(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

That worked, but will this extra step be necessary herein?

Good question, @boomerexpert
No, the extra step is only necessary once. Part of the issue was that people were no longer signed in. If you select the tick box "Keep me signed in" when signing in, you will no longer need to do this extra step. If you use a different computer or device, you will need to sign in again.

PS: If you are using a public or shared computer, like at a public library, then we advise that you do not tick the "keep me signed in" box.

I've always done that...when we close down our se (or at least for me) I must sign in when I reopen even when "keep me signed in" was chosen when I closed it down. FYI

Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen

Hi, Jen,
As you read through the posts, you will find that taking the Big 3 meds affects each person differently. I began my meds in December last year and am fortunate not to have had a horrible experience. The first few days on the Azythromiacin and then when I began the Rifampin were a little difficult. The Ethambutol didn't bother me at all. It's good that you're spacing them to start so that if you do have any bad side effects, you will know which medicine is causing it. I made sure that I was going to be home with a clear calendar on the days that I began the next meds just in case so you might want to wait for the weekend to begin the next med. There are suggestions for how to take the meds (spacing throughout the day) that came up recently so you probably saw Katherine's post from her "file cabinet." Know we are here for you! It is scary for sure, but we can't live in fear so try to keep a positive outlook. There is no question in my mind that there is a mind/body/spirit connection, so if you are in a positive mindset, the rest is more likely to follow! We are here for you! Linda

Hi Jen,
I was diagnosed with MAC and Bronchiectasis a little over a year ago (at 58) and did the year of the "big three" antibiotics. I made it through them with no real problem but learned a lot from reading these pages and especially from our guiding angel, Katherine, who is out sick at the moment. It's so different for everyone. I felt very fortunate that I made it through. Mine was found by accident through a breast MRI if you can believe it. A very good radiologist said he spotted something in my lungs and even said he thought it looked like
bronchiectasis. Long story short, after a CAT scan and a pulmonologist looking at me and saying I bet you have MAC and HE was right also! I was like a deer in headlights. It was very frightening and depressing at the same time but I didn't let it get me down for long because I have my own business and had to get through it. I have never had any mucus so I had to have a bronchoscopy to find the MAC and now in July I will have another CAT scan to see if my lungs look any better after the year of drugs. I split my drugs up at three different times during the day. I took the Rifampin on an empty stomach but the other two I didn't worry about as much on an empty stomach. Some people take the drugs all at once but I was too scared to do that so I put a few hours in between each one of mine. I also drank a lot of water and I took two probiotics a day and ate yogurt everyday along with other food that had probiotics...kefir, sauerkraut, etc. Hope this helps. Let me know if you have any other questions. Good luck to you. This forum is the best. Nan

Jen,
I forgot to say in the post above this one that I just wrote that I was also just diagnosed with a sliding hernia and have terrible GERD. There's so many similarities in all of us. I'm thin,59, live in SC, have slight scoliosis....textbook for Lady Windermere's syndrome as they call it. Nan

Thank you so much for your reply. It is comforting to know others have gone through the same process. I hope your lungs are clear on your CAT scan in July!

@jennifernicole....Hi Jennifer! My name is Amy. I am 46 with an 8 year old and ten year old. I was diagnosed with Bronchiectasis and MAI in December 2015. At the time my MAI was not active so they did not start the drugs on me. This past December of 2016, the MAI was active and the B. was getting worse. I also have no symptoms. (I knew I had something wrong 4 years ago when I threw up blood.) I have been on all 3 drugs for almost 2 months. I have had no side effects, except for a little insomnia and occasional tiredness. (The tiredness is one where you could push through if you have too, but if you have nothing else going on a short nap feels great. Just for reference I probably have taken a short nap about 5-7 times since being on the drugs.) I am so thankful that so far I am showing no reactions to the drugs...I, of course, still need to get my kidney, liver, and eyes checked monthly for the next 5 months.

If anyone sees anything crazy about my schedule below please let me know: 🙂

5:30am= 2 probiotics (You have to take antibiotics 2 hours apart from probiotics. I didn't realize this fact for the first month and a half, so I recently just revised my schedule as written below.)
6:00-6:30am= eat breakfast
8:30am= Rifampin (you have to take antibiotics 2 hours after eating)
9:30am= Clarithromycin and Ethambutol (I may end up taking all 3 antibiotics at 8:30. Others have taken all at same time.)
10:30am= can eat again (you can eat one hour after the antibiotics)
3:00pm= daily vitamin and D3 supplement (many of us have low Vit. D...vitamins have to be taken I believe 4 hours apart from the antibiotics).
8:15pm or so= 2 more probiotics (the number of probiotics you take seems like a "guess", but whatever works for you.)

I have never had an upset stomach from drugs, or a period of diarrhea, or thrush etc. I have just recently starting going gluten and dairy free to help my gut heal, and any inflammation that I have going on. I was just diagnosed with a slight bit of Barrett's esophagus...I had no idea that I was silent refluxing, but almost all of us have acid reflux to some extent.

If I was you, I would buy the book Beating Bronchiectasis on Amazon. The man that wrote the book just released last November. He had severe asthma his whole life and developed Bronchiectasis and he was so bad that he thought he was on his death bed. His story is amazing and uplifting bringing hope to those of us who are able to be regimented enough as he was. He gives his daily regimen and said his CT was perfectly clear after doing his regimen for 8 months. I believe we have hope!! I am going to try to beat this too!

Please feel free to contact me for any additional questions. I know it can be scary, but reading books about how we can keep our bodies healthy has given me a lot of hope for the future!

Beating Bronchiectasis by Daniel Pecaut is an incredible book, I learned a lot. Have started the nasal rinses, meditation, drinking 64 ounces of water per day and breathing exercises. He gives the reader a lot of hope. I bought my book on Amazon for $3.99. I was just recently diagnosed with Bronchiectasis (March 2017) and trying to be proactive. Informed by NJH yesterday that my cultures for MAC etc. were negative, so relieved.