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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by @katemn, Nov 21, 2011

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

REPLY

@egayle187

@jammer…Yes, there may be side effects, but the ID doctors make sure your eyes are checked every month and they do blood work frequently to catch any bad consequences before they become permanent.Your lung damage may be mild enough that the strong antibiotics aren't needed. Get copies of your records and second opinions.Then you can make informed decisions.

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Thank you so much for your words

@jammer

I live in Leesburg in central Fl. I just learned 3 days ago about my MAC he is going to do a bronco next week to get a sample from my lungs to see how bad mine is. My heart doctor found my problem while doing xray of my heart. I have never had any problems so this would not have been found yet if not for my heart doctor. Thank God. My pulmonologist will send me to Gainesville for treatment. This I am so worried about all the side affects. I moved to my dream retirement spot and now I learn Florida is making me sick. Don't that suck. Thanks for the info and God bless you, the doctors don't tell you all so we have to ask questions from those that have been there. Pat

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I recently went to Mayo Clinic in Jacksonville! I saw a really good doctor there and he did a bunch of testing and I was well pleased with my visit. It’s a really great place to go visit and the doctors are amazing. If there’s a way that you go up there and see a pulmonologist it would be good because they give you the best choice of medication. But that’s not the only place to visit. It’s just I waited for so long and I did not want the treatment! But when I join this group I really got helped and I also learned about Mayo Clinic. I am sure it will get a little better every day. Hugs Rita

America — that was a very nice response you just wrote. Down to earth and quite encouraging I would think — for those of us who are a little scared and very skeptical. I went to Mayo's in Rochester three years ago and I feel certain that I would not be here today had I not done that. They continue to work with you through a portal and are very easy to reach when you have a problem. I had been ill for several years prior and no one locally had any idea what was wrong. So….. if you can visit Mayo's I'm sure you will feel 20 years younger and be stepping high when you leave.

Thank you america

@xfirerose Hi there. Welcome to our group. I have never heard of that term 'CVID', but, I know that having immunodeficiencies are frought with all kinds of complications. It is not easy, I know. I, myself, am prone to catching every weird or a rare kind of thing. I have bronchiectasis along with several other lung diseases. I have had mac and pseudomonas. I test negative now. Of mac, since 2013. Of pseudomonas, since 2016. Just know that when you have bronchiectasis, you can be suseptible to these two common bugs. I never did the 'Big 3' antibiotics, but am on monthly maintenance antibiotic regimen. As long as we have bronchiectasis, we will be prone to infections. Or least, that is my understanding of it. What does having CVID entail? What is living with that like?

Liked by america

@jammer

OMG this is so scary, I was just told I have MAC . I live in FLorida and my doctor tells me the spores are in the air, soil even the water. Bad news.

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@jammer Hello. Welcome to our group. I am sorry to hear about your diagnosis. It can be a scary thing; but the more you learn about it; the less scary it is. Unfortunately, Florida is listed as one of the seven 'hot-spots' for mac in our country. I caught mine in Arizona, another hot-spot. Have you had a chance to read about topics on our Discussion Board? It is located on the Mac and Bronchiectasis group home site.There is a post on how people catch mac and then another one on how to avoid infection or re-infection once you are rid of it. If you need help locating that, please let me know. I can tell you this: after you have worked through the natural steps of denial, anger, acceptance, etc. concerning this disease, it will take an attitude 'agreement'. By that, I mean a good mind-set. For me, it was a decision that I was NOT going to be that sick person. (it could be a healthy form of denial). Getting a great doctor is key to treating this infection. In my opinion and that of @alleycatkate, @auntnanny and @america; we think that Mayo Clinic in Jacksonville is THE place to go for the best treatment. How are you feeling now? Are you having many symptoms?

Liked by america

@jammer @windwalker Hello Jammer!! I am sorry about the diagnosis that leads you to this group but you will not find a more helpful and supportive group. I went mentally over the top after I was diagnosed as my doctor gave no information and I did not know the status of my disease and infection. I decided that I needed to go to Mayo and the weight of the world was lifted from my shoulders in consulting with a professional that deals with this on a daily basis. I knew I was getting good information which is of utmost importance. What I did find about my circumstances are that I have mild Bronchiectasis and mild MAC. Since you seem to have little to no symptoms perhaps you are very mild also. It was such a relief to get info on how to go forward and what could be helpful in keeping my lungs healthy. For me, it was very simple…keep antibiotics on hand in case of a flare-up (a 10 day course of one that is not used in the treatment of the big 3) Nebulizing to thin phlegm and keep lungs clean…along with an acapella to help bring up phlegm. I am also paying attention to acid reflux which is a big deal with our disease. We do not need to have anything aspirating into our lungs at night so I am now using a wedge to sleep on and not drinking or eating 3 hours before bed. (maybe a sip of water) That has been helpful in reducing acid reflux. You could have "silent" reflux and be unaware that you have reflux but there is actually testing that can be done to verify that. I am thrilled that so far this is what I am dealing with and am hopeful that maybe your DX after your bronchoscopy may be similar to mine. I would encourage a journey to Mayo in Jacksonville, at least for a second opinion. I am in Vero Beach, FL…the drive and overnight was so worth the peace of mind and expert guidance that I received from the visit. Wishing you good luck on the upcoming Broch and good health. Let us know how it goes, please. Kate

@windwalker

@xfirerose Hi there. Welcome to our group. I have never heard of that term 'CVID', but, I know that having immunodeficiencies are frought with all kinds of complications. It is not easy, I know. I, myself, am prone to catching every weird or a rare kind of thing. I have bronchiectasis along with several other lung diseases. I have had mac and pseudomonas. I test negative now. Of mac, since 2013. Of pseudomonas, since 2016. Just know that when you have bronchiectasis, you can be suseptible to these two common bugs. I never did the 'Big 3' antibiotics, but am on monthly maintenance antibiotic regimen. As long as we have bronchiectasis, we will be prone to infections. Or least, that is my understanding of it. What does having CVID entail? What is living with that like?

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windwalker here is a link that briefly explains CVID. I get immuniglobulins every 3 weeks like Victoria in the story. Now that I have bronchiectasis and MACI am even more susceptible. I live in Las Vegas, NV. MAC is getting more common here. I wanted to go to Mayo in Scottsdale for treatment but my insurance said I can't get coverage there. I have to go to UCLA. I am always anxious about even getting a cold. Things have gotten much worse for me I guess.

@xfirerose

windwalker here is a link that briefly explains CVID. I get immuniglobulins every 3 weeks like Victoria in the story. Now that I have bronchiectasis and MACI am even more susceptible. I live in Las Vegas, NV. MAC is getting more common here. I wanted to go to Mayo in Scottsdale for treatment but my insurance said I can't get coverage there. I have to go to UCLA. I am always anxious about even getting a cold. Things have gotten much worse for me I guess.

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@windwalker I wasn't. able to post the link for CVID. They think CVID is genetic; I am not able to produce much of my own antibodies because my B cells are not working great, so I get antibodies from blood donations once every 3 weeks. Catching a cold can be dangerous or even turn deadly for people with CVID. Similar to bronchiectasis we are very vulnerable to bacterial infectious of the respiratory and gastrointestinal tract. I wear a mask around groups of people and children. I have been hospitalized many times for the wierdest infections. After awhile these infections cause damage.

@xfirerose

I also have common variable Immunodeficiency ,(CVID) as well as MAC. I tried the 3 antibiotics and was not able to tolerate two of them. So I was discontinued. Now my lungs have gotten much worse. My pulmonologist is referring me to UCLA for treatment. I have also developed Bronchiectasis from the MAC infection. I do not know anyone with CVID. Does anyone on this discussion have CVID?

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@xfirerose are you on Immunoglobulin concentrates for the CVID?

@boomerexpert

@xfirerose are you on Immunoglobulin concentrates for the CVID?

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YesI do get immunoglobulins for my CVID. Not sure it is concentrated, probably. I heard it takes many donors for one treatment. I get three small glass bottles through a port in my chest every 3 weeks. It has substantially improved my quality of life and extended my life. It was hoped that it would help me fight this MAC infection. I believe it has slowed the progression.

@xfirerose

@windwalker I wasn't. able to post the link for CVID. They think CVID is genetic; I am not able to produce much of my own antibodies because my B cells are not working great, so I get antibodies from blood donations once every 3 weeks. Catching a cold can be dangerous or even turn deadly for people with CVID. Similar to bronchiectasis we are very vulnerable to bacterial infectious of the respiratory and gastrointestinal tract. I wear a mask around groups of people and children. I have been hospitalized many times for the wierdest infections. After awhile these infections cause damage.

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@xfirerose, Here is a link that I found on NIH. https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency#inheritance

@xfirerose

YesI do get immunoglobulins for my CVID. Not sure it is concentrated, probably. I heard it takes many donors for one treatment. I get three small glass bottles through a port in my chest every 3 weeks. It has substantially improved my quality of life and extended my life. It was hoped that it would help me fight this MAC infection. I believe it has slowed the progression.

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@xfirerose, Hi. I read up about CVID. Gosh girl, that is a rough thing to have. I would imagine having to go in for your three week dose of immunoglobins is a pain in the neck, but thank goodness you have it. I was reading about the freaky genetics of it. That it can be a hit or miss thing genetically, and sometimes have the gene but no symptoms or illness. Sounds pretty fickle to me. Are you able to also be on maintenance antibiotics to keep the lung infections (mac & pseudo) at bay?

@xfirerose

I also have common variable Immunodeficiency ,(CVID) as well as MAC. I tried the 3 antibiotics and was not able to tolerate two of them. So I was discontinued. Now my lungs have gotten much worse. My pulmonologist is referring me to UCLA for treatment. I have also developed Bronchiectasis from the MAC infection. I do not know anyone with CVID. Does anyone on this discussion have CVID?

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@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you were also on the immunoglobin therapy. I never took the 'Big 3', my Mayo dr put me on monthly antibiotics. For 10 days one month, I'd take ciprofloxacin, then on alternating months, I'd take doxycycline for ten days. A yr later I tested negative for mac, but stayed on those two meds for two more yrs to keep the mac away. That was in 2013. I test negative to this day.(I was severely ill) Perhaps you can tell my story to your doctor and be sure to tell him\her that this treatment plan came from a Mayo pulmonologist. I want you to mention that because Mayo physicians are highly respected. They are the cream of the crop in medicine. Without knowing your susceptibility test results to treat mac, my exact two antibiotics may not work for you, but perhaps another pair would. The meds are given alternately to prevent resistance.. One more thing, your dr can call your insurance company and/or Medicare and tell them that they need to make an exception for you to go to Mayo due to you having a rare disease. Sometimes, they can get that through. @alleycatkate was able to flip hers and got into the Mayo. Please keep me posted on what they decide for you

Good morning all, My husband just had a sputum test and once again the results are pseudomonous aeruginosa. This time it is +3. Does anyone know the difference between +1, +2 and +3 pseudomonous? My husband also has MAC but is currently not taking anything because the big 3 caused him to lose quite a bit of weight and get very run down. We see the Infectious Disease and the Pulmonologist doctors next week.

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