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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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:
- 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!
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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
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
@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
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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.
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http://www.medicinenet.com/script/main/art.asp
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
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2 ReactionsI 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.
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
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1 Reaction@128128terry11t Terry, do you have Bronchiectasis as well as MAC? Hugs! Katherine
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
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2 ReactionsYes I have both bronchiecstasis and MAC. Hugs back, dear Katherine. Terry
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1 ReactionKatherine, 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
@128128terry11t, Terry, I was JUST researching for myself .. Hope you find it helpful! But I WILL say .. I ignored green sputum .. AND perhaps it was a sign of Pseudomonas?? PER my File Cabinet: Common signs and symptoms of pseudomonas include shortness of breath, fever, chills, increased heart rate, decrease appetite, malaise, systemic inflammatory response, productive cough, increase sputum production that may have a yellow-green pigment, is thick, and usually foul smelling. Really do not know .. if I was sitting in your shoes I would request that it be checked out! Bronchiectasis OR Pseudomonas. Hugs! Katherine
Also from my File Cabinet on Bronchiectasis:
BRONCHIETASIS-SYMPTOMS OF
Symptoms of bronchiectasis http://www.nhs.uk/Conditions/Bronchiectasis/Pages/Symptoms.aspx The most common symptom of bronchiectasis is a persistent cough that brings up a large amount of phlegm on a daily basis. The phlegm can be clear, pale yellow or yellow-greenish in colour. Other people may only occasionally cough up small amounts of phlegm, or none at all. Other symptoms may include: shortness of breath wheezing coughing up blood or blood-stained phlegm chest pain joint pain clubbing of the fingertips – the tissue beneath the nail thickens and the fingertips become rounded and bulbous Signs of a lung infection If you develop a lung infection, your symptoms usually get worse within a few days. This is known as an infective exacerbation and it can cause: coughing up even more phlegm, which may be more green than usual or smell unpleasant worsening shortness of breath You may also: feel very tired cough up blood, if you haven't already done so experience a sharp chest pain that's made worse when breathing (pleurisy) feel generally unwell When to seek medical advice If you haven't previously been diagnosed with bronchiectasis and you develop a persistent cough, visit your GP for advice. While persistent coughing may not necessarily be the result of bronchiectasis, it requires further investigation. If you've been previously diagnosed with bronchiectasis and you begin to experience symptoms that suggest you have a lung infection, contact your GP. You'll usually need treatment with antibiotics. Some people with bronchiectasis are given a stock of antibiotics as a precaution, in case they suddenly develop a lung infection. When to seek immediate medical advice Note Some people with bronchiectasis develop a severe lung infection that may need to be treated in hospital. Signs and symptoms of serious lung infection include: a bluish tinge to the skin and lips (cyanosis) confusion a high temperature of (100.4F) or above rapid breathing (more than 25 breaths a minute) severe chest pain that makes it too painful to cough and clear your lungs If you experience any of the above, phone the healthcare professional in charge of your care immediately. This may be your GP, a doctor who specializes in lung conditions (pulmonologist) or a specialist nurse.
AND https://bronchiectasisnewstoday.com/2017/04/13/nine-common-symptoms-of-bronchiectasis/