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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by @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

REPLY

@macjane

I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane

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Thinking of you sending silent blessings!
linda

Katherine, I have been wanting to reply to your earlier posting but have kept running into errors on the forum web site. Now that the problem has been resolved, I just wanted you to know that I’m thinking of you and wish you good results from treatments for the next X months. It is evident that it is very difficult for you to stay away from this forum. But please take good care of yourself first. You know we’ll all understand and will keep you in our thoughts and hearts.

hi has anyone had a problem with candida because of the antibiotic and how are you getting rid of it

@katemn

Dear All, I apologize for not connecting with you sooner but I have been very ill. I was diagnosed with Pseudomonas Aeruginosa, Klebsiella and Serratia bacterias. I have essentially been sleeping or with whatever small energy reserves I have had .. dealing with the red tape of insurance and Mayo Clinic. It has been hell on wheels to be honest .. really a horrible experience for a sick person to have to go through. I FINALLY have an appointment on Wednesday for a test dose of Tobramycin at Mayo Clinic Rochester MN after my local doctor (nicely .. positive it is due to fear of malpractice) refused to do the test dose. The 28 days of Cipro 2x per day failed to help me so the next step is the Tobramycin. Please forgive my absence and know that I will be back on Connect as my health allows .. but it just hit me like a ton of bricks and sleep is all my body wanted. Please take care of each other until I am back .. and watch for newcomers .. you know what it was like. Hugs to all! Katherine

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@katemn Katherine, take care of yourself and get plenty of rest. I can so understand the debilitating fatigue, I went through that in the last month and a half prior to transplant. I could barely sit at the computer.
Get plenty of rest and get good medical advice at Mayo, of course you will there. I don’t know about these local doctors, they make me wish I lived much closer to my transplant center, MGH in Boston, but having to allow a two hour span to get there during the day is a bit far to go for a PCP.
JK

@swrtwdml

I seem to b having the same problem, When I click on ” last” or any of the number pages I come up with the same post. Even when I click on “previous.” I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

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@swrtwdml, We all know how stressful waiting can be when we are desperate for answers. Here’s hoping you have good news very soon! Stay strong!
Becky

@macjane

I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane

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@macjane, I am so sorry you’ve had such a hard time with your meds. Which meds did you start with and what was your experience with them? What type of doctor is handleing your care and what have they done to help your side effects? Im so glad you found our forum. Everyone here is so helpful. So read past experiences and get the knowledge you will need to be more confident in your own care and asking for what you need. Stay strong!
Becky

@swrtwdml

I seem to b having the same problem, When I click on ” last” or any of the number pages I come up with the same post. Even when I click on “previous.” I clicked on the link above, makes no sense to me, guess I am just too stressed out waiting for more test results.

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Thanks.

@macjane

I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane

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@katemn, Our precious Angel, thanks for saving the day with your wisdom and your file cabinet. Now go rest and take care of yourself. Stay strong and you will be back before you know it.
Becky

@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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I’ve been on the 3 mess for a month now! I had diarrhea, complete fatigue and weakness, terrible rash which the doctor didn’t know whether or not they could attribute it to the anabiotic’s, and now I have blisters on my hands and the skin on my hands are peeling! OMG! Oh, & someone told me I should not fly while I have an MAI! Has anyone else heard of that?

@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, a rash is a side effect. Although limited, other antibiotics can be substituted when there are severe side effects. On an airplane you are breathing the same air over and over and over, so perhaps your friend was thinking of that. In other posts some members have discussed wearing a mask for their protection from other people’s germs. So sorry!

@marier

hi has anyone had a problem with candida because of the antibiotic and how are you getting rid of it

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@marier, I have always had yeast infections when taking antibiotics. There is something our mentor Katherine has suggested and it has helped prevent mine from being so frequent. First take probiotics and eat some yogurt. Second, clean and sterilize any medical equipment that goes in your mouth. Including your toothbrush and waterpic. I spray mine with peroxide after use. You can buy peroxide in spray bottles now. My nebulizer parts get washed after each use then use 1part vinegar and 3 parts distilled water for 30 minutes to sterilize then rinse and air dry over night between two clean papertowls. Third, I always keep over the counter vaginal yeast infection medication in my bathroom. There is prescription medication for oral thrush called nystatin swish and swallow and a pill called fluconazole had worked for me. This is all i can think of and i hope it helps.
Becky

@macjane

I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane

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She is an Angel!
 

@marier

hi has anyone had a problem with candida because of the antibiotic and how are you getting rid of it

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Becky, Using a baby bottle sterilizer is way easier than the vinegar and water routine. I soak my equipment in soapy water for awhile, then rinse and put in the sterilizer. Microwave and done. Lay out to dry. My respiratory therapist suggested the bottle sterilizer. It’s been a blessing for me! Linda

@macjane

I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane

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Katemn….thinking of you and hoping the new medical course will conquer the vicious bugs….take care! Live terriD

@macjane

I am just joining as I was diagnosed with MAC in January by University of Michigan. I had two awful experiences with meds and are due to start again. I am really scared. Thanks, Jane

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Katemn …dang auto correct…that is love terriD

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