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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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Contentandwell....tis good that woman listened to her friends rather than the ignorant Dr!!!
The woman I know was told by attorneys that since she did not appear to be loosing her life as a result of the negligence ....there were no grounds for a suit.tdrell
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1 ReactionWindwalker....Dr Huitt..as i mentioned months ago....my ID dr at NJH told me to double my VIt D intake to 4000 IUdaily in order to get a blood level to 100 from the 50 i was at when taking 2000 IU a day. She said they feel it helps immunity.tdrell
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1 ReactionHi all,
We did a Video Q&A a little while ago about breast imaging. You may wish to share this link with people who may be interested in learning more.
- Video Q&A: Your Guide to Selecting the Right Mammogram http://mayocl.in/2fQLfAS
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1 Reaction@tdrell I am sure this is true of some smaller insurers but I seriously doubt it of the larger insurance companies. I have never had a problem with anything that should have gotten paid being turned down, thankfully. If the guy that sold me my medicare supplemental was still at the company they would probably fire him for signing me up -- I have been a very costly insured.
JK
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1 ReactionWindwalker.....at NJH in January....I learned that the CAT scan evidence and 2 out of three sputum specimens positive for NTM Define the infection....
and didn't someone recently report the number of Colonies of the specific NTM grown in Broth....given 6-8 weeks to grow are used to diagnosis NTM?
Since there are fast growing and slow growing NTM....the need for 3 steps and up to 2 months are why...
Has Anyone else read or heard of the above? Tdrell
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2 ReactionsContentandwell....my friend ....an RN....was working for BlueCross Blue Shield of Milwaukee....not a small company.The companies in Sicko the documentary were large national ones.....not related to Medicare/supplements
My comments were not based on Medicare and its supplement insurances or on the advantage programs.Tdrell
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1 Reaction@tdrell, thanks for all of your great insights on health and welfare. You are correct. I m pretty sure I have seen the information on the diagnostic criteria on the national jewish ntm video's. I hope that everyone gets the opportunity to watch and rewatch with family and friends. I have Coventry, CMR, throu my husbands union but the sheet metal worker's local 36 is the payer therefore they are the ones denying payment for medical and pharmaceuticals. I have missouri medicare medical as my secondary. I have recieved three refunds from medicare last year but didn't know how they would be responsible for a refund and not the doctors office. So when I have received a bill, I always wait a few months to see if the insurace companys figure things out on their own. The fourth month I call the doc office first and have them explain charges and billing. Some times its just a coding error. Other times its that they've billed the wrong insurance first. Even if i have told them time after time I will have to call Quest labs every time to tell them to bill my secondary insurance medicare. The medicare usually covers the deductible on my primary Coventry CMR network. Ive watched Michael Moore's movies everyone should see them also, very educational.
Hope you have a great Saturday! Take good care of yourself!
Becky
@tdrell Maybe I am naive but I honestly cannot imagine this taking place in large, reputable insurance companies. I worked for BC-BS, granted it was years ago, and nothing like that ever would have happened. I also worked for a commercial insurer and again do not think this would have happened, but of course times have changed. I still cannot imagine the highly regarded companies would risk everything doing this.
JK
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1 Reaction@ contentandwell, I hope all is well . I am wondering what medicare supplements insurance you have?Is it covering prescriptions, doctors, hospital, and medical equipment? I might be getting a divorce and needing to get a medicare supplement insurance. Happy Saturday and thank you,
Becky
@chinasmom Hi Chinasmom, I have Medicare supplement F from Bankers Life. The supplemental plans are standard but I guess the cost varies depending on the carrier. I must admit, I really did not do much comparison, I just did not realize that there could be much of a difference. I know a lot of people get theirs through AARP.
F covers pretty much everything but drugs are covered with a different coverage, I think it's called Medicare D.
I googled and here is what it said about F:
"Medicare Supplement Plans F and G. Plans F and G are the only Medicare Supplement insurance plans that cover costs known as Medicare Part B excess charges. An excess charge is the difference between what a doctor or provider charges and the amount Medicare will pay."
I think G covers internationally also, but not sure. I know there was some reason I didn't choose it. I have been very happy with my coverage. My husband left it up to me as to what I chose but I just felt for some reason I needed the best. That must have been a premonition because I have had to pay very, very little of all the costs incurred by my transplant and pre and after care.
Sorry to hear you are the situation you are in. I hope everything gets resolved in the best way possible.
Have a great weekend. Here in NH it is gloomy today and there is supposed to be some rain this afternoon, third day in a row. Before that it was sunny and in the 80s and 90s!
JK