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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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 | May 4, 2016
In reply to @Paula_MAC2007 "@nanette, Hello Nan, I hope you are doing OK. RE: your question - can you spread..." + (show)
@Paula_MAC2007

@nanette, Hello Nan, I hope you are doing OK.

RE: your question - can you spread your drugs out throughout the day? My questions to you: Did your doctor make a recommendation on how you should take them? Or your pharmacist?

When I initially began the drugs, my pulmonologist told me about former patients in the Clinic on the drugs, their experiences with them, how they took the drugs to overcome side effects, etc. He said I could take the drugs spread out throughout the day, take them all at one, take them in the morning or at night, with or without food, etc. In other words, he gave me his experience with other patients and told me to find what works FOR ME when taking the meds. Just to be sure to take them consistently each day. I've taken the drugs every which way - - except space them out throughout the day. I just would never remember to take them that way!

My suggestion to you is to ask your pharmacist or pulmonologist about the efficacy of taking 1 drug 3 times a day instead of all at once. They may have a different point of view.

Any other questions or comments, we're all here to learn from - and help - each other.

Paula

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Nan, I totally agree with Paula .. she is so wise! Great advise! Just experiment with your own experience.
Personally I would share what worked for me with the particular antibiotics I was taking:

NOTES ON TAKING ANTIBIOTICS
Wake up am probiotic on empty stomach
Ripampin 1 hour before or 2 hours after a meal with a full glass of water- 4 hour before vitamins
Ethambutol and Avelox (sleep disturbance) with Azithromycin: after breakfast with a full glass of water
8 hour before or 4 hours after multi vitamin
Bedtime: take regular p.m. meds & multi vitamin, Evista, Lipitor and pm probiotic.
Separate multi vitamin & probiotics from antibiotics by at least 4 hours if possible)

REPLY
e345l | @e345l | May 4, 2016
In reply to @Paula_MAC2007 "@cacallahan and others on the meds for MAC/MAI -- There are at least 3 'standard' drugs..." + (show)
@Paula_MAC2007

@cacallahan and others on the meds for MAC/MAI --

There are at least 3 'standard' drugs that work in synergy with each other. I've been on Rifampin, Ethambutol & Azithromycin since 2007-2008. Yes, I had side effects. See my previous messages on this blog.

IMPORTANT THINGS TO KEEP IN MIND:

1) THE NAMES OF THE DRUGS -- there are different names for very similar (or the same) drugs
2) DOSAGE OF THE DRUGS - the amount is based on BODY WEIGHT. So 2 people here can be on the same drugs but in different dosages. My 1st pulmonologist had me on too high a dosage and my 2nd pulmonologist lowered the amount of one drug - - and it alleviated the nausea. Ask your doctor to verify that you are taking the correct dosage for your weight, if you have a concern.
3) SEVERITY OF MAC/MAI -- this differs among us. My MAC was quite severe when diagnosed and required me taking the 3 drugs everyday. After several years and feeling better, the drugs were reduced to 3 days a week.
4) WHEN TO TAKE THE MEDS -- per my pulmonologists at a teaching hospital (and I've written this earlier), I can take the drugs whenever I want, but consistency is the key. It doesn't matter what time of day or night I take the drugs, or whether before or after food. They said to find what works for me, and to faithfully take them in this pattern.
5) SOURCE OF THE DRUGS -- unfortunately, I've found when switching health insurance plans or pharmacies, that the same drugs can come from differing manufacturing centers. And the nausea can start all over again! So you can get a batch of the drugs that may cause nausea for you, depending on where they were manufactured.
5) TESTS -- I've had 2 lung biopsies and 1 lung lavage (filling the lungs with fluid and suctioning out the fluid, cells & bacteria). My pulmonologist is very thorough and knowledgeable about MAC/MAI.

I am alive and feeling very good!! Some keys to treating your MAC/MAI:
1) take the meds faithfully (if you've been prescribed them)
2) get plenty of rest
3) EXERCISE to strengthen your lungs. I do Pilates and gentle Yoga 4-5 times a week. Try to briskly walk for 20 minutes a day.
4) Vitamin D - get yours checked. There's a correlation between low Vitamin D & MAC.
5) Get your eyes checked routinely since one of the drugs can cause blindness. My ophthalmologist is familiar with the drugs & had another patient on them who he had to take off the drugs.
5) Talk with your pulmonologist about everything you don't understand. Become your own advocate for your care - knowledge is power. This site has a lot of excellent practical information.
6) Avoid potential sources of bacteria . . . hot tubs, spas. I don't take showers - just baths! (trying to be on the safe side). Take care of your lungs.
6) Stay positive! Sometimes hard to do.

Blessings to all!
Paula

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Hello Katherine, yes I agree my e345l isn't friendly!!! My name is Ellen.<br />
What I need to find out more about is, does the amikacin inhaler have a<br />
strong solution in it that one may feel nauseated?<br />
I know my doctor will answer my questions. It affects every one in a<br />
different way. One fears the unknown. Is it the sterilization part that<br />
gets bothersome? It could for me, especially if you have to boil water<br />
for extra cleanliness. I would like to hear your experience with it.<br />

REPLY
e345l | @e345l | May 4, 2016
In reply to @katemn "Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let..." + (show)
@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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Thanks Katherine, this is a lot of helpful information! I do have a<br />
nebulizer, I took something a while back but I don't do that any more per<br />
doctors orders, but have the machine. It helps to understand it all.<br />
Something I took in a nebulizer made me sick to my stomach so I got another<br />
medication for it.<br />
My understanding was there is a test trial where one goes to Mayo about<br />
every month so the doctor can keep tabs on you more closely. And you had<br />
to do it faithfully at home every day.<br />
Two lung doctors told me about the leprosy drug, it is for real for<br />
treating MAC. Will wait to see Dr. Akasmit and what he recommends! But at<br />
least I will be knowlegable about Amikacin.<br />
<br />
Ellen<br />

REPLY
heathert | @heathert | May 4, 2016

thank you so much for the info about Amikacin. I have been invited to go into the trials for the inhaled type.(havnt started yet) I only have Intracellulare MAC but have been on the Big 3 for a year and although better, it is still there. Amikacin Sounds very time consuming but worth it. Will take your advice with the process and vitamins. This would all be so much more of a worry without these sites. I was told I would have to take this for a year after clear results. A long Haul.

REPLY
Lisa Y | @tutti | May 4, 2016
In reply to @katemn "Tutti, re: "administered through a pic line. Has anyone taken a drug this way for their..." + (show)
@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.

+++++++++++++++++++++++++++++++++++++++
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 Katherine... Just wanted to tell you I'm going for a second opinion, I<br />
got an appt with your, Dr. Akasmit. My appt is June 2. I'm so happy to<br />
being seeing a Dr who is really knowledgeable about this disease. I've been<br />
going to Case Western Reserve university hospital in Cleveland. Very large<br />
teaching hospital, I see a pulmonary dr and infectious disease dr. The<br />
infectious disease dr. has only seen 1 other patient with the<br />
microbacterium abscessus that I have. I have never felt comfortable after<br />
hearing that. Thanks so much for telling how much confidence you have in<br />
Dr. Akasmit. Thanks again, Tutti<br />

REPLY
barbjh | @barbjh | May 4, 2016
In reply to @katemn "Tutti, re: "administered through a pic line. Has anyone taken a drug this way for their..." + (show)
@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.

+++++++++++++++++++++++++++++++++++++++
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)

Jump to this post

Hi Tutti,<br />
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. <br />
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.<br />
Keep in touch. The Mayo clinic is very thorough, I wish you the best.<br />
Barb<br />
<br />

REPLY
Katherine, Alumni Mentor | @katemn | May 4, 2016

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

REPLY
Katherine, Alumni Mentor | @katemn | May 4, 2016

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

REPLY
1 reply
Katherine, Alumni Mentor | @katemn | May 4, 2016

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

REPLY
S Jackson | @mommasaid | May 5, 2016
In reply to @katemn "Hello Barb, re: " I just found out I have a bacterial overgrowth in my small..." + (show)
@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.<br />
<br />
<br />

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