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IC Caused by hormone allergy - any more views?

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  • IC Caused by hormone allergy - any more views?

    Recent research by Dr R Roby In Austin Texas has shown that women can be allergic to their hormones. This causes all kinds of illnesses, including migraine, asthma and IC, so he believes. He is an immunologist. He treats this by giving progesterone as a homeopathic treatment, and adds other hormones such as oestrogen (I'm in the UK and we call it that!) if needed after doing a hormone profile. His work has been published recently in the American Journal of Reproductive Immunology.

    What I'd like to know from you guys is- has anyone heard of this allergy clinic in Austin- he has a website - and do any of you take bioidentical hormones such as like HRT? This is a kind of hormone treatment made from natural hormones, and prescribed to your exact requirements. In the UK I believe it is unobtainable. There is currently a move by the FDA to stop it in the US as they believe the dosage can't be controlled- true- it's different for everyone.

    I would love to know from IC Network if you have heard about Dr Roby - he is keen for everyone to know what he does- or if anyone has been treated by him. My bladder settles during a period and Dr Roby says i am allergic to my progesterone. I am considering being treated by him, but if i can't get the bioidentical hormones, then there is no point going ahead, long distance.

    Any news, views, ideas?

  • #2

    I read that report and find the theory interesting. However, there would probably need to be much more research to formulate a safe treatment if hormone allergy is valid for IC and that would, unfortunately, take time. I have always been very sensitive to hormone changes and have never been able to take birth control pills due to severe side effects. I also had a very young patient in my support group who had hyperprolactinemia (sp?), a severe hormonal disorder that is very devastating all on it's own. On top of that, she had IC and other mental disorders. I often wonder how all of her conditions related and the hormone issue seem very prevalent with us anyway. My symptoms get worse during my period (I also get terrible menstrual migraines) and I've known many in my group who had never had any bladder problems until the change of life. There are even some who feel their symptoms have leveled off since menopause.

    Who knows, perhaps there's a link, but there would still have to be much more work done to conclusively link the two, just like all the other emerging scientific theories.

    I think this most excellent discussion should be moved out of BCG and placed under the " Alternative Therapies" section. I'm afraid no one will see it and participate. BCG is not a hormone therapy, but a weakened form of cow tuberculosis that was studied for treatment of IC. Although the study results didn't site efficacy for use in treating IC, it is still a valid form of bladder cancer treatment.>Meemer
    Last edited by Meemer; 05-16-2006, 02:08 PM.


    • #3
      Hormone Crazy

      Hi Gals,

      Stumbled upon your posts, and thought you might like to know my situation. I always had a sensitive bladder with a flare that started in my teens, but went away on its own. Didn't think anything about it. I was diagnosed with Premature Menopause when I was 36. I was done at that point, and was put on HRT because I was so young. I went off the treatment for a while up until about a year and a bit ago and started taking Prempro low dose (I have my uterus). Anyhow, I decided I wanted to start taking another brand (more bioidentical) so I started taking Prometrium and Estrace. All of a sudden the "fire from hell" started. I had pain like you wouldn't believe. I thought it was a UTI so I went to the clinic-negative, went to my regular doctor: UTI neg., CT Scan (small fibroid on back of uterus). Went to my obgyn: Ultrasound (small fibroid). Finally Urologist: IC/Bladder. I tried to think about what I changed when it all started and the only think I did was change my hormone therapy (also tried Lexapro, but I don't think that was it). So I stopped taking it, and the pain went away for three days, but then returned with a vengence. I definitely believe IC is hormonely driven, but how is the question. I am about to start bio-identical hormone processed for me from a lab that I rub into my skin. It by-passes the liver and gut. I am terrified about what might happen next. The pressure has alleviated a bit, but alternates between burning and pressure and both. I'll let you know what happens after I start these new hormones.




      • #4

        Can anyone move this post for me- it wasn't supposed to be under BCG -I just couldn't find my wayaround the posting system- sorry! I wanted it to go into Experimental treatments or alternative treatments.


        • #5

          Perhaps emailing ICN Donna or posting something under the Tech Questions topic close the bottom of the message board list. It can be done, so don't panic, but it must be done by someone who is authorized by the site.>Meemer


          • #6
            Hi Glynis:

            I was just watching the news and Katie Couric had a guest discussing women's health and mentioned people who have allergies to plant estrogen. They were discussing soy in the diet and this doctor mentioned that some people are allergic to soy due to plant estrogen. I wonder if that's the reason many ICers cannot eat soy?!

            I find this discussion extemely interesting. I wish more people would comment even though this is posted under BCG. I'm going to research this topic more and possibly post it under another more approapriate topic header.>Meemer
            Last edited by Meemer; 05-16-2006, 02:00 PM.


            • #7

              I just switched to a plant based estrogen and prometrium and was also a Vegetarian for a year, and eating everything soy, and then IC. Seems like there is a definite connection. Now how can I reverse what I've done is the question. Does this site have a postmaster? They could move the post to where it needs to be, I think.


              • #8
                Soy really is not a good product for women to eat anyway. Soy not only takes the receptors for estrogen and blocks them but also upsets thyroid hormones.
                Prometrium is suspended in peanut oil which may cause some allergic reaction also.
                BiEst, TriEst and Estriol are pretty weak combos and for a woman who does not need much in any estrogen may be fine. For others they are too weak to help with keeping UT symptoms at bay.
                One also wonders with all this probing, looking and craming things up ones urethra and bladder if that dosent damage nerves in the area and cause worse IC symptoms or the start of IC?


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


                • #9
                  Interestingly enough, I can tolerate "hydrolyzed" soy, but not regular soy. I'm not sure about this process or type of soy, but this hydrolyzed soy is found in La Choy Lite soy sauce and contains 50% less sodium than the others. Give it a try if you are having a good spring roll and want the taste soy sauce.

                  I cannot eat most store-bought cake and brownie mixes and boxed cookies because they contain soy , so I usually just suffer through B-days and have a small piece and pee my brains out for 24 hours. I no longer purchase grocery store cookies. If I want them, I bake them myself at home.>Meemer


                  • #10
                    I sugest you talk to Kara29. As of yet it seems that there are many different causes for IC and I don't doubt that hormone allergy is one of them.
                    Faith, Hope, and Love,

                    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                    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.
                    or find me on facebook
                    Be the Miracle! & Pay it Forward!

                    [email protected] please contact me...I am here to help!


                    • #11
                      I can answer most of your questions about Dr. Russell Roby, I am his patient.

                      Just as a quick nutshell: My name is Dotty, I live in Austin, TX, and have been Dr. Roby's patient since 1994. He was my last ditch effort at having a life again.

                      Dr. Roby offers a blanket guarantee policy. If he doesn't fix your problem, there is absolutely NO CHARGE to you.

                      I was diagnosed with vulvar cancer in 1989, went through chemo, lots of surgeries, many painful procedures, and many nasty drugs. Everything just got worse and worse. In 1991, I was diagnosed with the triplet of IC (no chance of a cure), lupus (no chance for a cure), and finally, Behcets disease (no chance for a cure). I was told by my doctors, that with all of these problems, they wanted me to know that they could do nothing more for me, and that in their considered opinion, I had about three years to live.

                      In 1994, I was introduced to Dr. Roby. One of my friends, who was a nurse, literally dragged me in, kicking and screaming, "no, no, no more doctors", with a three day, number 10 migraine, incredibly painful bladder condition, swollen, red and painful joints, and a bad temper, to Dr. Roby's office.

                      After I vented my feelings about the ineffectiveness of doctors in general, He quietly told me about his views on the root causes for my affliction, and asked if I would allow him to try a couple of allergens just under the skin, to see what was making me react. I agreed. What he had to say about hormone allergy made so much sense to me! I was totally unprepared for what happened next. Within 10 seconds, I could feel "things" rearranging themselves inside my head, and I could feel the migraine melting away. This had NEVER happened to me before.

                      I was so stunned that the headache had gone away, that I didn't even notice until later that the BLADDER PAIN and urgency was gone, along with the swelling and redness of the joints. I was a believer. I am still a believer. I thank God, my friend, Linda, and Dr. Roby everyday for putting us together.

                      He sent me for hormone and other allergy testing. I am allergic to my own progesterone, adrenaline (my life fuel), and estrogen.

                      I use drops under my tongue everyday to block the allergic reaction and to keep me desensitized, I take bioidentical hormones to keep my hormone balance where it should be, use a low carb diet and walk very slowly, for at least an hour each day. It is a lifestyle change. When I stray (and I do, over and over), I always get back to it, as soon as I begin to go through pain again.

                      I do not have to take narcotic drugs for pain, I am healthy, and I am definitely still alive.

                      Please feel free to address any questions that you might have to me. If I don't have the answer, I'll help you to find it.

                      Last edited by dottydreux; 05-19-2006, 06:50 AM.


                      • #12
                        FDA and Bio identical hormones

                        There were two mentions in your post that I would like to help you to clarify.

                        1) The FDA is not trying to block the sale or use of bio identical hormones. Millions of women and men are now using them here.

                        2) I go to the UK frequently, and know that you have compounding pharmacies there. Any one of them can obtain the bioidentical hormones and compound the prescription for you.

                        I am on Bi-est, which is two of the estrogens. They try to avoid giving estrone, unless you really do not make any endogenous amount.

                        The other thing, which I forgot to mention in my post, is that: at the Roby Institute, Dr. Roby offers a blanket satisfaction guarantee. He knows that his treatment sometimes doesn't work for some people. His guarantee is that if it doesn't work for you, there is absolutely NO CHARGE. While he cannot guarantee a cure, he can make sure that it will cost the patien nothing, if it doesn't work.

                        He will do whatever it takes to help a patient.

                        He is always readily accessible to patients and other physicians, at all imes.

                        He is also incredibly generous, and is willing to share all of his knowledge with your own doctor, and teach him/her, how to use the treament.

                        He thinks that doctors should be paid on the basis of outcome. If he cannot make and keep you well, he doesn't deserve to to be paid. I don't know any other doctor in the world who does this.

                        dotty dreux


                        • #13
                          If I could afford a trip to Texas and the treatment, I would try his treatment...your story is very inspiring.



                          • #14

                            What is Dr. Roby's medical background. Is it internal medicine?>Meemer


                            • #15
                              I sure couldnt tolerate systemic progesterone or progestins without big urethral flare and yeast infection.
                              Dottys story reminds me that Dr. T the inventor of Algonot may be on the right track with his "mast cell theory." What ever you are allergic to will cause mast cell release and finding the root offender would be the best treatment, secondaryily blocking histamines would be the next best.
                              So glad Dr. Roby helped you.


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