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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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Hi Jentaylor, I recently joined this group too and they are wonderful. Katherine is the best in terms of helpful information and support. Keep the faith. I struggle with NTM, bronchiectasis, SIBO, fructose and lactose intolerances. I have learned to take it one day at a time and focus as Katherine says on what I can control. Yoga, mindfulness exercises have proven helpful for me. Hugs. Rosie
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1 ReactionPamela...thanks Sooooo much for the info that the May NTM Washington DC Conference will be video taped and posted for Public viewing.
I was able to attend the National workshop on NTM in Denver from National Jewish Health in sept 2016 ....thanks to the MAC group telling me about it. It was awesome( see videos of it and same from 2015)
What I discovered as I rewatched the videos of the workshop that I had attended. It was if I was hearing it all for first time!!!
So for those of us unable to attend Conference in May...i am thinking we will get great benefit also from watching Videos 2 months later.TerriD
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1 ReactionColapyrus, I began submitting materials in September 2016. I had gone thru telephone nurse conference in August....y. she submitted situation to the mycobacterium speciality group, they then sent me a packet including sputum specimen material.
I had a call from Meaghan the scheduler in late October offering me appt with a dr....but not the one l wanted....for mid December...if I wanted Dr Huitt, I would have to wait til January 5...which is what I did. I did not consider
My case an emergency....not did a Dr refer me....perhaps that would have sped up the process. If you don't have a Dr preference...no doubt an appt would be sooner. They work as a team so you get the input from all the great minds thereTerri D
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1 Reaction@decosmo, Rosie, it is so true that putting our health as a priority sometimes means putting a piece of "who" we are on the back burner as you did when you made the choice to not teach and coach .. but in truth if we don't make our health #1 .. in time we will be left with NOTHING! Years ago when I was very young .. in my 20's I had a boss who said to me "When you have your health .. you have everything!". Frankly there was absolutely no way I was going to "get it" in my 20's! But I can hear his voice in my mind now .. AND I "get it"! You are making very wise choices .. I applaud you.
Very interesting your post "I have been reading certain strains actually create lactose" .. as you learn more about it .. post about it on our Forum for our pages .. I had not heard of it .. it will help others who are also lactose intolerant! If you find a probiotic that works for you .. be sure to post about it. It will help other people! Hugs to you! Katherine
@tessie, Hi Tessie, would you mind giving us a link to the particular probiotic your doctor prescribed? Under products there are quite a few .. did one particular one work well for you? Hugs! Katherine
http://www.biokplus.com/en_us/about-probiotics#why-bio-k
$190 plus tax, it came to $215
You will find several shown under products, i.e., 12.5. The pharmacist placed an order for me. Tessie
Hi Terri, I'm sorrry to hear about the severity of everything. That must be rough to handle & manage. I was on oxygen 24/7 for 3 years & miraculously I was able to wean off. We have no medically based answer for it. Regardless, I still have plenty on my plate but that has been one huge blessing over the years. Most people don't realize the severity of illnesses or understand what it might be like. It makes it really hard. Although, when I was wearing oxygen 24/7, (I still do at night) everybody would stare & it was apparent that something was wrong & I hated that! People probably still stare when I'm doing poorly or on oxygen for short periods. So I don't know if it's worse to have people know & maybe try to be understanding or at least considerate, or if everything looks normal on the outside so nobody knows...?!? I guess both ways just awful. I just wanted to respond & let you know that I'm & sending you good energy! ~Jen
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1 Reaction<br><br><br><br><br>Thank you Jen. <br><br>
Rosie - this is Pamela - my probiotic is dairy free - it is made by Jarrow and called Ultra Jarrow Dophilus - 50 billion per capsule. I take it mid day with applesauce just after lunch as I take my meds for MAC after dinner so I try to keep them separate. As to your cough, early on when I first began the meds for MAC my cough got much worse and I was coughing up stuff I could not believe - my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC - has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff - you may want to get a test for pseudemonis, just to rule it out. Pamela
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