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

Discussion
Comment receiving replies
@nnassiri

Dear Katherine, and all.
My wife had been diagnosed few days ago with MAC. She had Bronchiaticsis since 2000. I really would appreciate it listening to you more about the medications you did, side effects, and how successful they were. I hope we are able to reach Dr. Timothy Aksamit at Rochester Mayo Clinic.
God bless you
N.

Jump to this post


Replies to "Dear Katherine, and all. My wife had been diagnosed few days ago with MAC. She had..."

Nnassiri...you will find this support group is very helpful...our mentor Katemn is awesome with guidance, resources, hope, references, and pure compassion.
As your time and energy allows there are videos posted from another center of NTM specialists...out in Denver....they have workshops with experts on NTM from USA and other countries....they are well done...divided into 30 to 40 minutes segments.
Here they are for typing into your computer
Nationaljewish.org/ ntmvideos. For 2015
And
Nationaljewish.org/ntmvideos2016
Tdrell

Hi guys. Many posts about making home made ice cubes versus using the ice maker in the freezer. I do that also but I go one step further. We purchased a Berkey water filter about 4 years ago. It has a carbon filter and filters out more bad stuff than any other filter on the market. It's portable and doesn't require any installation. We take it with us when we camp and/or travel. (We are snowbirds). The unit we have costs about $300 but the filters last about 6 years depending on how much water you use. (Spendy investment but not if you calculate how much you will spend on filters over that time period). I have metastatic breast cancer and as a result my immune system is compromised so I feel really good about using this for all drinking and cooking water. (We use a personal water well for 6 months a year). We get no personal enrichment in promoting the Berkey other than making others aware of this wonderful product. Look up their website on the internet to get more details.

Wandering, thank you for your thoughts .. but our Forum is VERY concerned about Mycobacterium. Upon a bit of research I discovered one reviewer who said:

Big Berkey must be used everyday or bacteria will grow in dry filters, If you go on vacation have some one baby sit your Berkey, take it with you, dry out filters for 3.5 weeks turning everyday or just buy new filters for $107. Berkey needs to inform customers about this. I had to call Berkey to find out this information.

Frankly, even this one opinion was enough to concern me .. but then it appeared that the a big selling point for this product was removal of fluoride. On this Forum .. our concern is not taste .. it is concern of possible removal of mycobacterium.

So thank you for thinking of us .. but I am concerned that anyone on our Forum consider this product without REALLY researching it .. possibly reading reviews on Amazon.com? Best to you on your travels! Katherine

Yes I believe that is the unit that we have. After the water is filtered the bottom holds about 1-1.5 gallons. We don't use ANY plastic containers for our filtered drinking water. It takes some shopping around to find glass water bottles but that is what we use. If the filtering flow gets slow, they have instructions on how to clean the filters - not replace them. We have had ours for about 4 years and have only cleaned the filters a couple times. Quality product and the current price has actually come down since last year when friends bought one.

Would you mind sharing the instructions for cleaning the filters? I've just installed my whole house system with 0.2 micron filters, the type that filter out the mycobacteria (and viruses) - they're expensive, though, so if I can make one last longer, would be a mitzvah! Thanks!

I have copied and pasted the instructions for cleaning the filters below. We have had our unit for 3.5 years, have cleaned the filters per the following and never replaced the filters:

Cleanliness is very important. Do not allow contaminated water to enter the core of the filtering element. This can be prevented by placing your finger over the hole where the water exits the filter.

1. Empty all of the water from your Berkey system.

2. Remove the top container and set it on its side on a solid surface like a table or countertop.

3. Remove the filters by unscrewing the wing nut that secure the element to the container.

4. Hold the filter under running water, with the exit hole pointed up.

5. Using a new 3M scotch Brite pad carefully scrub the Black surface of the filter element for several minutes.

6. If water being used may contain harmful bacteria or other contaminants at this time you should submerge the entire filter into water containing the bleach solution as described above.

7. Set the filters aside and wash your hands.

8. Reassemble the unit.

Even if (or when) you replace the filters, I think over the years you have saved a lot of money versus the other units. PS: It is a mitzvah to find something that works as advertised.

Boomer, if you read the info on this unit on Amazon.com you will find it is primarily to remove things like fluoride .. NOT mycobacterium. If I was you I'd do some research on mycobacterium. In my research on shower heads I was told to actually replace them monthly .. there was no way to effectively remove/filter the mycobacterium as well as these shower heads .. they are used in hospitals. Just my opinion .. hate to see you be so smart about your system .. then defeat it with filters than are not working?

One source: http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm466963.htm
Best to you .. Katherine

Thanks, and thanks for letting me know which system you're using, which, I noted only after I asked is a individual filtering device for drinking water...I have Pure T filters in a whole-house system...but I will check w/them to see if these filters, which cost around $90/per can be cleaned...

Thanks, K...see above...this is not what I have, as I agree, most filters do not rid water of bacteria & viruses... why I have the 2 I have in my whole-house system @ 0.2 microns as recommended by Nat'l Jewish - filters out all bacteria & viruses...

Many thanks everyone. A pulmonologist had seen my wife and looked at the results. He said there is no need for medication as she is asymptomatic. He added that MAC comes and goes, and asked to repeat the sputum culture one more time. BTW, My wife is on Symbicort. God bless you all.
Nasser