Connect
(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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Hi,<br>I did not read your previous report about changing doctors. I know many feel that they have to go to someone associated with big centers. Personally, I am very comfortable with the pulmonologist I see. Everyone takes the same medicines and abide by the same guidelines.<br>As long as I continue on the regimens of medicines, improve and have the excepted follow up with imaging and sputum cultures, I see no reason to go to the expense and time to travel to a major clinic. If those things are not met, I will seek help elsewhere. At first I had to get another opinion because the doctor I was seeing did not start MAC meds. I got an opinion on the same tests he had done and was sent back to see another for treatment. Saw the new doc every month and had chest x-rays each time. 1st month on meds big improvement. Was on the meds 3 months, sputum came back negative. Took the medicines next 12 months with 3 mo visits and x-ray improvement each time. I have been off meds for 4 mos. Had visit and x-ray @1 mo post and x-ray and visit @4 mo post. Have a sputum culturing now. Had blood drawn a few times. What more could anyone have been done?<br><br>Now if, after reading from others on this forum, he had not done everything, I would have probably sought another doctor.<br><br>It is a difficult disease and hard to cure, thus the time taking medicines. I tried to not let it consume me and tried to do the best I could and not keep it on my mind constantly, but still do everything right. <br> The reason I have written this is I feel like there might be some out there that for one reason or another can't go to the major centers and I don't want them to think they may not be getting adequate care.<br><br>
-
Like -
Helpful -
Hug
2 ReactionsAnyone have a name for an ID doctor on Long Island, NY who specializes in MAC or has seen a lot of patients with MAC?Terry
-
Like -
Helpful -
Hug
1 ReactionI use MacBook. Exactly as you describe for Windows. I have been seeing a lot about taking Ethambutol all at once vs. divided doses. I am no expert but, I looked up the biological half life of Ethambutol and found it was 4-5 hours. Which means that in 4 hours the body will have 1/2 the original dose and in another 4 hours that original dose would have been reduced by another 1/2 and so on. So calculations could be made to try to determine the body load in 24 hours of each method. My doctor told me I could take all the big 3 at one time. That helped me not to have to keep my mind on medications all the time. A good routine for me.
-
Like -
Helpful -
Hug
2 Reactions<br><br><br><br><br>How do I enter a diagnosis and ask others for comments?<br> <br>Del C Revels<br>Tampa Fl
-
Like -
Helpful -
Hug
1 ReactionPlease all thank @Paula_MAC2007 for her GREAT idea .. NOW posted at the beginning of each new page! I did not know how to do it .. add it .. but the "higher ups" did upon my request . . and we are now good to go!
Frankly when I wrote that very first post in 2011 .. I had no way of knowing what a fantastic . . wonderfully supportive community our group would become! Wish I had thought of this idea to share sooner .. it will be SO helpful for new people .. and for EACH of us going forward! Thank you Paula! Hugs! Katherine
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!
KateMN
-
Like -
Helpful -
Hug
1 ReactionNebulized antibiotics... they do exist so why the lack of ability to do this w/MAC meds?! Also he doesn't mention another source for its onset- RA - which is my cause...
-
Like -
Helpful -
Hug
1 ReactionI'm right there with you. I am 72 years young (sort of) and grateful for everything. Trying to be like the energizer bunny -- sometimes I make it, sometimes I don't. Having a tough time with severe nervousness, tachycardia, severe insomnia, and high blood pressure. My local ID Dr says that she never heard of these symptoms!!! My local primary said to go off all antibiotic meds and go back one by one to see which is the culprit as the local ID put me on all 3 at once. He even suggested that it all could be from nerves. A real throw back to the 1950s when all was blamed on nerves. Don't you just love it! Can you imagine that horrific advice from both!! Will be changing doctors for certain. This support group has toughened me up. I settled for kindness and now I won't settle until I find competence. Scary that almost all of us know more than the physicians who treat patients like us. Scary and frightening! I am looking forward to the road being a less less bumpy.
-
Like -
Helpful -
Hug
1 Reaction@laneyk, Elaine, what a GREAT response!! Thank you for taking the time to write it! You are SO absolutely correct. If any new person reads the pages of our Forum .. they will have done their "due diligence" . will truly have educated themselves on their MAC disease .. AND then I feel will be FULLY capable of advocating for themselves in their health care. That INCLUDES being able to judge whether their current Pulmonologist is knowledgeable enough to properly treat them .. THEN if they feel they do not .. smart enough .. knowledgeable enough to seek out a 2nd opinion .. UNTIL you DO find a good MAC doctor.
As you said .. this does NOT require the expense of travel to a major MAC center .. JUST educating yourself to the point that you can properly judge the care you are going/are getting. A LOT of that education you can find right here luckily. Wish it had been available to me when I was first diagnosed in 2007 .. would have saved me a lot of heart ache. So Again, Elaine .. really good post .. it will help people be reassured in their decision to seek local GOOD MAC doctor if available! Good job! Hugs to you! Katherine
@128128terry11t, Terry, I just LOVE your " This support group has toughened me up. I settled for kindness and now I won't settle until I find competence.' You go girl!
Terry, truthfully what delights me even more is the change from 'Desperate for help" .. to this new tough cookie!! I just love it!! This group can feel SO proud of itself to know that we can help a newly diagnosed MAC traveler on our shared journey in this manner! That we ALL remember how scary it was in the beginning .. AND continue to reach out to new people because of this. And Terry, I have every confidence that as you are able in the future .. you TOO will 'play it forward' .. help others as you have been helped. This is what our community is all about! I am so proud of you! Hugs! Katherine
Boomer, no ONE video can have all the answers .. just one more piece of the puzzle to help us along on our journey ... perhaps a nugget of information that someone on our Forum was unaware of. . that may help them Katherine