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

Hi all, I'm sure I read somewhere in these posts about whether bottled water; spring or purified, also contained the MAC/MAI bacterium but I can't find it now. I'm trying to decide if I should get a water cooler. Anyone have any suggestions as to whether spring or purified would be better?
Thanks
Gina

@ginak Gina, this is just me .. but I think I would definitely NOT get a water cooler! See the below info if mycobacterium is your concern. When I went to a lot of trouble putting in a 4-Stage 0.1 Micron Ultra-Filtration Water Filtration System in my kitchen sink .. I took all the particulars including pictures to my appt with Dr. Aksamit. He IMMEDIATELY pointed out the problem point .. the faucet .. pointing out no matter how carefully I filtered the water "biofilm" would build up on the interior of the faucet. He also followed up with this message to me: Truthfully I do not regret installing it .. it may NOT be perfect but I still think better than the tap water??

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.

Gina, I personally have chosen to install the 0.2 micron filters shower heads .. they are costly and must be changed frequently so it is on a shower that only I use. I have on the Forum how to purchase them if anyone is interested. Hope the above information helps someone.

Hi there,I had pseudomonas this past fall. I had to have a PICC line inserted & 21 days of IV antibiotics. I've been coughing for 10 years now but the pseudomonas cough was quite different. I had a overwhelming amount of mucous when I would lie down for bed. I would wake up "drowning" in mucous in my airways. It was just awful & jarring!!! The sputum had a distinct taste, smell & color (dark gray & dark green). This was when my bronch culture hadn't completely grown out yet to show the MAC, but the MAC was there during the time that I had the pseudomonas. Yucky stuff & not to be messed with! ~Jen 🙂

Hi Katherine

I cnt get sputum sample even with a test at hospital to force sputum up. Didn't wrk for me. Diagnosed recently with Mac. Diagnosed already few months ago with bronchioectasis. It seems that a bronchoscope is the only means??? Should I be on a nebulizer with saline to help. Right now I have no symptoms of anything. No cough, little sputum. Use aerobika daily anyway. Pulmologist recently said have lost 1/3 lung capacity. He thinks have had for awhile. Getting referral to infectious disease guy asap. Might end up at Mayo eventually.. our insurance won't cover. Am from Toronto .

@megan123, Jennifer, question: how did you get diagnosed with MAC? Make SURE your referral to an Infectious Disease doctor is ALSO treating OTHER MAC patients so they know what the heck they are talking about!? ASK them: How many MAC patients have you treated in the past 12 months?! Sorry to be so tough but YOU have to be your own best advocate now in this situation! If you have indeed lost 1/3 of your lung capacity .. YOU have to be your OWN best advocate at this point .. nobody is going to do it for you. Read through the past pages of our Forum ..I promise you .. you will end up knowing more about our shared MAC disease than MANY doctors know! Then do your "due diligence" .. write our a list of questions to ask this new Infectious Disease doctor.

Note what Member @steve1948, said: NEBULIZER WITH ALBUTEROL My doctor prescribed "Sodium Chloride" (which amounts to nothing but a salt solution) to add to my Abuterol in the nebulizer. It definitely makes one cough, and helps a productive sputum for me, not as much as I'd like but every little bit is a blessing. Might you ask your current doctor for this? Definitely the Albuterol would open your airways.

Don't know if this would help you .. but I found this:
Canadian Citizen
As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq

Jennifer, I do hope some of the above might help you .. know that I am thinking of you .. PLEASE keep us posted! Sending you a hug in this tough time! Katherine

thank you everyone for the useful info on all the ways to get sputum... I agree with the other member that the cough with pseudemonas is very different from the MAC cough - it is much more "violent", hurts the ribs, and really productive. I could cough up a good one quarter cup of stuff in 15 minutes - color was off white, gray maybe a bit greenish, but mostly grey - and very thick and mucousy... much worse when I first lay down to sleep and would cough violently. It was my GP doctor who ordered the test as my pulmonologist, even though I told him about how much I was coughing, never thought to order the test. So if anyone out there with MAC is still coughing a lot, it can not hurt to have your sputum tested for pseudemonas, just to rule it out. The drug really targets it and it did clear up within 3 weeks. Thank you Katherine for the info on harmonica therapy! Pamela

Hi Katherine, thanks for your input. I don't understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I'll just stick to the bottled water. Thanks, Gina

<br><br><br><br><br>Hi there.  Diagnosed thru bronchioscopy.  Pulmonary Dr has made no referral to infect...Dr, so I will for a second opinion.  Tk u for your help Katherine.  I am scared about all this.  Your system is better in states. Wait lists for specialists is crazy.<br>  Just wondering if I can afford Mayo ....hopefully it's reasonable❤️<br><br>

@ginak, Gina, I know what you mean about hard to understand .. but myself .. I decided that I would just leave it to the experts knowing those darn mycobacterium are nasty little critters anyway so there are probably going to be a lot of things about it I may not understand fully! Hugs! Katherine

@megan123, Jennifer, I KNOW it is such a scary time .. we ALL have walked this walk before .. that is why we are all here for you. Here are two options .. either one is EXCELLENT .. whichever one you can get into first/easiest .. you go Girl! Just get started .. do your due diligence .. NO one cares about your body as much as YOU DO .. take good care of it so IT can take good care of you for the rest of your lifetime!

A WORD FROM MEMBER @windwalker Terri I will be going out on a limb here by saying this, but I feel compelled to. I have lost precious lung function over the years by seeing 'the best pulmonologists in the city', of any city I have lived in. This is lost lung function I will never regain. I have found that many drs (with great references) are not really staying current, nor have the time for delving into specifics. Lungs are the most delicate organs you have, I would not trust them to just anybody. Only go to highly reputable medical centers that are cutting edge. i.e. Mayo, NIH, JNH, John Hopkins, to name a few on the east coast. - I sincerely hope I did not offend anybody. I know there are good drs out there, but they are hit or miss in the 'for profit' segment.
This said Jennifer .. GO FOR IT!! Below are two GREAT options! Print it out and DO IT! Good luck!

1. MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
* Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan.

For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s

*FROM COLLEEN: There are few clinics that run at capacity at one Mayo location but perhaps not another. For example the Pain Rehab Clinic isn't accepting new patient in Rochester at the moment but they are in Arizona and Florida. As you can imagine, the capacity is constantly changing therefore I can't say for sure when which clinic is at capacity. I would tell members that if they can't get in at one location that they ask about getting in to another location. And yes, persistence may pay off.

*MEDICARE: Mayo Clinic accepts new Medicare patients. Mayo Clinic is one of the largest Medicare providers in the country. Unfortunately, we can’t honor all requests we receive from Medicare patients who want to come to Mayo Clinic. We accept Medicare patients in all parts of our practice where we have the capacity to accommodate them and most importantly, as the medical needs of these patients require. Again, I would tell members that if they can't get in at one location that they ask about getting in to another location. And yes, persistence may pay off. MAYO .. AND MEDICARE https://connect.mayoclinic.org/discussion/medicare-and-mayo/

MAYO CONTACT INFO ..NON PROFIT PRICING STRUCTURE
If you seek help at non-profit institutions like the Mayo or John Hopkins, to name a few; their price structure is lower than the for profit medical institutions. Sometimes they will work will you on payment. They will price out the services before you receive them if you ask. I know that people come from all over the world to go to the Mayo. They have a special dept that handles that.

*From Colleen: Here is information about Mayo Clinic's Billing and Insurance http://www.mayoclinic.org/patient-visitor-guide/billing-insurance which includes information about Charitable Care and Financial Assistance at Mayo Clinic http://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

2.
JEWISH NATIONAL HEALTH
https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional. You will have an excellent experience.

Jennifer, I hope the above helps .. keep us posted .. we have all been on this same MAC journey! Hugs to you at this tough time! Katherine