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

Posted by Katherine, Alumni Mentor @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

@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself… It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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Many thanks. Dog and husband seem to be getting better slowly. Happy Easter

Liked by heathert

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@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself… It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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@macjane Happy Easter Jane. I am glad your spouse and pup are doing better. Mine little dog is still coughing a lot, but is doing a smidge better.

Liked by heathert

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@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself… It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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Hope your Easter is happy

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@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

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nick, how do you thicken your liquid? I just got back from my Dr. and I had new nodules in my right lung. she said is aspiration. Silent acid reflux now I have to thicken my liquid and cut my liquid intake. What kind a probiotic you taking? Thanks! Blessing to all! Cila.

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@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

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@cila if that is what your Dr said you may want to consider taking an xray called video deglutition.  That will determine what level of thickness you need. Then if you aspire liquid they will tell you what level.  You might as well do it right! This is how

I was diagnosed. Go on the web and ask for Video deglutition video.  You will see how the xray is done.  You can also request to get the minimum of radiation in the food and liquid they will use for the xray.

In my case it was the clear liquid so I need to thicken my liquid at the level of NECTAR. I order on the internet SIMPLY THICK it tells you how much to put for a 4 oz so this is how you thicken your liquid.

Probiotic i order the professional probiotic from Dr Ohirrah. Many website sells it but I order directly from Dr Ohirrah’s website because you can talk to a nutritionist for advise.  Those probiotic are also a detox and on the box it says You might have

a bit of diarrhea and I did for a whole month so do not panic with that. It is a normal process. I am taking one before bed and one in the morning. I feel they are the best of the best. 

I also realized that since I take them I feel great and no more slimy in my throat! I also feel my immune system is much stronger fighting all that goes around.

Do not worry you will get better i had xrays also where I had more nodules in the past and my last one was amazing!  Your best energy is for You to decide you will do everything necessary to have healthy lungs again.  You will!

Last summer I also had NAET allergies treatment. 

Good luck and do not hesitate to ask question. You can send me your phone number in the private email and I will call you as soon as we are done moving in our new purchased home in Largo Fl. XxxNICK

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@cmcclure

hello i am looking for information to support my theory that working at prison with hospice patients HIV, TB ect these patients carried this bacteria and by taking care of them treating vent wing, bathing ect I contracted MAC infection , I am have no immune compromising illnesses except maybe the increased stress that came with the work itself… It dam near killed me and I want some one to answer or at least entertain the thought the occupational work attributed to the its cause. Thank you to all and any one that can point me in the right direction it will be sincerely appreciated.

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Hi, @tdrell and @windwalker – I was diagnosed with the Human Metapneumovirus. I'm still having quite a bit of coughing and "stuff" coming up so am calling my doctor tomorrow to see if he thinks I need to be on antibiotics to kick it on out! It's been 3 weeks since I was admitted. Pretty tired of being sick and feeling wimpy. Ready to get strong again! Thanks so much for your well wishes! Linda

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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This is Cathy from Lake Mary Florida. I was on three antibiotics per week for two years minus three months when my doctor retired. I'm seeing one of his partners who is now telling me I need another bronchoscopy to see if I still have Mac with Ct showing I now have the budding of s tree in the other line which means it has gotten worse. I feel I need to increase the mess by going daily or increase mg something to keep it at bay.he told me he would call in a refill for three more months then take me off. I've been off for six weeks I told hi I would just stay off now instead of starting back up and stopping again. I'm looking for a new infectious disease dr that might have a little knowledge of this infection. Do you know of anyone near Seminole county, Florida?

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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My side effects were minimal

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@cathyt Hi Cathy. I highly recommend getting yourself up to the Mayo Clinic in Jacksoville. They are my first choice. Dr. Leventhal has helped me immensely. Closer to home for you is Dr. Layish 407-841-1100 he is registered with NTM.org as a mac specialist. Please let me know if you find a good doctor. Good luck!

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@lindam272, Hi Linda. I was just reading over some older posts of Katheryn's and came across this one to you. Boy, Mamma Kate was layin' it on you hard about finishing your antibiotics. She cared so much about all of us. I miss her……

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@windwalker I really miss her too. 🙁

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@windwalker

@lindam272, Hi Linda. I was just reading over some older posts of Katheryn's and came across this one to you. Boy, Mamma Kate was layin' it on you hard about finishing your antibiotics. She cared so much about all of us. I miss her……

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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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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Absolutely 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.

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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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

Reply
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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HI. 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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