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

Thank you Colleen. I won't be able to contact my pulmonologist until the end of the month, but I definitely will follow up. I don't want to scare anybody, but after going thru some tests over the past few weeks, I learned that 1 or 2 new cavities of MAC have developed in my lungs, while some of my original MAC has shrunk (good new on this part!). I've been on the 3 drugs since 2007 - - but over the past 5 years only take every other day. I see my pumonologist again in August to talk about this and view my CT scans.

My pulmonologist called my husband today when I was out and told him he received the result of the sputum sample and it is positive. We aren't sure if he is talking about the sample I took in 3 days ago or one from several weeks ago. He said he's waiting for the full lab report and will call me next week. It's still mind-boggling that I don't have any symptoms. Of this, I'm very thankful, but can't figure it out.

Hi Mimi,
I was recently diagnosed with bronchiectasis and MAC. Discovered because of a CT scan after some chest pain I was having. That has gone away and the only symptom I have now is a little fatigue sometimes. I'm waiting until my symptoms worsen before starting the antibiotics. If you read up on this you'll find that the Medical professionals that deal with this all the time or are the experts - Mayo Clinic, National Jewish Health, NTM, and sometimes recommend waiting to start the treatment until your symptoms worsen. Katherine's doctor - Dr. Aksamit wrote a paper that talks about waiting. Read number 5 in his article http://www.resmedjournal.com/article/S0954-6111(13)00379-X/fulltext . There are a LOT of doctors out there that don't know enough about this. I'm thinking mine might fall in that category. I'd go to Dr. Aksamit if I could but I found out I'd have to pay for it out of pocket - my insurance wouldn't cover it. So, I will make an appt. with an infectious disease Dr. that is listed on the NTM website http://www.ntminfo.org/ . I checked him out and NTM, in particular MAC is his clinical focus and area of research. He should be better than the pulmonologist I have. He can tell me how often I should be checked for growth, what tests to have, etc. We have to do our own research it seems and these message boards are invaluable. You have to do what makes you comfortable. Just do your homework and ask questions. Everyone here will try to answer any questions you have. It's helped me sooooo much! Good luck! Janet

Hi Janet,
Thank you so much for your reply and this information. I will definitely check out the sites you gave me, and look further into this. I am glad to have found someone else who has been tested but with little or no symptoms. My pulmonologist is leaning toward starting the treatment now to get a head-start on it. I will keep in touch with you as to what happens next week when I talk to my doctor further about the lab reports. Thank you again and for your concern.

I went into the site you gave me for NTM Healthcare Physicians, and it asks me to register before being able to go any further into the site. I started to, but it looks like it's for only doctors, etc. Did you have to register? If so, what about the questions they ask after your sign-in info?

Hi Paula,
Thank you for this information. I will definitely listen to this. Looking forward to learning a lot.
Mimi68

Hi Katherine, I'm on my third week taking the meds now and I haven't taken any probiotic, I also stop taking my vitamins b/c I'm afraid about side effect. A friend of mind suggest to eat a greek yogurt to help the cramping on mu stomach. What kind of probiotic and vitamins did you take? When do you take them and how much do you take? I would like to ask my Dr. but won't see him until end of August. Does probiotic help w/ the side effect? Thanks for all the help.

Hello All, I am going to say something that may not go over well .. BUT I going to say it anyway.

In the beginning of my disease I began reading at the American Lung Assn .. on NTM about MAI/MAC .. googling .. going to a local MAI/MAC Support Group. TRYING to do my "Due Diligence" .. finding out everything I could about my disease .. and those who have been on this Forum for very long KNOW I am BIG on educating yourself and DOING your "Due Diligence"! But here is my point .. I began to find myself patterning myself after people I was coming into contact with .. I was 'BECOMING MY DISEASE"! It became my FOCUS in life.

I had to have a "Coming to Jesus" moment with myself .. I really had to stop and really think about what journey I wanted to take with this disease.

I realized that I wanted this disease to JUST BE A PART of who I am .. I DID NOT want this disease to be WHO I was! I hope this makes sense to you. I'm just saying .. to educate yourselves .. but then LIVE your life best you can .. have whatever fun you can. Don't allow the disease to define you. Frankly I do my very best to just ignore it unless it is staring my in the face with whatever limitation I have at that given moment! If it isn't staring me In the face .. it doesn't exist .. denial has worked wonders since 2007 and I've live a wonderful life since then. I know that sounds goofy but I just feel happiness is a choice I make every single morning when I get up .. and I make that choice. These various illnesses do NOT define who and what I am going to be today! Hope that makes some sense! Sending hugs to all! Kathering

Hello Cila, For me Dr. Aksamit mentioned probiotics right away .. so I would recommend you start a probiotic ASAP! This is what I did:
PREVIOUSLY I rotated 3 different probiotics daily .. purchasing ones with the MAXIMUM billion. By rotating you get different strains. As a result of doing that I did not have either a yeast infection nor thrust in all of those 30 months of antibiotics.

BUT RECENTLY I FOUND the below.. if I had it to do over again I think I might simplify it and JUST do this one probiotic daily and see if I could get by with just the one .. see what happened. BECAUSE it has 50 Billion PLUS it has 10 different probiotic strains .. ALL in just ONE probiotic pill! Now it does have to be refrigerated .. but I think it is going to be worth it. Even though I am not on antibiotics at this time .. I still take a daily probiotic for basic health .. this is the one I am now taking.
NOW Foods Probiotic-10,
(50 Billion, 50 Vcaps Healthy Intestinal Flora*, KEEP REFRIGERATED TO MAINTAIN POTENCY 10 Probiotic Strains, Dairy, Wheat & Gluten Free - Vegetarian/Vegan Formula) http://www.amazon.com/NOW-Foods-Probiotic-10-Billion-Vcaps/dp/B0031RJXCK/ref=sr_1_2_a_it?ie=UTF8&qid=1465156239&sr=8-2&keywords=probiotics+50+billion

I was told because of weight loss to have a protein shake made with yogurt each morning. I was told a good brand was: NOW UNFLAVORED 100% WHEY PROTEIN ISOLATE 10 LB. If you google it you can find where the best price to purchase is. Personally I put about 1/3 yogurt, big scoop of the Now protein powder, a bit of sweetner, fill my WONDERFUL Hamilton Beach Blender the rest of the way to the top with frozen fruit and blend away. (https://smile.amazon.com/Hamilton-Beach-51101BA-Personal-Blender/dp/B00KVZ27UA/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1466295509&sr=1-1&keywords=hamilton+beach+blender ) I get big bags of mixed berries, mangos, pineapple, peaches .. really whatever you like .. but blueberries are really healthy. It is a good way to get that healthy yogurt into your diet. I will be honest with you .. I was one of the lucky ones .. I did not have a lot of nausea .. I was able to figure out a schedule of taking my meds that enabled me to avoid many side effects except for sleep disturbance, fatigue .. needing a lot of sleep .. 10-11 hours per night. I am wondering if what you perceive as “cramping in the stomach” could possibly be “Gerds”? ie heartburn? Why don’t you google it and see if any of those symptoms seem like what you have. It is VERY common for people with MAC/MAI to have GERDS. If so you could even see your local doctor about that .. you don’t have to wait for Dr. Aksamit .. OR you could even try the over the counter “Zantac” which is often recommended for heartburn. But DO check with your doctor first!
You can ask Dr. A about vitamins .. but truthfully I have never found a doctor that much believes in them so never asked him .. BUT I personally am a BIG believer in them. This is just me personally .. but I read one time that Americans have the most expensive urine in the world! Ie that whatever vitamins your body does not need .. you excrete them through your urine. That is MY personal philosophy .. SO I am CAREFUL NOT to take more than the recommended fat soluble viamins (The fat-soluble vitamins, A, D, E, and K, are stored in the body for long periods of time and generally pose a greater risk for toxicity when consumed in excess than the water-soluble vitamins.) But I take plenty of the other water soluble vitamins. Personally I take the generic CENTRUM SILVER .. BUT I ALWAYS compare the generic with the actual Centrum Silver. I have found some generic brands sneaky! They are NOT equivalent! I have also added various water-soluble vitamins .. but do not feel comfortable advising .. to each their own. I would add that because I have some blood in my coughing Dr. A advised me to stop fish oil and baby aspirin .. anything that is blood thinning.

Hope the above helps .. sending you Hugs! Katherine

Paula, I so appreciate all your efforts on this Forum .. you are such a booster for people .. I think it really helps people newly diagnosed for people like you and me who have "been in the trenches" to take our time to take just a bit of the fear away. We know just how scary it is in the beginning .. BUT we also know that we have come out on the other side with some knowledge that we WILL survive .. we WILL live our lives despite the challenges. NOPE it isn't always fun .. NOPE we wouldn't always choose it .. BUT I sure as heck would choose it over what I see each and every time I go to Mayo Clinic for my check ups! Like you say .. Attitude of Gratitude. Stay the Course my Friend! Sending you a Big Hug! Katherine

Paula, I'm sorry to hear about the new cavities. Please keep us posted on your progress .. I'm sending you LOTS of positive energy .. AND my health inducing Hugs! Katherine