(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.
Hi @kaystrand, You’ll notice that I removed your private phone number and email address. For your safety, we recommend using the private message function rather that publicly sharing your personal contact information. This will spare your getting unwanted spam etc.
Here’s how to private message another Connect member.
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.
Happy connecting 🙂
I thought I was sending a private message, thanks for fixing!
Kay, when you respond to a message by email, it is posted to the forum and to all members. This is the strength of community – sharing knowledge of many. You can also click view to see all the messages.
Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:
Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine
Hello Kay S, so glad you are finding it helpful! I also found ginger capsules found online or many stores helpful. I also used ginger capsules before taking grandkids to the local amusement park with all it’s crazy rides!
In terms of notes .. I have Word program on my computer and have saved all my notes there under “Health-Lungs-Antibiotic Notes” .. it has really helped as I have wanted to go back for reference .. or to cut and paste to help others! Sending you a Big Hug Kay! Katherine
I also am keeping all of these messages about how and when to take the meds. It will be helpful for when the doc starts me on my regimin, which should be soon.
Does anyone else have difficulty taking the pills due to their size?
COLLENN, I AM CONECTING YOU JUST TO UPDATE MY SONS PROBLEM HE WENT WITH HIA
PRIMARY DR. IN PORTLAND OREGON AND HE AND AN UROLOGIST DECIDED FOR HIM TO
WAIT 4 WEEKS TO HAVE HIS PSA. WE ARE VERY WORRIED
Hi Catherine, I got my lab work last week my vitamin A vitamin B1 are little bit low. The vitamin D is very low and my primary Dr. put me on vitamin D3 10000 IU. My stomach is cramping all the time. Did you or anyone had this problem? Still having problem sleeping. I’m trying to organized my meds when to take them also the probiotic. It says take it in between meals or empty stomach. I will try to do them early b/c I have to take my acid reflux med on empty stomach. Thanks for all your help and I’m so grateful on this forum.
Hello Cila, so sorry this is happening to you .. what a rip! Yes, I do take extra vitamins. I love the phrase “Americans have the most expensive urine in the world!” My attitude is that if my body does not need the additional supplements .. then my body will excrete them in my urine .. BUT I am careful NOT to take more than the recommended for fat soluble like Vitamin A and E etc.
I do take extra Vitamin D3 and A Super B100. For the Vitamin A I would check with your Doctor since it is stored in the fat. I am a great one for googling .. I just did on the cramping .. it came up as: Vitamin D overdose or deficiency might cause stomach cramps.
Why don’t you IMMEDIATELY ask your doctor to lower the dose?! I take 3,000 VD3 without any issues whatsoever .. it may take you a bit longer to get your VD3 to where you need to .. BUT with side effects! Call your Doctor! Frankly sometimes I think they don’t THINK!! We need to be our best advocates .. but don’t tell him/her I told you that! .. And don’t forget with acid reflux to raise the head of your bed 4-5″ .. I’ve given a resource elsewhere on the Forum .. and not to eat prior to bedtime. Sending you a Hug! Katherine