(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!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Well Jan here is my take on weight loss. That is how I basically was diagnosed. I dropped 18% of my weight just like Katherine wrote once about herself. I am fortunate to have a doctor in the family who was very concerned about that plus I had no appetite and had all I could do to make it through the day with my lovely first graders. He sent me for a CT scan and the rest is history! So for me the weight loss came before meds. Irene
Thanks for the reply. I haven't had the weight loss problem yet but I'll be prepared if/when I do. I like the protein shake with yogurt and fruit idea. It seems to cover multiple issues at once. Jan
Yes. Sorry I forget sometimes people don't know the letters. It is more common in kids under 2 than in adults. Most adults I've told said they didn't even know adults could get it. I didn't feel I had issues breathing, my throat just hurt so bad I couldn't stand it anymore and because of all my other issues I figured an er/hospital was better equipped than an urgent care. Of course they don't treat rsv in adults so they sent me home as I was feeling better than when I had come in too.
@colapyrus....I have not looked back to double check, but are you new to taking the 3 meds for MAC? I am too. I started drug number 1 this week. I hope I don't lose weight...I can't afford it. Thanks for asking more questions about that. Feel free to tag me with any questions or comments. 🙂 Thanks! Amy
@jillnc .. Jill, thanks for the clarification .. interesting that they don't even TREAT Respiratory Syncytial Virus (RSV) in adults! How on earth are we supposed to "diagnose" ourselves between Respiratory Syncytial Virus (RSV) and a more serious virus or whatever?! I would think you did the wise thing is seeking medical care with your other health issues .. better safe than sorry I would feel for myself! Thanks for explaining! Hugs! Katherine
@tdrell, Hi Terri! I finally have the definitive answer after going for my sputum culture at Mayo Clinic March 7! I asked the Respiratory Therapist .. I told her I had always called it my "Monthly salt induced Sputum Cultures" she said that was accurate from a layman's standpoint but the medical term would be "Hypertonic Saline Induced Sputum Culture". So Terri I am inaccurate ..but for the needs of our newcomers think I am going to stick with my terminology because I think it is a bit easier to understand to a newcomer! I am wrong but phooey who needs to be right if it is easier to understand but won't be death to us! By the way .. how are you doing? How ok! Hugs to you! Katherine
<br><br><br><br><br>Hi Katherine. Been thinking of you a lot. Hoping you are feeling better and <br>better with each passing day. Hugs - Terri M. Been <br>thinking of you too Terri.<br> <br><br>
@windwalker, Hello Terri, I really am feeling better. In fact hoping to go to a grandson's championship basketball game on Friday! Just about my first outing! I have mentioned I am a believer in joining East/West health practices .. and that all over Europe (even the Queen of England has a Homeopathic Practitioner) people there have always used Homeopathic Practitioners. That I have blessed to find a Homeopathic Practitioner that has also been a practicing Pharmacist for 17 years. Well I finally felt well enough and brain fog lifting enough to think to email her a few days ago. She told me a "remedy" to take that I already had on hand (Homeopathic equivalent to a prescription but VERY gentle and will NOT fight with ANY medical prescription) .. be darn if I don't feel the best I've felt since March 7! YEAH!! So thank you for thinking of me .. trust me .. I feel all the positive energy that ALL my wonderful Forum member are sending me to get well .. and I KNOW I will get there with all that positivity! Hugs to all! Katherine
@beatitnow ....I have not started any meds yet. I'm scheduled to be evaluated at Natl Jewish in May so I'll see what they suggest. Hope your experience with the meds goes smoothly! Jan
@colapyrus, Jan, I am so excited for you that you got into NJ .. great place .. be sure to let us know all you learn after you are seen in May! I'm sure you have lots to add to our pages in the Forum for newcomers .. how all goes well for you .. be sure to keep us posted! Good luck and Hugs! Katherine