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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,
the answer to the hot water heater is on the confernce (D.C.) info. That
conference is not a video tape by the way. It is the slides that were presented.
I know that the norm was 120, but the MAC is mutating to withstand that
temperature. They are now recommending a higher temp. preferably 130-140. You
would have to be extremely careful not to burn yourself. I would think at those
temps, you could run your equipment through the dishwasher and it would
sterilize it.
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1 Reaction@boomerexpert,
just re-read my notes from the conference. You are right, they recommend
110-120. That the MAC has been found to be heat resistant at 90degrees.
@katemn,
Boomer is right. Recommended temp for hot water heater is between 110 and 120.
They have found heat resistant strains at 90 Degrees. (I just re-read my notes
from the conference.)
@boomerexpert,
I have been signed up for awhile now. It tends to have a lot of gloom and doom
articles. I don't really read it anymore for that purpose. I will check out the
transplant article since I may be looking a one in the future. Thank you.
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1 ReactionHas anyone ever heard of my mycobacterium ventiflavum. The doctors at U of M Ann Arbor have tested my husband they find no disease. The only thing they found was a slow growing bacteria mycobacterium ventiflavum. There is no treatment he is just on oxygen and Cellcept .6liters resting 8 walking 10 excercising. They gave him the TB meds but he became very ill. I wonder if a second opinion at the Mayo Clinic would help.
@milagro103, do you have a first name .. more personal. I googled "mycobacterium ventiflavum" .. what I came up with was "Mycobacterium lentiflavum" are you sure you have the correct spelling? If I was sitting in your shoes AND my spelling is correct .. I would do some reading on the below google search .. EDUCATE YOURSELF .. so you can become your husband's advocate! My husband has many health issues .. so I know all about the need to be a spousal health advocate! Get to researching .. then ABSOLUTELY if I was sitting in your shoes I would be looking for a second opinion. AFTER you have researched the below .. AND done some reading of the back pages of our back pages of this Main Forum .. why? BECAUSE ALL the mycobacterium strains share very similar issues .. journeys .. and you will learn a LOT! After you have done this .. please feel free to come back with any questions .. we have ALL been on this same journey .. we will walk this journey with you! Sending you a hug .. I know it is a tough time! Katherine
https://www.google.com/search?q=mycobacterium+ventiflavum&oq=mycobacterium+ventiflavum&aqs=chrome..69i57j0l5.886j0j4&sourceid=chrome&ie=UTF-8
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1 ReactionMilagro103....for sure get a second opinion....mayos or NJH....tdrell
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2 Reactions@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!
You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
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Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.
@windwalker Aw, you are sweet. Thanks for saying that.
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1 ReactionHas anyone ever experienced this medicine or the disease as a contributing factor to Eustachian tube dysfunction? I have that in my right ear so just wondered. Never had a problem until a few months ago. Linda M