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  • follow-up message on Dr. Attila Toth

    Hello all:

    I read with some dismay the thread put up around July this year entitled “greatly helped by innovative antibiotic treatment”. That thread is now closed so I decided to start another one to say what I have to say on that thread, and on Dr. Atilla Toth.

    Dr. Toth is better known among male pelvic pain patients such as myself than among femal patients (I seem to have some combination of prostatitis and cystitis, not sure how to best describe my condition). He is certainly a fully certified MD but not a urologist, I believe; rather, he has some sort of speciality related to infectious diseases and laboratory analysis (there is a name for it, cannot remember it now). He is upfront about his training and specialties, or he was with me.

    His methods are definitely suitable only for pelvic pain patients with pathogens like bacteria, fungi, etc. – and he does have an in-house laboratory that uses much more sensitive techniques for detection of these pathogens (some of them, at least) than most other laboratories. He does use an aggressive approach called by one of the posting persons (Allibeth) the “air, sea and land approach”, i.e. using IV, intra-urethral applications and also injections into the prostate (for men), or the paraurethral glands (for women). I believe, though, that not everyone would get this full “air, sea and land” treatment; some may just get IVs, for example.

    I saw him myself because I seem to have a combination of symptoms related partly to bacteria (detected by him as well as elsewhere). I have been considering his treatments, but am still not sure about them because he did openly tell me that in cases like mine there may not be a clear cure. I may have some relief for a few weeks or months and then have to come back for more treatments if symptoms come back as they may in my case. Every case is different – he was upfront about that, and about the possibilities of success or failure. Some cases (with some types of pathogens) may be much more readily curable than my case.

    In any case, I tend to believe Allibeth and Deb when posting about their success with Dr. Toth’s treatments, and there must be others like them. I believe them regarding their own successes, but I do think that they may have been a little over-positive about the approach as a whole. (For example, it was mentioned that Dr. Toth has success with every IC patient that he treats, but even Dr. Toth would probably deny this – he was quite upfront with me, for example, that mine was a difficult case, it depends on the case.)

    As Allibeth says, the approach would only work for those who have pathogen-related cystitis in the first place. This brings us back to the debate about what percentage of patients have these pathogens to begin with – I don’t know the answer to that, but I know that many standard lab techniques cannot detect many of these pathogens. Allibeth said that she experienced some partial relief from antibiotics before going to Dr. Toth, and this suggested to her that his methods may prove useful for her. I think that for patients who have no indication at all that they may be helped by antibiotics, antifungals, etc., they are probably less likely to be helped by Dr. Toth’s methods.

    Another issue is that some people may react adversely to more aggressive or invasive approaches. For example, there are those who have developed bad and perhaps lifelong symptoms after bladder instillations, bladder investigations or even cystocopies. There may be negative effects from injections into the prostate or paraurethral glands. Relatively aggressive methods like Dr. Toth’s may, I think, have some risks, and people should do some thorough research on this before going ahead. Another risk that is common to all the antibiotics/antifungals approaches is, I believe, the risk of fungi or other pathogens developing due to use of strong antibiotics.

    I know that there were many skeptics on the board, asking why Dr. Toth was not doing research on this methods, why he was not presenting the results at urology meetings, etc. Well, some people are into research and others are not, it does not mean that his methods are not useful for some. Also, how would one find a control group for his methods? Would one put patients through his aggressive techniques, telling them that they may (or may not) be getting the actual drugs?

    I do not necessarily agree with the moderator’s comments that someone considering his methods should make a joint decision regarding this with his/her own doctor. I had noticed that most doctors tend generally to be skeptical of things that they are not very familiar with themselves, even treatments that could work – anything different tends to be looked on with suspicion. It does depend on the type of doctor that you have.

    The first thing is to decide, I think, is whether to go the antibiotics/antifungals route or not. If yes to the antibiotics/antifungals route, there are several options to consider, with Dr. Toth being only one of them. Oral antiobitics should be tried first, and then IV antibiotics and of course the latter can be done with other doctors. Dr. Toth’s approach is probably the most aggressive of the antibiotics/antifungals approaches. For some patients, I have no doubt that his approach has been or would be effective, and may be the only one that can be effective for some patients. As always, there are pros and cons to each approach, and many things to consider.

    I do think that even for those with pathogens, there are underlying factors contributing to them remaining that way, that may need to be addressed. For example, in particular, they may have poor overall or local immunity. Most doctors ignore this aspect, which I think is a mistake. I am not a doctor nor an expert, unfortunately, but some have tried boosting immunity along with administering antibiotics/antifungals. The boosting of immunity can be done by administering natural substances like Immunocal (recommended 3 or 4 packets a day for patients with diseases related to immunity) or even interferon (I read about the latter being done on the Internet by Dr. Dimitrakov for Chlamydia patients.) Then there are the Eastern European doctors that have been using enzymes such as Wobenzym or others; administering these along with the antibiotics/antifungals is supposed to make them much more effective.

    Finally, I was disappointed that the thread on Dr. Toth degenerated to some name calling at the end, regarding criticism on grammar/word usage or some silly thing like that. This sometimes happens on forums on male prostatitis and elsewhere, too, and it is unfortunate because it prevents some people (like myself sometimes) from posting. In fact, I was reluctant to post this particular piece, but I think it is important to relay my thoughts and experiences regarding Dr. Toth anyway.

    Regards, John
    ([email protected])
    Last edited by ICNDonna; 05-27-2008, 12:42 PM.

  • #2
    Since arguments grew from the thread you are referring to in this thread it is good that it is closed now. I want you to understanding that putting both sides to any treatment is part of our job and important in helping patients get all the information possible so that they can make an informed choice about any treatment they choose. Obviously this is one that needs to be thought about carefully and caution is necessary. That does not mean that information about it is not allowed as long as questions, possible problems, and cautions are allowed and not taken personally. With that I would like to quote Jill on what she said in other thread:
    I understand what you're saying... but if you only knew the number of patient stories that we've had that are exactly the opposite of yours... you'd understand our caution. I've never heard of Dr. Toth.... and his approach is certainly aggressive. I, for one, would be far more compelled to learn more if he could produce some research studies that prove infection IS present, since one of the best universities in the world (University of Maryland) spent five years performing the most extensive testing they could searching for bacteria in urine and in bladder biopsy samples... including looking for random fragments of bacterial DNA. Only a few, varied, infections were found in their very large testing sample.

    Thus, I have a few questions:

    (1) What tests does he use to confirm the presence of any infection? What type of infection is it?? Heterogenous, diverse colonies?? biofilms?? or single pathogens??
    (2) Are there any published research studies that confirm these results?
    (3) Has he made any attempt to present his therapeutic methods to the IC research community?? Honestly, I've never heard of him and have been going to conferences for years.

    After so many years of seeing patients get their hopes up while spending thousands of dollars for untested therapies that did not help...... we have to be cautious!!!

    Jill
    I recently did some research on antibiotic therapy. There are big concerns anytime you consider antibiotic therapy:
    • Antibiotic resistant infections (this is a scary risk)

    • Yeast infections (which can cause flares) most doctors doing this treatment will put you on Probotics to avoid the Yeast Infections.
    • non-pathogenic strains of bacteria which really isn't causing any inflammation which don't grow well on a solid media, and often appear in a broth culture.
    • Developing an allergic reaction to the antibiotic which more commonly happens after long term use.
    • All the normal risks with any individual medication
    Faith, Hope, and Love,
    Katrina


    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 http://www.facebook.com/kat671?ref=profile
    Be the Miracle! & Pay it Forward!

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

    Comment


    • #3
      Upon researching this a few months back, I discovered that he charges 8-10 THOUSAND DOLLARS for the treatment and does not bill insurance. Who has that sort of money and why does he not bill insurance? How is someone that is "in this to help" pull charging this much and expecting cash up front? Many of us cannot work because of our IC, and/or have other outstanding medical bills from our IC that we are still stuggling to pay.

      One of his patients, please answer me about that. I may sound angry because I am. I am sick of people, companies, doctors trying to make money from those of us with incurable diseases. Yes we are desperate, but I would hope that we are not stupid.

      Maybe his treatment works...but the way he has set this up would make me not ever be financially able to even try it. Thanks, Doc.
      30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

      My experience:
      ~Previously took Elmiron 100mg three times a day
      (9/29/05-7/06)
      ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
      ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
      ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
      ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
      -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
      -20 month postpartum remission from 4/17/09 to 12/10/10.
      -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

      Also doing:
      ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
      ~Prenatal DHA/Fish oil supplement
      ~Vitamin D supplement
      ~Culturelle probiotic

      Comment


      • #4
        Thanks for sharing that Massageduala, I don't blame you for being angry...medical bills are a sensitive issue to many of us...me included. Thank you very much for sharing that info.
        Faith, Hope, and Love,
        Katrina


        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 http://www.facebook.com/kat671?ref=profile
        Be the Miracle! & Pay it Forward!

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

        Comment


        • #5
          John makes some very good points in his post about Dr. Attila Toth. I don't think Dr. Toth, himself, claims to cure everyone. Do you know any IC treatment that claims, or is capable of, curing everyone. I think Elmiron, highly touted by many long term IC researchers, showed a 38% improvement rate in the company research study.

          As to conducting a research study capable of being published, Dr. Toth would have to spend considerable time and money to do this. Most studies are sponsored and paid for by the pharm company planning to sell a product, or by the NIH/NIDDK (in the case of IC) and it takes considerable time and work to get approval for an NIDDK grant. Have you noticed they seem to go to the same people year after year? The U of MD cannot find any bacterial species in IC patients but many others can and have: Dr. Paul Fugazzotto, Dr. John Toth, Dr. Attila Toth (NYC who looks for urogenital bugs), United Medical Lab. Fairfax Medical Lab, and others. A local microbiologist for a large urology practice told me they find Enterococcus but dismiss it as a "contaminant". It comes from the same place as E. coli, (the intestines) but E. coli are not considered "contaminants". Why?

          Enterococci are a form of Streptococci and so do not need a colony count to determine the presence of an infection. When a child has a Strep throat they do not count the colonies. We are dealing with the difference between Gram negative species (E. coli) and Gram positive species (Enterococci) so should not use the same measure in determining infection. In both cases if there are symptoms and the presence of bacteria infection should be considered.

          Many patients have posted on another site about their success using Dr. Attila Toth. None go into this treatment lightly and do considerable research before deciding. Perhaps Allibeth will post more about this and ask some of Dr. Toth's patients to post about their results.

          Martha

          Comment


          • #6
            http://ic-network.com/forum/showthread.php?t=21520

            Originally classified in the 1930s as Group D Streptococci, Enterococci were officially given genus status in 1984 after hybridization studies showed a more distant relationship to Streptococci. Enterococci are gram-positive, spherical bacteria, which colonize in groups or chains. They are naturally found as part of the digestive tract flora in many organisms including humans. They are robust microbes able to tolerate relatively high salt and acid concentrations. They also seem to be able to with stand low levels of detergents, explaining why inadequate cleaning procedures can promote Enterococcus infections.
            What is now recognized as pathogenic Enterococcus was studied as early as the late 1900s. Currently, Enterococci infections account for 12% of all nosocomial (caught in a hospital) infections, second only to E. coli. An Enterococcus infection can cause complicated abdominal infections, skin and skin structure infections, urinary tract infections and infections of the blood stream. These infections can be difficult to treat, particularly in cases where the strain involved has developed resistance to several antibiotics. Infection can be life threatening in such instances, especially if the patient is already immuno-deficient.

            There are two species of Enterococci which cause the symptoms described above, E. faecalis that accounts for the majority of infections (79%) and E. faecium. In a study conducted between 1995 and 1997 data were collected from over 15,000 Enterococcus isolates. Of those, less than 2% of E. faecalis were found to be resistant to ampicillin and vancomycin, whereas 83% of the E. faecium isolates were resistant to ampicillin and 52% were resistant to vancomycin.

            E. faecium is known to have a resistance to several types of antibiotics including quinolones and aminoglycosides. Resistance to penicillin was first observed in E. faecium in 1983 and in 1988 the first cases of resistance to the "antibiotic of last resort", vancomycin, were detected in Europe. Vancomycin resistant strains of E. faecium were reported in the US in 1989. Resistance to several antibiotics and tolerance for adverse conditions makes E. faecium a major concern for the medical community, which has dubbed this microbe a "supergerm".
            ***************************

            So enterococcus is a normal intestinal flora that can cause regular UTIs.

            Any questions about the wording of this, PM me.
            __________________
            Jen
            Faith, Hope, and Love,
            Katrina


            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 http://www.facebook.com/kat671?ref=profile
            Be the Miracle! & Pay it Forward!

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

            Comment


            • #7
              Many MDs in NYC don't accept insurance (none of mine do -- I have to pay out of pocket and then wait for my insurance company to partially reimburse) -- it's actually, generally-speaking, a good sign that they're in demand. Toth gives a discount for people with IC as he acknowledges the disability etc issues, but sure seeing him is still expensive. He has a f/t microbiologist, huge Manhattan rent bills, spends a lot of time with each pt., and pays a nurse and his office is often open 7days/wk -- so even if he waives his own MD fee there's still quite a lot of expenses. It's unfortunate that this is the nature of NYC healthcare -- I envy people that can get what they need locally and have all expenses covered. I wish I had a good local lab and MD that accepted my insurance.

              That being said, Toth has helped many people that have had tried a multitude of treatments to no avail. Please contact me if you want more info about antibiotic/antifungal treatments -- I have a message board devoted entirely to the topic of GU infections.

              Comment


              • #8
                Dr.Toth will spend lots of time talking with you

                Originally posted by Allibeth
                He has a f/t microbiologist, huge Manhattan rent bills, spends a lot of time with each pt., and pays a nurse and his office is often open 7days/wk -- so even if he waives his own MD fee there's still quite a lot of expenses.
                This is all true, especially the part about him spending a lot of time with each patient. When I went to see him the inital consult visit was a couple of hours. I was amazed at the price, it was so little for the amount of time he spent with me. When I went to the Mayo clinic in Rochester Minn. the visit was about 30 mins at 490$ and the doctor wasn't even listening to me. He actually talked over me and totally patronized me.

                Dr.Toth was great. He spent so much time with me and it was money well spent. Needless to say I was not impressed with the Mayo clinic. Sure lots of people have had good experiences with that clinic but I'm not one of them.

                Erica

                Comment


                • #9
                  I always find these discussions so very interesting because when my IC symptoms became chronic it was when I was first diagnosed with a strep B infection in my urine.
                  hugs,
                  Janie

                  Comment


                  • #10
                    No treatment cures everyone's IC (or IC symptoms) and I don't know of any practitioner or drug company who claims that they do. I think we need to focus more on open discussion of the known risks and benefits of various treatments, including antibiotics, in addition to sharing our own personal anecdotes and beliefs. If the risks are not being discussed or are being downplayed, we need to know why. If NIH isn't funding, there may be a good reason.

                    I tried long-term antibiotics, including the ones used for enterococcus, and I believe they helped a little. I don't know whether it was from their antibiotic properties or anti-inflammatory properties. I also had some typical side effects (yeast, resistant infections), and feel lucky that I didn't have more problems than I did. The practitioner I was seeing at that time ALWAYS recommended trying more, or different, antibiotics whether or not I had a 'positive' culture. I was strongly discouraged from trying Elmiron.

                    Elmiron is what has helped me the most, by far. I've had minimal side effects and consider the risks to be far less than the long-term, high dose, sometimes changing antibiotics. I realize that many are not helped by Elmiron or have intolerable side effects, and some people believe they've been helped greatly or cured by antibiotics. I will NEVER go back to or recommend the practitioner who kept pushing the antibiotics on me. I let it go on as long as I did because I was scared and in pain, and so let myself be led along that the next attempt could really make the difference.

                    Don't let practitioners, or their tag-teams, scare you into trying things that may be dangerous to you without fully exploring the plusses and minuses. It's your body, your money.

                    Comment


                    • #11
                      Ok, so, what if many of us have a "hidden", or hard to identify infection. It sounds like some of you are saying that we should just ignore it, cuz the treatment might be harmful. What about the infection?, isn't "it" harmful? I mean we can all agree that this disease seems to be progressive. So, lets just ride it out to see how many organs we can lose. I mean, does this make a lot of sense? Not to me! If I have an infection, and it's doing this to me, I want to do something about it. Of course, this is just my opinion.
                      I HAVE LYME TOO

                      For info. on lyme disease in PA..
                      Visit: http://health.groups.yahoo.com/group/PennsylvaniaLyme

                      God Bless You!
                      Glenda

                      Comment


                      • #12
                        I tried long-term antibiotics, including the ones used for enterococcus, and I believe they helped a little. I don't know whether it was from their antibiotic properties or anti-inflammatory properties. I also had some typical side effects (yeast, resistant infections), and feel lucky that I didn't have more problems than I did.
                        I have been on long term antibiotics the majority of the time that my IC progressed. I am certain if they weren't helping somewhat I would have gone to the doctor to get a proper diagnosis a lot more often (I had a 10 year long struggle of incorrect or no diagnosis) Since my diagnosis I felt they helped a bit at first but no longer. Now there is a lot of worry of what they may have done to me. (doctors worry)
                        If the risks are not being discussed or are being downplayed, we need to know why.
                        Most definaty! Very true for all treatments!!!!
                        Faith, Hope, and Love,
                        Katrina


                        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 http://www.facebook.com/kat671?ref=profile
                        Be the Miracle! & Pay it Forward!

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

                        Comment


                        • #13
                          Discussing the risks and benefits of every treatment is majrly important. There are other ways to treat infections than antibiotics if that is the cause.

                          I mean we can all agree that this disease seems to be progressive.
                          No, I don't think we can. In fact this disease is progressive in only a small minority of cases.

                          Faith, Hope, and Love,
                          Katrina


                          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 http://www.facebook.com/kat671?ref=profile
                          Be the Miracle! & Pay it Forward!

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

                          Comment


                          • #14
                            Dr. Toth and infections

                            A patient just wrote me that she went to see Dr. Toth recently for testing and treatment. She had been diagnosed with IC 3 years ago and has been in pain since. Dr. Toth found she was positive for Chlamydia and also has endometriosis. He treated her aggressively but it will take time for curing the infection and perhaps laproscopic surgery for the endo. She was very upset because she had requested a test for Chlamydia 3 years ago locally and it came back negative.

                            In the past laboratory testing has failed many of us in terms of finding urogenital pathogens and Dr. Toth and his lab seem to be capable of better work although it requires more time, experise and therefore money. But what is more important than an accurate diagnosis for our health problems?

                            Martha F

                            Comment


                            • #15
                              Glenda,
                              I also do not agree that IC is progressive in the majority of cases.
                              ****
                              And generally (not directed to any individual that has posted),
                              If an individual feels that their IC is caused by infection, then that individual should absolutely be able to do what ever treatment they feel is right to help themselves. The problem that arises is when people say that ALL IC is bacterial and get an attitude that anyone that does not agree is mistaken. I don't agree that it is bacterial (in the majority of cases--I am sure that there are some exceptions) but I respect the opinions of others.
                              Last edited by Katrina; 02-26-2006, 11:32 AM.
                              30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

                              My experience:
                              ~Previously took Elmiron 100mg three times a day
                              (9/29/05-7/06)
                              ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
                              ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
                              ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
                              ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
                              -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
                              -20 month postpartum remission from 4/17/09 to 12/10/10.
                              -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

                              Also doing:
                              ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
                              ~Prenatal DHA/Fish oil supplement
                              ~Vitamin D supplement
                              ~Culturelle probiotic

                              Comment

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