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:
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
@boomerexpert, I hope that you do get to meet @deborahwolf. You will love her. She is a cool gal.
Liked by deborahwolf
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.
Have been on Azithromycin and Ethambutol since March 6th. So far so good just get tired often.
Liked by Terri Martin, Volunteer Mentor, anniepie
@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.
@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.
Liked by Terri Martin, Volunteer Mentor
@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
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.
Liked by Terri Martin, Volunteer Mentor
@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?