ‘Oh! Susanna’ and call me in the morning.” That could become a common “prescription” pulmonary specialists pass on to their patients as “harmonica therapy” for chronic obstructive pulmonary disease starts to take hold. Harmonicas have been used to improve lung function at hospitals across the country, including the Mayo Clinic, Jacksonville, Fla.; El Camino Hospital, Mountain View, Calif.; Seton Medical Center, Austin, Texas; and Advocate Christ Medical Center near the South Side of Chicago—an area that’s produced some legendary blues harmonica players.

Liked by ling123

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It certainly makes me smile. I’ve never even tried a harmonica —- but may be headed out to buy one. I have so much trouble finding enough time for everything (as I’m sure others do too). I cook lunch for the hired hands here on the ranch (and I’m a pretty good cook and put a lot on the table). So, from the time I start that until they eat and I get it cleaned up, I’m in for about 3 hours. Then…… I’d really like to just sit down — Ha! I’m past 76 and have quite a bit of arthritis (and two torn shoulders that need to be replaced. Too much damage and arthritis to repair but there’s so much down time and I don’t know how successful that would be at this age. I’ve been reading a bit about stem cell replacement for some of these type problems…….. know anything about that???? I have two grand pianos, an older 3-keyboard organ and a newer electronic piano/organ —– and one saxophone in the house…… maybe I need that harmonica —– and a lesson book. I saw a country music show in Branson, Mo — young man was just ever so cute — and he had what looked like a new type harmonica with a fabulous sound. I need to learn about that because it was great. Larger than just the old-type harmonicas —– I was sure impressed. As I think back over today (here at 12:30 am) I never did my nebulizer today and I don’t want to let up on that. Guess I’ll wait till morning and be sure I do it twice tomorrow. Now…… if I were coughing, I would have thought about that much earlier today. Goodness, I feel like I’ve written a novel. So sorry to bog you down with these little sidenotes. Jan

Liked by tdrell, ling123

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@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

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

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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@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

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

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

@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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@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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@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 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

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@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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