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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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Thats exactly what im being told they said it was gone now they saying i have a spot they cant reach and need to do a biospy we find this ver odd what are you doimg about it?
Hi jkiemen. I also took the big 3! I only did 6 months and my scans also showed some some better and some worse. I even had cavities in there. That’s 4 years ago and then I wasn’t being treated until last year. I also have pseudomonas and I am now being treated for that. I am now at at Mayo Clinic and my doctor is great with Mac so I have hope and I don’t always have the best report but I am looking forward to enjoying life whenever I have good days. Mac is still growing slowly in my lungs and I’ll need to treat soon. Hang in there! This is a long journey and with friends in this group it’s is encouraging. I wish you the best! Hugs to you Rita.
@america. Which Mayo Clinic do u go to and who is the doc please?
Hi I go to Jacksonville Mayo!!
@mariierod123 I am proceeding with the biopsy. I want to make sure exactly what it is, what is the best antibiotic etc. My pulmonologist said. MAC makes nodules so this is part of the pattern. I was hoping the pattern would stop with the treatment I have been on already but it didn't happen. He said he it could be a granuloma.
@america Which Doctor? In 2012 I saw Dr. Arunthari there who only prescribed Levofloxacin if my cough got worse and albuterol inhalation (which I stopped because it made my heart race). So, over the years since, I probably took the antibiotic 10 times a year....but I wish we had known that it only treated symptoms and not the bacteria itself. I have suffered with MAC since 2006 and they knew I had it but that's all he did. Maybe that's all they knew to do back then. Haven't been back there since. Just got on the antibiotic regimen this past month following a bronchoscopy revealing nodules, etc. Already feeling much better!
I live in Longwood, north of Orlando. And you?
I have dr leventhal! He knows more than any dr I’ve seen in the past. He gives me choices and he’s very caring! I see him next month and we’ll discuss treatment for Mac! I hope for the best and see what comes up! I also live in the Tampa area so you somewhat close 🙂
@america I have heard he is good. All the best! It will be interesting to hear what he says!
@boomerexpert The problem I am running into is our insurance doesn't cover any really good experts in this field. I suppose I could call the insurance company and let them know what the situation is to see if they would allow other provider. I guess I could go to out of network provider and pay the large copay. Has anyone that is from Wisconsin seen an expert in Wisconsin or has Mayo clinic been the closest?
@jo ann k....l am from near Milwaukee in Wisconsin...,,,the Aurora system infectious disease dr was about to put me on the big three antibiotics after one culture of MAI taken on bronchoscopy.....l had already gone to NJH workshop on NTM in Denver....coincidently was visiting daughter in Denver when the workshop was being held. So I told the ID doctor from Aurora that l was getting second opinion.....lthink there are a few more in this group from Wisconsin...what did they do????
By the way....on the second day of the 2 week scheduled visit to NJH they told me l DID NOT HAVE the infection but my cough and the positive culture was due to
-we in Wisconsin are considered by ATS as hot spot for NTM....it is in soil water and sometimes air
- due to my GERD l had aspirated the MAI from stomach into lungs hence found on bronchoscopy....but no signs of it /bronchiestasis on CAT scan.
I am followed annually and now every two years to be thorough and l have other stuff they follow...tdrell aka terri