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

Cowboy, I am SO glad you are coming to Mayo .. Mecca as far as I am concerned! I also have Reflux/GERDS. I tried ALL the various remedies .. zero helped me until I tried Aciphex. That is the ONLY one that has helped! Unfortunately it is not a generic and requires an annual letter from my doctor to get ANY help on the cost .. but since it is the only one that works for me .. I am willing to pay the cost. Don't know if it might work for you but sounds like it is one that you have not tried?

SO glad you are getting this checked into .. because Dr. Aksamit indicated there is SOME research indicating there may be some correlation between GERDS and MAC. So I am really glad you are getting it checked .. Mayo is ALSO a great place for you to request to be checked for MAC because of this GERDS issue. May not be an issue .. but if you are concerned .. Mayo is the place to put your concerns to rest! Perhaps request this in advance so you don't have to make two different trips? Sending you positive energy and a hug! Katherine

Hi Katherine and All Im 40 yrs old and was diagnosed with Bronchaectasis in 2007. I was never diagnosed with tubercolosis but My doctor prescribed me anti tuberculosis drug and undergo treatment for almost 3 years. After the medication I seldom had cough and felt very normal. However when I started working night shift 2005 I started to have dry caught and no mucus at all. I consulted my doctor and usually they prescribe an anti biotics. I noticed that there is really something wrong and after 2 years I began to cough with excessive mucus I continued to consult my doctor until she finally suggest me to undergo bronchoscopy and had may sputum cultured and I was diagnosed with MOTT or mycobacterial other than tuberculosis. My doctor prescribed clarithromycin 500 2x a day rifampicin 600 once a day and ethambutol. MARCH of 2015 my MoTT lab test was negative so My doctor told me to continue medication for a year after my lab test went negative. After A year my sputum culture was postive again. So I transferred to a different doctor and he advised me to consult and infertious disease specialist. My infectious disease specialist told me the bacteria might be a colonizer and since I am wearing braces there is a posibility that the bacteria are just between my teath so she asked me to repeat the sputum culture and collect specimen without my braces. I did not remove my braces but I made sure that I brushed my teeth throughly and gargled with moutwash before collecting sputum and my labtest result was negative so she told me not to undergo medication. But I continued to cough and this time I always have a excessive mucus which bothers me a lot since this is very embarassing at work. I dont take any medicine anymore but I take 1 gloves of garlic with honey 2x a day. I still have excessive mucus but it is easier for me now to clear the mucus. Any advice on how I can take care of my lungs. I am still working on night shift and thinking to have a day shift job since I suspect that my work shift is the reason I continued to produce excessive mucus. Thanks

Hello @imeehaigt (do you have a first name .. seems so much more personal!) .. SO glad you found us! Hmmm .. your situation sound a bit complex .. I feel because of your braces. Based on my own and everyone else's on our Forum's experience .. that darn Mycobacterium is a sneaky little varmit who just loves to hide in strange places! Just don't have a clue if the braces are an issue or not .. leave that to the doctors!

I think if I was sitting in your shoes .. your having already gone through antibiotic treatment .. I would decide to do my "Due Diligence" and get a good second opinion from an Infectious Disease doctor who is REALLY up on MAC. You should be googling first: Infectious Disease Doctors in your area .. then calling and asking "How many MAC patients have you treated in the past 12 months?".

When you have scouted out that doctor .. FIRST .. request "Any and All" medical records from any/all doctors who have treated your lungs in the past .. go PICK them up yourself!! That makes sure the records don't get lost in the shuffle. THEN start asking the above questions from this new doctor to really figure out what is going on with your body. You and I are not doctors .. you need proper guidance to make an educated decision on what you want to do.

Before you contact doctors I would especially recommend an article I just recently happened upon  .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed.  It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation.  I have put the link below:
http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf

BUT you are given just one body in this lifetime .. one set of lungs .. only YOU can take care of them .. no one else is going to care as much as you do. YOU have to take care of you! With what you have going on .. if it was me .. I'd pursue what I'm suggesting .. but that is only me. You are only 40 .. a long time to live in that body .. take good care of it! A good friend of mine chose to get braces in her mid 50s! If you need to remove your braces temporarily for your long term health .. that could be a choice you make?

Truthfully .. I wouldn't think day/night shifts would make a difference .. UNLESS it affects your sleeping and you are not getting proper rest. Sleep is VITAL for good health. In terms of mucus .. I am not recommending it but I read:
For Bronchitis "This Mucinex medicine really helped me out with a bronchitis attack. I have been suffering with acute bronchitis for about 3 weeks now, after taking all of the medication that my doctor prescribed I still have no relief. After reading reviews I decided to give Mucinex (liquid) a try, to my surprise it really helps to bring up all of that sticky mucus that was stuck in my lungs. Although I'm not fully well yet, I can see better days ahead!"

I use what is kind of a SUPER Mucinex to liquefy the mucus that I got in Vienna from a doctor. Unavailable in the USA .. but I get it whenever I travel .. it really helps me cough up the sputum.. Remember that collected sputum is a breeding ground for MAC .. we want to get it up as much as we can .. I call the coughing my "lung hygiene" .. I know it is embarrassing .. but it really is a necessary function for our healthy lungs!

Hope you find some of this helpful .. sending you a hug in this tough decision time! Keep coming back .. your will find everyone very kind and supportive of your journey! Katherine

No I have not tried Aciphex how many MG and how often? Great info from Dr Aksamit also! Thanks for trying to get both Reflux and MAC on same visit! I live in Tampa but will be moving to Jacksonville, Fl in the Spring but I need answers now so I have appt in mid Dec w a Mayo Gastro Dr there! Thanks for all your help! It is appreciated! Going to see Gastro Dr here in Tampa on Tuesday and ask him for prescription you mentioned.

I haven't been contributing as much to this forum as I am in limbo about my lung condition. I spent half a day in the hospital expecting to have a biopsy of a nodule 9 mm - only to be sent home because the radiologist was afraid of hitting the wall of my lung and my having a collapsed lung. While at the hospital, I had another cscan done and the nodule had gotten small 7 mm , the size it was in June.

Oddly enough, I have stopped coughing up phlegm too - or very little. I was getting sick alot at the beginning of the school year which was treated with antiobiotics. Then I had the flu shot and I really don't know what is going on other than I do know I have bronchiecticus which is a constant.

I am able to keep up with a long school day, but don't do any work once I am home - about 6 p.m. Today I pressure washed my house - well with a light weight Home Depot system and a hose - and was able to keep up a strong pace for six hours. I only pray I stay on this path.

I know I have to remain vigilant but spending every day worrying is a waste of quality life. I was already in a mindset that I had lung cancer which now I truly doubt. It's not worth worrying about possible outcomes until they are a fact. I wish you all good health and stamina as we head into the holiday season. Kathryn

Dear Kwilbur,
Sounds like a tough time lately. Glad things are looking a little better. I too worry, but have trouble turning it off. I like the poet's quote, "it's a good thing the future only comes one day at a time!"
david1952

Great info I will get me ice trays tomorrow. My ice maker is on the blink anyway. It makes sense you could easily get bacteria from ice makers.

.. as I mentioned .. I am just storing them in a gallon size Hefty freezer zip lock bag as they freeze to get a supply of them!

Hi Cowboy! Glad you asked me .. in looking at my prescription bottle I see they have come out with a generic! It is: RABEPRAZOLE SODIUM EC 20mg. I take it once a day with or without food .. BUT I try to take it early in the day because it can cause sleep disturbance in some people .. and I am a terrible sleeper! Good luck! So glad you are doing your "Due Diligence" and gathering all the information you need .. good for you! Hugs to you! Katherine

Kathryn, SO glad to hear from you .. I've been wondering how you were doing! Sounds like it's been kinda rough for a while .. but I TOTALLY agree with your philosophy of not worrying. I am an absolute believer in "Put my energy into what I can control .. and let go of what I can't control". I really make an effort to run my life by that rule.

I now realize that in my younger years I spent SO much time and energy trying to control things that I had absolutely no possibility of controlling! Now in my older years with my husband and my health issues I have found a VERY effective manner of dealing with them is: DENIAL!! I know that may sound silly .. but we made the decision that we would do our sensible "Due Diligence" in health issues .. and then "let it GOOOOOO!" Forget about it/DENIAL .. until/unless we were face to face with it! IF it reared it's ugly head .. THEN we would deal with it. But worrying .. fussing about it does not a whit of good .. put our energy into living our lives as happily as we possibly can .. as fully as we can! It has worked well for us. When things pop up .. we deal with them .. otherwise we just live as fully as we can.

Now saying this .. I still want you to be aware of what is going on with your body .. if you feel you need to get a good second opinion .. you only have to read our Forum on good ways to go about it .. be pro active .. take good care of yourself. Stay in touch and keep us posted on how you are doing. Sending you a hug! Katherine