(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.

Katherine, Alumni Mentor | @katemn | Jul 14, 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)

Boomer, I don't mean to frighten her .. but when @pfists Shari said "I have been testing positive for mycobacteria abscesses for a year now." Sorry .. your statement " I’m interested in the natural improvement you’re making without meds; think it’s a good sign you don’t need’em, " is really off base.

I HAVE HAD: MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES . I FOUGHT it for THIRTY months .. it is one of the most difficult mycobacteriums to bring to "stability" .. you do NOT make "natural improvement without meds". What you DO is create UGLY ABSCESSUS in your lungs instead! Yep! Pretty ugly stuff. I've been there .. done that. I can easily speak as a voice of personal experience. Katherine

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

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

@mariposa, Andree, you just sit tight! We are here for YOU .. you are NOT here for us! Do what YOU need to do when you feel best to do it .. let your body be your guide! Hugs to you! Katherine

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

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

@windwalker, Terri, it is NOT in our heads! I HATE to say this because it sounds just toooo weird .. but after my husband comes in from his HARD walk or golf .. he needs to take a shower right away .. his sweat sends me into a spasm of coughing .. HOW embarrassing ! Could I admit to to ANYONE but my Group?!! All in my head? Nope because I don't always even realize he has been outside! Tell your husband that .. tell him he's lucky it's just burning toast!! Hugs! Katherine

pfists | @pfists | Jul 14, 2017

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

Thanks Kathryn going to br calling Mayo for a cancellation daily and see if I can get in sooner. Hoping for Dr Aksimit but may have to get someone else on his team.

So you did not have to do IV's?

I got over a case of Narcodia two years ago where I had did Iv's on myself for six weeks then one oral antibiotic for a year. The Iv's were really tough all hours of the day.
Norcodia was rare but the Dr told me this mycobacteria is even rarer. Ugh
Glad I found you all to help through this!

Shari

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

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

@heathert .. Heather, this is just GREAT information! Now Girlfriend .. my memory serves me that you found a reliable resource to purchase Acetic acid - did you get 5%, 10% .. what strength did you get based on your research as necessary? AND will you PLEASE share EXACTLY how you are using it .. AND for what! Sorry .. but what a nice thing to have for my Trusty File Cabinet. Heather, take your time but we as a Group would really appreciate it! Again, thank you for the link and Hugs to you! Katherine

re: 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.

Katherine, Alumni Mentor | @katemn | Jul 14, 2017

In reply to @beatitnow "Hi everyone. I have not written in a while. I have been in the process of..." + (show)

Amy and JK, if you find what you need there .. great .. if you don't see what you need there .. feel free to come back here to the Main Forum to get your needs met. What matters is your questions get answered with the most updated info! Hugs! Katherine

lindam272 | @lindam272 | Jul 14, 2017

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

lindam272 | @lindam272 | Jul 14, 2017

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.

Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017

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

@heathert Interesting read Heather, thank you for
posting. Wouldn't it be great if we just rinse our lungs in
vinegar??

Terri Martin, Volunteer Mentor | @windwalker | Jul 14, 2017

In reply to @katemn "Dear All, As many of you know .. I also see a trusted Homeopathic Practitioner ....." + (show)

@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
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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@katemn Katherine,
over the counter allergy meds often have those same ingredients. I used to
'live' on them to dry up all of the crud in my lungs. It seemed to give me
relief, but pulmonologists say not to use them too much because they do dry your
lungs out. It dries the crud and keeps it in your lungs leading to 'mucous
plugs'. Those of us that are seasoned 'lungers', know that that is not a good
thing. Those plugs trap infection and clog your air sacs. And girl, I wish you
could get some sleep!

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