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
@kaystrand I have read Kathryn has Pseud
-
Like -
Helpful -
Hug
1 Reaction@katemn, Hope you are feeling much better soon, you have done so much to help all of us, wish we could help you!
-
Like -
Helpful -
Hug
1 Reactionnow read Kathryn is clear of bugs, yay!
-
Like -
Helpful -
Hug
1 Reaction@hopeful33250, Theresa thank you SO much for jumping in on this .. our group just didn't have a clue what this meant .. again .. many thanks! Katherine
-
Like -
Helpful -
Hug
1 Reaction128128terry....Is your name Terry, so I can just say that? 🙂 What order did you start the antibiotics, and did you start them each one week apart? Did your doctor or nurse tell you how long it might be if you are going to have "side effects" to the medicine? Thank you!!! My name is Amy, by the way. 🙂
-
Like -
Helpful -
Hug
1 ReactionHi Amy. I haven't commented yet, but I'm on the 3 meds for MAC. Hoping to be off in August if all goes well. My ID dr said I should be on meds for 12 months from a clear culture. I started my meds all at once. I was on a low dose of predisone for something else and as I was weened off that I developed a itchy rash. Took me off 2 of the three and introduced 1 at a time and sure enougg ethambutol was the culprit. I was desentized to the drug and am now back on it. First day I took the 3 meds I felt nausea because I took a couple together. Dr recommended spreading them out so next day I did and all was better. I also took a probiotic to help with any loose stools which I still had a little bit, but dr told me to give it a couple weeks for body to adjust. May will be 1 yr I've been on meds. Also because of ethambutol I went mo thly to an opthmologist to have eyes examined. So far ao good and he's not seeing me again till august. He said normally he doesn't see issues, but has seen 1 case of toxicity before from the ethambutol. My ID drs were the ones suggest I get monthly eye checks. You will do fine and if not there are always different options. You always have options (might not like them) and EVERYTHING is ALWAYS temporary. Good luck.
-
Like -
Helpful -
Hug
1 ReactionI remember when i start my meds I got very sick, cramping on my stomach, shortness of breath, everything that can go wrong. I almost stop taking them but tried different time taking them and my body got used to it now. I'm on meds now for 9 months and sometimes I still fell that side effect once in a while but not like the first time I started. It will get better and I will pray for your Mom and everyone in this forum. God Bless you all ! We need to look at the bright side and keep our body healthy. Hugs to all of you! Cila
-
Like -
Helpful -
Hug
1 ReactionHi Katherine, I'm sending my love and prayer for you to get better soon.
-
Like -
Helpful -
Hug
1 ReactionHi, Amy and all, I started my meds mid-December, taking Azithromycin, Ethambutol and Rifampin every day. I started each about 10 days apart and take them at different times of the day. I had to shift them around a couple of times but finally found a good schedule that works for me: Rifampin as soon as I wake up 6;30-7 (on empty stomach) along with a probiotic, then Azithromycin at 9:00 a.m. (I was taking an hour earlier but was causing acid reflux), then Ethambutol at noon. I now take my vitamins with dinner since they have to be 4 hours away from my other meds. I have my eyes checked every couple of months and have an app on my phone, on the advice of my opthamalogist, so I can check my vision weekly using the app. I also have my hearing checked every few months. The Azithromycin can effect hearing and the Ethambutol can effect your eye sight so it's important to monitor them while on the meds. I am one of the "lucky" ones who didn't have many bad side effects. The first few days on each of the meds were a little sketchy with cramping and just generally not feeling well, but my body adjusted quickly. The Rifampin is the worst for me so I have some mornings when I just want to lay down for a few minutes and then will feel better. I also found myself about 6 weeks into the Rifampin, feeling a generally apathy about life and realized it was a side effect of the drug so had a stern talking with myself and pulled myself out of it. Just hang in there. I pray that you don't have any serious side effects. Just know this group is here for you. I'm not sure where I would have been without them! Blessings, Linda
-
Like -
Helpful -
Hug
1 Reaction@pamelasc1, Pam, thank you for your lovely thoughts! Quite honestly I have great hope .. even today I feel better! YEAH!
Pam, I have some concerns for you .. here is why. I wish your Pulmonologist had given you more information and follow up check ups. I do NOT want to concern you .. but as you know I am BIG on being your own best advocate .. AND due diligence. I would suggest you read this article that I found AFTER I was diagnosed. Unfortunately .. WE are the ones who must care about the one body we are given in this lifetime .. NOT the doctors! After you have read the article I would suggest you get to a GOOD Infectious disease doctor .. request a sputum culture be made for Pseudomonas Aeruginosa .. explain your history and ask for follow ups.
https://bronchiectasisnewstoday.com/news-posts/2017/01/31/study-identifies-key-variables-survival-bronchiectasis-patients/
Here is what Dr. Aksamit told me:
Dr. Aksamit said that Pseudomonas Aeruginosa can be treated but like MAC cannot be cured. In my case that the Pseudomonas Aeruginosa bacteria had probably been in my lungs long before it showed up on my 11/9/16 regular sputum culture report. But just like MAC shows up on a culture report from "MAC FEW" to "MANY" to "COLONIES" (depends on where in the lungs that particular sputum culture came from!) the Pseudomonas Aeruginosa bacteria is the same. The Pseudomonas Aeruginosa can lay low until it shows up enough in a culture to be considered "PROMINENT".
Only and at that time (considered "PROMINENT") does it need to be treated. He did not say this but it can be assumed: You do not use high power antibiotics UNTIL necessary in this world of super bugs .. especially with people with immune systems like mine who will probably NEED them in the future. Essentially until I got sick .. you don't treat.
My follow up will now be in 3 months I go back for another sputum test to make sure the Pseudomonas Aeruginosa "stabilized", another Xray, a pulmonary test .. the usual. Then we will see what the next step is. I am obviously hoping for the best .. that my Pseudomonas Aeruginosa can be kept stabilized like my MAC has been since May 2014! BUT you can bet that I will continue to do my "due diligence" and will continue with sputum cultures and check ups!
Pam, hope this does not frighten you .. but I wanted to be honest with you ... until I was given the diagnosis and did my own due diligence did I really understand it was nothing to mess around with. Sending you hugs! Katherine