(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

@janovr

@boomerexpert I live in Clermont.
I live in over 55
Kings Ridge!
Love it here!

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@janovr glad you love it! I too live in a 55+ community…Highland Lakes in Palm Harbor. Unfortunately don't know where Clermont is…how far from PH?

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@boomerexpert

@janovr glad you love it! I too live in a 55+ community…Highland Lakes in Palm Harbor. Unfortunately don't know where Clermont is…how far from PH?

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@boomerexpert IDK where PH is. 😩 Not up on my Fl. Lansdscape yet!

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@boomerexpert

@deborahwolf I am not…not big on golf…ironic as my father owned a course in PA… However, I live just 5 mins from Innisbrook so perhaps we could meet for a cocktail one day after the tourney…!

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@boomerexpert, I hope that you do get to meet @deborahwolf. You will love her. She is a cool gal.

Liked by deborahwolf

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@janovr

@boomerexpert IDK where PH is. 😩 Not up on my Fl. Lansdscape yet!

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@janovr no prob…easy to find out via Google and I will! You can too if you wish…

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@america

Oh my Clermont is an hour away from where I live!!

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Hi everyone! I have a question… does anyone know if it’s safe to sleep on a memory foam mattress? I read up on it but it’s not enough! Thanks.

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@america Safe in what way?

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Boomerexpert hi! I got a wedge memory foam topper for my mattress about six months ago. I did not know very much about memory foam but I thought it’s just a wedge and it is wonderful… but looking back at my doctors appointments and how much pain I was having in the last six months. I have been on so much different medication for pain like never before. I did some research on it and it did say a lot about people with lung disease should not use a memory foam mattress. You can get really sick from it so I don’t know if anyone has one or have any information on it. I would love to know. Thanks Rita.

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Have been on Azithromycin and Ethambutol since March 6th. So far so good just get tired often.

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@america

Hi everyone! I have a question… does anyone know if it’s safe to sleep on a memory foam mattress? I read up on it but it’s not enough! Thanks.

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@america, Rita, I bought a very expensive foam topped mattress seven years ago and lasted only 30 days on it. I was awakened constantly from being hot and sweating. I felt like a roasting chicken every night. I got rid of that mattress and that roasting ceased. The foam is a synthetic material and holds body heat. It does not breathe. Prior to that, we had a 3" thick memory foam slab on our bed. We got rid of it because we would sink down into it and it was like being encased in cement. I found that my legs were stuck down in a trench and it was difficult to roll over. I felt like I had to climb out of the groove. There may be brands out there that are good and do not roast you, but I don't know which ones they would be.

Liked by tdrell, america, anniepie

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@windwalker

@america, Rita, I bought a very expensive foam topped mattress seven years ago and lasted only 30 days on it. I was awakened constantly from being hot and sweating. I felt like a roasting chicken every night. I got rid of that mattress and that roasting ceased. The foam is a synthetic material and holds body heat. It does not breathe. Prior to that, we had a 3" thick memory foam slab on our bed. We got rid of it because we would sink down into it and it was like being encased in cement. I found that my legs were stuck down in a trench and it was difficult to roll over. I felt like I had to climb out of the groove. There may be brands out there that are good and do not roast you, but I don't know which ones they would be.

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Hi Terri! Thank you. Unbelievable how these things are made. I will be done with mine too. Thanks Rita

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@america

Boomerexpert hi! I got a wedge memory foam topper for my mattress about six months ago. I did not know very much about memory foam but I thought it’s just a wedge and it is wonderful… but looking back at my doctors appointments and how much pain I was having in the last six months. I have been on so much different medication for pain like never before. I did some research on it and it did say a lot about people with lung disease should not use a memory foam mattress. You can get really sick from it so I don’t know if anyone has one or have any information on it. I would love to know. Thanks Rita.

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@america thanks for clarifying Rita. I also have RA, so have had an adjustable bed for many years…highly recommend the investment. I also invested in a top notch mattress which has many layers, one being memory foam (beneath the top layer)…it's marvelous.

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@boomerexpert

@america thanks for clarifying Rita. I also have RA, so have had an adjustable bed for many years…highly recommend the investment. I also invested in a top notch mattress which has many layers, one being memory foam (beneath the top layer)…it's marvelous.

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Thanks!! I need to look into changing my wedge mattress topper. Rita

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@boomerexpert

@america thanks for clarifying Rita. I also have RA, so have had an adjustable bed for many years…highly recommend the investment. I also invested in a top notch mattress which has many layers, one being memory foam (beneath the top layer)…it's marvelous.

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@boomerexpert My best friend bought an adjustable bed and loves it. She let me have her bed while I was visiting there, but was taking ambien to knock myself out, so I don't know if it was comfortable or not. Her parents also have the dual adjustable bed, his & hers. Do you have a spouse to accommodate with the other half of your bed? I am asking because my hubby and I have diff comfort levels in a mattress. He likes super firm, and I like super soft. So we have separate bedrooms, but were thinking of downsizing and sharing a room. Any suggestions?

Liked by america

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@america

Boomerexpert hi! I got a wedge memory foam topper for my mattress about six months ago. I did not know very much about memory foam but I thought it’s just a wedge and it is wonderful… but looking back at my doctors appointments and how much pain I was having in the last six months. I have been on so much different medication for pain like never before. I did some research on it and it did say a lot about people with lung disease should not use a memory foam mattress. You can get really sick from it so I don’t know if anyone has one or have any information on it. I would love to know. Thanks Rita.

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@america Why/how does memory foam make lung patients sick?

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Hi Terri! My husband and I read Up on different types of mattresses recently and the polyurethane that’s in memory foam causes problems like with breathing and sinuses, COPD, RA and nausea. I also read some reviews that was not good. I’ll keep checking.

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