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

I have been on ketos for a year which means no carbs

@america here is my opinion on that. We moved to Tennessee for many reasons, but our ten children and thirteen grand babies all live in Connecticut. I was physically sick with MAC in Tennessee, but the lack of a support system (family) took more of an emotional toll on me, and the MAC actually got worse. After a year we moved back. I am still sick, but my family is ever present. That support should never be taken for granted. Whenever the good God calls me home, I would rather be found where my family is hands down! I hope this experience helps put perspective on the correlation between physical and emotional wellness. Moving away taught my husband and me a very valuable life lesson. Good luck. (@irene5)

Thanks Irene5! Family means a lot to me and I know it the hardest thing to do. I have 4 daughters and I son and we are all 10 minutes away from each other. The good thing is we’re there for each and I know life would be empty without them. Thank you for sharing your experience it means a lot. Hugs Rita

Hi America...if it were me I would stay where u r and do the necessary things to stay healthy...baths, boil your water etc....the emotional component to this disease, I think is even more important...be happy💞

Thanks Jennifer! I really appreciate your help! I believe I’ll not be moving hugs rita

@ling123 I totally agree with your view on sugar and white carbs. I too tend towards higher blood sugar levels (pre-diabetic) even when I do not eat sugar and very rarely eat white carbs and also limit fruits. I've found an Ayurvedic herb called Gymna Sylvestre taken daily brings my sugar levels down very well. I think we need to do all we can to stay as healthy as possible.

@windwalker @heathert @supermom890 here’s an update from jasmine321. My CT scan looks worse; initial scan in 2012 only right middle lobe was affected. CT scan in January 2019, bronchiectasis spread to small part of lower lobe. Underwent bronchoscopy in February. Copious mucoid yellow secretions were found in the right mainstream bronchus, in the right middle lobe and in the superior segment of the right lower lobe. My Pulmonologist partnered with an ID doctor. ID prescribed Ethambutol, Rifampin and Azithromycin daily plus Arikase inhalation. I read the packet sent to me about the Arikase inhalation and found out vertigo and tinnitus are common side effects. I already have vertigo that’s why I don’t drive far. My husband drives me to work at times. I also have ringing in my ears. Therefore I told the ID doctor that I will do the 3 antibiotics for 6 months, and if no improvement, we will add the Arikase inhalation. I work full time so I cannot afford to call in sick all the time because of the side effects of the medications. My first treatment was MWF for the 3 antibiotics. Now, my ID doctor prescribed the big 3 daily. Wondering if daily is too much. Today is my fifth day of taking the big3. So far, no problems. Taking probiotics with prebiotics.

@mariierod123 I'm not on any particular diet except consciously try to include healthy items in my daily meals. When I looked up Keto diet, I was surprised to find out that I'm already eating a number of the things on daily basis that are in this diet, such as avocado, blueberries, almonds, and eggs. There are other food items in this diet that I eat on regular basis. Although I'm not strict on what I eat or not eat, I feel that I'm doing something right because I feel good and healthy.

@alleycatkate I'm also pre-diabetic. After going on the low carb diet, my A1C number went from slightly above the borderline to slightly below it. But it is plateaued after that. My doctor told me that she felt that my blood sugar might have always been on the higher end of the normal range and I just wasn't aware of it until my diagnosis. So this may be the best I can hope for. That's OK with me as long as I can keep it from creeping up. So far so good.

@jasmine321 My wife was on the same drugs and she could not tolerate them. All total she was taking Rifampin 300mg x 2; Ethambutol 400mg x 4; and Azithromycin 500mg x 1 three times per week Tuesday, Wednesday and Friday. She was on them for approximately 6 months, These drugs were in addition to the antirejection med she is taking. She loss lots of weight and stays in bed more than she was out. She gave it up. It seems to me, no matter how many drugs you take, there isn't a cure. 18 months is a long time to take all those drugs and not have a definite outcome. Blessing to all concerned. I have made it my commitment to pray for all of you daily...