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  1. #1
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    Talking ALKALINE WATER is helping!!!

    NEWS FLASH -- ALKALINE WATER DISCOVERY!!! :woohoo:
    I have found something that is helping reduce the pain of my IC more than anything else --- it is a brand of bottled water called Real Water, which is an alkalized water with a ph of 8.0. When I saw it at the health food store I had just started testing my urine with ph strips, and I talked to another IC'er who tested her water and found that her tap water was less acidic than the expensive bottled water she was buying for her IC!!!! Most water, including bottled waters, are 5.5 or 6.0, which is more acidic. So I was paying attention to pH already, and when I saw this brand that was highly alkaline - 8.0 ph - I bought a whole case to give it a try!!!! I drank nothing other than this water, and began feeling better after about 2-3 days. I even use it for cooking. I wanted to be sure so I waited a few more days and then other people started saying "you seem better!" and my husband noticed a change too.

    I don't know about you, but I feel pain not only after eating, but even after just drinking water!!! I never could understand how that could be, but now, after realizing that most bottled waters are acidic, it makes sense.

    I don't know if it is okay to talk about certain brands on this board, so I won't describe it further here -- but if anybody is interested you can PM me and I will give you more specific information. A friend of mine with IC is trying it now - today is only her 2nd day on it but within another day or two she should be able to tell if there is a difference. She is very sensitive and can tell the difference between her filtered tap water and bottled water - the tap water is better for her, because it is less acidic. When she figured that out, it was by accident - she had forgotten her usual brand of bottled water and had to drink tap water at a relative's house for a whole day - it was hot and she drank a lot and was worried she was really going to pay for it. You can imagine her surprise when she not only did not have a flare, but she felt BETTER!!!! She laughs about it now, after spending a fortune on an expensive bottled water for many years!!! She found that her tap water through the filter in her refrigerator was much better for her IC.
    - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
    As far as the 8.0 alkaline water - for me, it has been miraculous - I've been drinking it for about 3 weeks now and my pain level is definitely less. I have been able to start doing things again, light exercising and artwork and just getting out -- where before I was in bed or on the couch with my heating pad and ice packs. Hopefully as more time goes by, I can report more positive changes. I am going to let my urogynecologist know about this at my appointment next week!

    =Sharon aka ICsmiles
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

  2. #2
    ICN Staff SharonA's Avatar
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    I am really happy for you. I hope you continue to feel better and better as time goes on.
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/diet/


    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  3. #3
    ICN Member floridamom's Avatar
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    That is interesting that you posted this about the water. I am reading the book...SOlving the IC puzzle & in it they discuss all aobut how acidic our waters are that we drink!!

    I also wanted to ask you, where do you find the testing strips to test your urine?? I had mine just tested ysterday at docs. & it was 8.0....he said that was great, but this book says it is too acidic.

    I would be interested in chatting more about this if you want...feel free to PM me!!
    Karen
    Currently Taking:
    20 mg Celexa
    fentanyl patch 12.5 mcg chgd every 3 days
    morphine IR 15 MG, up to 3x daily
    Xanax 1mg as needed (not taken daily)
    900 MG Oxycarbizine (mood disorder)
    300 MG Welbutrin
    Tizanidine 4 mg up to 20 mg daily as need
    Prevacid 30 mg
    Ambien as needed

    my heating pad is my best friend, use daily on my lower back & pelvic area
    blessed to be able to receive massage & Amma , along with Avazzia therapy 3x weekly

    Been diagnosed for 10 years now, consider myself pretty well versed in this disease & would love to help out with new IC sisters or brothers, feel free to message me.

  4. #4
    ICN Staff SharonA's Avatar
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    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/diet/


    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  5. #5
    ICN Member Rocklandgal's Avatar
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    Hi,
    Is this the only water that you have found with the good PH?
    Karen

  6. #6
    ICN Member BT2008's Avatar
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    Quote Originally Posted by floridamom View Post
    ... & it was 8.0....he said that was great, but this book says it is too acidic.
    8.0, too acidic?? Are you sure? The higher alkaline something is the closer it is to becoming ammonia and lye! And, we don't want that either! Youch!!

    The optimum pH of our body fluids is 7.0.

    Pure water is neutral--and 7.0 pH is neutral or perfect. Less than 7.0 moves toward acidic, and more than 7.0 moves toward alkaline.

    From what I have learned in researching this question, we want to strive for our drinking water to have as close to a perfect pH of 7.0 as we can get. If we are lucky, most of the time this will be somewhere between 6.0-8.0. The pH of baking soda is 8.5 which on occasion would be good. But I certainly wouldn't want to go higher than 8.0 on a regular basis. Remember, 7.0 pH is optimum for our bodies and therefore the ultimate goal.

    We need to be very careful in thinking that in order to combat acidity we should overcompensate with alkaline. That would not be good for us either. Balance is everything--in all things.

    ~Beth
    p.s. Here are two links that explain the pH Scale and gives examples:
    http://www.elmhurst.edu/~chm/vchembook/184ph.html
    http://www.mcvitamins.com/is-your-body-too-acid.htm

    .
    Last edited by BT2008; 05-29-2009 at 06:37 PM. Reason: typo
    I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

    Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

    Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
    DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
    Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
    Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
    Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
    Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
    History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

  7. #7
    ICN Member Rocklandgal's Avatar
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    Pardon my ignorance, but how would I contact somebody to discuss something that they do not wish to put on the forum? Is there a way to do this? Someome wrote "PM me". Does that mean "private mail"? If so, how do I do this? Thanks so much.
    Karen

  8. #8
    ICN Member
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    Smile Water and PM-ing!

    Hi Rocklandgal! I just sent you a PM (private message)
    -- What you do is go to the person's name and click and you will see a drop down menu - on there one of the choices is "Send (name) a private message" - I hope that helps.
    As far as your water question - I see there is some discussion on the board about PH --- I tested my Real Water and it is more like 7.0 ph. Another IC'er told me about water she gets in glass jars instead of plastic (to be more eco-friendly and also because plastic itself gets into our food and water and she is avoiding that) - and it also has a good ph. I may try it as well. I do notice that the water I drink makes a difference on my bladder. The other best treatment for me right now is physical therapy since my muscles and nerves are involved in the pain cycle.
    I wish you all the best! Let me know how it goes!
    Sharon aka ICsmiles

    Quote Originally Posted by Rocklandgal View Post
    Pardon my ignorance, but how would I contact somebody to discuss something that they do not wish to put on the forum? Is there a way to do this? Someome wrote "PM me". Does that mean "private mail"? If so, how do I do this? Thanks so much.
    Karen
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

  9. #9
    ICN Member
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    Water ph

    Thank you Beth - this is great information -
    I am so new to this kind of thinking, and the water has made a difference in my pain level so I was quite excited to share it.
    But I continue learning!
    I did test the brand and even though they advertise it as 8.0 on the bottle it tested on my strips at 7.0. So I am happy about it.
    There is another water an IC'er told me about that comes in glass jars - she avoid plastic because there is also the problem of chemicals leaching from plastic into our food and water -- I may try that sometime too.

    "Normies" have no idea the amount of work it takes to keep an IC bladder from flaring up! I see people eating and drinking stuff I cannot IMAGINE! But I remember doing it in my youth as well. (sigh)
    Hope you are having a good day!
    Sharon aka ICsmiles

    Quote Originally Posted by BT2008 View Post
    8.0, too acidic??
    From what I have learned in researching this question, we want to strive for our drinking water to have as close to a perfect pH of 7.0 as we can get. If we are lucky, most of the time this will be somewhere between 6.0-8.0. The pH of baking soda is 8.5 which on occasion would be good. But I certainly wouldn't want to go higher than 8.0 on a regular basis. Remember, 7.0 pH is optimum for our bodies and therefore the ultimate goal.

    We need to be very careful in thinking that in order to combat acidity we should overcompensate with alkaline. That would not be good for us either. Balance is everything--in all things.

    ~Beth
    p.s. Here are two links that explain the pH Scale and gives examples:
    http://www.elmhurst.edu/~chm/vchembook/184ph.html
    http://www.mcvitamins.com/is-your-body-too-acid.htm

    .
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

  10. #10
    ICN Member
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    high PH and ammonia

    That is very interesting about the higher PH the closer to ammonia. I wonder if that is why sometimes urine can take on an ammonia odor, either maybe from too concentrated or the PH gets high? What do you think?

    Sammi

    Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
    Diagnosis: IC, PFD (both in remission)

  11. #11
    ICN Member BT2008's Avatar
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    Hey Sharon,

    I'm glad the info helped you out. I have loved researching stuff most all of my life, and since having severe IC and not being able to do much of anything except "sit here in my chair"... I figure I can put my time to good use by researching stuff that pertains to IC.

    I hope you are having a good day... because I have been having a really rough time the past week or so... It hurts SO BAD I go from my chair here at my desk to the bed... back and forth, always curled around my heating pad... (oh, and by the way...staying to the topic, the water I am drinking is pH 7.0....oh well...)

    ~Beth
    I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

    Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

    Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
    DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
    Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
    Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
    Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
    Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
    History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

  12. #12
    ICN Member BT2008's Avatar
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    Quote Originally Posted by sami4 View Post
    That is very interesting about the higher PH the closer to ammonia. I wonder if that is why sometimes urine can take on an ammonia odor, either maybe from too concentrated or the PH gets high? What do you think?
    Hey Sami,

    Yes, I assume that when our urine takes on the ammonia smell, it is actually becoming ammonia because it is too alkaline. Chemical reactions are pretty complex, but whenever I am able to understand one of them, it is actually pretty interesting. For example, even when something--like urine--is exposed to air (oxygen) a chemical change takes place. So, from "input to output" everything we drink probably goes through several chemical changes from the time we drink it until we pee it out!! Same goes for food...

    While there are certain things we can do to help us make good choices, like testing our drinking water with the pH test strips, the way our bodies metabolize the things we drink will be dependent upon what else is going on in the body, including what we eat with our water! I had b'fast at my MIL's this morning, and I assume there was something in it that has really angered my poor bladder, and it has already been through a lot this past week!

    I am going back to the couch now... Have a good evening!

    ~Beth
    I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

    Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

    Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
    DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
    Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
    Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
    Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
    Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
    History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

  13. #13
    ICN Member
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    PH is confusing

    I've been on this diet - mostly vegetables which are alkaline and I feel worse! And a few years ago when I was on the atkins diet my P was definitely acid and I felt better! SO while alkaline may help some people, it may hurt others. When you eat fruit, except for cranberry and prunes, your P becomes alkaline even though when you eat the fruit, say oranges, it starts out acid. Our bodies can flip PH just by the act of breathing!
    You have to try for yourself and believe what feels good for you is the right thing.
    42 years IC. 2013 tried liposome instillations at California Stem Cell TC and the pain I guess from the catheter was too much. I tried 3 times. I am going to stick with trying a few old medications for now - hyomax and try vaginal valium. I still think herbs are so much safer than drugs.(I took an overview course a few years ago.) But there is so much little research on herbal remedies for this complex disease and people in pain need help as soon as possible, therefore RX drugs are necessary. I myself was trying elmiron (after cystoprotek and aloe vera did not seem to coat the bladder for me) Back to herbs, if you think that your IC is caused by histamines and allergies, etc, there are many researched herbs and herb formulas for that type of thing so perhaps that may be a path for you. But since IC is so complex, those herbs may not help. Perhaps if you think you are getting infections, there may be herbs that could deal with chronic, drug resistance problems but you would need some professional guidence. I believe I keep inflammation down by taking cucurmin extract, and other anti-inflammatory herbs - there are many good ones. You SHOULD find some that agree with you and your medication protocol if possible.

  14. #14
    ICN Member JennyBird's Avatar
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    Has anyone found a bottled water that is neutral, around 7, and not terribly expensive? They sell bottled water at work that I've tested at 7-7.25 and I've noticed a difference when I started drinking that vs. the filtered water, which is a 6.25. I can't find this brand at the grocery store though....and when I tested a few bottled brands, they all came up with a PH of 6.25. i know 6.25 isn't that acidic...but I'm donig much better with the 7-7.25 water. Any ideas?

    the funny thing is the waters that are testing at 7-7.25 are all bottled from Tennessee sources. Guess it's the minerals that get into the water there? Interesting...right?!

  15. #15
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    If you have an Aldi grocery store near you, they sell Camelot SPRING water. I checked the web but could not find a listing for Springbrook Springs (that is the spring water in Camelot. I then contacted the bottling company (Mayer Brothers Inc. and they told me the water is a 7.5 PH. I believe I pay $1.99 for a twelve pack.

    If you go to Aldi, be sure to pick up the spring water and not the purified water. I don't know the PH of the purified water.

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