Thank you for offering to help. I have just been diagnosed NTM (Abcessus) and want to know how to obtain NTM free water. Boiling? Reverse Osmosis that is sold at Whole Foods? What brand/type of home filter? Thank you!
Let me provide a short list, I'm sure others will add to it.
NTM Free water -
Yes -
Boiled 10 min plus 1 min for each 1000 feet above sea level. Store in sanitized containers
Bottled SPRING water (Many brands tested by Dr Joe Falkinham and found to be safe)
Water filtered through a .2 micron filter - either at the faucet or in a Life Straw bottle or similar
No -
Ordinary tap water unless you have it tested for NTM - applies to both wells and municipal water supplies
"Filtered" bottled water - you do not know what the source is, nor how it was filtered
Distilled water (Per Dr Falkinham, may not be bottled under sterile conditions)
Reverse Osmosis water
It seem the highest concern for having NTM free water is if you also have GERD and may aspirate reflux into your lungs. My ID doc told me, with no evidence of that, I need not be "as concerned." But everyone is different.
If anyone else would like to add to this list, I will make it a more complete document and add it to the NTM Resources Discussion.
I honestly don't remember the company that tested the water but I did get it from one of the post here. I ran water from my bathroom tap and sent it in. They sent me the results back.
I have a RO and carbon filter and was told it was not enough. I also needed to boil at least 10 minutes. I finally bought an insta pot with glass lid to do that instead of having to monitor the timing.
Let me provide a short list, I'm sure others will add to it.
NTM Free water -
Yes -
Boiled 10 min plus 1 min for each 1000 feet above sea level. Store in sanitized containers
Bottled SPRING water (Many brands tested by Dr Joe Falkinham and found to be safe)
Water filtered through a .2 micron filter - either at the faucet or in a Life Straw bottle or similar
No -
Ordinary tap water unless you have it tested for NTM - applies to both wells and municipal water supplies
"Filtered" bottled water - you do not know what the source is, nor how it was filtered
Distilled water (Per Dr Falkinham, may not be bottled under sterile conditions)
Reverse Osmosis water
It seem the highest concern for having NTM free water is if you also have GERD and may aspirate reflux into your lungs. My ID doc told me, with no evidence of that, I need not be "as concerned." But everyone is different.
If anyone else would like to add to this list, I will make it a more complete document and add it to the NTM Resources Discussion.
Most water testing companies (filtration companies) test for TBS but I was told all water on earth has some MAC and nothing is safe for the vulnerable without boiling. Distilled Water has been put thru reverse osmosis but that also doesn't kill NTM. The concern for having NTM free water (need for boiled water) is that people with lung problems are more susceptible to MAC. People who want to avoid getting the MAC, and avoid the antibiotics that come with it, usually want to be careful of their water and soil. If you want a test for MAC, that one test alone is about $500 and is only for that day. It could change the next day.
MAC is in all municipal water systems, don't use it. Distilled or puried is safe. I steam a lot of vegetables and so use distilled for cooking too. If you shower use a low flow rainwater shower head, this will cut down on aerosol spray.
Yes, I am paranoid!
Dr Joe Falkinham is the US authority on NTM in water. He and his students, in his university laboratories, did extensive testing. They deemed the bottled spring water safe.
Filtration companies are not the place to have your water tested for mycobacteria. It is a laboratory test done in just a few labs in the country. The one that tested ours six years ago is either gone or under another name. You said "If you want a test for MAC, that one test alone is about $500 and is only for that day. It could change the next day...." Can you explain why? My water is considered safe because my home also has pink slime mold - per Dr Falkinham, they cannot exist in the same environment. But, as an additional precaution, we keep our water heater set to 135F. At that temperature NTM does not survive.
Guess there are many different opinions. I have taken 17 classes o Bronchiectasis and I will go with the boiling of the filtered water because I have no immune system in addition to the lung issues. I have tested the bottled water from different companies with the TBS monitor and none have below the .2 microns which means there could be MAC. My class also said that water heater is not safe at 135 without a MAC filter which used to be available but they stopped selling to individuals recently. So baths but not showers is recommended. Let's hope be both survive this for years to come.
Guess there are many different opinions. I have taken 17 classes o Bronchiectasis and I will go with the boiling of the filtered water because I have no immune system in addition to the lung issues. I have tested the bottled water from different companies with the TBS monitor and none have below the .2 microns which means there could be MAC. My class also said that water heater is not safe at 135 without a MAC filter which used to be available but they stopped selling to individuals recently. So baths but not showers is recommended. Let's hope be both survive this for years to come.
Can you tell me what a TBS monitor is? If you mean a TDS meter, for measuring total dissolved solids in water, by definition it is measuring particles smaller than or equal to .2 microns in size, the threshold for excluding mycobacteria. So a TDS meter does NOT indicate water is unsafe. If you are talking about a TSS monitor, measuring total suspended solids, these are not readily available to the home consumer, but water management professionals. Is this what you are using?
Can you tell us what classes are being offered? Is this through any of the institutions expert in treating MAC and Bronchiectasis such as National Jewish Health, Mayo, University of Texas - Tyler, Emory, NYU - Langone or Mass General or a few others.
What classes are you taking, and who offers them?
Too many anacronyms to remember. TBS is for streaming . I had a lab test my water and they used several things. In the end I got a carbon filter, reverse osmosis, alk filtration system. I was told the solids with the carbon only was 50, the test showed the reverse osmosis was about 80. The bottled water was 150. Life straw brought all of them down to zero. Boiling brought them all down to zero. I was told that I needed it to be zero to keep the MAC away. Is that not true?
The classes were offered by several people that studied at NJH but they are not doctors themselves. They worked with doctors to determine how to prevent getting the MAC in patients that were susceptible to it. They went out on their own to help others with what they learned. I found it very helpful. It doesn't show all sides of the story though so it is good to listen to other people. Thanks for you input.
Too many anacronyms to remember. TBS is for streaming . I had a lab test my water and they used several things. In the end I got a carbon filter, reverse osmosis, alk filtration system. I was told the solids with the carbon only was 50, the test showed the reverse osmosis was about 80. The bottled water was 150. Life straw brought all of them down to zero. Boiling brought them all down to zero. I was told that I needed it to be zero to keep the MAC away. Is that not true?
The classes were offered by several people that studied at NJH but they are not doctors themselves. They worked with doctors to determine how to prevent getting the MAC in patients that were susceptible to it. They went out on their own to help others with what they learned. I found it very helpful. It doesn't show all sides of the story though so it is good to listen to other people. Thanks for you input.
Can you tell us where you found the classes?
Zero is not the answer - the water must be tested for NTM, there can still be other matter in there. There is a huge difference between dissolved solids, ,etc. And I can tell you about safe water, but not today - will be gone until this evening.
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Let me provide a short list, I'm sure others will add to it.
NTM Free water -
Yes -
Boiled 10 min plus 1 min for each 1000 feet above sea level. Store in sanitized containers
Bottled SPRING water (Many brands tested by Dr Joe Falkinham and found to be safe)
Water filtered through a .2 micron filter - either at the faucet or in a Life Straw bottle or similar
No -
Ordinary tap water unless you have it tested for NTM - applies to both wells and municipal water supplies
"Filtered" bottled water - you do not know what the source is, nor how it was filtered
Distilled water (Per Dr Falkinham, may not be bottled under sterile conditions)
Reverse Osmosis water
It seem the highest concern for having NTM free water is if you also have GERD and may aspirate reflux into your lungs. My ID doc told me, with no evidence of that, I need not be "as concerned." But everyone is different.
If anyone else would like to add to this list, I will make it a more complete document and add it to the NTM Resources Discussion.
Sue
-
Like -
Helpful -
Hug
1 ReactionI honestly don't remember the company that tested the water but I did get it from one of the post here. I ran water from my bathroom tap and sent it in. They sent me the results back.
I have a RO and carbon filter and was told it was not enough. I also needed to boil at least 10 minutes. I finally bought an insta pot with glass lid to do that instead of having to monitor the timing.
Most water testing companies (filtration companies) test for TBS but I was told all water on earth has some MAC and nothing is safe for the vulnerable without boiling. Distilled Water has been put thru reverse osmosis but that also doesn't kill NTM. The concern for having NTM free water (need for boiled water) is that people with lung problems are more susceptible to MAC. People who want to avoid getting the MAC, and avoid the antibiotics that come with it, usually want to be careful of their water and soil. If you want a test for MAC, that one test alone is about $500 and is only for that day. It could change the next day.
I was told that distilled is not safe nor is spring water. Adding life straw to either makes it safe or boiling.
-
Like -
Helpful -
Hug
1 ReactionDr Joe Falkinham is the US authority on NTM in water. He and his students, in his university laboratories, did extensive testing. They deemed the bottled spring water safe.
Filtration companies are not the place to have your water tested for mycobacteria. It is a laboratory test done in just a few labs in the country. The one that tested ours six years ago is either gone or under another name. You said "If you want a test for MAC, that one test alone is about $500 and is only for that day. It could change the next day...." Can you explain why? My water is considered safe because my home also has pink slime mold - per Dr Falkinham, they cannot exist in the same environment. But, as an additional precaution, we keep our water heater set to 135F. At that temperature NTM does not survive.
Guess there are many different opinions. I have taken 17 classes o Bronchiectasis and I will go with the boiling of the filtered water because I have no immune system in addition to the lung issues. I have tested the bottled water from different companies with the TBS monitor and none have below the .2 microns which means there could be MAC. My class also said that water heater is not safe at 135 without a MAC filter which used to be available but they stopped selling to individuals recently. So baths but not showers is recommended. Let's hope be both survive this for years to come.
Can you tell me what a TBS monitor is? If you mean a TDS meter, for measuring total dissolved solids in water, by definition it is measuring particles smaller than or equal to .2 microns in size, the threshold for excluding mycobacteria. So a TDS meter does NOT indicate water is unsafe. If you are talking about a TSS monitor, measuring total suspended solids, these are not readily available to the home consumer, but water management professionals. Is this what you are using?
Can you tell us what classes are being offered? Is this through any of the institutions expert in treating MAC and Bronchiectasis such as National Jewish Health, Mayo, University of Texas - Tyler, Emory, NYU - Langone or Mass General or a few others.
What classes are you taking, and who offers them?
-
Like -
Helpful -
Hug
1 ReactionToo many anacronyms to remember. TBS is for streaming . I had a lab test my water and they used several things. In the end I got a carbon filter, reverse osmosis, alk filtration system. I was told the solids with the carbon only was 50, the test showed the reverse osmosis was about 80. The bottled water was 150. Life straw brought all of them down to zero. Boiling brought them all down to zero. I was told that I needed it to be zero to keep the MAC away. Is that not true?
The classes were offered by several people that studied at NJH but they are not doctors themselves. They worked with doctors to determine how to prevent getting the MAC in patients that were susceptible to it. They went out on their own to help others with what they learned. I found it very helpful. It doesn't show all sides of the story though so it is good to listen to other people. Thanks for you input.
Can you tell us where you found the classes?
Zero is not the answer - the water must be tested for NTM, there can still be other matter in there. There is a huge difference between dissolved solids, ,etc. And I can tell you about safe water, but not today - will be gone until this evening.
-
Like -
Helpful -
Hug
1 Reaction