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

Sorry. Not at same time. A little later. But anxious to meet him. I have a wonderful Doctor, but he is in North Carolina. I want a closer medical center than Duke

I have bronchiectasis, not MAC so I dont want to assume anything. I have been treating the bronchiectasis since 2009. All inhalers the doctor have given me were, " try this and see if it helps. You decide if you need it". So I have tried many. I had the same instructions as you with the Symbicort. I didn't find any difference using it daily. So now I use it when I can feel the airways need clearing, not everyday. Like yourself, I hate taking so many ABX and NAC and vitamins, and try this supplement...The other thing that keeps me from everyday use is the possibility of thrush mouth. You can read Katherine's reply after this one. But this is an opinion concerning how I feel about something, not what a physician wants for you.

Mine are not too bad because I got the vaccine. I am taking to meds for it to help with nerve pain and such. Uncomfortable, but bearable. My friend had it without the vaccine and it was horrible! Just another part of the golden years, right?

Posted by @josephene, 9 hours ago
@katemn
Hi Kate
I have been diagnosed with MAC Avium Intracell....... plus underlying sarcoidosis and have been on meds (Clarithromycin, Rifadin & Ethambutol) for almost 8 months. During the last month, I have been experiencing extreme fatigue - do many of our other sufferers find this, and what can they do to manage the problem. I feel that I would like to stop medication as the cure is worse than the disease.
Cheers
Josephene.

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@josephene, Oh Josephene I SO feel for you .. so remember the tough times. I hope you don't mind but I am going to answer this on the main MAC thread .. because I KNOW some of our wonderfully supportive members will jump in with thoughts and help.

For me personally during the tough times of what I called 'extreme fatigue' I tried to listen to my body .. if I needed to sleep .. I slept 10 to 12 hours .. I just plain did not set an alarm clock. I was retired so was able to do that. I let my body set the pace .. BUT I still tried to do whatever exercise I was able to do. Exercise kind of resets things in our body I think .. that helps in my opinion. With your Sarcoidosis you are getting a DOUBLE whammy .. but PLEASE do not think of stopping your medications! All you have to do is look at past pages of our Forum and you will find really helpful postings from @windwalker Terri:

"I was diagnosed w/MAC in 2005. I was a single mom at the time and dealing with a wild teenager and stressful job. All three drs were pulmonologists and were the best in their cities (Richmond, Va. and Tucson, Az.) Not a one suggested I see an ID doctor; I didn't even know there was such a doctor. Because of my situation at the time, I did not have the where-withall to investigate. My doctor at Mayo told me that, yes, since I did not get proper care in the last 20 yrs that my lungs are severely damaged. He said it was a shame because a lot of it could have been preventable. I have gone through the steps and grieved the loss of 2/3 of my lungs."

Also Jo, it is SO important to keep up a healthy diet .. even though with decreased energy level food doesn't seem like a priority. But good food really does fuel our bodies .. equals better energy .. and can even equal better sleep. Give that some thought? Even if it means buying easy to prepare food at the market?

Jo, just KNOW there IS light at the end of the tunnel! I have been off antibiotics/stable since May 2014 .. and have been living a full live ever since! Keep coming back .. we are here for you every step of the way! Sending you a Big Hug in this tough time! Katherine

Have you been checked for being annemic? I was and was told to start taking iron pills. Next day my afternoon fatigue was gone. Couldn't believe it. Maybe it was a considence or maybe it was the iron helping. Something to consider asking about if you don't know. Good luck.

@jillnc, Jill, thanks for jumping in .. had not thought of that! The antibiotics can do different thing to our bodies .. also Jo .. vitamins make a difference .. another note I made:
VITAMIN LEVELS .. TESTING RECOMMENDED FOR 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'
Hugs to you ! Katherine

@pamelasc1, Pamela and Maryjo, for me .. I feel I really do need to use my two inhalers: Qvar and Atrovent twice a day. If I don't I can "feel" the sputum just lying there and I can't cough it up the way I need to until AFTER I have used my inhalers .. they seem to open the airway in a manner that allow me to expel properly. Each of our bodies are different .. and lung issues different .. so we need to do our 'due diligence' and just listen to our own bodies! Hugs! Katherine

BUT after some thoughts I realized some things I have been doing wrong and this is my new routine:
1. using inhalers PRIOR to brushing my teeth (had been using after)
2. using peroxide to dampen my toothbrush with toothpaste to brush (purchased a squirt dispenser)
3. using peroxide after brushing for toothbrush storage for sterilizing
4. am NOW going to be more dedicated to daily use 3-4 x a day of my "Magic Mouthwash" .. hmmm .. how can I complain that something is not working when I am not properly following direction?! I must admit that since it is refrigerated .. I forget to go to the kitchen and use it properly. I have NOW put up a note in a couple of places to remind myself! Will now see how it goes!

I think this routine will help oral thrush by keeping my Sonicare toothbrush sanitized daily. http://www.good-gums.com/sanitizing-your-toothbrush.cfm

Yes, good advice. I take both as well because they have been consistently low.

@maryjo2sell, Maryjo good to know that having had the vaccine .. if you DO get shingles the nerve pain is not as bad! I am just hoping the FDA does not sit on approval of that new European vaccine! If I hear of approval I will let everyone know .. I for sure will be getting it! Hugs! Katherine

Hi, all, I have been reading all these posts but haven't had much time to weigh in, however, feel the need to take the time here. Re: oral thrush and inhalers - I have bronchiectasis, atypical cystic fibrosis and MAC. My CF doc prescribed an Albuteral inhaler, 2 puffs twice a day just prior to my nebulizer solution. It opens the airways to allow the mucous to be brought up more easily. Once I have completed my inhaled saline (salt thins the mucous), I use an aerobika to get the mucous out of the lower lobes of the lungs. The aerobika and the lung expander are 2 different things. If you use a "huff" cough, (like you were cleaning your glasses and fog them with your breath only more forceful), along with the aerobika, you can pull mucous out of those lower airways. That is what it's meant to do. Once done with all, brush your teeth! That is the best way to keep thrush at bay. If you aren't able to brush, at the very least, rinse your mouth with water. I have lots of mucous, so what I'm stating here may not work for everyone, but it's really important to note that the expand a lung, which I just started using (thank you, Katherine!) and the aerobika are not used for the same purpose. Linda