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  • Roby Institue in Austin Texas

    I found this place online and they say they specialize in IC and have a 65% rate of reducing symptoms and putting patients into remission. They are considered holistic, but they do use conventional meds. There is a very interesting paper on their web site about IC and it being due to hormones and balancing. I am new to this, but having problems with all the meds the uro keeps giving me and all they keep wanting to do is another hydro which didn't really help enough the first time to want me to do it again. I am just looking for some opinions. please if you know anything about The Roby Institue let me know or check their site out and give me an honest opinion. Still looking for a good doctor in San Antonio??????? I am even willing to go to Austin if anyone can recommend someone there?????? Thanks Everyone!!!!!!!

  • #2
    I did a search and looked at their site. Just remember that if something looks too good to be true, it probably is. You might ask your primary care physician about a referral.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Looks kind of "iffy" to me. Many women say hormones make them WORSE (for example, women on hormone replacement for menopause or after a total hysterectomy, ovaries and all). I think the claims on this site are inflated.

      However, if you want to try it, talk to your current doctors first.
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        I have watched his "infomercials" on Saturday mornings when I can't sleep. He is located in South Austin. Everyone that is on his show says such nice things about him how his staff puts them in "remission" . I would do some research on this guy. He has been around for quite some time. But I wouldn't go there. Good luck.

        Comment


        • #5
          Thank you for the honest replies. I really do appreciate the opinions, this is such a great place. I thought the same thing--If it was so easy to put into remission than why is there so much suffering going on? I called them today just to hear what they had to say First-they do not accept insurance and Second- treatment runs about $5,000 (I about fell out of my chair). The intial consult is free of course and you don't start paying until he accepts you as a patient (like he would turn down money?). I finally had to practically hang up on the women, she kept trying to make me an appointment. I think I will stick with my uro and keep reading the boards and taking notes on what is working with others. Thanks again for caring and taking the time to look into this.

          Comment


          • #6
            I must defend Dr. Roby

            I must respond to Dette's post. I feel that she must have called someone else, as what she was told was just not what Dr. **** charges. First of all, let me say that my daughter was one of Dr. ****'s very first IC patients. You all know the drill, she was in horrible pain most of the time, often bedridden from the pain. We went to 7-8 doctors of all kinds. Finally Vanderbilt diagnosed her with IC. She did elmiron/elavil I think it was (it has been too many years) That did no good at all so she went in for the 9-weekly instillations that they thought would do the trick. They did nothing at all for her. This had gone on for years for her and she basically had no life at all. She was trying to go to college and work and it became an impossibility. As a real pro-active mom, I was continually searching the internet for some sort of solution for her. I found Dr. ****, and immediately called him. He got on the phone with me and I gave him the total run down of her history, what we had done and all the drs. we had seen. He gave me such hope. We immediately boarded a plane to go to Austin to see him. We had had a blood panel done before going and had the results faxed to him. He saw that her hormone levels were way out of whack, and at the office tried sublingual drops of different strengths of hormones. At the correct point, and you won't want to believe this, but the pain went completely away!! You can imagine how we felt. She broke into tears at the relief. I could go on and on, but he put her on some hormones, and within 6 months she was off of the hormomes totally. She is now 24 years old and is in Scotland with a wonderful new life. She was able to graduate from college. She has been symptom free, with no IC, for 4 years.

            If you are not happy, he has a complete money back guarantee,and if you cannot pay anything, with a letter from a doctor stating that you cannot pay, he will treat you for free. All Dr. *** wants to do is help people. You might get on Amazon and check out his book, which is filled with personal stories. I urge you all to please call him personally. Dette, I urge you to call his office and speak with him personally or write to me.
            Last edited by ICNDonna; 05-07-2010, 08:38 AM. Reason: Advertising is not allowed on IC Network forums.

            Comment


            • #7
              This treatment did not help me at all

              It made me worse. Those sublingual drops did not do didly squat. What works for one does not always work for another though.
              As I think, so I shall be....

              I have had IC for 4.5 years now. I also have fibro, sjogren's syndrome, and vulvadynia. I live in immense pain. I often daydream of life before this demon . When I feel good, I embrace it with all of my heart! I pray that someday I will feel 100% again, we all deserve it!

              Medications:

              Vicodin (as needed, so daily!)
              Percocet (morning & night)
              Klonopin (.5 mg at night)
              Zanaflex (2 mg each night)
              Thyroid med for low thyroid (hypo)
              leuko-stim
              Vitamin D (4000)

              Diagnosis:
              IC, CFS, Fibro (it is really bad it has taken so much from me and changed my life), Anxiety, Depression from it all, & Hypothyroid.

              Comment


              • #8
                Sorry it didn't work

                I'm really sorry that the sublingual drops didn't do anything for you. My daughter did so well with it. We have sent probably 15 people to ****, from other IC people, fibro, allergies, crohn's......and all but one have had fabulous results. Often times the drops don't help right off, but with a little "tweaking" after talking to Dr. **** on the phone, you get relief. But sorry it didn't seem to work for you. I also hope that you find relief and get your health back to 100%; everyone deserves that for sure.
                Last edited by ICNDonna; 05-07-2010, 08:38 AM.

                Comment


                • #9
                  I will be closing this thread and ask that it not be reopened.

                  Thank you.

                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment

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