If I recall that post, it was Charlottesville - I know Duke does little as I checked there...

If I have my information correct, my wife and I have disseminated infection because it has spread to almost every organ in our body and we have had it for three years. The doctors we have seen , seem to know very little about this and act like it's nothing but it almost took my life in the first two years and my wife has enlarged liver and spleen plus our intestines doesnt work like they use to. I have a lot if nodules in my lungs and my lympnodes were enlarged . Now I take spells when I spit up a lot of blood . My wife has had insurance but I just got some last week and I can get a referral to a specialist this Friday . My wife gets sores all over the top of her head , sores on her arms that last for months and we both have figure tips that split open. Is this normal for this disease? My wife also had two penicillium and rare candida aalbians as well as mycobacterium avium- intracellular complex . We are very sick and afraid because our doctors have acted like we are not that sick and have nothing to worry about. I will keep reading on this forum but if anyone has any information they feel , is a must know , please feel free to tell us . Thank you all for the information and for someone that understands !!

Hi @bruce668 and wife , I hope you can get to the right doctor soon, the people on this site are fantastic and will give you great advice, I think all of us on here have been afraid at first because it is a hard condition to understand , but finding a doctor who knows about MAC will be a great first step, I live in New Zealand and finding a doctor who was experienced in MAC wasnt easy. I hope you find that things are not as bad as you thought. Please keep us updated and dont hesitate to ask us anything, I know I had many questions at first. I do not have the sores or split fingertips and have not heard of this being related but others may be able to help more with this.

Heather, you are INDEED proof of our kind supportive community of caring people .. my heart warmed as I read your post .. I am SO proud to be a part of this Forum! Hugs to you! Katherine

I'm so sorry for your wife's and your frustrations with your ability to get good care. I am having the same problems. Ive had 5 pulmonary doctors. The first was wonderful. I was coughing up blood and with in a week he did my first bronchoscopy and diagnosed bronchiectasis in may 2014. But he had to go out of the country to be with his family. The others have made me feel like my health was nothing to be concerned about. I'm in st. Louis and I've been to some of the best dr s at Washington university. They said i had cf , then said i didn't but that i have non-cf lungs. Then i felt like wasn't important to their clinic anymore. So my RA Doc and primary care Doc are tring to find an infectious
Disease specialists. Im waiting for the call this morning. Maybe you and your wife can see an infectious disease specialist. Be sure you tell them your couing up blood and need to be seen now. Sometimes they can put you in as the first or last appointments of the day. I also have splitting nails and finger tips and toe nails that resist any treatment. Iv requested 4 times to test for fungal markers in blood and went last Friday so im waiting on results before i start my big 3.antibiotics. also in need of glasses after my required eye exam before starting ethambutol. Lots to do today. Take care to you and you wife feel better really soon! YOU ARE LOVED!
Becky

Hi Becky, WOW .. it seems like you have certainly had your share of troubles also! I agree .. it is REALLY important that your doctors get you set up with an INFECTIOUS DISEASE DOCTOR! Take a look at some of the things I suggested to @nelisabeth on page 18 .. some of them might apply to you? If you just click on the name .. the post should come up I think. Keep coming back to our Forum .. let us know what happens! I'll be wondering! Hugs to you! Katherine (also read past pages of the Forum .. lots of good information!)