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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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@gggolfs, GG , STOP! It WILL be ok! Yes I DID go through it all! YES I DID come out on the other side! YES I HAVE been "stable" and off the antibiotics since May 2014! YES I have had a GREAT life since .. traveled all over the world .. had a wonderful life! So STOP and reevaluate all the thinking that is leading you to this point!
YES when you start your med you may have some issues .. some people do .. some people don't. Each of our bodies are different. THAT is why we have this Connect Forum .. for you to read the back pages .. to educate yourself to your MAC disease .. KNOWING that knowledge is POWER! FEAR is where you are sitting right now .. do NOT let it take you over .. THAT is weakness .. KNOWLEDGE will remove/strengthen you from that fear! DO IT .. take charge of your life and your disease. It is YOUR decision .. either YOU take charge .. or the fear takes charge. Which will it be? I know I am being tough on you .. but I am a grandmother of 10 .. so I tell it like it is!
NOW Girlfriend.. IF you decide to take charge of this process .. I want you to read the back pages of this Forum .. THEN you WILL have POWER .. the Power of Knowledge of your disease .. the power of setting goals of where you want your disease process to go .. you will develop a GAME PLAN .. plus in asking question about anything you do not understand you will gain the support of our wonderfully supportive community of members who have all walked this same journey.
Remember those nasty mycobacterium critters are NOT going to magically disappear .. YOU have to take charge and get rid of them. Develop a game plan and WORK the plan. I know this is a tough time for you .. but we have all walked this walk .. trust us .. we will walk this walk with you. Keep coming back .. we will be here for you. Sending you a hug and lots of positive energy! Katherine
Colleen, actually I thought that Mayo Wellness Clinic link that you gave was a WONDERFUL idea for @jentaylor! I hope she takes you up on it! What a wonderful opportunity it is for Mayo patients .. I didn't know that existed! I am hoping it is free? Katherine
@jentaylor, Jen it the 18th floor .. BUT you can ask at any of the Info Desks or the Guides at the elevators.. they are ALL so nice! Katherine
@jillnc,@boomerexpert,@lindam272, @katemn....yes! thank all of you for your input...all of it is so helpful, and like Kate said, I don't feel so alone. It was amazing how quickly you all responded....THANK YOU!! My headache did go away about an hour after I typed for help...and I didn't have to take any drugs...maybe more water helped. 🙂
Also, @boomerexpert, did you get tested for acid reflux? If so, what did they have to do to determine if you have it? I really feel I need to make sure I am not a culprit of that also. Did you know more than 40% of people in their 40's on up have silent acid reflux? And, I read from an acid reflux expert, Dr Kaufman, that she feels that 90% of pulmonary cases start in the stomach! This is worth getting checked.
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1 ReactionI was not...my pulmonologist - exertise with MAC - recommended I take something for it as it's common...I went with something light and working fine!
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1 ReactionBeing dehydrated can cause headaches. Drink lots of water all day long 🙂 hope you don't have headaches again.I've had acid reflux since probably 2008 or 2009 when I was diagnosed. I was in the hospital for an outpatient procedure and the nurse in my recovery asked if I'd ever been checked for reflux because of my constant clearing if my throat. I said no and she said she would get it checked out. I finally did as I was having issues swallowing too and my reflux was so bad it made my esophagus brittle, found during a procedure to put a balloon in to expand my esophagus (which didn't happen when the dr saw how brittle it was). I was put on reflux meds and my esophagus recovered. I've had an endscope as recently as last year and with acid reflux meds it looks good. However there has been some question of sclurrederma (sp?) From my 2nd high res ct scan, but I haven't followed up yet on that, since it was just checked last summer.I have so many things going on it's always interesting to me to see how things are intertwined for me personally, as I have no clue which 'came first'.
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1 Reaction@jillnc, Jill, so interesting! Aren't our bodies SO complex .. amazing! Thanks for sharing .. each bit of info on our Forum pages helps other members! Hugs! Katherine
@beatitnow .. Amy, as you read past pages you will probably be astounded how many of us with MAC DO have GERD! Myself it happened when I feel my stomach just got torn up with a LOT of meds with pneumonia in 2001 .. with many it is "silent GERD" and really causes a lot of issues. If I was you I really would get it checked out! By the way .. it really does help to raise the head of your bed by 5-6 inches! Hugs! Katherine
@katemn,
The Healthy Living Center offers a wide array of wellness services. However, they are not free. Prices range from $10 for individual classes to $800+ for extensive multi-day programs and personal coaching. Here is the website for more information https://healthyliving.mayoclinic.org/
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1 Reaction@jentaylor Jen Please see the post from Colleen .. this is helpful information that I was not aware of .. please check to see IF there is any financial help for you to be able take advantage of this service! Hope things are going well for you! Katherine
The Healthy Living Center offers a wide array of wellness services. However, they are not free. Prices range from $10 for individual classes to $800+ for extensive multi-day programs and personal coaching. Here is the website for more information https://healthyliving.mayoclinic.org/