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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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@heathert, Hi Heather. I have re-posted this article. I think the chart is in the second to last paragraph. If you can, print this and show it to your doctor. The saline is not pnly about the mucous.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/

Liked by heathert

@windwalker

Got great news today! Got my sputem test results back today; NO significant presence of any mycobacterium or fungal things growing.

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Has anyone seen the video yet from the NTM World Conference?

@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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Thanks for taking the time to find and post these articles, @alleycatkate. I appreciate it.

@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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@colleenyoung, @alleycatcate, @pfists, Good point that Colleen brought up. Always let your physician know what herbs and suppliments you are interested in trying. Not all things combine well. One can even cancel out the other.

@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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@windwalker
Yes I have discussed the herbs I am taking with my pulmonologist.
He was "ok" with them. I'm pretty sure he thinks after a year and half of negative mycobacteria abcessus results that they are possibly the reason. But at the time I told him I'm not ready for the big gun antibiotics yet and wanted to try these herbs.
But every case is different and you should check with your Dr.
According to the my book "Herbal Antibiotcs" and web searches there hasn't been any negative side effects to the two I use by anyone yet.
But that doesn't mean that there can't ever be negative side effect. Also if your using any herbs I would recommend to make sure you use a supplier you can thoroughly trust. My herbs have been checked by a third party lab to make sure what is on the lable is exactly in the bottle.
If You have used antibiotics and they failed to work on your MAC it seems reasonable to give these a try to me.
Take care everyone!
Shari

@boomerexpert

Good news for those who have failed with standard treatment…will not be used for all else, however. And…NTM's ARE NOT RARE!!

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Astonishingly, I can't get Rheumatologists to understand the importance of ordering a simple chest xray in addition to the usual TB test, prior to putting their patients on immuno-suppressing biologics (eg Humira, etc.)… it's not yet protocol so they look at me blankly when I urge them to do it…sigh…

@boomerexpert

Good news for those who have failed with standard treatment…will not be used for all else, however. And…NTM's ARE NOT RARE!!

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@boomerexpert
Your so right about checking your lungs before and while on humira.
I was put on Humira 8 years ago with devasting results to my lungs. It was the beginning of all my trouble with infections. The first one Of Pseudomonas just about killed me before they figured out it was the humira. Then I got bronchectasis as a result and it was pretty much all down hill from there.
Shari

@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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@pfists so sorry if you've already provided, but which herbal antibiotics are you taking?

@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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Hey everyone…please keep in mind that the vast majority of traditional medicine docs know little to nothing about other-than-RX-treatments. And few are interested in learning about them. Best bet is to find a great alternative medicine practitioner for guidance.

@windwalker

Got great news today! Got my sputem test results back today; NO significant presence of any mycobacterium or fungal things growing.

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Terri, thanks for this information. I'm going to look into it.

@windwalker

Got great news today! Got my sputem test results back today; NO significant presence of any mycobacterium or fungal things growing.

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thanks @windwalker for that information, very interesting. I have emailed it to my Dr and await her reply. What would I do without you!

@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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@boomerexpert There is a lot of truth in that statement. That is why I implore that people who are seriously infected seek treatment at a non-profit research medical facility. (like Mayo, NIH, Cleveland, etc.) because they are cutting-edge with up-to-date info. Anti-biotics do not work for everyone, so it is nice to have Alternative medicine as another avenue.

Liked by tdrell

@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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@boomerexpert, I did buy some Ashwagandha yesterday.

@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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Good. May your adrenal fatigue be no more now!

@windwalker

Got great news today! Got my sputem test results back today; NO significant presence of any mycobacterium or fungal things growing.

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@america, Hi! How did the nebulized saline go?

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