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
Hi Deby,
How great you recovered. I needed to hear.. Im on a second round of antibiotics after a year of gbeing off them. Only this time the dosage is daily at 1650mg daily. I feel so weak! Did you feel weakened at all. I think the ethambutol makes me a bit less coordinated physically and decreases concentration. Im working part time and keeping that way for a while. Are you willing to talk by phone? I dont want to be in anyway intrusive. Only Its so good to hear positive news! Thanks, Debminuet
Liked by Terri Martin, Volunteer Mentor
@margiebanks There is no magnifying glass icon on the mobile phone version, only a box at the top of this feed that says 'Search'. It is the same function though.
Liked by Colleen Young, Connect Director
@colleenyoung I am still 'old school'. I also keep a three ring binder to help me keep track of what is going on with everyone. I now have about 150 or more members that I have interacted with. The binder helps me not to repeat a question like "what meds are you on?" when I haven't texted with that person in awhile.
Liked by Colleen Young, Connect Director, ling123
@prelle1 Hi there. Just want to remind you to put the @name of the petson you are replying to like I did here to get this directly to you. It looks like you were asking a question about a doctor reference from a member in an older post. Sometimes those members are no longer active and will not see your post. Let me know if I can be of any help in locating a good specialist in your area. My first choice is always getting to the nearest Mayo Clinic to your state. (In your case, the one in Jacksonville) You can also refer to the http://www.ntminfo.org site for a vetted specialist in treating mac by state. Some people are very ill and do not have the energy to do investigative searching for help. I understand that, and do not mind helping.
@spencersok here is a post to help with your question about amakacin. Posted by heathert @heathert, Fri, Nov 9, 2018 8:18pm
@jasmine321 Yes I was in the trial for Amakacin inhaled and I think it is called Arikayce. I think it did a good job while I was on it, I had a clear sputums finally.So glad it is approved. It was easy to take.
Hi annipie, I am so sorry to hear you hear you have Sjogrens. It’s so difficult to eat and swallow and the dryness all over my body is insane. The most difficult thing for me is eating without saliva. And with NTM it’s become a daily struggle. I was sick for the last six weeks coughing and sore throat… it was so hard to even drink water. But today I feel a bit normal and like my self again and for that I am overjoyed. I still have a little soreness in my throat but I’m not going to complain. I wish all the best. Please keep in touch Rita.
@america Glad you're feeling better now Rita. Was the coughing and sore throat a flare up of the NTM? I get a very sore throat when I have had the NTM exacerbations. What meds are you taking for MAC?
Yes Sjogrens is a hassle. Do you use the mouth gel — In Australia it's called Oral Care or Oral Balance gel. I do on and off. But yes its very hard when you're sick with a bad sore throat.
But you're not alone. Hugs, Annie
@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie
I have tinnitus since I have been on the drugs since July. Have you had your hearing checked? I didn’t know to get a baseline and when I went after three months I had a little hearing loss in the upper range. Since I hadn’t had a baseline I don’t know if the drugs caused the loss. I’m going to go in soon for another hearing test. To tell you the truth, I’ve just gotten used to the tinnitus.
@windwalker hey Terri, I've tried the "Search" in the box at the top of the feed months ago (and again every time this query pops up). I do have a smart phone, perhaps this user is not up to speed with the capabilities of her phone! haha Thanks tho! I'm sure more will be revealed! Margie
Liked by Terri Martin, Volunteer Mentor
@colleenyoung
Such an important consideration, @margiebanks. Yes, we are currently embarking on a mobile first redesign and are looking for volunteers to provide feedback.
Anyone interested in taking part in a 50-minute telephone interview next week, please send me a private message (PM). I'm PMing a few of you. We are looking for participation from long-time members to new members and lapsed members.
Liked by Terri Martin, Volunteer Mentor, Margie E