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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Nelisabeth, that is WHY I want you to do the steps I spoke about. It is very common they cannot read each others scans. BUT with getting the records .. it WILL INCLUDE the FINDINGS of that SCAN!!!! That will NOT be as good as the scan itself but it will be something. That is another reason it is SO important to find ONE GOOD INFECTIOUS DISEASE DOCTOR .. and then STICK with them .. then they can see those baseline tests and watch your history as you change over time. When you skip around doctors .. they have NO HISTORY to determine if you are better or worse. Fine one GOOD one and stick with them! Good Luck! Hugs! Katherine
...have already begun and man oh man am gittin th runaround! there is, however, NOTHING lak an EMPOWAHED WOMAN! nelisabeth and DID git printed out .... safely and attached to mah new book of evry step i take!
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1 ReactionYou are right about the scans - I get a CD and written report every time I have one done - about every three months now. What really surprised me was the I was admitted to the hospital for a biopsy of a nodule in my upper right lobe and the radiologist who was to do the biopsy hadn't even seen my scan before I was admitted. So the information had not been exchanged between doctor and hospital before I was admitted, prepared, and hooked up ready to go in for the biopsy. The radiologist took another scan, as I've written before, and sent me home as the nodule had shrunk and the chance of a collapsed lung was too great.
Good news. I do know now that my A/C dusty-filled duct system was contributing a lot to my cough and weakness. Since I have had that changed out, I feel much better. Still have to keep up with the pulmonologist but I do feel better. I can not tolerate dust.
While I'm here, just a word of advice - not to just concentrate on the lungs. I let my other doctors take second place and nearly missed two pre-cancerous (Basal Cell Carcinoma) skin lesions on my face. I've had these cancers twice before on my nose requiring full radiation treatment (33 times each) and felt lucky I caught these in time.
Well, lets enjoy the holiday lights and hoping everyone has joy to hold on to. Kathryn
nelisabeth again ... gon werry thee to deaf! HO! HOW do i find out where Dr. David Priest at Novant in Winston Salem is
the doc fer me? I liked him but was too sick to make much sense of what he said. My niece was with me and she, too, had a hard time ...... we came away thinking the "bugs" were dormant.???????? another question ..... nothin ever shows up on plain x ray .... only the CT/contrast. Is there a dormancy period? okay .... off and at em!
Katherine
Why do you say"no tub baths"? I understood tubs were ok. If we stay away from showers how are we suppose to get clean if not a bath??? Thx, maybe I read it incorrectly!
Kay S
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1 ReactionKay, SO glad you mentioned this .. I was in a hurry and misspoke. Was doing this too quickly and added too many "cleaning" sources! Tub baths are fine as far as I've read .. don't just keep adding hot water as you are sitting in it. Again, shorter showers .. I've read "For stall showers, an opening at the top of the door and a fan while showering may reduce the risk." That sounded like good sense.
Kay, thanks for bringing that to my attention .. sometimes I am tired etc! Katherine
Nelisabeth .. I LOVE google .. all I did was google: and below is what I found.
David H Priest, MD
Address: 1381 Westgate Center Dr, Winston-Salem, NC 27103
Phone: (336) 718-0440
David H Priest, MD ... Novant Health Huntersville Medical Center Novant Health Kernersville Medical Center .. . Novant Health Presbyterian Medical Center
Affiliated with Novant Health
Specialties:
Infectious Diseases
Education:
Medical School:
Wake Forest University 1999
Residency:
Wake Forest University Baptist Medical Center 2002
Fellowship:
Vanderbilt Medical Center 2004
Board Certifications:
Internal Medicine I LIKE THAT HE ALSO IS BOARD CERTIFED IN INTERNAL MEDICINE!
Infectious Disease
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http://health.usnews.com/doctors/david-priest-232518
https://www.google.com/search?q=Dr.+David+Priest+at+Novant+in+Winston+Salem&ie=&oe=
He must be bright because he got into good schools .. go for it! Katherine
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1 ReactionNelisabeth, what you are calling a "dormancy" period .. I call "stable". I have been "stable" meaning not on antibiotics since May 2014 .. meaning the mycobacterium are present in my lungs but are not multiplying/colonizing and my other symptoms show that I do not need antibiotics at this time. YEAH! I am NOT a doctor .. but I think the Xrays can only show up things like scarring etc .. but I don't really know how the doctor evaluates .. I just KNOW you need a good CT scan at this point! Good luck! Katherine
Kathryn, what GREAT advice! Every bit of it! One of the problems with our medical system is that ONE "reader" cannot read a different kind of test. I even had that happen with a RELATED FACILITY .. main office versus branch location for getting a breast MRI. I had gotten them done at the main office downtown for years .. then a branch opened close by .. had one test done. Found out the machine a the branch COULD NOT be read by the Main office!! So that one test could NOT be compared to either my base line .. nor the previous year! Of course no one told me in advance!! Our medical system is SO SCEWED UP!! So try to have all your tests done at ONE place if you can!
Great advice all along . thank you! Happy Holidays! Katherine
Hi Becky, WOW .. it seems like you have certainly had your share of troubles also! I agree .. it is REALLY important that your doctors get you set up with an INFECTIOUS DISEASE DOCTOR! Take a look at some of the things I suggested to @nelisabeth on page 18 .. some of them might apply to you? If you just click on the name .. the post should come up I think. Keep coming back to our Forum .. let us know what happens! I'll be wondering! Hugs to you! Katherine (also read past pages of the Forum .. lots of good information!)