Chapel Hill...that was it! Kate, I was thinking the same thing and wondering if Bruce and his wife have been tested to ensure they're not HIV positive...recommend first seeing an infectious disease doc who can both rule out this type of immunological infection, determine the presence of MAC, and treat all.

My wife and I have both tested negative for HIV and my wife's new lung doctor did a sputum culture and found this disease,mold and yeast in her sputum . I have not been diagnosed but I just received Medicaid last week and I've got appointments Friday. But I'm sure I have the same thing my wife does. Almost the same symptoms except my lungs are worse . I had CT scan of lungs at local hospital. Also doctor didn't tell my wife about disseminated Mac . I found disseminated infection was where infection left the lungs and spread to other organs on the internet. If I told you all what we've been through with our doctors for the past three years ,noone would believe us. Told us we were health as a horse, when we thought we were dieing!

oh @bruce668 I know how you feel, I was misdiagnosed for a year and my doc finally sent me for an x-ray to prove to me that I was fine, It proved to him that I wasnt. Not many doctors know much about this disease. I hope you can get on the right track with the new doctor. Are they sure that it is MAC in your wifes other organs?

So far, macmai has only been found in her sputum . But her liver and spleen is enlarged , she is having trouble with her bowels ( was dianogsed ibs) , it's her whole body even her skin. Mine to , my bowels , skin ,eyes . Four years ago , we were full of life and acted like teenagers and now we act like we are 100 . Some days we say death would be better but we keep fighting on . It's tough when you are so sick that you really feel like you are dieing and no one believes that you are sick. I'm sure some people on here know how that feels. I just received Medicaid this past week and can finally go to the doctor . I did go to the local hospital February of last year and had a CT scan and my lungs are in bad shape . Alot of small nodules, a 5mm and 7mm nodule. Parts of lungs colasped and several enlarged lymph nodes . But I think I said this yesterday

Bruce, I know this is a really tough time for both of you .. but you really need to gather the limited strength and energy you have and try to follow the above post I did to find the best medical care with an INFECTIOUS DISEASE DOCTOR as quickly as you can!

It sounds as if "time is of the essence" for you. Focus on LIFE right now .. stay positive and know that we are all sending you positive energy to help you along on this shared journey. Hugs to both of you! Katherine

Bruce, I forgot to mention to be VERY careful about what you read AND read into what you read/research on the internet! You said: " I found disseminated infection was where infection left the lungs and spread to other organs on the internet."

I myself made this very same mistake when I was very first diagnosed with MAI/MAC. in 2007 I was so frightened about my diagnosis I started reading on the internet .. got so afraid of the antibiotic treatment that I FOOLISHLY refused to go on the antibiotics until I was infected with a SECOND very serious abscesses type mycobacterium! A very foolish decision based entirely on misinformation from the internet. My only reason for telling you this is "Forewarned is Forearmed!". I hate to see you make the same mistake I did.

Educate yourself about your diagnosed disease so you can ask intelligent questions .. AND be a good advocate for yourself .. but do NOT diagnose yourself .. THAT belongs to the medical community with extensive training and experience. Frankly all the internet research did for me was create more fear and anxiety .. I hope to relieve you of that by relating my own experience.

Remember, doing your "Due Diligence" is requesting/demanding tests/Xrays/CT scans/Ultrasound .. or whatever .. UNTIL you know you are on the right track for healing your body. You are the best judge of you body .. you KNOW what your gut tells you .. what/when/how something changed etc. But you must communicate that to the doctors .. AND keep detailed records in a 3 ring notebook of dates/times/doctors/tests etc so you can have educated conversations with your doctors. Hope this helps you! Hugs! Katherine

Great news re: HIV, but there are other opportunistic diseases for which a good ID doc will check while treating your infection. I, too, have endured terrible doctors...wonder why they chose the profession... but there are just as many great ones to be found. If you're close to Chapel Hill, you've gotten some great referrals here...being on Medicaid of course keeps you from seeking help outside your state, but there's plenty of good docs in the major NC cities...are these areas too far away for you?

We are from asheville area and we don't have funds to travel far. This disease has took a toll on both of us . The inflammation is tearing our bodies up. My wife has had five surgeries in the past year and a half and I've had three back surgeries. My back doctor put me out of work in November 2014 . Both of us are signed up for disability and they just turned my wife down and we sure don't understand how !

Thanks for the information and I do understand. But I was diagnosed with cold by the doctors and I knew they was wrong because the symptoms didn't fit and the medication didn't help. So, how do I leave it all to the doctors . I would tell them they were wrong and I could tell , all it did was make them mad .

Thank you , why are my post not being placed where I reply ?