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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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Hi @heathert, yes depression is a MONSTER & is a pro at telling you lies about so many things. I have been taking meds since I was 12 years old. I finally have a great combination of 4 different meds after my great family doctor had me take a genome study to evaluate which meds work best with my body & how I metabolize them. It was very helpful information. The depression & anxiety are a big contributor of why I don't want to wear my oxygen in public or even at home with my family. It also tells my lies about how I look at myself & my self worth. It's a never ending battle but I am making great strides in therapy! I have a very dark & upsetting (to say the least) past that set me way back from where I ought to have been.
I actually felt it was unfair for me to get such illnesses that I have, especially the lungs, because I felt that I had my fair share of dealing & overcoming so much in my life. This way of thinking does not serve me well. I try to let it go but I can't seem to actually succeed in this. I guess life is unfair at times but e have to find the positives & focus our attention there & be grateful for what we do have.
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3 Reactions@jentaylor Hi Jen, it sounds as if you are now on the right track. When I was dealing with cirrhosis prior to transplant I avoided the "why me" (a la Nancy Kerrigan) because I figured why not me? I try to live a decent life, I've had my ups and downs, but there are many people better than I am who are dealing with worse than I did and do.
On an intellectual level I do wonder how this happened but I chalk it up to letting myself get WAY OVERWEIGHT which led to diabetes and then fatty liver which led to cirrhosis. I know not every overweight person has these problems but I think a person's physiology determines what effects them.
Good luck staying positive, that can help you overcome so much. You sound as if you are progressing very well in that direction.
JK
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2 ReactionsHello Katherine, when you took the Amikacine is it portable inhaler? My Dr. said I need to take it but did not explain much about it. He just says its inhaler and they have to get approval from my insurance and then order it. I really don't know what to expect. Thanks for the info. I hope your felling much better now. Blessing to you Cila.
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1 Reaction@cila, Cila, it was simple to pull an answer from my file cabinet .. JUST LIKE doctors not to explain!! Thank heavens for Connect! As I recall I did NOT need a prescription for the PARI unit .. only the Amikacin and the saline. Truthfully I still feel lousy .. really don't know why. I ended the 1st cycle of the 3 cycles of the Inhaled antibiotic Tobramycin for the 3 new bacteria in my lungs .. a 6 month process .. just extreme fatigue daily .. plus my husband is in the hospital .. 3rd time in the past 3 months. No rest for the wicked! But I will get through it .. we all do ,. we all have! Hugs to all! I think of all of you daily and am SO proud of how you have carried on with our wonderful Connect .. keeping it so active and caring .. wonderful job!! Katherine
From my File Cabinet:
ANTIBIOTICS-INHALED AMIKACIN inhaled Amikacin there was a stress on STERILIZATION! Really keeping things clean! Now since I stopped with the inhaled Amikacin 5/14 perhaps there is a new machine but THESE WERE MY INSTRUCTIONS .. THEY MAY HAVE CHANGED SINCE 2011!!
1. If you wish to use Mayo Pharmacy, you will need to call the pharmacy to set up a mail order account. The phone number is 1-800-445-6326, and press "0" to speak with a live person. They will ask you for your mailing address as well as your credit card information and prescription insurance information, if not already on file. If you travel, just let them know to which address you wish to have your prescriptions sent.
2. Once you have an official amikacin prescription from Dr. Aksamit or your Doctor, contact the pharmacy and ask them to mail the Amikacin out to you. The first prescription will be for one vial, for your test dose. Once you receive the medication, please call your physician to arrange for the administration of your test dose. If your doctor is unfamiliar with this procedure, then s/he will need to contact Dr. Aksamit/your doctor.
3. In addition to the amikacin, you will also need normal saline (which will be included) for diluting the amikacin prior to inhalation. Your doctor will also need to supply you with, or write a prescription for, a nebulizer (machine for administering inhaled medication).
USING
1.Use a clean syringe each time you enter an amikacin vial. Reorder the syringes each month when you refill the amikacin.
2. Needles/syringes should be disposed of by placing them in a "sharps container". Syringes should be dropped into the container needle end first, and we do not recommend recapping the needle. While sharps containers can be purchased, you can also make your own by re-using an empty hard plastic bottle, such as one used for liquid laundry detergent, shampoo, wet wipes, coffee, etc. The container should be labeled, "Do Not Recycle: Household Sharps", and may be placed with the cover on in the trash, though you may wish to check to see whether there are any sharps collection sites in your area (which are considered safer than placing sharps in your trash).
DAILY SCHEDULE
1.In 4-Cup Plastic Measuring Cup http://smile.amazon.com/Norpro-4-Cup-Plastic-Measuring-Cup/dp/B000HJBFFS/ref=sr_1_1?ie=UTF8&qid=1462336680&sr=8-1&keywords=plastic+4+cup+measuring+cup Took apart and washed the nebulizer parts in antibacterial dish soap in HOT water .. rinsed carefully in HOT water. Let sit overnight in to dry in measuring cup. In morning transferred clean parts into a “baby bottle sterilizer”. From the millions of things I had researched .. I had read about this trick .. a whole lot easier than trying to boil the parts for thirty months! By having a weeks supply of the nebulizer and this sterilizer .. I was able to make a frankly unpleasant task a little less unpleasant AND keep myself safe. Maybe someone else can come up with something better/easier but this is the best I could come up with. Mine was: The First Years Power of Steam Electric Steam Sterilizer from: http://smile.amazon.com/First-Years-Power-Electric-Sterilizer/dp/B002WN2B6O?ie=UTF8&keywords=baby%20bottle%20sterilizer&qid=1462337037&ref_=sr_1_12_s_it&s=baby-products&sr=1-12
TIP: The only other tip was we travel a lot so I purchase a 2nd Pari that was smaller but took longer. I would envy you if a newer unit has come out that would take a shorter time. Personally it always took me close to a half hour to get the Amikacin in my lungs .. no matter how deeply I tried to breathe .. AND if I tried not to pay too much attention to a TV program that I was trying to distract myself with! BUT I got healthy so DO IT! In the end all this is worth it .. GO FOR IT! Good luck .. hope some of this has helped.
TIP MY UNIT: PARI VIOS LC Sprint, Deluxe I found the best price at Just Nebulizer $55.95 .. just checked .. still the best price I could find. Ask the doctor .. this is the one I used. http://justnebulizers.com/pari-vios-nebulizer.html?
gclid=Cj0KEQjwmKG5BRDv4YaE5t6oqf0BEiQAwqDNfBm39YY5GKewgU0u12sOyKrzsuPl1iFF6-faEvvUjxkaAmQd8P8HAQ
TIP I then purchased Reusable Nebulizer Part No 023F35 : I PURCHASED SO WILL HAVE 7 NEBULIZERS-ONLY HAVE TO STERILIZE ONCE A WEEK! $14.95 ea but I was willing to do 7 for the convenience at a stressful time in life .. plus I wrote it off as a medical tax deduction. http://justnebulizers.com/pari-lc-sprint-reusable-nebulizer-set.html?gclid=CLr_vtvLv8wCFQwxaQodgMwGBg
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3 Reactions@windwalker, you said that chlorine concentrates the MAC, does this mean that it does not kill MAC? Do we know that peroxide does kill these bugs?
Amakasin worked for me. I was diagnosed with pseudomonas in early 2016. The first time they gave me a 14 day Rx of ciprpfloxin. I I started feeling better in a few days, but within 2 weeks of finishing the Rx the symptoms started coming back. Amakasin is very expensive. I had very good insurance at the time, but I still had over a $1000 co-pay. I had to inhale it via my nebulizer 2x a day, for 30 days. IT WORKED and worth every dollar. Pseudomonas is commonly diagnosed with people with bronchestisis and difficult to eradicate. Good luck. Best, Elaine
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2 ReactionsHeather, according to what one of the experts said at the recent NTM
conference, it was only stated that chlorine concentrates MAC. They do not
recommend cleaning your counter-tops etc. with it. Not sure about the peroxide.
I cannot remember if I heard it there or on this forum about spraying peroxide
on your toothbrush after use. I know that Katherine does it. Will have to
investigate that more. someone in the audience did ask about WHAT to use to
clean with and they had no answer.
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2 ReactionsCan't find the post where someone said you can fill a bag with? Solution & tie it around your shower head to kill any Mac present. Was it peroxide? If so, what ratio?
Jen, first of all, you get a great deal of empathy from me. I have had only
one bronchoscopy procedure. That was the worse thing ever! They did it without
sedation of any kind. Anyway, back to you.......I guess you are totally
confused! The Mayo has a social worker and a psychiatrist you can talk to. Maybe
one of them can help you to sort out how to navigate through all of your health
issues. I know that has to be maddening when you get so many opinions. Start
asking to see the actual lab reports and have them explained. Sometimes having
them put a hard eye on it may bring more accurate diagnosis. Def do your
homework. Look up and learn all that you can about your health issues. There are
many medical institutions that are great sources of
information online. That info at least gives you ideas about what
questions to ask the Dr.
How are you feeling today? -Terri M.
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1 ReactionHey Jen. Diabetes is a pain the rear to deal with. I have friends that
battle it. It is tough. It is like boxing with the invisible man. I hope you can
get your levels straight soon. Big Hug! Terri M.
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