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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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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!
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1 Reactionoh @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?
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1 ReactionSo 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
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1 ReactionBruce, 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
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2 ReactionsBruce, 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
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1 ReactionHello Kay, I have been on meds for 6 month now and he will check it again in 6 month. I'm not off the meds yet, I'm still taking them hopefully not for long. I don't get depress much anymore I tried my best to look on the bright side of like. I hope Pray this coming New Year brings all Blessing to all of us here in the forum. Cila
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3 ReactionsGreat 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?
Hello Cila, I am so glad you are having such a positive outlook now .. that is such a blessing! A hope for newcomers seeing there IS a light at the end of the tunnel! Thank you for posting an uplifting message to be seen by newcomers! It helps them along on our shared journey. Hugs to all! Katherine
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 !