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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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@windwalker - Terri, I didn't even have to look back at the posts! I remember her reply very well! She did lay into me big time! I sure miss her so much. I am deeply grateful to her for the information she shared that helped us through the rough spots and for the backbone I grew in learning how to advocate for myself and my health. Love you, Katherine! Linda
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2 ReactionsAbsolutely you must have a doc....either pulmo or ID...who fully understands MAC! Best is to find well regarded docs then call the office of each and ask about their knowledge of MAC. I find that the front line staff know immediately.
Here is a post of Katherine's from last January that I kept. Also, I know she made a checklist of questions to ask because I used it once. I can't find it in my file cabinet now, but I would bet it's in the first 30 pages or so of this forum. Linda
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These are the notes I have made on finding a good doctor .. good luck! Hugs! Katherine
INFECTIOUS DISEASE DOCTOR
1.GOOD Infectious Disease doctor locally. Just google it
2. call the various offices .. ask to speak to a nurse .. ask 'How many MAC patients has your doctor seen in the past 12 months?' If a NURSE in the office does not even KNOW what MAC is .. that is a pretty good tip off that office does NOT treat MAC patients!
3. Request an appointment with the BEST ID doctor locally you can find
4. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
5. Having read ALL the back pages of this Forum .. done your 'due diligence' .. educating yourself .. you will NOW have a LONG page of questions and will KNOW exactly WHAT the ID doctor SHOULD be doing for you .. or NOT doing.
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1 ReactionHI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with MAC and Bronchiectasis. She lives in Ocala, FL and we are trying to decide where to take her for further care. Her current pulmonologist wants to refer her to the University of Florida - Shands Hospital because they have a micobacterial clinic there. I have been reading the reviews from previous patients and their biggest complaint is the lack of communication between doctors. That's a pretty big flag for me. I wonder if anyone could tell me their experiences with Mayo. If you need a Pulmonologist and and Infectious Disease doctor and a Rheumatologist do the doctors work together? I should also mention that we are considering going to the Mayo Clinic in Jacksonville, FL
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1 ReactionThank you nick, I really appreciate your advised. I check the video and get the x-ray done. I noticed when eat bread get a lot of mucus. the mucus is on my throat I though mucus is coming from lungs. Anyway, I'm trying to clear the mucus and also I get so tired easy. Thanks again and Blessing to you. Cila
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1 ReactionI do know that the doctors in Rheumatology, and Pulmonolgy do work together at Mayo in Jax.
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1 Reaction@cila Cila if you feel tired it could be your lungs. Have you tried Clear Lungs from Ridgecrest to see if it help you breath better and if it reduces your mucus. I used the blue bottle to Relieve congestion, Support free breathing, keep Airways open and Balane
mucus levels. When I had a lot of mucus in my throat I was using And didn’t breath as usual I was taking Clear Lungs until I felt better. Do you feel you have stomach Acid. My Dr infectiologist told me that when you have a lot of acid reflux it can cause
mucus and that mucus gets to the lungs to cause bronchectasis. Do you have to take acid reflux med. if so you need to change your diet for non acid food so no fried food, no sugar, no milk product etc. You must detox your liver also. My Dr recommended Milk
Thistle from Hübner ( the brown bottle that can be ordered on line) Take it as prescribed and do that until your mucus is almost gone. If after a month you don’t see a difference then you may consider another option. In my case I saw a big difference. Now
if I have fried fish (as a treat) I take some right after my meal. It is a very complicated problem but when it is under control and you keep it that way, you have no more problem. You feel normal again. Do what needs to be done! Get rid of bad habits.
Kiss! Kiss! Nick
Go to Mayo... nothing good around here... I'm in Palm Harbor
Hello @sandysupermom, I have MAC (for the second time) and Bronchiectasis. I live in Ocala too. My first pulmo was in Jax but when we moved to Ocala, I transferred to UF Health Gainesville. My new doctor now is pulmonologist with a subspecialty on non-CF Bronchiectasis. I have been seeing him since October 2017. Based on what I see, so far, he has a wide knowledge about the my conditions.
I also see a Rheumatologist at UF Health. He is the head of the rheumatology dept. He has a team of Pulmonologist and Infectious Doctor. (i got my pulmo ahead of the rheumy so was not able to get into his team’s care.) So far, I am happy with my pulmo. I
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1 ReactionHas he recommended treatment with the 3 antibiotic regimen or does he have other treatment recommendations.
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