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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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Dear All, I would like to add an excellent caution from Colleen:
When directing Connect members to ClinicalTrials.gov database, I recommend that we include at least an abbreviated form of the disclaimer. Such as: "Please note that NIH does not independently verify the scientific validity or relevance of each clinical trial listing. It is best to talk with a trusted healthcare professional before choosing to participate in a clinical study."
I totally agree with Colleen . . you will note in my original post " It just confirms my belief the importance of having a GOOD working relationship with a GOOD doctor who truly understand your medical situation who you could THOUOUGHLY discuss the pros and cons PRIOR to deciding to get into any medical trial. Remember .. knowledge is power!" Hugs! Katherine
Jen,
You can also get great tips from the Visiting Mayo Clinic discussions on Connect here: http://mayocl.in/2bGLTKj
Jill,
Would you mind adding your advice about telling the first doctor if you need to leave on a certain date?
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1 ReactionCB3 burgers and brews
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1 ReactionI clicked on the link but it looked like there were posts about a mayo clinic diet. Is that where you wanted me to put that tip about talking to the dr if you have to leave at a certain date?
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1 Reaction@jentaylor Jen, I am SO excited Colleen found this program for you .. she is the GREATEST!! I took a look at it and below are just a few of the things I found! "Mama" is saying.. you just get your fanny down there to the Dan Abrahamson Center and get started on this "Healthy Living program"! What a wonderful opportunity for you .. I didn't even know it existed!! AND you are there with enough time to get started on the program .. get a wellnesscoach/mentor to help you when you get home! What a deal! I am so excited for you! So happy Colleen found this for you .. YEAH Mayo Connect!
(It starts out saying: Anyone know about Mayo Clinic Diet Experience .. but it really is about the Healthy Living program) Sending you a Hug! Let me know how things go! Katherine
https://connect.mayoclinic.org/discussion/anyone-know-about-mayo-clinic-diet-experience/
**Today I went down to Dan Abrahamson Center and took a tour, met my wellness coach, and signed up for the research cohort. You have to give samples and fill out a long questionnaire
** Living Program by mayo endocrinologist for type 2 diabetes and weight management. The Healthy Living program is supposed to help people with their chronic conditions. Some people get referred by cardiology. Lots of us with chronic conditions can make lifestyle changes if somebody shows us how. You actually have to fill out a questionnaire before they let you participate. You have to tell the truth about heart conditions etc. They don't want to put someone on the stress test treadmill on first day or other exercises and have a cardiac event. So they are careful with people. I think the doctors actually look at your electronic medical record before you arrive. I don't know what they do if you're not mayo patient already. I think somebody was monitoring us when we did interval training on second day because we had to wear heart monitors with numbers on them.
** Thank you, Thank you, Thank you for sharing this! I did not know that such a program was available. I feel energized from simple reading your reply; Your energy is contagious!
@jillnc, Jill, that link is kind of deceptive .. It starts out saying: Anyone know about Mayo Clinic Diet Experience .. but it really is about the Healthy Living program. If you could leave the doctor info at @jentaylor .. that would be just GREAT! Thank you so much for jumping in to help others! Hugs to you! Katherine
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1 Reaction@jillnc and @jentaylor I corrected the link above. It now goes to the discussions about Visiting Mayo Clinic http://mayocl.in/2bGLTKj
Thanks
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1 ReactionCatherine have you already taken all the drugs and been through the protocol or are you still on the drugs and if you are for how long have you been on them and how long do you anticipate staying on them.? I'm just tired of major episode of pleurisy pain was unbelievable but it only lasted a day and a half. This morning I'm supposed to play golf but of course haven't had any episodes in a couple of months and I had a little blood in my cough this morning not sure if I should play or not weighing towards it's almost time to start taking the drugs but I so don't want to I'm so afraid of all of it I don't want to be that to be sickly and unable to function the way I normally do.
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1 ReactionHi, thanks for the tips! I can't find my paper that says what floor of the Gounda Building I go to for my first appointment with Dr. Aksamit.... I can call when they open but thought I'd ask in case any of you online would be able to respond soon...
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1 ReactionMy infectious disease with dr wilson was on 6th floor east desk. Not aure if your dr is there or not so probably best to call or stop by an info desk when you get in the building.
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