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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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@beatitnow, Amy, and @chinasmom, Becky, thank you for jumping in .. really good advice! In terms of the testing needed .. from my File Cabinet
TESTING-baseline and periodic
1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY
OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)
**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY
TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'
Good to print out the above and show to your Pulmonologist if necessary. You are your own best advocate! Hugs! Katherine
@beatitnow, Amy I do NOT want to put concerns in your head .. BUT for me Rifampin was the tougher one for me so I would start it last. My only side effect was sleep disturbance and kind of "restless leg" at night which ended when the med ended .. EVERYONE is different so do NOT think my experience will be YOUR experience .. but that is why I took Rifampin first thing in the morning. Anyone else jump in with their thoughts?? Please do! Hugs to all! Katherine
@irene5, Man alive Irene .. if you had a doctor who told you to "call him any time day or night" .. you are one blessed gal! WOW! I would go out on a limb and say you might be the ONLY one on the Forum who got THAT message! Lucky gal! So happy for you! I think the rest of us kind of have to slug it along .. AND I SO agree with your statement "you know your body best. You will need to listen to it and it's infinite wisdom" Think I will add that to my File Cabinet .. love it! Good advice .. thank you for jumping in .. we are one great community .. that is why we are so strong .. love it! Hugs to all! Katherine
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1 Reaction@katemn....this is great! I love your "File Cabinet" information! 🙂 Thank you and everyone else for their support right now and to come! 🙂 Amy
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1 ReactionThx.. I am new here and just started to figure out to check on the notifications. 😉
Yes I stopped her meds and no more side effects. Going to Dr. In the am.
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1 Reaction@ilgrp4e .. Carmen, SO glad you stopped the meds and your Mom is better! Tomorrow be your Mom's BEST ADVOCATE! Take what you have learned here and stand up for her! Print everything out so you have it in your hands! There is NO good reason he told you just to take her to the ER! YOU are in the driver's seat! You tell HIM what/how you want the meds scheduled! Remember YOU are the EMPLOYER .. HE is the employee! You are taking good care of your Mom .. you just continue to do so! Good luck! Hugs to you both! Katherine
@ilgrp4e .. Carmen .. when you get an email .. just go to the bottom and hit "View & Reply" .. it takes a few seconds to cycle .. but it will then take you to the proper post. Hugs! Katherine
Hi, this is Kathi again. Just thought i would check in since i havent posted for a while. I am doing great on these meds. By following Pamala's schedule of taking my meds between 9-10 at night-all at one time, i am no longer sick all the time. Im even back singing in the choir and my energy level is improving daily. I was losing weight (which i didnt need to do, but a 94 year old choir member told me to get Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that. Its been good because i get more of my daily vitamins and minerals. I use skim milk, so i get my daily calcium. I go for a CT scan tomorrow to see how i'm doing. My doctor will be happy that i no longer am sick from the meds. With all the encouragement on this forum, i kept going and it DID get better. Thanks , (21042) Kathi
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2 ReactionsCarmen, i was so scared for your mom and relieved this morning that she's alright. Take good care of you and your mom. Becky
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1 ReactionKatherine and the group, i need some help. I was diagnosed with bronchiectasis in May 2014. I had a culture come back with mac last November but there was suspected MAC by a radiologist in his ct report. I'm sure I've had both before a proper diagnosis was made. My first pulmonologist was the best I could have hoped for but he had to go to isreal to be with his family. I've had another that just left the practice. I had a positive sweat test so they sent me to Washington University C.F. clinic but further testing showed no cf gene mutation. They agreed to keep treating me there but i felt my care wasn't a priority for them. I had moderate pseudomonis and moderate staph from a culture at the other hospital and i faxed them the results and requsted treatment. They didnt want to treat because the sputum sample at their lab did not bring any results. I had told them all along that there was nothing in the cup that it was the middle of the day and i was too dry to get anything. My nurse practioner treated with levaquin for three weeks. That same culture was the one that MAC showed up in so i was started on the big three 3 times wkly. I was reading things in the forum about ID doctors so I found an Infectious disease doctor at st.louis university hospital. She first said she doughted i had MAC and ordered 4 weely sputum tests and changed my meds to daily she handed me off to a student with communication difficulties and said come back in 3 months to see the student. So still looking for good care i went to a pulmonologist at st. Luke's and he did the same. The last sputum culture and sensitivity he ordered came back with moderate amount pseudomonis aureus. So im having to plead with him to treat it and he wants to wait to see if im getting sicker then he would know how to treat. He is not doing monthly anything. He ordered a ct and return in may. So i need a doctor who is treating MAC in the St. Louis Missouri area. Im open to suggestions on how to get the doctor to treat my secondary pseudomonis infection. Also need help applealing my insurace for my pain medicine . Ive been taking butans a long acting opiod for years. They want to stop payment for any opiod after june related to the addiction and overdose epidemic. Thanks so much for any advice.
Becky
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