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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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Hi Kay, thanks for the update! Make sure you let us know how things go at Mayo In January. In terms of the nausea .. have you tried taking them at different times .. rotating which ones etc? It took me quite a while to find a routine that worked for me.
was told for me:
Azithromycin 250mg/Avelox 400mg-TAKE WITH FOOD/Rifampin 300mg-TAKE ON EMPTY STOMACH). Since Rifampin caused sleep disturbance for me .. I would take it first thing in the morning on an empty stomach. Then at least one hour later I could take the other antibiotic with food.
I found it REALLY important to get enough sleep. For me it was 10-11 hours sleep per night. Now that I am stable but with Bronchiectasis .. I still need 9 hours .. the coughing is pretty exhausting.
Yes, my dentist diagnosed geographic tongue. You can google it .. Images .. you can then see what it looks like. The dentist said NO ONE knows how you get geographic tongue .. being on the antibiotics from MAC cannot be ruled in or out .. No one really knows. BUT then on my next 6 month visit .. I spoke of pain. He said .. geographic pain does NOT hurt .. open up! Then "You have Oral Thrush".
So now I have been on a journey of TRYING to get rid of it! I am now on my 4th prescription .. this one from Dr. Aksamit .. a compound mouth rinse. Frankly after 2 weeks .. still hurts! Still not a solid solution.. I would DEFINITELY have it looked at before it gets worse. Mine did not get painful for over a year. Sooner is better than later, Keep us posted! Happy Holidays! Katherine
Oh Janet! I am SO happy to hear from you AND that you are doing so well .. AND that you have made so many good choices for yourself .. REALLY good "Due Diligence"! YEAH!! This is just such wonderful news!! What you are telling me as your game plan is EXACTLY what sounds smart to me .. AND pretty much the program I am on with Dr. Aksamit at Mayo Clinic now that I am stable. As with you .. he is holding off antibiotic treatment because my symptoms are mild .. AND I go in for follow up check ups! Due Diligence on OUR parts .. AND our doctor's part!
Janet, I ABSOLUTELY DO NOT think we are contagious to ANYONE on chemo!! WHY? Because Dr. Aksamit KNOWS my husband is Stage 4 cancer .. is on chemo .. is with me on EVERY appointment .. that we travel all over the world .. are on airplanes frequently etc! He KNOWS I am a person of integrity .. If he thought for a MINUTE that I could damage another person .. for SURE my husband .. Dr. Aksamit would tell me. No WAY are we contagious! Phooey!
So Janet , I am just delighted to hear from you .. AND don't let yourself be a stranger again .. let some of that sunshine glow on some of the new people on the Forum .. they LOVE good news like yours!! People who HAVE done their Due Diligence .. learned about our disease .. taken charge of their health .. AND charged forward!! We need you! You go girl! Hugs to you! Katherine
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1 ReactionHello Cila, I do a sputum culture which takes 60-90 days to culture .. he also does an Xray to compare with my last one .. breathing tests and asks LOTS of questions! Has your doctor NEVER done a sputum culture?
Cila, I looked back on your posts .. I found: I also saw another plum. Dr. to get a second opinion. Sure enough I have MAC and bronchiectasis. My question to you is: 1. did EITHER doctor culture the mycobacterium BEFORE putting you on the antibiotic
2. because UNLESS the mycobacterium IS CULTURED there is NO way to know for sure which antibiotic will be effective
Cila, I would like you to print out and read until you understand this information .. it is YOUR BODY AND YOUR HEALTH!
an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
GOOD INFO: http://maclungdisease.org/frequently-asked-questions
You must be your OWN best advocate .. educate yourself and make sure you get the best care!
In terms of sleep .. another thing that has helped me is Twinlab Magnesium Caps 400mg, 200 Capsules .. I take 1 capsule plus 1/2 Unisom at night .. for me it works .. can only speak for myself. I read about the Twinlab Magnesium Caps 400mg, 200 Capsules on a website for people having trouble sleeping .. ordered it online .. really made a difference for me. Not a perfect night of sleep .. but I can get to sleep .. when I wake up .. I can get back to sleep in a reasonable period of time. (my regular magnesium tabs didn't work)
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_a_it?ie=UTF8&qid=1479018295&sr=8-1&keywords=twinlabs%2B400mg%2Bmagnesium&th=1
Hope this helps! Hugs! Katherine
Jan, SO glad to hear from you! Sound like you had a really tough time of it .. wow! But it sounds like you have found a positive support group .. happy for you. Not all are like that. I tried just one .. found myself depressed after just a few times .. found the people "had BECOME their disease" so to speak. I never went back. I feel STRONGLY that MAC is just a PIECE of who I am .. my husband And I live VERY nicely in denial with health issues! Unless some issue smacks us in the face we just ignore it .. of course doing our Due Diligence in taking care of our health .. but being very clear it is NOT our focus in life. Our focus is having fun and living life to it's fullest! That sound just what you are doing .. good for you! Glad you have found a pathway that is working for you .. stay happy and serene .. that helps our bodies stay healthy! Happy Holidays .. sending you a Hug! Katherine
David, so glad you're improving .. keep on keeping on! But remember coughing up that sputum is GOOD .. getting it up deprives the mycobacterium of a breeding ground! Keep coughing! Hugs to you! Katherine
Kathryn, if they cannot reach the nodule for a bronchoscopy .. ask the doctor if your city has a facility for a "salt induced sputum culture". I do this every Mayo Clinic visit. I sit in a little booth ..breathe in salty air from a tube until probably my bronchial tubes and lungs are irritated enough that I can cough up sputum. I then spit it into a sterile cup. It gets sent into the lab to be cultured. From that culture they identify the mycobacterium AND what type of antibiotic will be effective against it! Make sure you keep at it until you have a GOOD culture .. you can see yellow spots in the cup .. otherwise it will come back "Too Scant to Culture" .. meaning you did not cough up enough to specimen. Hope this helps! Katherine
Hello NNassiri and Terri, the doctor is smart to request a second sputum culture. My understanding is this is because the hope is the 2nd culture will be from a DIFFERENT part of the lung from the first. That is why the doctors like a sequence of cultures .. because they never know when we cough .. which part of the lung the sputum is going to come from. So the more cultures the better actually.
But NNassiri .. PLEASE do not forget that the coughing is our "lung hygiene" .. if we do NOT get that sputum UP and OUT .. it can sit down there and become a breeding ground for more mycobacterium. That is why despite getting tired from all my coughing .. I understand it is my body trying to get the "bad " stuff out so to speak.
Sending you both a hug .. your wife is blessed to have you by your side! Katherine
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1 Reaction.. good questions Terri! Food for thought! Katherine
Katherine im really trying to backread all the previous post, you are right educating yourself about the disease is really important. My doctor did not even explain to me if what is NTM I just googled it. When I was taking ethambutol i've learned online that this might impair your vision and I was the one who told him if I need to see an optalmologist to check if the medicine is affecting my eye sight and im glad it did not. I make sure to bring out the phlegm everyday and I also do some deep breathing excercise everyday. I was thinking to undergo broncoscopy/bronchial wash to remove phlegm but I will ask my doctor first if this will be helpfull for me. Many thanks again guys.
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1 Reaction@katemn I want to personally shout a big "WooHoo" for your good news and stability of your health. I hope that you continue to get positive reports.
To all,
I would like to compliment everybody on this discussion for your selfless sharing of so much helpful information. And for support of each other! I came to this discussion in June for what has been diagnosed as 'exercise induced asthma' ( bronchospasms) and I am still working with pulmonologist to get it under full control. I am very pleased with my progress, and I am frustrated that full management is not coming quick enough for me.
I admire all of you for your patience and proactive approaches to your health.
Rosemary
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