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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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@beatitnow .. Amy and @kaystrand, Kay, such good information .. thanks Kay for jumping in!
In terms of the book "Beating Bronchiectasis" by Daniel Pecault (99 cents if downloaded to a Kindle app on your phone or ?) I REALLY liked Kay's description! Because if you take the book that way it really IS good common sense reminders. His writing style is a bit exaggerated and dramatic I felt but as in ALL things "you take what you need .. and leave the rest"! I personally could not do all his personal regimen so that is especially why I liked reading Kay's response! Take the good common sense advice .. YEAH! Thanks Kay! Hugs to all! Katherine
She is taking methrotraxate,celebrex,hydroxochloroquin,lyflomatin. My spelling is bad. She just keeps getting uncontrollable chills, fevers,diarrhea and since she started meds for myobacterium she's coughing more and phlengain with tissue little blood.
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1 ReactionYes ! My name is Carmen which is also my mom's name.
I'm just worried with her side effects since she started the meds. She has been getting awful side effects and Dr said to keep taking them till Tuesday when we see him and maybe talk about different treatment but if she develops side effects again to take her to er. Well the side effects are daily I can't be going to er daily to lower her temp. And she's weaker and tired and there's way more coughing and now phlengain has tissue w blood streaks. Diarrhea that's making her incontinent. She has chills that she can't stop shaking. Muscle aches . She's bad. And I can't keep seeing hherin pain. These side effects aren't just normal nausea . I'm just terrified for her .
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2 ReactionsThx... Awesome my friend is a pharmacist so this should be easy... 🙂
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1 Reaction@ilgrp4e, Carmen, I am NOT a doctor .. but you are her daughter and are watching her with all these side effects .. having a doctor tell you just to keep taking her daily to an ER and WAIT until you see him on Tuesday!! Ok, this is just ME .. NOT a doctor .. BUT if I was sitting in your shoes .. I would STOP the MAC antibiotics NOW .. UNTIL you see the doctor on Tuesday.
THEN I would google this doctor's name .. find out his bio. Find out IF he is an Infectious Disease doctor. IF he is .. on Tuesday ask: How many MAC patients have you treated in the past 12 months? WHY? Because you want your Mom to be with a doctor who KNOWS what MAC is all about .. knowledgeable! Also because YOU have to be your Mom's BEST Advocate .. she is too sick to do it for herself! AND I am concerned about this doctor's leaving her in misery and telling you just to go to an ER.
Carmen .. this good advice came from one of our Members who also had side effects. Print this out and take it to the doctor on Tuesday .. REMEMBER .. YOU are in the driver's seat .. YOU are the employer .. the doctor is YOUR EMPLOYEE!!
"Had side effects. Then my pulmonologist took me off all meds to make sure nothing else was going on. My pulmonologist suggested that I re-start the meds one at a time. I went on first one for two weeks (pulmonologist suggested that it be for two weeks); then a second for two weeks; and then a third for two weeks."
Carmen, good luck .. keep coming back with any questions .. we will be here for you! Hugs to both of you! Katherine
Yep I did that. How do I get OFF the MAC subject?
@gaylejean, according to Colleen .. the way to do it is below .. best wishes to you .. Katherine
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Carmen, I would take her to the ER and if they don't admit her. Take her off the meds and do as Kate advised with the doctor. Also get some fluids in her Pedialyte or Gatorade, and small soft food. Get some chewable peptobismol and anti diarrhea. Im really concerned that you were told to wait. Error on the side of caution and take her to get help today. Let us know how it goes.
Becky
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1 Reaction@faithup
Sent on Sat, Mar 11, 2017 at 8:17 am
Hello Kate, I had been reading posts this morning. Im thrilled to find your blog. I do not routinely use social media. Therefore im not sure if I am connecting to the blog properly. If not please advise. I was diagnosed late December 2016. I have been on the 3 medications since New Years Day. I also have Sjogren's Syndrome. I am a nurse who has worked in a hospital setting x34 yrs. I read one can contract this from hospital water supllies (but who knows). I had also taken a supervisory role 2 yrs ago in which i was working 55-60+ hours per week. I believe i ran my autoimmune status crazy and weakened myself. I have now stepped down from my position to rest. I am startimg a part time position this week. I live in northwest Indiana. I spoke with one other MAC patient on the phone. She had it 7 years ago and has it again. She traveled to Jewish National in Colorado for care. I took a 4 week leave of absence at the beginning however lately i feel more tired at the present. I was taken off the Myambutol for two weeks due to hearing tones, fine motor shaking and locking onto a thought and dwelling on it. Now my infectious disease MD re-initiated the med stating its the best course. I do not cough up any sputum. I obtained an acapella valve to bresthe into with no results. I informed my infectious disease MD of this and he said i may not bring anything up. So much more to share. Will connect again. I hope all the Floridians feel better soon. Teach me how to enter the blog site. Thank you for your time and effort. P. S. I am following a "nutritarian diet" for the clean eating aspect. A book by author Dr. Joel Furhman has opened my eyes to many diet related health issues
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Dear @faithup .. do you have a first name .. more personal! I am SO glad you found us! I have moved your post to our main MAC and Bronchiectasis Forum because I want you to meet all our wonderful supportive and welcoming members! But also as you find time to read the past pages of the Forum you will find a wealth of information on our shared MAC disease .. tips and knowledge. You will be SO glad you learned more! Knowledge is power and truthfully by the end you are going to know more about our shared disease than a lot of doctors do!
I also do not use social media .. this is my one and only .. but it has been a life saver .. I have learned so much! You are correct .. NO ONE knows just how we get MAC .. and actually it doesn't matter .. all that matters is that you are being WISE in taking a less stressful work situation to take care of You! Jewish National is outstanding .. I go to Dr. Timothy Aksamit at Mayo Clinic, Rochester MN where there is also an outstanding team .. I have been blessed.
The Acapella did zero for me also. You said " I do not cough up any sputum. " I learned about the Aerobika airway clearance device here on the Forum. I have found it REALLY helpful in getting up the sputum. Remember .. the sputum can become a breeding ground for further mycobacterium. If I was you .. I would order one right away!
AEROBIKA
http://www.aerobika-therapy.com/order-today/
Members @decosmo and @maryjo2sell who have given great info about the Aerobika in the past.*Aerobika. I highly recommend it. I love mine. I have 2. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. Always clean with distilled water or antibacterial dish soap and rinse VERY well. I have had mine for at least 2 years.
Also very helpful to increase lung capacity: Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com Read the reviews and how to use at https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I
@faithup, tell us more about the " A book by author Dr. Joel Furhman has opened my eyes to many diet related health issues" .. we are big on sharing here on the Forum .. with the attitude "take what you need and leave the rest!"
@faithup, you said "Teach me how to enter the blog site." .. all you have to do now is when you receive this reply post .. just hit "View & Reply" .. the blue box at the bottom of the email .. and you will then be at HOME in our little supportive community! Sending you a welcoming Hug! Katherine
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1 ReactionI did bring up the subject of MAC to my doctor and he looked dumbfounded but consulted a colleague and said I was not to restrict myself from all the things mentioned in the conference I watched.