Hello Dmille .. I am SOOO glad you finally found a doctor who you have confidence in. An Infectious Disease Specialist is certainly going to know more about MAC/MAI than most doctors. Have you asked him how many other MAI/MAC patients he has treated? That is always helpful info .. just like asking a surgeon "How many of this type of surgeons have you performed in the past year?" It gives you a feel for their experience in your particular issue.

Our bodies are so unique .. what dosage .. what mix of drugs that may work for one person .. may NOT work for another person. A doctor just can't "rubber stamp" a patient with a plan .. it truly is a complex puzzle of sputum test results, CT scans, Xray changes, your answers to their questions .. the doctor must put all that together to determine your specific treatment plan .. AND when to alter or change the plan. Complicated .. and WHY you need a good doctor that you have faith in! It sounds like you have been lucky enough to have found yours .. YEAH! I'm Happy for you! Keep us posted on your progress .. we're rooting for you!

(Yes, I've investigated essential oils .. BUT I also have a wonderful Homeopathic Practitioner who helps me tremendously with my coughing .. AND the essential oil "Raven" from Young Living that is excellent for coughing counter acts my "remedy" from my Homeopathic Practitioner so I stopped using it.)

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 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

Thank you Katherine for all the informations, I can look at the bright side of life and try not to think about MAC. I have GERD and taking Lansoprazole ( generic for Prevacid). I have not taking my cholesterol meds and my vitamins. I used to take Centrum Silver, Calcium, and Fish Oil not anymore, I stop all that since I took all the MAC meds. I will see my Primary Dr. end of this month and I will ask him about the Vitamins. I start walking 1ml. a day hopefully I can increase it later. I hope I can maintain my cholesterol down so I don't have to take the meds. I live in Montgomery AL. and we don't have good Drs. over here. I saw a Dr. here in Montgomery but I'm not happy so I asked Primary Dr. to referred me to to Birmingham at UAB for second opinion. I'm not sure if he know much about MAC but spend some time with me. I'm learning about this disease b/c of all of you. Thank you so much everyone.

Good for you Cila that you are walking each day .. that is just GREAT!! Walking is such a good exercise .. AND exercise is such a good thing for both our bodies and our spirits. So happy for you! It sounds like you are really trying to get a good handle on your disease and just how to go about being a good Advocate for yourself .. that is EXACTLY what each of us must do. No one cares about our bodies as much as we NEED to do .. and as busy as doctors are required by the system to be today .. it is doubly important that we DO educate ourselves .. and then advocate for whatever we feel we need. You are CERTAINLY doing that by getting a second opinion .. good for you! Just keep coming back to our Forum .. sharing what you learn .. and learning from each other. That is what it is all about! Sending you a Hug! Katherine

I am glad that you are feeli g better. I was diagmosed with MAC this month and on three antibiotics. I had diarrhea at the beginning, it has subsided. Do you know of anyone who had eye or hearing problems. I take the colorblindness test every other day. That part of my eyes are still good. Look like things are blurry, but it could be my mind playing tricks on me. I am trying to stay positive....

Hello Sophie, I have been taking the three meds for MAC for a month now and I haven't seen any eye Dr.  I have Dr. appointment next month to check my eyes.  I noticed my eyes are itchy all the time. I don't know its b/c I don't get enough sleep or from the side effect of the meds.  Also, my ears I can hear some noise.  I get a lot of stomach cramps on and off.  Try to drink plenty of water after you took the meds.  Take care off yourself and let us know if we can help.

Hello @sophie1019,
One of the antibiotics can cause eye problems, even blindness. So you do need to see an ophthalmologist yearly. Also, another of the drugs causes hearing loss - it's thought when you stop the drugs, that your hearing will return. I have hearing loss in my left ear. But I've been on the drugs for about 8 years so I don't expect hearing to return to that ear. However, I CAN BREATHE and do feel a lot better after being correctly diagnosed, going on the meds, and following my pulmonologist's recommendations about exercise and rest. I'm doing great today. If I don't tell someone, they would have no idea that I have NTM or MAC, am on the 3 drugs, or that's why I make it a point to do Pilates or gentle Yoga 5 times a week. I'm not one of those people into exercise ... but it DOES make a big difference.

Hi Paula great to hear you are feeling good, have you been on the same 3 antibiotics for 8 years or have you become resistant to some and then changed and if so how many times in 8 years? Is your hearing loss really bad or just a little?looks like I will be on the antibiotics for the long haul .Thanks for your help.

Since you have been on for such a long time, how is your eyesight? Do you get your eyes checked every three months? My doctor did a baseline and my eyes are fine. I have to go every three months to have them checked. I have not noticed any hearing loss but i have only been on meds for one month. I hope and pray that you continue to do well and hopefully you can come off soon. Since i have been taking the meds i notice that i breathe better but i still have a chronic cough.... please respond. Thank you.