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  • Please NO advertising in this board.

    I know that some of you are fans of a certain practitioner back east who works with IC patients by phone... but I resent the fact that our board is being used to promote his/her services. We are not an advertising service... nor do we recommend this OR ANY PROVIDER that works with patients by phone... particularly for diagnosis. In fact, the State of California has recently ruled that certain practitioners can NOT diagnose anyone by phone UNLESS they have first seen that patient in person.

    I have very strong feelings about this.... I've seen patients pay astronomical fees for expense phone consultations and supplements with a number of providers around the country selling lots of different "cures" that didn't pan out.

    All obvious advertisements will be removed.

    Please remember, too, that you cannot provide medical advice by saying "She said... this and this and this.. with respect to antibiotics and dosages." This is walking a very fine legal liability line folks. Only a medical professional can and should give YOU medical advice about medications that YOU could or should take. Another patients thoughts are just that, thoughts, from a patient who might have good intentions but has no medical training. It should always be credibility tested with a licensed medical professional that has seen you, knows you and knows your history.

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  • #2
    Thank you very much Jill for posting this. I am one who has heard about this testing and treatment non stop as my husband decided this is the one thread he wanted to read. He now has been pushing me to spend all of this money out of my pocket to have this testing done b/c we have cats and he feels as if I am not doing everything I can to get better. He has yet to come back to my question of "how can someone who has never seen me, treat me?" I can't make logic out of this. Or the fact that 95% of the patients tested have this, I think that is a highly outrageous number, for any medicinal success rate.I know some people are being helped by this treatment and I am happy for them but I think it gives a lot of false hope, especially to new members of this board and the IC community. I have faith in the drs I see, or they wouldn't be treating me.

    There is a fine line between freedom of speech and legal liability. If Jill allowed everyone to say everything they wanted the ICN would have lawsuits out the wazoo. I appreciate everything Jill, and everyone else that works for the ICN, does for us. How awful would it be if we came to log in to the ICN one day, and the site was gone. For a legal reason, or b/c Jill decided the risk outweighed the benefit or she didn't feel like getting flack for every decision she makes. I also feel it is very out of line to do something here, when we have been asked specifically not to.


    Thank you for all you do to keep the ICN safe for all patients looking for support or guidance. I know if it weren't for Jill and her teams hard work, I would have been lost in the beginning, even more so than I already was.
    With Lots of Love and Wishes for Pain Free Days~Heather

    ~I was diagnosed with Interstitial Cystitis at the age of 23, 4 months after getting married. I also have severe Endometriosis, Adhesion Disease and Pelvic Floor Dysfunction. All of which were diagnosed AFTER being diagnosed with IC. Before IC my only health issues were a history of migraines since I was a child and a battle with cervical dysplasia. I had a LEEP in 2007 and have been clear of the cancerous cells since.~

    ~Please feel free to PM me if you have any questions, concerns or comments. Or if you just need a friend, someone to listen. I am almost always lurking around online somewhere. LOL~

    Comment


    • #3
      I understand what jill is saying. She is saying it is of a legal matter. I have friends that are nurse practioners is this person a Nurse Practioner? All NP must after seeing and examining, doing a hands on assessement, listening to lungs and heart sounds............. must per law go out and talk about your medical case and hx. with the md. I am a very big advocate of nurse practioners. They are highly educated, profesional and they know each one of them their scope of practice and where it lies within and along with their attending md supervising . Vicky RN
      Last edited by ICNDonna; 07-16-2008, 05:48 AM. Reason: Removed name

      Comment


      • #4
        She should have her own board and post things there not risk us losing our board our jepordiziing our professional IC standards. Vicky RN

        Comment


        • #5
          Originally posted by hdb1982 View Post
          Thank you very much Jill for posting this. I am one who has heard about this testing and treatment non stop as my husband decided this is the one thread he wanted to read. He now has been pushing me to spend all of this money out of my pocket to have this testing done b/c we have cats and he feels as if I am not doing everything I can to get better. He has yet to come back to my question of "how can someone who has never seen me, treat me?" I can't make logic out of this. Or the fact that 95% of the patients tested have this, I think that is a highly outrageous number, for any medicinal success rate.I know some people are being helped by this treatment and I am happy for them but I think it gives a lot of false hope, especially to new members of this board and the IC community. I have faith in the drs I see, or they wouldn't be treating me.

          There is a fine line between freedom of speech and legal liability. If Jill allowed everyone to say everything they wanted the ICN would have lawsuits out the wazoo. I appreciate everything Jill, and everyone else that works for the ICN, does for us. How awful would it be if we came to log in to the ICN one day, and the site was gone. For a legal reason, or b/c Jill decided the risk outweighed the benefit or she didn't feel like getting flack for every decision she makes. I also feel it is very out of line to do something here, when we have been asked specifically not to.


          Thank you for all you do to keep the ICN safe for all patients looking for support or guidance. I know if it weren't for Jill and her teams hard work, I would have been lost in the beginning, even more so than I already was.
          dont tell me this is the bartonella thing again? VN

          Comment


          • #6
            For HDB: If your husband thinks you should be tested, your own doctor can do it. However, many of us will test positive because we've been exposed and our bodies will manufacture antibodies to ward off reactions. Because we test positive doesn't mean we have the disease. For example, I'm the only one in my family who doesn't test positive for tuberculosis and my father was the only one who actually had the disease --- the rest of us were exposed by him. Our doctors always thought it was amazing that I didn't show antibodies.

            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


            • #7
              I told him I would test to shut him up if needed but I don't see the point in having to use a certain lab or certain practitioner. He just likes to hear himself gripe sometimes I think. LOL
              With Lots of Love and Wishes for Pain Free Days~Heather

              ~I was diagnosed with Interstitial Cystitis at the age of 23, 4 months after getting married. I also have severe Endometriosis, Adhesion Disease and Pelvic Floor Dysfunction. All of which were diagnosed AFTER being diagnosed with IC. Before IC my only health issues were a history of migraines since I was a child and a battle with cervical dysplasia. I had a LEEP in 2007 and have been clear of the cancerous cells since.~

              ~Please feel free to PM me if you have any questions, concerns or comments. Or if you just need a friend, someone to listen. I am almost always lurking around online somewhere. LOL~

              Comment


              • #8
                I would not bit on this one

                Last year when the bartonella info was going around and it was you have to talk to this person and be tested at this lab.

                I have a freind who used to come to the boards but I don't see her here much any more. She bit I don't remember now how much money she paid, but she was in contact with the person and had her testing done at the lab, and then it is more tests etc, and the money kept going up.

                At first she was really excited about this but after awhile when it was more money for this and that and she saw no improvement in her health, she stopped seeking this avenue of treatment.

                People who follow the diet and try the meds used on IC people seem to be doing much better a year down the road than she is, now each case is different, but I bet if you could ask her she would tell you she wished she didn't go down that road.

                I agree people should be able to read about this avenue of treatment and make up their own minds if it is for them. But they can get that info from other sites. There are only too many people out there will to take our money, and we go in with blinders on because we so desperately want to live normal lives.

                Despreate people get taken atvantage of and good for Jill helpping to prevent this.

                MG
                My are with you all. May you all find a way to peace and joy in your lives.

                Comment


                • #9
                  I missed that post but would be very skeptical anyway. Thank You Jill for looking out for the IC Forum and keeping it running with no legal problems.Jo

                  Comment


                  • #10
                    Agreed!

                    Jill,
                    I could not agree more! I was one of those that paid to have a test done that every doctor I showed it to laughed! I was feeling so miserable and would have tried anything! So as they say ...beware! Ginny

                    Comment


                    • #11
                      Thanks everyone for this valuable information. I have recently heard about this NP and felt hinky right away. Telephone consultations and treatment after treatment costing a tremendous amount of money just didn't sound right to me. After reading your posts my instincts are confirmed.
                      Cindy-Lou

                      Comment


                      • #12
                        Why is this topic singled out for no advertising but there are obviously posts advertising other treatments such as Elmiron that are allowed to run rampant?

                        For the moderators on this site...Please don't bully people around and direct them down a path that you "think" is the right one. The purpose of this site should be for the people and share valuble information so hopefully we can someday have a cure.

                        For the people out there...Don't let the moderators or anyone else try and brainwash you into thinking there is no cure for this disease. There is a cure we just haven't found it yet so keep your hopes up and keep trying.

                        Antibiotics have been lumped into the controversial treatment section but in my opinion are no more controversial than any other treatment out there.

                        Comment


                        • #13
                          With all due respect to the previous poster, I cannot speak for the moderators, but I can speak for my own experience with this NP and she is a bigger quack than the AFLAC duck during a Blitzkrieg. Simply put, the moderators are simply trying to a) Protect themselves from legal liability by not endorsing a specific practitioner; and b) Warning potential patients about the dangers of paying exorbitant amounts of money for an NP that is unqualified to make such diagnoses/prescribe such treatments.

                          To be fair, if you were considering contacting this NP for treatment, wouldn't you want to know the truth before spending thousands of dollars on treatments that more than likely were going to empty your bank account and not work?

                          Comment


                          • #14
                            Originally posted by sshannon74074 View Post
                            Why is this topic singled out for no advertising but there are obviously posts advertising other treatments such as Elmiron that are allowed to run rampant?

                            For the moderators on this site...Please don't bully people around and direct them down a path that you "think" is the right one. The purpose of this site should be for the people and share valuble information so hopefully we can someday have a cure.

                            For the people out there...Don't let the moderators or anyone else try and brainwash you into thinking there is no cure for this disease. There is a cure we just haven't found it yet so keep your hopes up and keep trying.

                            Antibiotics have been lumped into the controversial treatment section but in my opinion are no more controversial than any other treatment out there.
                            One of the very important guidelines our moderators use is that none of us will even attempt to give you direct medical advice. We encourage people to work with their own medical professionals towards finding things that might help. If you hear about anyone, nurse practitioner or physician or ????, who has something to offer that you want to try --- talk to your OWN MEDICAL PROFESSIONAL about contacting that individual about the treatment option or test. Ethical professionals are almost always willing to share information with their colleagues. There are some out there who are not willing to share information and are actually making promises (and a huge profit) by phone for patients they have never seen, never taken a blood pressure reading or listened to a heartbeat, taken a temperature or examined in any way.

                            There is currently no known cure for interstitial cystitis --- yes, I'm certain there is something out there that will eventually be identified so we can be cured. And when it is found, we will shout it from the housetops! Right now, we can hope to find treatment options that are effective, take part in clinical trials if we're eligible, and keep up to date by reading information here and on the ICA site at ichelp.org

                            Donna
                            Last edited by ICNDonna; 10-08-2013, 07:44 AM. Reason: corrected typo
                            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


                            • #15
                              Re: Please NO advertising in this board.

                              I know its been a long time since anyone has posted in this topic,so im not sure if anyone will read this soon or not. I think im aware of the NP you all are speaking of. I found her by doing my own research. I too thought it sketchy for someone to only do phone and skype consultations. When i read how much it was for a phone consultation i was stunned. If someone like that can truly help, then im sure its worth the money. But the idea of being sent to labs for your own testing to send back to her seems odd. Is there not other places or phasilities that does a lot of research and testing with your urine,to check for bacteria or things related or contributed to IC? I know we are all looking for that miracle drug or whatever. Has anyone ever been told you had such and such bacteria,yet the antibiotics you were told to take still didnt help? I had a uti and the antibiotic cleared the infection but not the symotoms. :-( :-(

                              Comment

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