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"IC Soulution" cure??

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  • klaufert
    replied
    You're right, forget her. She didn't invent the idea of these cultures, she's just the first place I've heard about it from. Check out BJ Czarapata, a practicener(sp?) in MD who does those cultures and uses long term antibiodics that target unusual bacteria, for, I repeat, SOME of her patients, and she has had SOME success. She also does yeast treatment, I believe.
    Please don't ever say such pessimistic things. People have found treatments that work for them. Maybe not "cures", but treatments that significantly improved their lives. Aren't there people on this website who are in remission? Didn't some of them find good solutions? Everyone keeps saying that people never go into complete remission, it always comes back. But people are doing different treatments than they used to, and if some people have been in remission for a few years or even one year due to these treatments, who is to say that they will absolutely have flares again? People survive cancer, ok? I believe our illnesses will continue to be better understood, and people will recieve better and better treatment. It's not a death sentence written in stone! Sure, it's a huge often frustrating challenge to say the least, one many of us find to difficult to face, so we just let ourselves suffer. But, for instance, I just started lyrica, and I am feeling better each day. If I have to be dependant on lyrica and lifestyle changes for the rest of my life, I guess I am not "cured". But if those things can take away my pain, then I will feel that I have been relieved of this burden. Sure it totally sucks to have to give up the things I love to eat, pretty much all my favorite foods are forbidden. Not to mention I've only been of drinking age for a year and a half, and I feel left out when I go out with my friends. But I finally feel that these things are a worthwhile sacrifice if I can have my body back.

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  • SandyRN
    replied
    This lady who wrote this book was recently on

    www.quackwatch.org

    I believe we've had in depth conversations regarding this IC "Solution" book before.

    My advice is to read the books that are listed at the top of this webpage, and in the ICN shop. They've been tested, tried and true by so many IC'ers. The only answer to IC is that there really IS no answer and I've always felt this woman was out to make the almighty dollar!

    ::zips lips and slinks back into the corner::

    Leave a comment:


  • topcop229
    replied
    I agree that Kilmartin implying that ALL cases of IC are essentially STDs is a bit over the top, and there are many on this site that can easily disprove that theory due to their age at diagnosis or becoming symptomatic. It also struck me in reading that quote that she is obviously very opposed to men being uncircumsized...maybe it's her disdain that has either consciously or subconsciously caused her to feel so strongly about circumcision and that it is the origination of IC.

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  • laker46580
    replied
    Hey Fish

    You are wise beyond your years! Thank you for the informative posts. You brought it down to my level. It helps me to explain this crazyness.

    Leave a comment:


  • Trishann
    replied
    Kate, you pretty well summed it up. Team work, you and your doctor. Getting a doctor that will help you, and help you to feel better.

    Trishann

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  • Bdelaune
    replied
    Danica, sorry i didn't respond sooner, but i just logged back on to the site. I love my stimulator, but as someone already posted, it is a major surgery. I only tried the stim b/c i had run out of other options. You have the first surgery to place a lead into your sacral disc, located near the end of your spine. (The lead is connected to a batter pack that you wear near your waist.) The lead sends electonic pulses to interfere with the messages sent from your bladder. So, while my bladder says "gotta go" as soon as it has anything in it, my brain won't get the message until the bladder is actually full. (this is the layman's explanation!) If you show a positive response, you have another surgery to implant the battery inside a butt cheeck. (My husband jokingly calls me scar-butt now...kinda like Scarface)

    I still have sensitivities to food, but its helped a lot with frequency. I am happy i had the surgery, but my doctor would not have done the procedure if i hadn't tried a million other treatments. Keep it in the back of your mind if you don't respond to other treatments, but it really is a last-option treatment. I have already had to have surgery to replace the battery once, and will have to do it again sometime in the next 5 years.

    I also want to re-emphasize a point someone else made. If your doctor does not take your pain or concerns seriously, find another doctor. I was lucky that my first doctor was really good (but eventually retired). I went through a few mediocre ones before i found my current doctor, who is fabulous.

    Good luck!

    Leave a comment:


  • evanseri
    replied
    Please always take into mind that many people out there unfortunaly make money off of the suffering of others. IC is a very hard disease to live with and often times people will pray upon our volnerablitiy. I myself have spent countless nights searching the interent looking for a cure and being promised one if I just spend some money. Be aware that at this time there is no cure for IC according to leading experts. If there were don't ya think we all would be buying up this miracle antibiotic. Don't you find it odd that this women has the cure, but is only willing to give it to you if buy her book for $37.00. I would be interested to know if anyone on this site has actally been hepled by this book and the mysterious antibiotic. Just be careful there are too many people out there looking to make money off of our suffering, they have no conscience, and are only looking to make a quick buck off of easy pray.
    Erin
    PS. I too had IC as a child and I am positive that I was never molested

    Leave a comment:


  • klaufert
    replied
    Um, I read the whole thing, and she goes on to say that you can also get te bacteria from your own feces(sorry, kinda gross) and other sorces. I don't know why she even says the STD thing, when there are other sources as well. I agree, a bad choice of words. I don't think she's correct in saying that bacteria is the answer for everyone, because I also believe that truly IC is in reality several conditions with similiar symptoms. However, I have read on other sites about women who acheived total remission by going that route, so it is possible. It's absolutely worth a shot.
    About the auto-immune disorder theory-there are those who believe that your immune system has been compromised, and cannot fight off the bacteria. So if it does turn out to be that, you need to take messures to improve your immune system as well.
    I know what it's like to be in that shock of just getting diagnosed. At 18, even after two years of pain, I couldn't quite process it. Now, 4 years later, every time I get a bad flare, I am still fillled with the same disbelief. What you are doing is great-look for alll your options! I couldn't handle doing the research or trying a new doctor, I'd just feel so overwelmed. I'm finally now taking an active role in my own health. A lot of days I feel like it is too much for me to deal with.
    For instance, I had an app. with my relatively new doctor today, and I wanted to talk to him about several options I'd found in my research, and ask for better pain management. All week, I kept thinking there was no way he would let me get through the whole list, and what if he doesnt take my pain seriously enough. My husband told me again and again, you can't worry about that...just assert yourself, make him listen to everytihng you need to say. I was so anxious about it (due to very bad experiences with doctors in the past) I was almost shaking by the time he came iin the room. But I somehow calmly told him I had a list, and we went through it, and he took my pain seriously and with unusual sympathy for a doctor. Maybe part of it was luck, he's very nice, but I learned my lesson for sure. I let doctors bully me in thte past. Make sure you have a good doctor, but remember that you are sort of a team, and they don't always have all the answers. I have been given totally false info by doctors-research what they tell you.
    Most importantly-demand proper pain management! There are specialists who can help you with things other than pain meds. Don't give up!

    Leave a comment:


  • MyDaughterHasIC
    replied
    Heather was a virgin and 13 when having her first IC symptoms, so it wasn't in my humble opinion an std. I do however agree that it is autoimmune. I'm trying to find a coinsidence between her anaphyliasis at 13 to a bee string and IC, both are inflammatory

    Leave a comment:


  • Danica
    replied
    Hi Jen~
    Thank You for your response. I won't rush into anything as far as the implant goes. Besides I'm positive my uro would certainly not allow me to jump to that point just yet. I guess at the age of 40 I am not willing to give up being an active individual. I miss my long runs so much...it is just too much motion for my bladder to handle. I feel like I have to pee as soon as I start the run. I'm trying new things now like the eliptical machine at the gym and it seems to be a friendlier workout then jogging. Anyway, I really appreciate all the support from every one. It is such a blessing.

    On a side note...is that you with your pet in the picture under your name? Can you let me know how I may do that as well?
    Thanks:-)

    Peace.
    Danica

    Leave a comment:


  • Sarojini
    replied
    Danica, yes -- there is a treatment called neuromodulation (Interstim) that can help reduce urgency and frequency in some IC patients, but it is an implantable device that stimulates your sacral nerve. It is major surgery to have the trial and then the permanent implant -- I know because I am in the middle of doing it -- and should NOT be considered unless you have tried and exhausted all of the less invasive treatments out there first. It is NOT a quick or easy fix.

    I personally agree that the origin of IC may be different in different people. I am one of those who developed my first IC symptoms at just 8 years old, and since I was not sexually active at that point (nor was I abused), I just can't buy the sexually transmitted theory.

    I do believe that sex can increase the likelihood of true UTIs, as you mention -- that is well documented scientifically and occurs because the urethral, vaginal, and anal openings are so close together in women, and cross-contamination during sex is common. It's possible that once your partner died, your UTIs decreased in frequency simply because you were not having sex as much.

    I commend you for looking for all treatments possible, and I do understand that in the beginning it is common to feel the way you do. When diagnosed with a chronic illness, it is very, very common for people to go through the stages of grief as if they are mourning the loss of their previous "non-sick" lives. Denial, like the one you're feeling, is common -- it is indeed one of those stages of grief. You are not alone.

    Please don't let your denial or any other feelings cloud your judgement, though. Now, more than ever, you need to look at treatments through a logical, calm, and almost scientific eye -- right now, if I told you eating a worm would cure cancer, you'd tell me I was an idiot, most likely. It's the same with IC treatments -- if it sounds way too good to be true, it probably is. Donna's post about this was great

    Leave a comment:


  • MerryBerryMoose
    replied
    Originally posted by L. Thomas
    My urogyn thinks IC is an underlying condition that you are born with and it becomes active after bladder tramua. That fits me prefectly.
    I tend to agree with that theory. My IC started about 4-5 months after a bad fall (fell about 2-3 feet on snowboard onto hard ice). A lot of things havn't seemed right since then.

    Leave a comment:


  • Danica
    replied
    Donna, you give me hope...

    Donna~
    Oh my gosh if such a thing exists, I am ALL for it. I will look it up instantly. My biggest hope now is that we as a family will be able to continue with our plans to hike Half Dome. I am indredibly motivated to follow the IC diet to the letter and give my bladder a chance to rest. (I have seen the word "heal" used in place of the word "rest". Is there such a thing as "healing" the IC bladder?) In the mean time, I will continue with Elavil and Cystoprotek and hope for pain free days.

    Peace,
    Danica

    Leave a comment:


  • ICNDonna
    replied
    P.S. Danica, there is a product available in the ICN Shop that just might be something that would be a huge help for you. It's called the Travel John and is perfect for hiking or long walks. When we go to the beach I stick one in my pocket --- all I need for a bathroom break is a bush, log, or sand dune to get out of sight.

    Donna

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  • Trishann
    replied
    I know we should never give up hope but I do believe there is no cure for IC right now. I do believe the things that are done is to only help us with the pain and to try to give us comfort.

    I do believe that because there is more insight now on IC, that maybe with a miracle that somehow they can find out what is causing it and find a cure.

    What is so hard each one of us have a different connection with it. There is no set rule. But there is always hope, so don't give up.

    Trishann

    Leave a comment:

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