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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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@cindyrnc, is your name Cindy .. first names are more personal! Cindy, what a tough time you are going through! Your situation is complicated AND it sounds like you are NOT receiving medical care/advice that you are comfortable with .. SO I really like the advice given by @tdrell .. Terri
to contact Nationaljewish.org
From my File Cabinet:
JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional.
FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH......for the first 50 years of their existence....1898 til 1958 they did not charge clients..I am on Medicare....they accepted it fully....3 months after my trip....l have yet to see a bill....they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true....but it is there to help people. l beg you to contact them to check
From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card......no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests....especially as they were added.
Another option is our world renowned MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63
Cindy, I am sorry you are upset .. that is a tough place to be in .. BUT upset is also a place of loss of power. Cindy we here on our Forum have found that "KNOWLEDGE is Power" .. I would strongly suggest that you read the past pages of this Forum .. Why? BECAUSE Knowledge is Power and not only will you learn about our shared Mac disease .. but you will ALSO learn about doing your "Due Diligence" .. being your OWN Best Advocate .. Oh so many things .. PLUS you will find a wonderfully supportive Community of people who will be there for you every step of the way! Keep coming back Cindy .. we will be here for you! Many hugs and positive energy! Katherine
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3 Reactions@cindyrnc - I too have the RA/MAC/bronchiectasis trifecta. I've not been on biologics for over a year, and doing fine. For a while it was Kenolog 40mgs every other month...started on 80/quarter. Full disclosure, I'm factor negative but hands are deformed...feet trying to follow. If Plaquenil (+ the 40 mg Kenolog) hadn't made me queezy, was working well. I'm also retired so no need to be that level of functional, but doing just fine. And loving retirement BTW!
I wouldn't want to be on a biologic w/MAC...rather find other ways to treat the RA then deal with worsened MAC.
I'm currently on 100mg of CBD oil 2X daily, and take White Willow Bark 650mg/twice daily, and my RA is managed well.
See a pattern here? There's options, including natural remedies, to manage your RA...only one for the MAC that personally I'll avoid as long as possible.
If you like the Rheumy, stay with him. He's right, ya' know.
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1 Reactionboomerexpert.....if the RA markers were negative...what did the Rheumatologist use to determine you had RA?? Xrays of the painful joints? I ask cause for past few months, my hands and hip joints (both replaced for osteoarthritis) and big toe joints are extremely painful all day long. RA blood tests negative. Rdrell
Hi all, It really interests me that so many of us have a multitude of health ailments, not just MAC/Bronchiectasis. It's interesting as well the number of people that specifically have RA (I haven't been diagnosed yet at this time but my dr's feel that it is likely) with MAC...which makes me believe that somehow this is all connected.
I listened to the part 1 of the MAC Conference (from D.C.) last night. I had a little difficulty hearing all of it clearly. The epidemiology part was quite interesting to me. They don't necessarily have the answers to why their data shows what it does, in terms of things such Hawaii having the largest prevalence. Trying to understand why some people "get" MAC as opposed to those that simply exhale "it" back out...other than reasons we know of, such as having excess mucous to "catch" & "hold on to it". I'm not speaking very scientifically here & I apologize, especially seeing that I'm an RN. That being said, it's one thing to be a nurse, it's another thing to be the patient!!! It's a whole another ball game! I'm sure your conversations have gone over these topics before & I still have yet to get through all of the back log of posts since I started being apart of the group (I try to do it a little bit every now & then).
Anyway, I was just thinking out loud... I look forward to listening to the rest of the Conference.
Best,
Jen
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1 Reaction@windwalker, Terri I am answering you on the Main Forum because the info on your salt treatment is REALLY good info to have on our Main Page .. PLUS I am just SOOOO excited for you!! YEAH!! You are SUCH a trooper .. one of my personal heros with your oxygen tank at the gym etc!! You absolutely deserve every single good thing that happens for you!! I am so very proud of you!! You go girl!! I am sending you one BIG hug! Katherine
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update on my recent Mayo visit.
Posted by @windwalker, 5 minutes ago
Hello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn’t sound like much, but 4% in the other direction (down) starts to put me in the lung transplant category. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistently losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!
I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs – Terri M.
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2 Reactions@katemn
BIG Hug received!
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1 ReactionI think the ailments that lower the defense of one's immune system could possibly make the person more susceptible to MAC. Again, I'm not a doctor. Just seem to remember reading about this somewhere.
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2 ReactionsTerri - That is awesome and so encouraging! It's good to know that we can make improvements in our lung function. I would be happy for any amount of improvement! I was doing saline treatments 2x a day and cut back to once a day a couple of months ago as the amount of mucous was reduced from taking the antibiotics; however, I think I should probably do an afternoon treatment just to keep things cleaned out better. You have given me motivation to do that. Thanks so much for sharing! Linda M
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1 ReactionHello! I left my Mayo visit on Tuesday on cloud nine. I found out that I had raised my lung function to 44%, up from 40%. My Dr was totally AMAZED since I suffer from a progressive disease. We figured it was due to the antibiotic and salt treatment regimen and my cardio classes. He said that 4% doesn't sound like much, but 4% in the other direction (down) starts to put me in the lung transplant catagory. Mainly because it would mean I am still steadily progressing downward. I cannot tell you how disheartening it has been; to go to my check-ups every six months and be told that I am consistantly losing lung function. I had said to my husband when I joined the gym six months ago that I was going to amaze my doctor, and I DID!
I asked about the new drugs that are in trials right now, and he said he expects them to be approved and out within six months to a year Hooray!!! I do know that the inhaled Cipro is one of them. I forgot the name of the other, but it is one that was mentioned at the NTM convention. He said that staying on the salt treatments is critical to keep good lung hygiene. Those of you doing this, stay with it. Those of you who are not, ask your dr to prescribe it. Hope everybody is doing well. Hugs - Terri M.
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2 ReactionsI got a call today from the Rheumatologists office. The pulmonologist said I can stay on the Humira. I have minimal deformities because with the Humira it prevents inflammation by blocking the cytokines that cause the damage in the joints. I'd rather deal with the Bronchiectasis than a major RA flare-up. When I have flare-ups I can barely get out of bed and haven't had one in a few years.
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