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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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jkiemen, I know how you feel b/c I have MAC and bronchictasis and its not easy not to think about the disease but sometimes we need to get it out of our mind. It will get better and trust the Lord and He will get you trough to this. I will put you in my prayer and the Lord will give you His Blessing. Cila
Thanks, for the info. I think I will try applying now.
Prayers and hugs for you!
Jkieman....sending white light that the Dr is decent and you get a good report.tdrell
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1 Reaction@nick52 Gosh, you just listed all of the things I eat on a regular basis! Take those away, then, what is left to eat?!! My body has a very high ph, I have litnus tape to test the acid level in my body. It is off the chart high. I don't need the tape to tell me that to know it. My tongue burns all of the time. I even FEEL acidic. The list of alkaline foods is short. I get bored with limited food variety. Any suggestions?
@jkiemen Hi Jo Ann. Prayers up and fingers crossed for good news for you tomorrow. Hugs girlfriend!
@jkiemen Jo Ann all the best for tomorrow, I know how awful the waiting is, drives me nuts too, lets hope tomorrow will bring good news. sometimes the pills can take a long time to work so don't worry if they haven't worked wonders yet. Take care
My 6 month CT showed some improvement. Still there, not worse and a bit better. So thank you everyone who prayed for me. I will pray for all of you as well. He told me that this takes a long time to show improvement so at least heading in the right direction. I have been so distraught and worried that now I am not sure what to do with all that sensation.
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2 Reactions@macjane so sorry to hear you suffer depression. My husband had flash depression and the doctor told him to drink St John’s worth herbal tea. You can not mix it with anti-depression pills. It work really fast for my husband. It depend of each person. You
do not take it all the time but you take it and when you feel good no need to take it. So take it as need it. You can use tea, alcohol drops or capsule.
I always say to my husband remember you have the choice to depress or express! Remember that always when you feel depress that will help you do something you like to do or think tomorrow you’ll be find I say to him and give him a St John’s worth tea. He
says it help a lot. It’s depression doesn’t last more than a day so it must work for him!
It may not be the same for you! Check also the pills you take some put you into depression and doctor’s doesn’t even know it. It happen to my mother in law. I had too many experience with medication that now I may be anti medication but if I really have
to I always check the secondary effects. It happen to my husband too with the Flomax so be careful! Nick
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1 Reaction@jkiemen That is good news. You sound alot like me, good things take time, It took me 2 years on meds to get an all clear on my CT, some scans showed improvement and others less so within that 2 years, but you will get there. The anxiety takes a while to improve also, I hated waiting for results and was a complete mess so I know how you feel just do some breathing exercises and try to relax your body(hard I know).and exercise when you feel up to it, you will get there. Just dont have expectations for your CT scans, you will get there!