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.

Katherine, Alumni Mentor | @katemn | Jun 12, 2017
In reply to @pamelasc1 "Hello to everyone - I just received this as an email...it addresses one of the recent..." + (show)
@pamelasc1

Hello to everyone - I just received this as an email...it addresses one of the recent emails about the need for research. This sounds promising - I did not include the information about funding but of course they need it. Many of you may receive this email as well, but to get more information, I would just go to NTMGene. Pamela

NTM Info & Research
The NTM community has a unique opportunity to be a part of a groundbreaking genetic study, NTMGene.

This project is aimed at helping physicians and researchers better understand the population at risk based on their genetic background and to improve therapies with the future goal of a more personalized medical approach to treatment. NTMGene will study the genetic susceptibility for NTM-related disease and the pharmacogenomics of anti-NTM medications in the U.S.

Meet Dr. Mehdi Mirsaedi, MD, MPH, who has devoted his career to NTM research and is the principal investigator on NTMGene.

Tell us a little about yourself and how you choose your career-path.

I grew up in Iran with a father who had suffered from lung issues which was the catalyst for my many questions about respiratory infections. As early as middle school I was conducting lab experiments in my basement! I graduated from Tehran University of Medical Science and moved to the U.S. in 2006 for my fellowships in infectious diseases and advanced pulmonology. In 2015, I moved to Miami with my wife to concentrate on TB and Non-TB infections.

How have your NTM patients inspired you?

When I was at the University of Illinois-Chicago, I began to see more and more NTM patients. They were often female, older, tall and thin. I couldn't answer their cries of 'Why me?' which inspired me to continue to focus on the mystery of NTM-related disease. Why are some patients more susceptible to this infection? How do we get diagnoses tailored in the right way so therapies can be more effective?

How will NTMGene benefit those with NTM-related disease?

The prevalence of NTM-related disease is on the rise in North America in people older than 50 years of age - and the population is aging. NTM exceeds that of tuberculous but the why, when and how the infections occurs and to which patients remains largely unknown.

NTMGene is the only known study that will focus on the genomics of NTM-related disease on a national level. We need improved diagnosis and therapies but we still do not understand who is at risk. I believe NTMGene will provide a critical puzzle piece in that mystery. Knowing the genetic predisposition and pharmacogenomics will aid in superior treatment for this disease. And, this data will be a unique contribution to NTM science as a whole.

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@pamelasc1, Pamela, I signed up and donated .. IF this can help sure would be happy! Hugs to all! Katherine
https://www.ntminfo.org/

REPLY
terryb1 | @128128terry11t | Jun 13, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

Just wondering if the sputum is green does that always mean that there is definitely active NTM? Would it make a difference if green intermittently versus consistently? Thank you as always. Terry

REPLY
chinasmom | @chinasmom | Jun 13, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

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KATHRINE, My sputum report from this February had pseudomonus and my doctor did not inform me i saw it when the lab released it. When i asked about it they said they wouldnt treat it. So i sent him the research i had found. It took them 3 weeks before they decided to treat it with cipro. I waited another week because they called it in to mail order pharmacy. I mentioned to the form on march 14th that i was pleading with the doc to treat this and your reply to me was not to plead with my doc because the pseudomonus was normal and they dont always treat it. That cipro did not help. We were going through the same thing at the same time. They won't order another sputum culture. I did have a ct scan on May 15 . I brought with me my previous ones to give to the person doing my test and i reqested a copy of my new scan and report. They would not have a report til the next day. I saw my dr immediately following and he was looking at my scan and said there was improvement. So that was good news. But when i got the report the next day it was worse. There were more nodules, bigger nodules and swollen lymphnodes. He neglected to mention any of this. He is not monitering anything while im taking the 3 antibiotcs. My last sputum test was in Feb. and taking the cipro for the pseudomonus was a waist of time. So frustrated and so sad!
Becky

REPLY
Katherine, Alumni Mentor | @katemn | Jun 13, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

@chinasmom .. Becky I can ONLY speak from personal experience. When testing was done for my Pseudomonas .. it came back that the prescription I was given for Cipro was a TOTAL waste of time as my Pseudomonas was "RESISTANT" to CIPRO!! Becky, I would suggest you do your OWN research. I did my OWN because I got so very sick. I am now on 28 days of inhaled Tobramycin .. off 28 days .. for 3 cycles for a total of 6 months. I am NOT a doctor .. all I can say is I have learned from my personal experience that I was NOT my own BEST advocate .. DESPITE telling all of you to do so! So Becky .. educate yourself .. make SURE you have a GOOD Infectious Disease doctor who will LISTEN to your concerns .. discuss your concerns with you UNTIL you understand WHY/WHEN you will/will NOT receive treatment for the Pseudomonas .. if THAT happens .. THEN let go .. relax .. do all you can to be healthy and HAPPY! Hugs to you! Katherine

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

Becky .. some of my notes:
**Dr. Aksamit said that Pseudomonas Aeruginosa can be treated but like MAC cannot be cured. In my case that the Pseudomonas Aeruginosa bacteria had probably been in my lungs long before it showed up on my 11/9/16 report but just like MAC shows up on a culture report from "MAC FEW" to "MANY" to "COLONIES" (depends on where in the lungs that particular sputum culture came from!) the Pseudomonas Aeruginosa bacteria is the same. The Pseudomonas Aeruginosa can lay low until it shows up enough in a culture to be considered "PROMINENT" and should be treated.

**The effect of Pseudomonas aeruginosa on pulmonary function in patients with bronchiectasis http://erj.ersjournals.com/content/28/5/974 It is not known whether infection by P. aeruginosa is a marker of disease severity or contributes to disease progression. Although P. aeruginosa can be isolated intermittently in bronchiectasis, once it becomes a chronic infection it is rarely eradicated, despite intensive intravenous antibiotic therapy 1, 9. Chronic infection is associated with more extensive lung disease and more severe airflow obstruction 10, but it is not known whether P. aeruginosa is simply a marker of severe disease that has occurred due to another cause or whether it contributes to disease progression. ** However, in bronchiectasis, the severity of the airflow obstruction is not as severe as seen in COPD, where cases usually have FEV1 <30% pred. P. aeruginosa has a high affinity for mucus, and it is possible that impairment of mucociliary clearance and cough clearance, which occurs in bronchiectatic airways due to mucus hypersecretion, increased mucus viscosity and loss of cilia, predisposes to the colonisation 2. Another possible factor is antibiotic treatment, which may be given more frequently in bronchiectasis and drive the airway bacterial flora towards the more antibiotic-resistant P. aeruginosa.

**
http://www.medicinenet.com/script/main/art.asp?articlekey=20161
Pseudomonas aeruginosa has become an important cause of gram-negative infection, especially in patients with compromised host defense mechanisms. It is the most common pathogen isolated from patients who have been hospitalized longer than 1 week, and it is a frequent cause of nosocomial infections. Pseudomonal infections are complicated and can be life-threatening. Signs and symptoms Pseudomonal infections can involve the following parts of the body, with corresponding symptoms and signs: Respiratory tract (eg, pneumonia). http://emedicine.medscape.com/article/226748-overview
https://www.cdc.gov/hai/organisms/pseudomonas.html How are Pseudomonas infections treated? Pseudomonas infections are generally treated with antibiotics. Unfortunately, Pseudomonas infections, like those caused by many other hospital bacteria, are becoming more difficult to treat because of increasing antibiotic resistance. Selecting the right antibiotic usually requires that a specimen from a patient be sent to a laboratory to test to see which antibiotics might still be effective for treating the infection. Multidrug-resistant Pseudomonas can be deadly for patients in critical care. An estimated 51,000 healthcare-associated P. aeruginosa infections occur in the United States each year. More than 6,000 (13%) of these are multidrug-resistant, with roughly 400 deaths per year attributed to these infections. Multidrug-resistant Pseudomonas was given a threat level of serious threat in the CDC AR Threat report.
NOTE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4243435/ ** infection development, P. aeruginosa gradually shifts from an acute virulent pathogen of early infection to a host-adapted pathogen of chronic infection. ** in particular ciprofloxacin, are the most used. However, ciprofloxacin usage is somewhat limited due to the rapid emergence of resistance. As a solution, ciprofloxacin is frequently combined with other antibiotics through other routes of administration. Combination of inhaled colistin or inhaled tobramycin with oral ciprofloxacin has been used successfully. ** The biofilm-lifestyle represents a reservoir of high phenotypic diversity and it is considered one of the most important adaptive mechanisms of P. aeruginosa within sputum. ** Until now, it is not clear what time bacteria after airway colonization switch to sessile lifestyle, but it is known that biofilm formation enables bacteria to successfully establish chronic infections. Presumably, P. aeruginosa form biofilms in response to stressful conditions including microaerophily and/or antibiotic treatments.

http://www.bbc.com/news/health-16645957 Pseudomonas is a common bacteria that's found in soil and water. Because this condition is rare, it may take some time to get a diagnosis. How is it spread? The usual route is through contaminated hands or medical equipment such as catheters and feeding tubes. (or Salt Induced Sputum Cultures?)
While mortality from the infection varies depending on where the infection is, how soon it is treated and the underlying weakness of the patient, some studies suggest a third of infected patients may die. The bacterium appears to have an inbuilt resistance to antibiotics, as well as the ability to mutate into new, even more resistant forms.
It is difficult to treat people with Pseudomonas infections. The bacteria have long been notorious for their resistance to antibiotics. More recently, scientists have discovered that individual Pseudomonas bacteria differ considerably from one another, meaning we are not necessarily fighting a single foe. The bacteria's genetic make-up differs, as does their virulence - their ability to cause disease. Some strains seem particularly good at spreading from one person to another, resisting antibiotics, surviving in the environment, or even causing death. They are also constantly evolving. In this project, researchers are studying the genetic differences between a wide spectrum of different Pseudomonas aeruginosa bacteria. They are identifying and sequencing sets of genes that enable the bacteria to cause serious infections in man, and studying the role of these genes. They aim to emphasise the enormous genetic diversity between different Pseudomonas bacteria by studying strains collected. https://www.action.org.uk/our-research/secrets-superbug-what-makes-pseudomonas-bacteria-so-deadly

REPLY
boomerexpert | @boomerexpert | Jun 13, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

I will respectfully disagree with this particular set of docs. Thus far, the compilation of research shows that the best way to determine not just the existence of an NTM but the specific type (of the thousands they now know exist) to determine more accurate treatment, is a bronch. I'm glad my doc did one immediately rather than waiting for the whole sputum thing which can be inconclusive at worst, less informative at best, to learn more quickly of my dx. As it takes mycobacteria up to 2 months to grow in the lab, waiting that long for sputum results without then knowing the specific strain seems to me a waste of valuable time.

REPLY
Katherine, Alumni Mentor | @katemn | Jun 13, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

And @boomerexpert, I respectfully disagree with you since Dr. Timothy Aksamit of Mayo Clinic, Rochester Mn has used successfully the Sputum Culture process .. UNLESS a patient is unable to produce sputum .. WHY? Because mycobacterium does NOT grow within our lungs that quickly. The process of a bronchoscopy is an invasive surgical procedure requiring anesthesia. Research shows varying degrees of danger for older people with anesthesia. "Research paints a complex picture of how surgery and anesthesia might harm the brain, particularly for older patients." Anesthesia and the Elderly Brain - Scientific American
https://www.scientificamerican.com/article/anesthesia-and-the-elderly-brain/
Personally I will continue to agree with Dr. Timothy Aksamit of Mayo Clinic, Rochester Mn and less invasive diagnosis. Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jun 13, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

@128128terry11t Terry, do you have Bronchiectasis as well as MAC? Hugs! Katherine

REPLY
chinasmom | @chinasmom | Jun 13, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

Katherine, Is this really the first time you have seen them? I have been advocating for people to watch them for at least 6 months. They are the best information out there to date and its free education. We all need to see this. I've seen 2 year's worth 2015 and 2016. I started to re -watch all of them so i can start , stop, and take notes. Im glad you have found them. Make sure you watch them all. Thank you for all you do for connect and glad you are feeling up to it. Stay strong everyone!
Becky

REPLY
terryb1 | @128128terry11t | Jun 13, 2017
In reply to @katemn "Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research? I..." + (show)
@katemn

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

Jump to this post

Yes I have both bronchiecstasis and MAC. Hugs back, dear Katherine. Terry

REPLY
chinasmom | @chinasmom | Jun 13, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

Jump to this post

Katherine, Thank you for sharing your experience and all of this great information on pseudomonus. i keep saying to myself put your connect away, you have other things you have to do ! So i better do something else for now. Im still working on my appeal to the insurace for medication though I feel like a nap instead. Hope you are having a good day!
Becky

REPLY
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