(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

@katemn

Tutti, re: “administered through a pic line. Has anyone taken a drug this way for their mycobacterium abscessus?”

The FIRST thing I would ask the doctor is WHERE IS YOUR mycobacterium abscessus LOCATED!! When I was googling mycobacterium abscessus .. I didn’t realize it could be in MORE places than the lungs! It can be caused by dental work etc .. I had no idea. SO .. if it is in your lungs .. it would make sense to me to INHALE it by a nebulizer DIRECTLY INTO YOUR LUNGS!! A pic line would get it into YOUR blood stream is my understanding!

So do you due diligence and find out WHERE YOUR mycobacterium abscessus IS .. it is YOUR body!! No body cares about it more than you do! IF it IS in your lungs .. personally I would get my fanny to a SECOND OPINION Infectious Disease Pulmonologist! Just my opinion.

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Tutti, being a former accountant I researched like crazy prior to taking any of the meds .. I just looked through my notes on Amikacin .. found the following .. do with it what you will .. it is ONLY ONE PERSON’S EXPERIENCE AND OPINION .. I just took note of it and put it into my personal notes and am sharing it with you .. it DOES NOT MEAN IT WOULD HAPPEN TO YOU! But personally I would prefer to the hassle of inhaling the Amikacin to a pic line .. just me. (google Pic Line Infection Risks .. interesting)

I saw that some people had been on amikacin to treat this also, has anyone else experienced hearing loss with amikacin? I have lost my hearing due to it, and now have a cochlear implant. I have to say that is one of the harder things that i’ve had to deal with so I am always looking for others who may have experienced the same thing! .. I used IV amikacin for about 6 months and then switched to inhaled amikacin. The hearing loss did not get worse. I was told that inhaled amikacin doesn’t go to your blood directly and that’s why it would not affect the hearing loss like the IV does)

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Hi Tutti,
I also have been seeing Dr Aksamit. I will be curious what he suggests for you. I go back on June 9 for a pulmonary test, CT scan and sputum sample. I just found out I have a bacterial overgrowth in my small intestine so am on antibiotics for that. Probably from the Prilosec I have been on and antibiotics…not the major ones yet. I feel like a druggy.
I don’t know if this is a good thing but I have been disfusing essential oils, pine oil is suppose to help with bacteria.
Keep in touch. The Mayo clinic is very thorough, I wish you the best.
Barb

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Tutti, I can’t even begin to tell you how relieved I am that you got into see Dr. Aksamit .. I can sleep easier now! YEAH!!!!! I am SO happy!

You just get your questions written down .. listen CAREFULLY to what he says .. WRITE DOWN exactly what he says AS soon as you walk out the door .. even in the Waiting Room! There will be a lot of info and it is so hard to remember it all if you wait to write it down. I can’t tell you how many times I have gone over my notes and found out another thing I hadn’t remembered! ALSO gather together EVERY SINGLE medical record .. XRAY .. MRI etc that you can get ahold of .. you have a right to get a copy of them! Get started right away .. some doctor offices drag their heels .. Personally I have told them NOT to mail them .. that I would PICK THEM UP .. that way they have no excuse! Plus having those copies will give Dr. Aksamit a base line to compare to if he has to repeat any tests to confirm where he thinks you are now.

It is SO worth making the trip to see someone who knows what they are doing .. can put the complicated puzzle together to put together a proper treatment program for you. I’m SO happy for you!! Many Hugs to You! Katherine

UPDATE 5/22/16
I’ve been thinking about you! Be sure to let us know how your appointment with Dr. Aksamit goes and how you are doing! Don’t keep us on pins and needles! Sending you Lots of Positive Energy! Katherine

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Hello Barb, re: ” I just found out I have a bacterial overgrowth in my small intestine so am on antibiotics for that. Probably from the Prilosec I have been on and antibiotics…not the major ones yet.”

When Dr. Aksamit put me on the antibiotics he also told me to start probiotics .. so I started right away daily switching between 3 different one. I never did have a yeast infection. So I googled what you have .. saw the below .. I am really curious what Dr. Aksamit will say. Every issue in our body is complex so there is never just one answer .. let us know what he says .. it will help others. Just one of the articles I read was the below:
http://draxe.com/sibo-symptoms/ .. but as I said .. it is a much more complicated issue. Hope all goes well with you! Hugs! Katherine

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Hello Heathert, yes it is a long haul .. but HOPEFULLY so will be our lives! A joyful .. fun long haul .. IF we choose to view it that way AND make it that way! Go be happy! I won’t pretend I loved it .. BUT I am a pretty impatient person so that is certainly a factor! Hugs! Katherine

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@katemn

Hello Barb, re: ” I just found out I have a bacterial overgrowth in my small intestine so am on antibiotics for that. Probably from the Prilosec I have been on and antibiotics…not the major ones yet.”

When Dr. Aksamit put me on the antibiotics he also told me to start probiotics .. so I started right away daily switching between 3 different one. I never did have a yeast infection. So I googled what you have .. saw the below .. I am really curious what Dr. Aksamit will say. Every issue in our body is complex so there is never just one answer .. let us know what he says .. it will help others. Just one of the articles I read was the below:
http://draxe.com/sibo-symptoms/ .. but as I said .. it is a much more complicated issue. Hope all goes well with you! Hugs! Katherine

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I have been bugging my Doctors if I could have candida but they all have said no. I have been eating Oikos triple zero twice a day but even though it has less carbs it sill makes my sugar go up. I found Goodbelly straight shot in a four pack with no added sugar the others have way to much sugar. So I drink one of these and one live yogurt When I went to buy the Goodbelly the man in that department said a lot of people can’t use because it gives them abdominal pain but I decided to try it. After a couple of days my abdomen became bloated and hard and really hurt bad but it was late Friday and I knew I was too complicated for ER so I toughed it out since I live close to an ER. I thought I might have an obstruction. By Monday it was better. Told my husband and pharmacist maybe it was the good and bad bacteria fighting it out. I am still using it but you need to check with your Doctor. I eat a lot of fruit and salad and try and wash it really good but never know what bacteria is in our food. Good luck.

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Hello Ellen, myself .. never had a bit of trouble with the inhaled Amikacin .. bothersome in terms of time issue but no nausea at all! In using the baby bottle sterilizer and having a weeks supply of nebulizers .. really it was not that big a deal .. I am just a whiner! Not too patient! Just never had any issues with it .. good luck with it! Hugs! Katherine

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@katemn

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I’ll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn “abscesses” mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

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Hello Katherine! I hope you got my email with my name. My daughter set me
up and thought we had to be careful with our name. Now I don’t know the
link to get on the Mayo news letter or whatever I was on and saw yours and
others post. Can you give that to me? I will be going to Mayo on the
15-16th. Hope I can see Dr A as I have some issues since I am not on any
meds right now.

Ellen

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Yes…I have RA, and pulmonologist now suspects I have MAC…getting bronch on Tuesday although unsure if such an invasive dx tool necessary without doing a sputum first…checking on that… I live in Tampa and can find no good docs here…really have to travel to Gainesville for top notch doc for this infection?? Or CO…or MN…?! Does everyone here know that no meaningful research has been done on this infectious disease, and the same approach to treatment has been used for at least 20 years? Sheesh…And that’s in spite of the significant increase in cases. I, too, have extensive reservations about taking so many heavy antibiotics…with such ridiculous side effects. I live alone so must be able to function. Anyone here in FL want to share a trip to Gainesville with me? 🙂

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Hello!
I am an active 59 year old woman with pulmonary MAC and aspergillosis. Just started my year long treatment,3x week with three antibiotics. I am having major problems with acid regurgitation. Tried everything: splitting up the dose into two meals, drinking lots of water, light evening meal, not lying down and only taking the meds during the day…my mouth is burning and it is hard to imagine a whole year like this. On a positive note, this is my only side effect. And since my MAC was diagnosed fairly quicly, I also have few symptoms, apart from the occasional asthma. Any pointers on avoiding all this acidity?
Thank you so much!

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@liliane

Hello!
I am an active 59 year old woman with pulmonary MAC and aspergillosis. Just started my year long treatment,3x week with three antibiotics. I am having major problems with acid regurgitation. Tried everything: splitting up the dose into two meals, drinking lots of water, light evening meal, not lying down and only taking the meds during the day…my mouth is burning and it is hard to imagine a whole year like this. On a positive note, this is my only side effect. And since my MAC was diagnosed fairly quicly, I also have few symptoms, apart from the occasional asthma. Any pointers on avoiding all this acidity?
Thank you so much!

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Yes. Try acidopholis…works wonders to replace the good bacteria the antibiotics are killing!

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Kate,
Enjoy reading your blogs. I just found out that I have MAC also. I read some articles about MAC hides in the pipe of the water. Do you take extra precaution with tap water?

Thanks.
Ana

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@akbooks

Kate,
Enjoy reading your blogs. I just found out that I have MAC also. I read some articles about MAC hides in the pipe of the water. Do you take extra precaution with tap water?

Thanks.
Ana

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Hello Ana
MAC is a pretty common microorganism. It is found pretty much everywhere. In water, even in salt water, in house dust, in soil, animals and birds…the only reason some of us become infected is because of some underlying condition which allows for the growth of such microorganisms in our tissues. The most common reason a person becomes a host to MAC is when there is a compromise in immunity. Like in AIDS patients for example. Pulmonary MAC is found in folks with underlying lung disease, such as COPD or asthma, as it is my case.
Aside from taking the 12 month course of the 3 prescribed antibiotics, my doctor has not recommended any additional environmental precautions.
All the best to you!
Liliane

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@akbooks

Kate,
Enjoy reading your blogs. I just found out that I have MAC also. I read some articles about MAC hides in the pipe of the water. Do you take extra precaution with tap water?

Thanks.
Ana

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Enjoy reading all this information as well. I was diagnosed in January of this year and I have had so much trouble taking the 3 meds. I am now trying essential oils, which seem to be helping. The meds were horrible……..even caused my teeth to turn orange…..I grabbed the Crest strips immediately! I am finding that cooler, damp/wet days are much harder than sun/warm days. The meds are so expensive, even with good insurance and they caused me to be in bed REALLY sick for 17-24 hours and being a school teacher I could not do this. I am getting an appointment with an Infection Control Doctor today and seriously considering changing from my Pulmonologist.

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@liliane

Hello!
I am an active 59 year old woman with pulmonary MAC and aspergillosis. Just started my year long treatment,3x week with three antibiotics. I am having major problems with acid regurgitation. Tried everything: splitting up the dose into two meals, drinking lots of water, light evening meal, not lying down and only taking the meds during the day…my mouth is burning and it is hard to imagine a whole year like this. On a positive note, this is my only side effect. And since my MAC was diagnosed fairly quicly, I also have few symptoms, apart from the occasional asthma. Any pointers on avoiding all this acidity?
Thank you so much!

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Liliane,
Thanks for your note. Have you tried kefir? You can make your own and it has lots of probiotics.

Ana

Liked by liliane

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@liliane

Hello!
I am an active 59 year old woman with pulmonary MAC and aspergillosis. Just started my year long treatment,3x week with three antibiotics. I am having major problems with acid regurgitation. Tried everything: splitting up the dose into two meals, drinking lots of water, light evening meal, not lying down and only taking the meds during the day…my mouth is burning and it is hard to imagine a whole year like this. On a positive note, this is my only side effect. And since my MAC was diagnosed fairly quicly, I also have few symptoms, apart from the occasional asthma. Any pointers on avoiding all this acidity?
Thank you so much!

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Hello Liliane, when I started my treatment of 5 antibiotic Dr. Aksamit of Mayo Clinic immediately recommended that I take a daily probiotic. I did a bit of research .. and for myself decided to seek out 3 different brands of the MOST billions of probiotics that I could find. That way I felt I would get the advantage of various types of probiotics .. I rotated daily the 3 brands. So in thirty months of taking 4-5 antibiotics I did not get a single yeast infection.

Because I also have GERDS (acid reflux) I personally take a daily Aciphex tablet AND have raised the head of my bed by 5 inches. This can be done simply by using “bed risers”

( http://smile.amazon.com/Greenco-Super-Strong-Furniture-Storage/dp/B00M9FXFG0/ref=sr_1_2?ie=UTF8&qid=1463723955&sr=8-2&keywords=bed+risers+4+inch

.. raising the head of the bed helps a lot.

In terms of the burning mouth. Ask your dentist if you have developed “Geographic Tongue” .. google it .. you will be able to tell if you might have it. My dentist recommended using VERY LITTLE “Colgate PreviDent 5000 Plus” toothpaste. Plus I read .. and it has helped .. swish 3x per day a mixture of 5-10 drops of GSE Grapefruit Seed Extract mixed in one cup distilled water. I find that “swishing” for several minutes helpful

Hope this is helpful! Wonderful that you were diagnosed early! Sending you positive energy! Katherine

UPDATE:
June 16, 2016
Just went to my wonderful dentist .. mentioned my “burning .. painful tongue”. He told me “geographic tongue” .. is NOT painful! He diagnosed “thrush” and gave me a prescription of Oral Nystation that he is having me “swish” around my mouth for 2 minutes 4x daily. Then because I have had it for so long he feels I have it inside my body so rather than spit it out .. he is having my swallow the Nystatin. I am very grateful for such a smart dentist! Hope he does not retire too soon!

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