Latest Blog Article: New IC Treatments Use Liposomes To Deliver BotoxA Into The Bladder
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  1. #1
    ICN Member maryla's Avatar
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    GABA-IC Treatment~YES!

    Hi all,

    Just wanted to let everyone know, My uro gave me a script for the GABA-IC treatment protocol., :woohoo: :woohoo: :woohoo: and I am asking for prayers. I'm one of those that nothing has helped....this is my last hope........for now anyway! I hope to start it next Monday and will keep everyone posted.

    Hugs and Blessings!
    MARY


    Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

  2. #2
    ICN Member Pucca's Avatar
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    Mary, I didn't know what this treatment was so I googled it. It sounds promising, to say the least! Did your doctor suggest this, or did you learn about it some other way and suggest it to him? I'll be praying that this is what works for you. Please keep us posted.

  3. #3
    ICN Member maryla's Avatar
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    Pucca,

    It's something that I found that others were trying here with good results and I took the info to my uro and he said, "it sounds very promising" he's tried everything he can do as far as the usual treatments, and he's praying that it works for me too!

    Hugs and Blessings,
    MARY


    Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

  4. #4
    ICN Member maryla's Avatar
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    Hello all,

    I received my GABA-IC stuff today and I just did my first of 7 instill. Just a little burning and dizziness. But I'm praying it helps. Actually I just got off the phone with the pharmacist who invented the treatment protocol and it sounds more promising than ever from our conversation.

    Hugs and blessings,
    MARY


    Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

  5. #5
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    Please keep us updated on your experience with the GABA-IC instillations. Good luck!
    Diagnosed with IC on 7/25/2008 via cysto/hydro.

    Elmiron -- 100 mg 2 times a day (began 7/28/08)
    Elmiron instills (began on 7/29/08) (I now receive instillations on an as-needed basis -- which is rarely. They helped a lot in the beginning!)
    Cystoprotek -- 2 pills once a day (began on 7/31/08)
    Hydroxyzine -- 50 mg at bedtime
    Following the IC diet (began 7/26/08) (I now cheat a lot and am usually okay...even with white wine, beer, tomatoes, chocolate, etc. Although I do always take Prelief first).
    Urelle as needed

    Symptoms: frequency, bladder pressure.

    So far I believe that one of my triggers is caffeine (coffee, diet soda, tea). Causes frequency.


    Voici mon secret. Il est tres simple: on ne voit bien qu'avec le coeur. L'essentiel est invisible pour les yeux ~ Le Petit Prince

    (Here is my secret. It is very simple. One can only see clearly with the heart. Everything that is essesntial is invisible to the eyes.)

  6. #6
    ICN Member Bluheaven's Avatar
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    I'm curious as to what's in the stuff? It doesn't say on the website.
    Danielle

    Married July 26th!! :woohoo:
    IC and PFD
    Dx'd 4-23-09 via hydro-distention
    Meds: Elmiron - Atarax - Valium
    Meds as needed: Percocet - Dilaudid - Lidocaine -
    Other Treatments: IC Diet - PT - Stretches - Yoga - TENS Unit - Heating pad


    My BluHeaven: The Photos | The Blog

  7. #7
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    is it this patent?

    You can find patents online. This sounds like it might be it. It has gaba... in it.

    http://www.faqs.org/patents/app/20080275015
    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.

  8. #8
    ICN Member Bluheaven's Avatar
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    hmmmm... that sounds very interesting... and promising as well!

    I'd like to know how this works for you. I'm also going to see if my doc has heard of it.
    Danielle

    Married July 26th!! :woohoo:
    IC and PFD
    Dx'd 4-23-09 via hydro-distention
    Meds: Elmiron - Atarax - Valium
    Meds as needed: Percocet - Dilaudid - Lidocaine -
    Other Treatments: IC Diet - PT - Stretches - Yoga - TENS Unit - Heating pad


    My BluHeaven: The Photos | The Blog

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