(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

@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@jkiemen
Jo ann
I had two CT scans this year the second showed improvement. The Dr didn’t want to treat yet because second CT scan wasn’t bad enough. But the first one I had my doctor was alarmed and sent me to Mayo clinic. So I guess I have improved. Doctor said I haven’t showed a posituve sputum for NTM since May and I was previously showing the bad one mycobacterium abcessus.
Im taking one teaspoon of the two herbs together 2-3 times a day. He recommends one teaspoon to one tablespoon 3-6 times a day. So Im on the lowest dose now. I worked up cautiously watching of any side effects even though there are no recorded side effects from other people.
Hope this helps!
Shari
@pfists

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@pfists, what herbs are you taking teaspoons of? Are you seeing a homeopath dr? How often are you getting your follow-ups on the abscessus?

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@nick52, No, I have not taken the BIG 3 antibiotics. A doctor tried to put me on them in 2005, but I declined. I felt like my body was too fragile to take them, plus they don’t cure this, they only knock it down to tolerable levels, and then, you catch it again. I did start a regimen of antibiotics in 2003 of taking cipro for 10 days one month, and then 10 days of doxycycline the following months, I alternated like this for three yrs. I feel like this route was less harmful than the BIG 3. Then I was switched to the cipro one month and then tobramycin the next because I got infected with psuedomonas. I have been on that alternating cycle since 2016. I started my antibiotic cycles at the Mayo Clinic in 2013: and my health has improved SO much. My quality of life has greatly improved. I am still very short of breath due to working with only 40% lung function. So far, my dr says we have stalled the progression of deterioration that was going on in my lungs. Now, I do the nebulized saline treatment twice a day. This is for good lung hygiene. Now, back to the antibiotics. My dr suggested that I try to stretch out the days in between my alternating cycles. That is what I am doing now. I can tell when I need to start the next cycle because my lungs will start to produce phlegm and get crappy.

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@windwalker
Hi Terri
I was referring to a previous post I made.
The book is Herbal Antibiotics Stephen Bruhner. I have taken criptolepsis and biden for 9 months.
The book talks about antibiotic resistant infections Mac, pseudomonas, mersa, and a dozen others. Explains how antibiotics aren’t working the way they used to from over use in humans and in the animal’s we eat. We have just created more resistant infections. For reasons explained in the book these herbs continue to work when antibiotics may quite working.
I see a alternative dr plus I have seen Infectious disease last week pulminology next week I just had a bronchoscope three weeks ago . I have also consulted with Mayo Clinic last month. So I’m doing a lot of due diligence.
I don’t recommend that anyone take the herbs instead of antibiotcs of if you are told to start antibiotics to try herbs instead. You need to work with your doctor on a plan best for you.
I was told not to start antibiotcs as of yet. My pulminologist wants to do broncoscope 4 times a year to help keep me cleaned out.
If you are told not to take the antibiotics yet or if antibiotics quit working for you the herbs may help.
Some do have some side effects also so do get informed first.
Take care ❤
Shari
@pfists

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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Dose it come in a large bottle?

Jo Ann K

 

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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Dear Windwalker,

Ouf! That is quite an experience having that disease. I had no symptom before I had a big pneumonia when I had a breast tumour malign without knowing I had in 2009. I didn't think that MAC was so devastating! I do not have any bad

symptom yet but gee! That could very well be coming. Thanks for sharing your experience.  Since 2009 my lung specialist does a CTscan at least ones a year. I feel that is a lot of radiation.  My last CTscan was very good no progress. I have taken since this

January Clear Lung and my Ctscan was great.  I have taken them on and off.  My main problem was the mucus in my throat and sometimes I feel the cause is the food I eat not the lungs. My specialist for bacteria says it is the MAC so I don't know. Since I had

the NAET the mucus in my throat was 80% better. Then Last Friday My lung dr did a bronchoscopy even if my CTscan was good. Now I do not have any mucus anymore at all and no sputum but it is only 5 days since. We have to wait and see.   I have never cough much

it was the mucus in my throat the big problem. My last breathing test was 94 apparently it is very good! 

I didn't know the big 3 as you call it wasn't a cure. It is only to control or try to control it!  Have you read the book pfists talk about on antibiotics and bacteria by Dr Steven …

Tahnks again for sharing!

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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Dear pfists,

Let us know how things goes.  I check on google to find the book herbal antibiotics and can't find it on the web.  You wouldn't have an address where I could order the book. Thanks Nicole

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@nick52
The Author is Stephen Harrod Buhner

“Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria”
It can be found on Amazon…
Sorry I didn’t give its full name the first time.
Shari

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@joan912

My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won’t take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.

He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn’t need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn’t seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I’m afraid to ask for another pulmonologist at Kaiser, because I’m afraid they will back each other up, or at least not contradict each other.

Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn’t work). I simply cannot do so, since I have no backup for my job. I’m willing to travel to one place, maybe Mayo Clinic in Rochester, MN.

If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?

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I have an question.  I know that hot tubs are a no-no with bronchiectasis/mycobacterium abscesses. But is an indoor pool for exercise a no-no too??? I have a friend who has invited me to do jazzercise in the pool. I told her I would have to let her know if I could do it with this lung disease.  I hope someone knows the answer. 

Thanks, Lisa @tutti

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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I still think is it ashamed that there is so little research and progress in finding a better treatment that we have to resort to finding alternatives ourselves.

How do we get the word out there? Is this a reportable to State Public Health Departments, the CDC etc. If not, maybe it should be. That was more attention

will be focused on this and hopefully more research in treatments.

Jo Ann K

 

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@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

Liked by joan912

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Pfists…thanks for sharing this….l wonder if they will try on those with MAC type of NTM? TDrell

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@tdrell
It should work on the aviam type if it works on the abcessus type I would think for sure.
One article states that it should work on all the co infections that come with NTM such as pseudomas and fungus and bacterias in general.
Shari
Pfists

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@pfists

@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

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Hopefully this will be useful for people with MAC. This seems to be much less intensive than the Big 3 antibiotic treatment, and perhaps, even more successful.

Liked by pfists

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@pfists

@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

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Glad to see an entity in the US is taking this up…research on it has been ongoing for years in the UK.

Liked by pfists

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