(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Welcome @beatitnow, do you have a first name .. so much more friendly! I would suggest you try to ready the past pages of our Forum .. my thinking is we will read a 300 page book for pleasure .. we sure will read 30 pages of the Forum to understand our shared disease better! Make notes as you go .. personally I cut and paste to a Word Document .. then feel free to ask questions .. we have a wonderfully supportive community who will jump in and share their experiences .. they are just great! I just wish they had been here when I was diagnosed in 2007 .. wonderful people!

@beatitnow, when you read the back pages you will read .. it is my understanding that after the antibiotic treatment the mycobacterium is still there but is not "colonizing/growing" .. you become "stable" .. but not really "cured". That is why you need to have follow up appointments with your Infectious Disease doctor that include at least: a sputum culture/Xray/pulmonary tests. At least for me it began with quarterly check up .. lengthened to semi annual .. then to annual. With the understanding that YOU know your own body best AND you call for an appointment sooner if you feel something is wrong..

@beatitnow, we are a public Forum that is how Mayo Clinic Connect works best .. we all pitch in to help and support each other .. sharing tips, ideas of what works or doesn't work .. you will find this works just great! We are ALL on this shared journey together .. keep coming back .. we will be here for you every step of the way! Hugs to you in this tough time! (AND you WILL BEAT IT!) Katherine

Hello @hishamhussain, thank you for the information .. quite interesting .. the Canadian website is very different than anything I have ever read on a USA site ie references to blood tests: "If, after four to eight weeks of treatment, there is little or no improvement in symptoms, blood tests may be repeated. If MAC is still present in the blood, your doctor may prescribe a new combination of drugs."

Do you think it refers primarily to HIV patients? I have not had any members being diagnosed with MAC via blood test. What are your thoughts as you read it? Hugs? Katherine

@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!! Katherine

FILTERATION OF HOME WATER SYSTEMS
Hello Katherine,
Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom...maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09

@maryjo2sell, Mary Jo .. you just LET GO Girl!! I am a big girl and made a choice .. I own my own choices!! However .. it will be interesting .. I ordered an Aerobika from a medical supply company .. it will be interesting to see the difference .. what # I use on the new one. I will let you know! But truthfully I have been satisfied with my previous purchase .. with it I have been able to get up more sputum .. after doing my best by myself .. always get a bit more then using that Aerobika .. so I feel it paid for itself already! Hugs! Katherine

@david1952, David, I don't have a clue if this product would be better or worse for you .. I used it daily for 30 months for my inhaled antibiotic Amikacin plus saline. I had a whole system worked out if you are at all interested .. using a tube and mouth piece .. just watched tv as I did it .. boring as all heck but it killed the nasties! Hugs! Katherie
http://justnebulizers.com/pari-vios-nebulizer.html

@tessie, Tessie, FIRST QUESTION: is your doctor an Infectious Disease doctor? SECOND question: ask him .. How many MAC patients have you treated in the past 12 months? Why am I saying this Tessie? Because I am very concerned because you are being told: 'said I won't need to collect sputum after I'm through as I've already them. Thankfully the last sputum test, mine haven't grown and I'm glad more specimens are not required."

Tessie, this is what Dr. Aksamit did for me and I would recommend that you REQUEST IT STRONGLY of your doctor .. YOU are you OWN BEST advocate .. REQUIRE nothing but the best from your doctors and you can quote me!! You go Girl!! Hugs! Katherine

ANTIBIOTIC TREATMENT .. FOLLOW UP AFTER ENDING TREATMENT
It is my understanding that after the antibiotic treatment ends the mycobacterium is still in the lungs but is not "colonizing/growing" .. you become "stable" .. but not really "cured". That is why you need to have follow up appointments with your Infectious Disease doctor that include at least: a sputum culture/Xray/pulmonary tests. At least for me it began with quarterly check ups .. lengthened to semi annual .. then to annual. With the understanding that YOU know your own body best AND you call for an appointment sooner if you feel something is wrong.

Update on my Last Doctor Visit
Posted by @decosmo in MAC & Bronchiectasis, 1 day ago
Hi all, I met with Dr. Leventhal MAYO in Jacksonville, on Thursday and after a day of testing to find out the reason for the pain when I breathe on my left lung, the news was positive. He is a great doc. Sraight forward, sense of humor and helps you feel everything will be okay. He spends whatever time you need to spend to get all your questions answered. This is the second time I meet with him. The doc told me it was an infection flare up and because of the location of my bronchiectasis and NTM on my left lung, the flare up was most likely causing the pain. He also gave me some good news: my PFT test results showed a slight improvement from the one in May. MAC is dormant. Will have to wait for the sputum results. He doesn't expect to find anything but MAC. If I can stay at the level I am at now, he doesn't for see putting me on the MAC treatment. He told me to keep doing what I am doing regarding preventative measures. If everything can stay the same, I don't have to see him for another year. Fingers crossed this is the case. He told me walking is a must to continue to increase lung strength and function.
On a not so positive note, my blood work is showing my MPV levels are high and when I went back and checked my previous bloodwork the MPV levels have been increasing for the past six months. The past three months the results have spiked considerably. Do any of you had high MPV blood platelet levels in the past or currently? The doctor didn't get to see the blood work before we met so we didn't discuss. I am thankful overall for the results and hopefully the doxi antibiotic will take care of this recent flare up. Rosie

@decosmo Hi Rosie, I am going to answer you here because I think you will get more of a response here. Great news on not needing to go back for a year! BUT I personally have no experience with high MPV levels in the blood work .. anybody else able to jump in on this??

Really like his suggestion of walking as a great "must to continue to increase lung strength and function" .. good advice for us all! Inside or on a treadmill if bad weather. Keep us posted Rosie and I'm hoping someone will jump in with info on the MPV levels. Hugs! Katherine

Have Bronchiectasis, recently diagnosed with pseumonas.
Posted by @shiell in MAC & Bronchiectasis, 8 hours ago
I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and relatively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

@shiell I am going to answer you here because I think you may get more responses on this main MAC Forum. I actually remember two different members who have posted with the same issue .. I am going to copy what they said .. I hope it helps some. Please keep coming back with any further questions .. we will try to help in any way we can .. sending you a hug in this tough time! Katherine

PSEUDEMONIS INFECTION- COUGHING Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe - my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC - has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff - you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey - and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

Somone has upset you deeply and you shouldnt have to feel this way. You know, and everyone else does too, that you are doing a fantastic service. So don't let someone else take your mind away from this. Don't let them steal your joy!
You are loved and appreciated.
Becky

Thanks Katherine!
David