1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Granny | @goddard | Aug 6, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

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Would you please post names of tinctures you used, in addition to Devils Club. We have plentiful DC in forest near where I live, and I have made tea from it long time ago , hate the taste pre MAC. I guess I’ll try it again. But I’d appreciate knowing names of other two African ones . Thank you.

REPLY
alleycatkate | @alleycatkate | Aug 6, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

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@clpc. Hi...You should direct your questions towards @pfists. She has been using two African herbs for some time now.

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jaejack | @jaejack | Aug 7, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

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Thank you hydrang3a. I’m so new to diagnosis and antibiotics. Does anyone have an opinion as to if it’s antibiotics or the disease causing the foggines? Both I guess

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hydrang3a | @hydrang3a | Aug 7, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

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@jaejack....I too am relatively new to the diagnosis and to the antibiotics....I’m taking azithromycin, ethanbutol, and Rifampin as well as getting infusions of Amikacin. I’m convinced it’s the medication that’s causing the fogginess and headaches....I’ve also had dizzy spells and fainted. Because I’m not sure what sets off the dizzy spells I’m not driving.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 7, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

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@jaekack, I believe it to be both.

REPLY
heathert | @heathert | Aug 7, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

Jump to this post

@jaejack for me it is the medications.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 7, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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@loveblue, Would love to hear more about the in person support group in Atlanta. Can you tell us more about it?

PS: please note that I removed your personal email. We do this so that you don’t receive unwanted spam and to protect your privacy. We recommend using the private message function to share personal contact information.

REPLY
Jo Ann K | @jkiemen | Aug 7, 2018
In reply to @alleycatkate "@Windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in..." + (show)
@alleycatkate

@windwalker...Hi Terri...My recent research has turned up a very interesting article showing plants in use in other countries that appear to be effective against MAC and TB. You need to click on the PDF to view the entire article: https://www.tandfonline.com/doi/abs/10.1076/phbi.35.2.77.13284 . It is somewhat extensive but if you look at the chart midway you can see the herbs that work on MAC. The one that I am most interested in and I have ordered is Oplopanax horridus (Devil's Club) . There are many corroborating articles written...https://www.ncbi.nlm.nih.gov/pubmed/9392889 and http://kylenorton.healthblogs.org/2011/11/27/the-world-most-popular-herbs-devils-club-oplopanax-horridus-health-benefits-and-side-effects/
Anyway...I am very excited...It is a readily available plant tincture and very reasonable. I put this info out there as an alternative to those that cannot tolerate the antibiotics or for people, like myself, that refuse them. I will keep you posted. Oh...Just did hear from Mayo today that they will NOT work with my insurance so I need to wait till January and switch insurance. Hope you are doing well and feeling good. Thanks for all your hard work. xxoo Kathy

Jump to this post

@hydrang3a Maybe ask for a cardiac monitor to see what is going on there when you are dizzy and passing out.

REPLY
jaejack | @jaejack | Aug 7, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

Jump to this post

That Is wonderful to know! Thank you so very much. I will send u a PM right away.

REPLY
tdrell | @tdrell | Aug 8, 2018

all...see if you can see results of Rare Disease review of Amikacin....I think it looks promising....Sept 28 2018 FDA will consider...tdrell
https://www.raredr.com/news/fda-advisory-committee-votes-in-favor-of-alis-for-treatment-of-ntm-lung-disease-caused-by-mac

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