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.

america | @america | Mar 23, 2019
In reply to @boomerexpert "@america thanks for clarifying Rita. I also have RA, so have had an adjustable bed for..." + (show)
@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.

Jump to this post

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

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 23, 2019
In reply to @boomerexpert "@america thanks for clarifying Rita. I also have RA, so have had an adjustable bed for..." + (show)
@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.

Jump to this post

@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?

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 23, 2019
In reply to @america "Boomerexpert hi! I got a wedge memory foam topper for my mattress about six months ago...." + (show)
@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.

Jump to this post

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

REPLY
america | @america | Mar 23, 2019

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.

REPLY
boomerexpert | @boomerexpert | Mar 24, 2019
In reply to @windwalker "@boomerexpert My best friend bought an adjustable bed and loves it. She let me have her..." + (show)
@windwalker

@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?

Jump to this post

I believe you answered your own question with your friends' parents' solution

REPLY
anniepie | @anniepie | Mar 27, 2019
In reply to @phyllistamara "Have been on Azithromycin and Ethambutol since March 6th. So far so good just get tired..." + (show)
@phyllistamara

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

Jump to this post

@phyllistamara Good luck -- many of us are in there together with you.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 28, 2019
In reply to @boomerexpert "@america thanks for clarifying Rita. I also have RA, so have had an adjustable bed for..." + (show)
@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.

Jump to this post

@boomerexpert what company/brand is your bed? I wouldn't know the best place to look for one. Thnx!

REPLY
boomerexpert | @boomerexpert | Mar 28, 2019

@windwalker got both my adjustable beds from Rooms to Go...presume they've been their brand...both work quite well (gave my first one to my brother when I upgraded and it's still going strong after almost 15 years)

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 28, 2019
In reply to @boomerexpert "@windwalker got both my adjustable beds from Rooms to Go...presume they've been their brand...both work quite..." + (show)
@boomerexpert

@windwalker got both my adjustable beds from Rooms to Go...presume they've been their brand...both work quite well (gave my first one to my brother when I upgraded and it's still going strong after almost 15 years)

Jump to this post

@boomerexpert Thanks! I never would have guessed that Rooms-To-Go would carry adjustable beds! Who knew??

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 28, 2019

@tutti and @luvocean, Hi there. I haven't heard from you girls in awhile. Are you doing alright?

REPLY
View MoreView Less
Please sign in or register to post a reply.