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 | Jul 5, 2017
In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

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@imeehaigt .. imee you said "I noticed a blood in my sputum I got alarmed again" .. I can only tell you .. the first time I spoke with my Mayo doctor about coughing up blood .. he REALLY did not react much at all .. his response "What was the quantity .. a quarter cup .. a tablespoon .. a teaspoon?" Hmmm! Mine was merely at different times a blood clot perhaps the size of less than a dime .. and/or the sputum MIXED with blood .. NEVER the quantity he was speaking of! So my question to you is judge by the quantity of blood and the frequency. Then evaluate from some of the information I am going to give you below from my File Cabinet. Keep us posted .. let us know what your thoughts are after you have evaluated. Hope you find this helpful! Hugs to you! Katherine

1. BLOOD/BLEEDING- BRONCHIECTASIS Coughing up of blood (hemoptysis) is common because the damaged airway walls are fragile and have increased numbers of blood vessels. Hemoptysis may be the first or only symptom of Bronchiectasis.

2. From Member @colapyrus, Jan I have also had hemoptysis (Hemoptysis is the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs) – several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe) then go to a hospital with intervention radiology. They can stop the bleeding by ‘plugging’ the blood vessel. Just wanted to pass that on.

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Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @imeehaigt "Just last Sunday I did exercised at home and did my daily deep breathing excercise. As..." + (show)
@imeehaigt

Just last Sunday I did exercised at home and did my daily deep breathing excercise. As Ive said before its been over a month that I stopped producing sticky phlegm since I started to excercise everyday. When I cleared my lungs and tried to expel sputum I noticed a blood in my sputum I got alarmed again and was thinking of taking anti biotics. I am pretty sure that I dont have lung infection since I can always feel if there is an infection I usally smell something different or have difficulty breathing. There is a possibility that this only happened because I forced to cough. So decided to stay calm and observe it I did not take antibiotics, instead I continued to take 1 gloves or garlic and drink fresh aloe vera. This is an experiment lol I dont want to use antibiotics if it is not necessary. So far im still feeling good and no blood now in my sputum. I will let you know if what will happen next. I know this is kinda risky but my body and mind is telling that I dont need those meds this time. Happy 4th to everyone!

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@imeehaigt .. imee and @windwalker Terri .. great advice! Imee, from my File Cabinet below .. please give it some thought! Hugs to you both! Katherine

From my File Cabinet
I can ONLY speak for myself about what testing is correct .. but WITHOUT periodic testing you DO NOT know if those nasty critters are colonizing .. getting ahead of you without you knowing about it! Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the 'puzzle' together based on the results of the sputum culture/Xray/Pulmonary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC and Bronchietasis. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC/Bronchiectasis STILL NOT in need of antibiotics. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON'T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene!

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Katherine, Alumni Mentor | @katemn | Jul 5, 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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@windwalker, Terri, I do NOT know if different doctor define it differently but this is what I was told .. would be VERY interested if other Members question THEIR doctors and find if there is a DEFINITIVE answer! Hugs! Katherine

From my File Cabinet
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"

REPLY
Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @katemn "@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We..." + (show)
@katemn

@tfritschy Teresa and @lindaaz Linda and @afcardieri Fillis Hello and Welcome to our Connect Forum! We are so glad you found us! You will find our group a support on our shared journey with an exchange of our experiences and the information we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you MUST become your own best advocate! Remember .. if you will read a 300 page book for pleasure .. isn't it wise to read 25 or 50 pages of this Forum to help learn about our shared MAC disease? Hope you make the effort to read those pages .. it will pay off!

I am answering you on our main discussion page:

– MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ ..( that is page 1 .. you can go to "Last" or wherever) . In this thread, you’ll find a wealth of information from an incredible group of knowledgeable and supportive members.

I am answering you there so you will perhaps get more responses. Come on over. Introduce yourselves and ask anything after you have read through the past pages and educated yourself to our shared disease. Hope you find these pages helpful! Hugs to all! Katherine

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Dear All .. IF SOMEONE DOES THIS .. PLEASE LET US KNOW THE RESULT so we can add it to our Forum notes as a good resource for our Members!! Hugs! Katherine

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unicorn | @unicorn | Jul 5, 2017
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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Katherine, Dr O Donnel (pulmonist and Dr. Hurtado (infctious diseases) are at Boston's Massachusettes General

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Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

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@lindam272, Linda, interesting! Mayo Clinic ONLY does X Rays .. with occasional CT scans .. you might ask why. CT scans are WAY more expensive! Where you go .. do they have their OWN CT machine .. sorry BUT their own "money maker" to bill your insurance company? Sorry to be a doubting Thomas but the thought occurred to me! With my husband's health issues I have SEEN this type of thing over and over ..sad but true. If they invested in a machine .. it has to pay for itself! YOU are the employer .. if YOU want an Xray .. request it ! Myself I had NOT had a CT scan since 2014 .. and WANTED one 6/17 so requested it .. and got it! YOU are in the drivers seat with your health care .. YOU are your own Best Advocate! Do what you think is best! Hugs to you! Katherine

REPLY
boomerexpert | @boomerexpert | Jul 5, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

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My doc last ordered not just a CAT but a PET scan, and I agree with him...much more conclusive and informative than a simple xray. I get on about every 6-8 months. Keep in mind I'm asymptomatic, which I believe makes a difference in diagnostics needed...

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virtuous69 | @virtuous69 | Jul 5, 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

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To the Mac moderators:Help. I'm jumping in from the chronic pain side of the Mayo forum for info on Mac.for my husband. The word nodule caught my attention. Yrs ago my 78 yr old husband had some type of scan performed by a thorasic surgeon. Forgot why, but my husband was sent to him after a kidney scan was performed and somehow this nodule showed up in his lung.
Husband a heavy smoker, refuses all chest x-rays during his annual physicals. He spits up and chokes on volumes of phlem as did his mother and twin brother. Our primary doc thinks it's all coming from sinuses. Thorasic surgeon asked hubby if he ever lived in the Midwest. Yes. Thor Dr. Said for some reason that region produced some bacterium that settled in people's lungs forming nodules that in years past were surgerically removed, but in present day they do not do surgery if nodules do not grow any bigger. Hubby's cough and choking could wake the dead clear down So Calif. Nothing my primary doc can do....can't force a horse to drink water.
My step Aunt has bronchiatis ????and some asthma but nothing else. Please direct me to the site that explains the aspects/symptoms of this Mac disease. I can't take listening to these choking and spitting up volumes of phlem episodes any more. Thank you for your patience. Signed victorious69.

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ling123 | @ling123 | Jul 5, 2017
In reply to @lindam272 "So I called my doctor's office and said that I wanted a chest xray done. It's..." + (show)
@lindam272

So I called my doctor's office and said that I wanted a chest xray done. It's been 6 months since I've been on the meds and want to see what that looks like when I go back for my July checkup. I got a call back from the nurse stating that the doctor wouldn't okay the order because it wasn't medically necessary. I said to her that I wasn't asking him if I should have one. I was asking him to order it. She repeated that he wouldn't order it because it wasn't medically necessary. Seriously? Is it unreasonable to want to see what is happening in my lungs after 6 months? Does this sound unreasonable? Maybe I'm making a big deal out of nothing. Not happy. Linda M

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@lindam272 Linda, if you make an appointment to see the doctor, would he agree to order a chest X-Ray? I have not had a CT scan. Besides a bronchoscopy when I coughed up blood for the first time to rule out lung cancer, my pulmonary doctor always orders a chest X-Ray for me to take before my appointment, which is every 3-6 months. Because I don't have other symptoms, except coughing up blood a couple of times in the past 2.5 year and constant production of thick mucus, he didn't see the need for a CT scan. But he would like to have the most recent chest X-Ray to compare so he has some idea if my condition is getting better, or worse, or stays the same since the last visit. I thought that was reasonable. If your doctor refuses to order a chest X-Ray even after you have made an appointment with him, then I don't see how that can be reasonable. How is he going to determine the current condition of your lungs if he has no recent images of them to compare with? How is he supposed to treat you?

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Katherine, Alumni Mentor | @katemn | Jul 5, 2017
In reply to @unicorn "My name is Christa, I have a child's glee about life, so I am a Unicorn...." + (show)
@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

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@lindam272, Linda there are several products that pop up when googled .. is the below the one that worked for you? You were really smart to do your "Due Diligence" in researching probiotics .. each of our bodies are different so each of us may have to experiment to find the one that works best for us! Good for you! Hugs! Katherine

Digestive Advantage Probiotic Daily Supplement
https://www.amazon.com/Digestive-Advantage-Probiotic-Daily-Supplement/product-reviews/B00C1C21I4/ref=cm_cr_dp_d_show_all_btm?ie=UTF8&reviewerType=avp_only_reviews&sortBy=recent

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