(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

Hello everyone, i have question about Sodium levels. Does anyone have problems with low Sodium? I am struggling with my Sodium being to low and I ended up in the emergency room on Friday. I tried eating extra salt but it’s not working. It’s supposed to be 135 -145 and mine can’t even get pass 128. The doctor said I may need to stay at the hospital to slowly get a Sodium IV every 12 hours. I do not want to be there so please anyone can help. My primary care says eat extra salt. Thanks Rita

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@america..are you on a diuretic?? How long have you had the low sodium issue? Wonder if an endocrinologist is indicated? Folks on anti NTM meds….is this a possible side effect? Tdrell

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@tdrell

@america..are you on a diuretic?? How long have you had the low sodium issue? Wonder if an endocrinologist is indicated? Folks on anti NTM meds….is this a possible side effect? Tdrell

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Hi tdrell, no I’m not! But this low sodium started about 8 months ago. I’ll try to reach Mayo Clinic tomorrow and get some information. I’m not sure about the meds because I’m not on any at this moment. I have started inhaled Tobramycin for 28 days but that’s only 2 months ago. This has made my body so weak and tired and I can’t get back to where I was a month ago. It’s so frustrating! Thanks for your help.

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@america

Hi tdrell, no I’m not! But this low sodium started about 8 months ago. I’ll try to reach Mayo Clinic tomorrow and get some information. I’m not sure about the meds because I’m not on any at this moment. I have started inhaled Tobramycin for 28 days but that’s only 2 months ago. This has made my body so weak and tired and I can’t get back to where I was a month ago. It’s so frustrating! Thanks for your help.

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@america….another name for lonsodium is hyponatremia…..I just googled it….two more questions….how do your kidneys function? Are you getting immune globulin treatment?? You really need the condition investigated. Tdrell

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@tdrell

@jasmine321 ….I am curious what criteria your pulmonologist uses to start treatment for NTM. Because my local ID doctors would have rushed to put me on the triple antibiotic meds with one positive culture, my ID doc at NJH saw no indication for treatment. I asked her what I should say to local docs. She said the gold standard to consider Rx is 2 positive sputum cultures and CT scan showing bronchiectasis. Tdrell44

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My pulmo who specializes in MAC keeps it simple…no symptoms? No need to treat…

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@boomerexpert Mine seems to share the same opinion about treatment or no treatment.

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@america

Hi tdrell, no I’m not! But this low sodium started about 8 months ago. I’ll try to reach Mayo Clinic tomorrow and get some information. I’m not sure about the meds because I’m not on any at this moment. I have started inhaled Tobramycin for 28 days but that’s only 2 months ago. This has made my body so weak and tired and I can’t get back to where I was a month ago. It’s so frustrating! Thanks for your help.

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@america Rita, like Terri @tdrell said, sounds like hyponatremia. Drink less water and more electrolyte drinks like Gatorade or others that are similar. Eat tuna and other canned fish, that will raise your salt level. This condition does need medical attention. Please keep us posted.

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@heathert ….where did you find the strepfen lozenges? Ive looked on line and asked doctors and pharmacies and was told they are only available outside the United States. First application of Arikauce irritated my throat and I can see how this could lead to hoarseness and a sore throat. Where do you live and where did you find Strepfen lozenges….I’d like me to have them on hand when the need arises. Thank you!

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@windwalker

@america Rita, like Terri @tdrell said, sounds like hyponatremia. Drink less water and more electrolyte drinks like Gatorade or others that are similar. Eat tuna and other canned fish, that will raise your salt level. This condition does need medical attention. Please keep us posted.

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Agree. Because you're eliminating far more salt than you're taking in, you must drastically up your sodium intake and seek medical attention to determine the cause & treatment…this is serious…don't delay.

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@hydrang3a I am in NZ, wow I thought you would have them over there. If you could find something similar, that delivers anti-inflammatory direct to the throat, that could be good. Otherwise if you get hoarse just stop for a few days then re-start. Also take Arikace just before bed so that you are not talking after for a long period, taking it during the day was worse for me. If I remember anything else I will let you know. Good luck Heather

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Hello. I am at the beginning of this journey with mycobacterium avium. I only received my diagnosis last week based on an episode of haemoptysis, a CT scan and BAL. I am supposed to start treatment but want to discuss it with my GP first as I don't even know the criteria this decision was based on. Other than the haemoptysis and a slight cough, I am otherwise well. I am hoping to buy some time before I have to embark on the formidable treatment course. The side effects list is mighty scary 🙁

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@boomerexpert

Agree. Because you're eliminating far more salt than you're taking in, you must drastically up your sodium intake and seek medical attention to determine the cause & treatment…this is serious…don't delay.

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Hi guys thanks for all the information. I was told to se an endocrinologist and I have been trying to get an appointment but nothing until January. Meanwhile I’m drinking lots of coconut water and Gatorade. I also tried eating some canned fish. I am hoping to feel stronger soon. This is a long journey. I’ll be checking my sodium levels again next week. Thanks to this wonderful group Rita

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