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5 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jkiemen Hi Jo Ann, I had the same issue with my insurance. I did find a Dr at Mayo that I wanted to see (excluded from my ppo) and asked my primary care physician for a referral. Then called my insurance and told them the only Dr available on their list was not helpful and I needed a second opinion…It took a while but they made an exception. Problem was that they would not pay for tests done at the facility on the spot….I called the Dr office at Mayo and explained the situation when I made my apt. I asked what the Dr would most likely want to see in the way of tests and got my primary to write the script for a catscan. I had already had a bronchoscopy with a diagnosis of MAC. Just brought all of my paperwork with me and had the scan on disc. It was a roundabout way to get to Mayo but sure made me feel better and rest easier. I know that if I run into problems in the future, I will probably have to change my insurance to include the Dr at Mayo as I am most uncomfortable with the pulmonologist on my insurance. I am fortunate that my case is mild. At least my insurance was somewhat flexible. Good luck in finding a Dr to take care of you….If this doesn't work for you, I really believe that it is so important to trust the Dr that has direction over your well being and it might be worthwhile just to bite the bullet and go out of network. Wishing you the best. Kate

Fri, Mar 15 2:17pm · health at diagnosis in MAC & Bronchiectasis

@nannette, @windwalker Sleep is so important. On bad nights I was actually sitting straight up too. I was so happy to get
Dr Leventhal's directive on the Acid reflux…I had been to my GI Dr and he was just trying to push meds which I refused. This was such a simple solution that I almost did not believe that it would work as I had tried so many other approaches. I am thrilled that it has (along with cutting out trigger foods) Anyway, Nan, if you still have the reflux maybe you could try a lower wedge or maybe one of the memory foam ones might be more comfortable???…..Just a thought. Good luck! It is always a dance. Good health to you both! Kate
Windwalker….haha…the pet cuddling might just be the most important part of therapy in my opinion. You would have died laughing seeing my bed at one point with 14 cats roaming and cuddling during the night. (tolerant husband) Thankfully, I am down to 2 cats in the bedroom now.

Thu, Mar 14 8:34pm · health at diagnosis in MAC & Bronchiectasis

@nannette Hi Nan. I see that you sleep on 3 or 4 pillows for acid reflux instead of a wedge. I told my second opinion Dr. at Mayo Clinic that I did the same thing and he said absolutely not to do that. He said that can contort/bend the body and put pressure on the abdomen that will aggravate and worsen the problem. I find the wedge makes a great difference over the pillows. That and not eating or drinking 3 hours before bed pretty much has eliminated the reflux for me. Sorry to say this as I read you hate the wedge. Perhaps give it another try? Kate

Wed, Mar 13 3:21pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@ling123 …Ooops…mispelled that herb in case you are interested….Gymnema Sylvestre. Sorry.

Wed, Mar 13 11:02am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@ktkarenst…You will find this a very receptive group to help with any of your concerns. I am sorry to hear that you are on your 'second go-round." I wondered too if you were diagnosed with bronchiectasis as Terri asked. Often the MAC & Bronchiectasis go hand in hand. I also wonder if you might do well with a second opinion after your upcoming appointment? I have very mild MAC and Bronchiectasis yet my 'second opinion' Dr thought that nebulizing a 6% saline solution would be helpful. (same Dr as Terri Windwalker) Since you say you can now feel it in your lung and could not before, perhaps the mucous is building up and nebulizing saline could be helpful for you. It seems to be just good lung hygiene to help thin and get the mucous up and out. (Important to hinder "bugs" from developing.) Wish I could offer more help and suggestions. Good luck to you and welcome to our very "exclusive" group. Kate

Tue, Mar 12 6:51pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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.

Tue, Mar 12 12:58pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@windwalker @ling123 …I just read today that FL is the highest MAC state. I wonder if it is because FL is a retirement destination and MAC is typically an older women's disease. Are we "importing" the MAC cases here in FL or "manufacturing" them? Hard to figure…but I would not consider moving unless my case got really bad. Terri..I agree with your thought about diet…food certainly impacts our health and makes us able to either fight off or succumb to diseases.

Sun, Mar 10 10:20am · Only read if open to alternative therapy for MAC in MAC & Bronchiectasis

@kristiemlove Hi Kristie….me again. Would you mind sharing the length of time that your Mom has nebulized for her amazing results? Do you know if she plans to continue her program for any length of time? I am extremely interested in her progress. And so very glad, too that she has bounced back so remarkably. I wish her continued success… please tell her that I so admire her determination. Thanks!!!