(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 ..
– 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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Paula, thanks for that information. I just went back and checked. The last time my VD was checked was May 2016 .. it was a “Value 77.9” with a Ref Range of “30.0-80.0 ng/ml” .. so thanks to you I double checked to see where I actually was! I now will watch it and see that I for sure stay in the normal range. Thanks for the heads up! I do take 3,000 IU per day. Katherine
Thanks Katherine, I will do that and I will check it myself. I will try to eat some fruits and veg. to increase my vitamin A & B instead of pills. when I see my Dr. in 3 months do they do CT scan? How do they find out if the meds. are working? Thanks for all the advised. Cola
Cila, in terms of the Vitamins .. you need to request that your doctor request it when you have your blood work done. In terms of your antibiotics it is really your pulmonologist putting a puzzle together in my opinion based on my experience. It is looking at your previous CT scan .. your current one .. looking for any changes .. sputum samples changes .. AND asking questions on how you feel. That is why it is important to have a doctor who is knowledgeable about MAC/MAI .. they need to put all those pieces together to come up with a diagnosis of just where you are at the current time. At least that has been my experience. By the way .. I just have my local Internist check my Vitamin levels .. not that difficult .. can be done right along with other blood work if requested. Good Luck! Katherine
Thanks Paula, for the info. you have been taking vitamin D for a while? Sometimes I feel bad for my stomach for all the pills I take b/c I usually don’t take that many pills. My primary Dr. didn’t tell me how long I need to take them. I appreciate your help.
@cila, I’ve been taking prescription Vitamin D for about 4-5 years, as well as the 5,000 IUs the other 6 days/week. They are very small capsules & quite easy to swallow. I live in a cold winter climate – not much sun exposure in winter. My lifestyle was that I worked 50-60 hrs/week at a computer. So I was not getting much sun, a great source of Vitamin D. However, I’ve since learned the sun is not necessarily a predictor of Vitamin D level – and low Vitamin D is thought to be related to a variety of ailments/diseases.
I, too, didn’t take many pills at all before being diagnosed — a multiple vitamin and daily calcium and that’s it.
I think my Vitamin D level was
Hi all , I have just been diagnosed with borderline Asthma(as I only have a small cavity and some nodules she doesnt think imy MAI should cause shortness of breath) and put on Seretide inhaler, the seretide instructions say not to take if you have TB or serious infection, as NTM is similar to TB and an infection, I am concerned, does anybody else on here have asthma and on an inhaler? Think I will call the GlaxoSmithKline and check what they think.
Hi Kate and all, my specialist said she was at a MAC confrence in USA in May 2016 and they were saying that Rifampin was causing to many other problems so now they advise taking with food. I cannot find this information anywhere else. I would like to now if any one else has had the same information from their specialist. I am hesitant to take with food with all the other information in Rifampin but want to trust my specialist.
I have taken it with food since I started taking it in May. My pharmacist said it was fine and the Dr mentioned taking with food, so I knew no different. When people still started talking in here that it should not be taken with food I did some googling and found 1 site said it’s fine to take with food, it may reduce effectiveness by 30%.
Thanks Jill, it is so hard to know whats best when everything is changing all the time. Maby they should give us a bit higher dose to compensate and take it with food to help our stomach. This is such an evolving situating, makes it very difficult to know what to do for the best. Think I will take without food if stomach is all good but when stomach is already burning will take it with food.Take care
How have you been feeling since starting meds? I started 9 days ago. I’m much better than I was when I got to full dose this past weekend.
I just feel a little shaky, loss of appetite and don’t sleep as well as normal. Did you ever get to feeling pretty normal?