Latest Blog Article: Vaginal Mesh Sling Complications and IC?
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  1. #1
    ICN Member
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    Aloe vera juice?

    I've come across 'aloe vera juice' a number of times when reading in the forums and on various IC diet lists.

    I'm curious to hear any specifics -- to anyone who does use it, what specific differences do you feel that you notice when you're taking it as opposed to when you are not?

    Also, how frequently do you take it (times / day) and do you do this ongoing/constantly, or just when things are at their worst? The bottle I just bought says to take 2 oz. four times a day ... that would only get me about four days per bottle, and each bottle is about $15, so I'm looking for either some strong anecdotal evidence (convincing stories that it's made a difference for some people), or research studies about it if there has been any.

    Anyone have any info?

    ...

    I've just started taking aloe vera juice today. I've made a decision to begin really stepping into alternatives /complementary medicine now (since I've been trying the medical route solidly now since the pain's been the most severe for me which is about four months).

    In addition to acupuncture/traditional Chinese medicine, which I posted about in that ICN forum today, what I might try to do later this week is set up an appt. with a local physiotherapist that I Google-discovered, who's trained in the pelvic pain certification to do with physio / 'transvaginal' (?) massage (I'm blanking on the correct term for the treatment, currently).

    I'm also considering a local istop pain clinic. Other things in term of supplements/oral that I'm trying include, cinnamon extract, vitamin d, & green/fruit/coconut milk/flax oil/protein juice.

    Lisa

  2. #2
    ICN Member cmclien's Avatar
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    Hi Lisa,
    Just make sure your aloe vera juice is free of citric acid or it will cause you more harm then good. I think alot of people (myself included) actually use the freeze dried aloe which is much more potent then the juice. There is a link here to buy the Desert Harvest aloe vera capsules but their website is very informative as well. Its kinda pricey too but a bottle of 90 will last about 2 weeks taking 6 a day.

    Also be careful of cinnamon, it is on the "try it" list in the diet but it actually causes me pain every time I sprinkle even a little bit on toast. Even cinnamon gum or mints (which I love) can cause pain.
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

  3. #3
    ICN Member lalarainbow's Avatar
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    Jul 2003
    Location
    Nova Scotia ,Canada
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    611
    I took Aloe Vera gel for a few months.. on an empty stomach and about 6 tablespoons a day.. I used to buy the Gallon jug here and it was around $32.
    It would last a lot longer ..I am in Canada ..I did not really feel it did much for me so I stopped.. and the jug took up room in the fridge.. Once you open it it has to be kept cold..
    It is worth a try though because we are all different..
    Hope it helps you.
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan- caused constipation
    Trying DMSO instill- had 5 out of 6
    Started Oxytrol Patch- no side affects so far --Jan 2011
    stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6ht 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Sinequan

  4. #4
    ICN Member
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    Location
    Canada
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    Dry aloe, wet aloe, & citric acid

    Damn, I can't believe I was dumb enough to buy without looking at the ingredients! Just tonight I happened to look at ingredients and saw 'citric acid' and thought 'geez, that doesn't sound good, sounds like two bullets'. Darn.

    The freeze dried aloe, is that what's in capsule form? Or do you take your freeze dried aloe in some different form? [QUOTE=cmclien;570446]Hi Lisa,
    Just make sure your aloe vera juice is free of citric acid or it will cause you more harm then good. I think alot of people (myself included) actually use the freeze dried aloe which is much more potent then the juice. There is a link here to buy the Desert Harvest aloe vera capsules but their website is very informative as well. Its kinda pricey too but a bottle of 90 will last about 2 weeks taking 6 a day.

    Thanks too for the comment about cinnamon. I still haven't noticed a connection to food triggers, but I am increasing my caution and trying to do more and more IC diet things all the time (sugar is my weakness) just in case.

    All this feedback is so helpful. Thanks.

    Lisa

  5. #5
    ICN Member lalarainbow's Avatar
    Join Date
    Jul 2003
    Location
    Nova Scotia ,Canada
    Posts
    611
    mine had the citric acid- but it did not bother me but nor did it help... darn is right
    God brought me to it, He will bring me through it!!!

    Diagnosed 2003
    by cysto/hydro
    Elmiron took almost a year- made me sick, caused diarrhea
    Pyridium -Made me sick
    Detrol and Ditropan- caused constipation
    Trying DMSO instill- had 5 out of 6
    Started Oxytrol Patch- no side affects so far --Jan 2011
    stopped using them after 3 months-- skin was getting irritated
    Cysto/hydro April 6ht 2011-- on expansion only hold one cup
    IBS/ IC
    High blood pressure meds and Crestor
    Sinequan

  6. #6
    ICN Member cmclien's Avatar
    Join Date
    Jun 2009
    Location
    Chicago
    Posts
    712
    Yes, they are capsules. Here is a link to their website that talks about a study done with IC patients:

    http://www.desertharvest.com/interstitial_cystitis.html

    From this link you can get to the study etc.

    It is theorized that the aloe plant helps IC patients in several ways. When processed correctly, the powder maintains its high levels of the long-chain sugars that are polysaccharides. The first lining of the bladder destroyed by IC is a polysaccharide layer. It is possible that aloe vera is working much like Elmiron, but with no side effects from a man-made drug. The aloe plant is also a natural anti-inflammatory, antibiotic, analgesic, and anti-microbial agent but only when used in its super-strength form.

    I've been taking it about a year and I definitely noticed a difference at first. It didn't help with frequency but it did help with burning which I rarely have these days. I think it helps with inflammation and maybe thats why no burning any more.

    If I remember correctly as a first time user you can get 4 bottles for the price of 3 and two months is a pretty good amount of time to see if it helps you. Its says it helps with flares but I personally haven't noticed much in that regard. I have taken anywhere from 6-12 capsules a day but right now am doing pretty good with the 6.

    The cinnamon might be fine I just wanted to mention it to you as it does hurt some people.
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

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