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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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@windwalker Are you sure about only every two years on Medicare? I have been getting them yearly and have one scheduled next week. It also will be a 3-D one.
That's horrible about your cardio doctor. Doctors these days sure are not like they used to be. It really stinks.
JK
@contentandwell Oops!
Just re-read the 2017 Manual for Medicare. You are right, it is every 12
months. Don't know where I had read it differently. Thank you for catching
that. -Terri
@tdrell Terri,
I have no idea now. I will ask my doc on Tues. All I have ever known is that MAC
looks like TB when it first starts growing. I was quarantined for two weeks;
confined to my house in isolation in case it was TB. For some reason, after only
two weeks, they knew it MAC.
@irene5
I just looked up my Medicare info, you are correct, they will pay for an annual
Mammogram.
Hi all, I have a question. While this a MAC site, I know many have bronchiectasis and MAC. I am getting sort of depressed with all this mucus. Today I started coughing up in the car at 10:30. That lasted for at least a half hour. Later, I did my usual clearing at 2:00 pm, probably for an hour. To me, I have a lot of sputum. I feel I can't go anywhere, at any time without worrying I am going to start hacking and coughing up stuff. It is totally gross. Yesterday I had to step outside of a restaurant to cough. I am on a nebulizer with saline and aberterol in the morning, and I vary my ABX for 14 days every month. I drink lots of water. Does anyone take any natural remedies to tame the abundance of sputum? I have read about certain natural Chinese products that claim to help reduce mucus and congestion, but am nervous to try untested, unrecommended things. I realize that many have the problem of difficulty eliminating the sputum. I just wish I didnt have so much, so often. I have to add that all the forced coughing and clearing is exhausting. Any suggestions would be appreciated. Thx. Fondly, Mary Jo
Hi all,
I forwarded your conversation about coverage for tobramycin to a Mayo Clinic pharmacist to see if she could shed light on the topic. This is what she replied:
"Health insurers have to balance care and cost and they do that by putting drugs in categories based on how they feel they can best service the bulk of their patients. The problem is that not every patient fits into that bulk group. In those cases patients can seek prior authorization, exception, appeal and/or write or have written a letter of medical necessity.
As an example, here is a link and information from Blue Cross Blue Shield with reasons they require prior authorization for certain medications. http://bit.ly/2sfMttz. The article states:
What kinds of drugs need prior authorization?
* Drugs that have dangerous side effects
* Drugs that are harmful when combined with other drugs
* Drugs that you should use only for certain health conditions
* Drugs that are often misused or abused
* Drugs that a doctor prescribes when less expensive drugs might work better
"There is evidence of efficacy for tobramycin in bronchopulmonary infections like MAC but it is not FDA approved for this indication. Because the medication is very costly, the insurance company wants to ensure that patient-specific factors and antimicrobial susceptibility data are being considered. Every plan has different requirements on what is covered and what exceptions can be made. Prior authorization, appeal if denied and submitting a letter explaining medical necessity or having your care provider send one to the insurance company are some things you can try to get claims covered. In some cases, this process can be more efficient to process restricted or excluded drugs when the pharmacy and the prescriber operate within the same network (ie Mayo Clinic)."
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3 ReactionsTerri, that is exactly what happened with me years ago with my mycobacterium, Kansasaii. My husband had to have a TB test in case I gave it to him. After 2 weeks, they had cultured the bacterium. As I told Katherine earlier, the mycobacterium leaves something in your lungs that resembles TB and if you go to an emergency room for something, and they X-ray your lungs, they think you have TB. Happened to me. Fondly, Mary Jo
@windwalker Why did you have to be isolated for two weeks? Doesn't it take 3 consecutive sputum tests to confirm whether you have TB or not? My TB test result came back pretty quickly. I don't remember exactly how long it took. My impression was about a couple of days after the third sample was submitted. My pulmonary doctor didn't think I had TB from the start because I didn't have any of the typical symptoms of TB. But he needed to see the test results to confirm it. So I knew I didn't have TB in less than a week (about 5 days).
Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine
@maryjo2sell, Mary Jo, that is why I carry a print out that explains MAC .. so FEW ER doctors/nurses OR regular ones are really knowledgeable about our MAC .. OR will recognize it when reading an Xray! We DO need to be our own best advocates ... under ALL circumstances unfortunately! Brochure on MAC/MAI can be printed out at : https://www.ntminfo.org/images/media/FAQ/englishpamphlet_ntminfo.pdf
Hugs! Katherine