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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Katemn....bravo to your response to Fran!!!
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1 ReactionTerri, you know me .. I can only speak from my heart. Can't fake it! Hugs to you! Katherine
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1 ReactionHello @fransky,
The respiratory specialist you saw today SUSPECTS you have NTM or MAC, and recommended no bronchoscopy and treatment for MAC. It seems you don’t have a definitive diagnosis. Did he tell you on what he based this probable diagnosis? What did he use to get this conclusion? If it’s not concrete evidence, I would ask for more testing to be sure. Could be several other things besides NTM.
For those actually diagnosed with NTM or MAC and not having symptoms – like you – not being started on treatment is pretty common. Did you know that many people contract NTM or MAC and get over it without treatment? That many people get it, don’t even know we have it, our bodies adjust and we get over it. So we don’t all need treatment (thankfully!) And yes, there is slow growing NTM, fast growing NTM as well as many types.
With a CONCRETE DIAGNOSIS of NTM or MAC, I can understand why your respiratory specialist would take a ‘wait and see’ approach, with your having no symptoms. Offhand, I don’t know what other health problems you have or the medical care in Canada. But I would ask your respiratory specialist for a ‘game plan’ . . . will you be watched for symptoms? at what point would treatment be warranted? will you get a CT scan again in a year to compare the growth or shrinkage of NTM, etc etc. Just my 2 cents worth!
Take care, and let us know what follow-up you get. Seems you need more discussion with your respiratory specialist or a 2nd opinion.
Paula
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1 ReactionThanks so much for your thoughtful response, Katherine. It means a lot to me. I have been a little muddled this weekend, trying to think things through. I do have a lung functioning test coming up, and a follow up with my infectious disease specialist, so he may have a different opinion than the respiratory specialist. I will see what transpires from that. but in the meantime, am focusing on trying to stay as healthy as possible. I appreciate being part of this site and the connections made. I feel very supported.
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2 ReactionsHello Fran, so glad you are seeing you ID specialist .. make up a list of questions based on your thoughts and concerns and then do your due diligence. Make copious notes when you see him .. tell him exactly what the other doctor told you .. AND why that concerned you. Tell him what/how you would like to proceed FOR YOUR peace of mind .. see if the two of you are on the "same page" and he is willing to do what it takes to make sure you are at peace with your situation.
Please let us know how the appointment goes .. this may be your best shot at getting a good answer .. so do your level best to be well prepared. Frankly I have found on our Forum that many of our members have educated themselves about our disease to a greater degree than some of the doctors they have visited! So read up and know what tests and procedures would give you peace of mind .. and push for what you feel you need ..IF you feel you need them! You absolutely do NOT want unwarranted tests or procedures .. just the right and necessary ones. You are SO right about focusing on staying as healthy as possible until your appointment .. eat well .. exercise as much as you are able .. be kind to yourself .. and seek serenity! Sending you a hug! Katherine
I have had lots of pain in my leg after hip replacement,today I tried 450 mg of magnesium citrate and I can feel the benifits already.
I will continue and update in a week to see if it continues.
Hi @popolopo - I believe you meant to post this message in the ongoing discussion called "Knee and muscle pain; also a 14 year old hip replacement...related?" Click this link to get there http://mayocl.in/2d6C9Lv
I just received this .. if anyone interested .. just contact:
From: NTM Info & Research
Sent: Tuesday, October 11, 2016 9:05 AM
To: katemn
Subject: Oregon-Area Patients: Paid Study Recruiting
If you live in or near the Portland, Oregon area, you are invited to participate in a paid
90-minute or three-hour study
NTMir Logo
Invitation to Participate in a Paid 90-Minute Study or 3-Hour Study
Who can participate? People who have been diagnosed with bronchiectasis or COPD.
What's the purpose of the study? We'd like to introduce you to a new inhaler and collect your opinions about the inhaler and the instructions.
Important! - You will be asked to inhale a placebo during the interview. There will be no active medicine present.
What will I do? You will be asked to read the instructions and follow them as you handle the inhaler.
Where and when will the study occur? The study will occur at: The Oregon Clinic (accessible by car or public transit) 1111 NE 99th Ave Portland, OR 97220
One-on-one sessions with a study moderator will be scheduled Tuesday through Friday October 18th through the 21st at your convenience. You have the option of choosing to participate in the 90-Minute Study or the 3-Hour Study.
Interested? If you'd like more information: Please call Research Collective at 480-247-7182 to see if this study is right for you. Please mention the 'Inhaler Study'.
If you complete the study, you will receive compensation!
Terri, I wanted to UPDATE on our 9/22 discussion of TwinLab MAGNESIUM CAPS 400mg to help with sleep issues. With taking 2 per night I was really having VERY loose stools. I started taking just ONE per night .. found it REALLY helped my sleep in conjunction with 1/2 over the counter Unisom (generic). I am now getting to sleep .. and staying asleep .. without the problem of REALLY loose stools .. without the use of daily Fibercon. So just ONE helps!!
Just wanted to update this for anyone with sleep disturbance issues who wanted to try the TwinLab MAGNESIUM CAPS 400mg .. that I had read about on a website of others with sleep disturbance issues .. gave it a try and sure enough it helped me! For whatever reason .. sleep disturbance is the primary side effect from my antibiotic treatment that has not gone away .. OR it is just the aging process! Hugs to all! Katherine
I am a 64 year old man who was diagnosed with Mac 20 months ago. I have now developed Bronchiectasis. I am so relieved to read all of your stories. It makes me feel my low energy, sore ribs, constant coughing and troubled sleep are not in vain. That it’s part of the disease. I am thin 145 pounds and was worried when I lost 9 pounds. But am getting appetite back and gained 3 pounds.
I’m in the 4th month of taking the Big 3 medicines and they seem to be helping some. It just gets discouraging when aspirin and pennicilan work fast and these drugs take so long. And my heart goes out to those of you who have been on meds for years.
Thanks for listening.
@david1952
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