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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- 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!
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I felt so much stronger this weekend after being given antibiotics for a<br>cold I caught at school but am a little concerned. I had blood in my<br>sputum tonight. Just this once. I have a cscan scheduled for September<br>26 and will see my pulmonologist Oct. 7. Enjoying my job - teaching -<br>just trying not to do anything else and rest on weekends. I really need<br>to work to keep my house which adds stress. But I am inspired by how well<br>everyone sounds as they go through treatment. It is just wait and see for<br>me now.<br><br>
Hello Kathryn, I can only speak for myself .. but I fairly frequently have blood in my sputum .. when mentioning it to Dr. Aksamit he has not seemed to be too concerned by the quantities I have mentioned .. even when it has been blood clots perhaps 1/4" in diameter. But that is only me. I have made it a point to keep a "medical calendar" (getting a new annual Hallmark calendar at the beginning of each year) and making a note of date/time/incident of any new symptom or medical issue I have. That way I have a written record of when anything started .. how many times .. how much etc. So in your case I would just note the date/time/blood in your sputum .. and approximate quantity .. perhaps how much you have been coughing etc. That way if it develops into a pattern you have a record of it.
I assume you have had your flu shot so I guess about all you can do is what you are doing .. resting on week ends and trying to take the best care of yourself possible. Just be kind to yourself and try not to worry too much .. worry just adds to our stress .. plus we really can't do a darn thing about most of what we worry about! I know this is a really tough time for you .. just know that we are all here for you and sending you lots of positive energy and hugs! Katherine
Welcome! i'm glad your back and safe. I have not feeling well lately, its heavy pressure on my chest, hard time breading and my back is hurting. I think b/c I can't sleep. Also my acid reflux is out of control. I took everything OTC meds and ambient still not working. I'm so tired for not sleeping. Everything in my body is mess up. I got panic attack, shaking and nervous, don't know what to do. Phone my PCP Dr. check me out and gave me anxiety meds. told to come back 4 weeks. Sleep good for 2 nights now. Hopefully I can make up w/my sleep and get rest. Cila.
Cila - sorry to hear about everything. Have you seen an upper gastrointestinal specialist about your acid reflux? That's the type if Dr I see to maintain mine and have been very satisfied with him. Over the past 6 years I've seen him a handful of times to keep meds updated (have changed 3 times because of ins stop paying for them), and I've had 3 endscopy's done because I was complaining of swallowing isses first two times and 3rd was at request of another Dr because so much of my medical history has changed in last 6 months they wanted to make sure they weren't missing anything. He also suggested elevating the head if the bed 6 inches. So my husband cut 2x4 to 6 inches and put them under the headboard posts.. it helped my husband too. My suggestion, if you haven't already gone would be to go see an upper GI Dr for the reflux. Hope you find relief soon. Jill<br><br><br>
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1 ReactionThanks Katherine! You know I hadn't read that it was contagious ANYWHERE until her notes so I just had to check in with you all to see if I was missing something. If Dr. Aksamit has told you it's not that's good enough for me. No need to check with him again. I just have to disregard that bit of advice. It's late so I'll fill you in tomorrow on what she had for a plan for me. I feel better now. 🙂 Janet
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1 ReactionPaula, thanks. I hadn't read anything before about it being contagious under any circumstances so that really threw me. I'm going to go with what I've heard/read/am hearing now. Which is that it isn't contagious - period. Janet
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1 Reaction@katemn Thanks for your good thoughts and suggestions!
Take care - I too have panic attacks and they are very real. I have been on medication for five years. These can be triggered by caffeine and I always watch a short comedy before going to bed. Also do nothing but relaxation after work. I know this is hard, but I think it can also be temporary. It comes and goes - but I would try to get a low dosage of whatever your doctor suggests. Of course, no alcohol with that.
Thank you for the good suggestion / record keeping. I did see on one site that this intermittent blood in my sputum is not unusual. I have also had at the same time one case of night sweats which I never have had in my life. So the fact that they occurred together is noteworthy. So glad to hear from you.
Thanks Jill, I haven't seen the GI Dr. I have been taking Prevacid for a long time time now and my other Dr. just prescribe me Zantac. I already elevated my bed 5 inches. I'm having shortness of breath for almost 2 weeks now. My Pulmonary Dr. said is from acid reflux but I think is from my lungs. I'm schedule to have CT scan November. Don't really know what to do. Cila.