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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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Dear All! 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @colapyrus .. Jan, @coylemel333 .. Melody, @cowboy1997, @dianelobosco .. Diane, @david1952 .. David, @del .. Del, @digmeme .. Linda, @donut .. Donna, @ehliny .. , @elaine .. Elaine, @flib .. Flib, @fransky, @georgette12 .. Gina, @jcarr .. @ginak .. Gina ,@gggolfs, GG, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @gaylejean .. Gayle, @jewel8888 .. Julie, @josephene .. Jo, @joanney .. joanney, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Mary jo, @marzz .. , @megan123, .. Jennifer, @melissa23 .. Melissa, @melrosedecosmo .. Rosie ,mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tessie .. Tessie, @tutti .. Lisa, @windwalker .. Terri, @worriedson .. Terry, and anyone else I forgot to make note of!
I have waiting to hear from Dr. Timothy Aksamit on an email I had sent him .. I KNOW just how busy he is but I knew I would get a definitive answer from him that we could trust on the below issue .. it MAY NOT be what we want to hear .. but we do have an answer:
THE QUESTION I ASKED HIM WAS: A question has come up: Does Mayo Clinic keep track of MAC patients so that when/IF the CDC starts to keep track .. just as they do of TB patients .. Mayo Clinic has the data! Below are the related posts: Posted by @katemn, just now @irene5, Irene, that is so interesting .. I really wonder if Mayo Clinic is doing ANYTHING about reporting! I think I am going to copy your post and send to Dr. Aksamit .. ask him if Mayo is doing ANY type of record keeping on MAC patients. *As far as I have been told, it is not legally mandatory to report cases of MAC to the CDC like it is with TB. They have flagged my case in case it comes to that because I made six trips to China and have two Chinese children who were treated with Isoniazid due to positive PPD. I am certain my MAC has nothing to do with that. Positive PPD among international adoptees has to do more with BCG and being given a live virus instead of inactive virus like in the US. If MAC cases had to be documented, I believe things would change for us in terms of treatment. Irene * I do not know the answer to that. I wish all that do get this would be treated at a non-profit learning institution like Mayo, John Hopkins, etc. That way data could be collected. -Terri *Indeed there is no mandatory reporting requirement for MAC as there is for TB or HIV, as they are communicable (person to person), MAC and all other NTM's are not. The idea of giving them a mandatory reporting designation could be a double-edged sword: on one side, the real number of infections would be known which would help dollars flow to research on treatments/cure; on the other side, unless designed accordingly, it could compel folks who are asymptomatic to get treatment (as is currently the case with TB) which of course is not desirable...the US DHHS would be the determiner of reporting status and requirements therein.
DR AKSAMIT ANSWER:
Mrs. Katherine,
Many apologies for the delayed response. Let me get back on this question first.
NTM is NOT a reportable disease in the US, other than in Oregon. This is different than tuberculosis (TB) as you have pointed this out. The US Bronchiectasis and NTM Research Registry, composed of 13 academic centers, collects comprehensive information in a centralized data base of patients in the US with bronchiectasis with and without NTM. Mayo Clinic, like many academic institutions, has the capacity to search our Mayo patient data base for all patients with a diagnosis of NTM or have had NTM isolated in sputum. The primary (and only) limitation of creating local, national, and international data bases of NTM patients is the lack of funding and research support. So, to answer you question... it is easily possible to track and collect data for NTM patients with funding and research support.
Hope this helps. Please let me know if I can provide any additional information or clarification.
Dr. A
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:01
<br><br><br><br><br>Hi Katherine, I did not get an attachment if that is what you had intended. <br>What" issue below" may we not want to hear?<br> <br><br>
<br><br><br><br><br>Please disregard my previous post. I did find the message regarding this. <br>Thank you.<br><br>
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1 ReactionHi. I am my mom's primary caregiver. She was recently diagnosed with MAC following a bronch clean out for pneumonia. She is 79, has other health conditions and is very thin. She has been loosing weight, consistently, for the last few years. She never has an appetite and just keeps saying that nothing tastes good. She has lost 25 pounds in the last few years. She struggles with fatigue, some days worse than others. Do the fatigue, the weight loss and the loss of appetite sound like MAC? We have not yet started a med program for MAC. Docs want to see her regain some strength and weight from recent hospital stays. We are thinking, and praying, about whether to go that route at all. Since we are new to this, I was glad to find this forum. Thank you for any feedback.
- Michelle
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1 ReactionThat's me in a nutshell and is MAC related for me. That doesn't mean it is for your mom since I don't know what other health conditions she has, but that's what happened to me. Irene
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1 ReactionI experienced and experience the same symptoms as your mom Michelle. I started losing weight and I didn't have it to lose. I continue to struggle with fatigue and trying to maintain the 89 lbs I now weigh. I used to weigh 105. My docs told me the same thing regarding regaining my strength and hopefully putting on some weight. Was your mom on antibiotics while in the hospital? The antibiotics destroyed my stomach and I now have SIBO and am fructose intolerant which makes it even more difficult to eat. If she doesn't have SIBO there are healthy diets that can help her hopefully gain weight. I will keep your mom in my daily prayers.
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1 ReactionThis all sounds very MAC...I too have another health condition (RA) which alone causes these things (weight loss...fatigue) so yes, I believe that once she gets the MAC treated she will begin feeling better
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1 Reaction@orthogirl .. Michelle, I so feel for your situation. I have many friends who are caretakers .. it is a very tough role. Truthfully the symptoms you indicate are VERY typical for MAC .. weight loss, little appetite. fatigue etc. For me I could only say if I was sitting in your shoes .. I would request a COPY of the TEST RESULTS from the "bronc cleanse. That would tell you IF the mycobacterium is colonizing .. the NAME of the mycobacterium .. AND the NUMBER of colonies! Read over the report carefully! Do NOT let them tell you no! Get your Mom to sign whatever papers she needs to for you to get that copy!
Personally if you have read ANY pages of our Forum you know I AM BIG on being your own best advocate .. and in this situation .. you are your Mom's best advocate. AND you cannot be an advocate UNLESS you KNOW what you are dealing with. IF the mycobacterium is NOT colonizing . . there is absolutely NO reason for her to start on the MAC treatment. IF there ARE some colonies .. they SHOULD have set up a routine sputum culture to be analyzed in a specific period of time to see if/WHEN the MAC does/does NOT start to colonize.
They cannot possibly know if/ when she needs to go on the antibiotics unless she is checked again.. sees if the MAC IS colonizing.. Next question.. Is she going to an Infectious Disease doctor who KNOWS and is currently treating MAC patients?? This is VERY important to check out .. be frank and ask! We KNOW you want your Mom around for a lot more years .. truthfully you care a LOT more than the doctors do. Do your 'due diligence! Hope the above helps just a little! Sending lots of positive energy and a Big Hug in this difficult time .. know that you are here in a community of supportive people .. we are here for you every step of the way! Katherine
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1 Reaction<br><br><br><br><br>Hello Pamela! In answer to your questions.... I was diagnosed <br>with MAC in 2005. One pulmonologist of three wanted me to start the three drug <br>treatment. I declined. Was given standard antibiotics off and on over the <br>following months and that was enough to knock the MAC infection down. I remained <br>sickly and short of breath over the years. And got worse. Finally, sought <br>treatment at the Mayo in 2013. I was then put on monthly prophylactic <br>antibiotics that were switched out bi-monthly as to not build a resistant strain <br>of MAC. I believe they do not want to treat me now with the triple drugs is <br>because I do not have time on my side. I may need a lung transplant at any time. <br>I am doing fine right now, but am told I could go downhill unexpectedly. (I have <br>numerous comorbid lung diseases) The tobramycin acts fast. It knocked down <br>the six colonies I had in a month, but within a month I have some kind of <br>infection back. It is a vicious cycle really. Just not as bad as the full blown <br>MAC. I am a very active person and feel better than I have in many years. I <br>started on the alternating Tobi five months ago. I stopped coughing altogether <br>after the first month on it. I walk a good distance and ride my bike about four <br>miles a day. It's mainly the stairs in my house that get me out of breath. My O2 <br>numbers have increased. I was at 91 for years, now, I am at 95 and 96. I hope <br>this info helped. Hugs -Terri M.<br> <br><br>
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1 Reaction@21042, Kathi, as you have already found out .. this is a wonderful supportive community of lovely people who will be there with you every step of our shared MAC journey! We are glad you have found us. Each of us need to figure out a schedule for our meds that work for our own bodies. For me personally Rifampin REALLY gave me sleep disturbances .. so for me I took it first thing in the morning on an empty stomach. (Absorption of rifampin is reduced by about 30% when the drug is ingested with food.)
I am going to answer you on our Main MAC & BRONCHIETASIS thread so you can get started getting support from all our wonderful members! Hugs to you! Katherine