Scary stuff on another IC Message board

[Hangin' Tough]

*I apologize up front for the length of this post*
While searching on the internet, I found another IC message board. I won't say where. Some of the info that is being propogated through this site is just crazy. Colon cleansing for IC?????????? Liver detoxifying????????????? Mercury detox- mercury toxicity caused by amalgam dental fillings???????? I understand that this disease can really make us grasp at straws, but some of this stuff may be harmful. I come from a health care background and dealt with public health issues and I can promise that there is not any truth to the fact that amalgam fillings will cause mercury toxicity. Just viewing the postings frightened me. There are people who will believe anything that anyone (friend or stranger) tells them. I think that people need to be proactive in thier own care, but reality is important. How many people are bilking millions from people with IC because they are gullible. SO SAD.
I apologize for this ranting, but it really upset me to see this hogwash that they were peddling on a web board that is supposed to offer help and suppport for people who are suffering.

[ICNDonna]

Unfortunately, as long as there are diseases which can't be cured, there will be those who choose to capitalize on the misery of others.

Fortunately, there is a web site where a very dedicated retired physician has devoted his life to exposing quackery. The site is http://www.quackwatch.org --- and I am grateful to my uro for telling patients about the site in a monthly newsletter.

Warm hugs,
Donna

[yvette]

HT: Thanks for sharing your findings. I think what you posted is so important. It can help some of those out there who are so down and in need of some help....it helps remind them to look before they leap. I've heard of that too -- ripping out all your fillings to possibly rid your body of all mercury, or instilling a liquid form of silver in various places (yeesh!) and even doses regular plain old sugar mixed with water as a means of treatment....

"Yep" some of those other websites for IC are downright crazy--others are even violent, hostile and without any constraint -- let alone the misinformation that runs rampant.

BTW: When I first was ill with IC, I actually considered ripping out all my fillings to replace them with porcelain.......geeeeeez! Thank goodness I didn't! But I was sick, crazed looking for something--anything to work.

[Iris]

Thank you for posting your findings, and also thank you Donna for listing the Quackwatch site, I have bookmarked it, thanks a lot for the information, take care Iris. :)

[Cate]

I think that for many people, when all options that "traditional" medicine have to offer have been exhausted, they turn to "alternative" medicine options. YES, you do have to research VERY carefully, but I see nothing wrong with cautiously experimenting with non-tradional treatments. I have IBS along with IC and have done colon cleanses and other alternative type treatments that have greatly helped both my IBS and IC(in my opinion these diseases are connected). I think that tradional medicine has come up with its share of "hogwash" treatments for IC (i.e. urethral dilations (of which I have had many and they did more harm than good) and instilling caustic substances into the bladder). For those that have not been able to benefit from standard treatments, alternative medicine has some treatments that are at least worth looking into. It really depends on what each individual is comfortable with. Just my opinion...

[rnewman]

Hi guys....

Im exhausted but I wanted to add that this is an interesting thread: and I see both sides to this story.

Some internet health sites can be daunting as hangin tough mentioned. People get angry, frustrated, and are looking for a cure. They begin to question any and all possibilities. As a patient of ANYTHING, not just IC, you must be careful about the things you read on the internet. Very few sources are trustworthy.

Cate, however, also brings an important point. Western medicine today, paticularly in this country, is focused on fast and easy fixes. That is what the pharmeceutical companies are driving towards. Thats what brings financial gain to them. However, for conditions where medicine has not created a quick fix, "complimentary and alternative" medicine can play a big part. Sure, not ever new suplement fad works, but some are clinically tested, and some are tested through years and years of use over time. That is saying more than some of our new FDA approved medications that are out on the market within months. Many of our medications today....valium or diazepam(valerenic acid from valerian root) and Lipitor or atorvastatin (mevacin, which is found in red yeast rice) started as a plant or an herb. And vitamins also play an important part in body function not only in health, but in treatment of illness. Many doctors will prescribe Zinc or Vitamin C at my hospital for wound healing.


As a side note to all of this, Mercury toxicity is very real and very dangerous. New studies are showing that ONE out of every EIGHT women of childbearing age has mercury levels that are teratogenic, meaning they would harm a developing fetus. It is estimated that 350,000 babies born within the next 5 years will suffer from growth, development, or behavioral problems as a result of fetal mercury exposure. This article was in a recent issue of the American Journal of Nursing (AJN) and has also been sited by the EPA, and the United states department of fisheries and wildlife.

I have been diagnosed with mercury toxicity. Its symptoms are real and visable. My urine toxicology test was off the charts high. I do NOT, however, have any mercury almagams nor have I ever had any. Once the almagam is placed in the mouth, it is amalgamated. No mercury can be leached into the body once it is hardened, it is an alloy of silver, nickel, and mercury. The risk for ingestion is during the getting of the almagam, OR in it's removal. A few filled cavities should NOT give someone mercury toxicity, however. I do believe though if you are at risk for mercury toxicity, you should stay away from silver almagams to decrease your risk.

The problem with mercury is that it's half life is ENORMOUS and it is very, very, very, very slowly excreted from the body. Its very difficult to get rid of. And its effects are difficult to deal with.

I was diagnosed by urine test. It was not something my doctor had anticipated, it came up as a part of the test panel he was doing and it was a surprise. But it makes a lot of sense in my case. The only guess at the source of my toxicity is in food....I was a big fish eater. I was a vegetarian, and ate fish 4~5 times a week. Canned tuna is not safe. Our mercury levels have risen dramatically, and it isnt clear what fish is safe and what is not.

My doctor has advised me to stay clear of fish, and to work on a detox regimen. Detoxing is very difficult to do, and not comfortable. It has been months since I have had any fish, and I am begining to see a difference. And, because mercury is an irritant (just like high concentrations of vitamins in our urine,) my doctor is pretty sure that my IC will be under better control once all the mercury is removed. That, however, could take years.

Anyway, I just wanted to add my two cents. Yes....there are MANY scary sites out there. That is why if you have a question it is best to call your doctor. It is hard to know when a site is trustworthy or not. I tend to stick to sites used by the American Medical Association...www.cdc.gov, www.pubmed.com, (http://www.pubmed.com,) and a good source for children's information www.apa.org. (http://www.apa.org.) It is hard to weed through everything on this vast internet!

big hugs,
Rachel

[ICNDonna]

Life does get scary, doesn't it. I've been hearing on the news recently about high levels of mercury in some fish --- then there's mad cow disease --- and now chicken flu in Asia!!! And that's just the 6:00 O'clock news. We used to eat fish several times a week; now we limit to twice a week.

Donna

[kadi]

Yeah, I saw a therapist shortly after cysto/hydro. He told me I'd lived a "toxic lifestyle" before this (yeah, right, never smoked a single cigarette, never more than 1/2 glass of wine only several times a year, never any street drugs... Okay, too much stress, probably too much coffee. Well, if that's the criteria, most of the adult US population should have IC!!!). Also told me I should have "colon cleansing". AND the worst of it is, I paid $95.oo to hear this... banghead (My dad offered to tell me I'm full of s--t for free.)

Learning experience #463-experts may not be.

[porphgoddess]

Mercury in fish is a real thing. Down here in Florida there are some areas where signs are posted warning people NOT to eat any fish that they catch. We have polluted the everglades quite badly, and indians who lived off of that land now have mercury related problems. As for fillings, that's another subject.

I must say that in an IC flare I'd be willing to throw chicken bones and chant, if I thought it would help. So I don't think that there is any harm in trying a product IF you know what is in it. Coral calcium?.....Sugar?....sure, give it a try if you like......but I'd stay away from "mystery" herbs and anything that they won't tell you what's in it!!!!!

Just my two cents,

[yorkiegirl]

This post disturbed me for a number of reasons. First, as someone else said (better than me), western medicines haven't helped me yet--in fact, many times the treatment was worse than the disease. I've had uros tell me to learn to live with the pain, to consider myself an amputee. Good grief, I paid good money to hear that? Alternative medicine, on the other hand, has been at least as viable as western medicine, and the practitioners at least have understood the relationship of one body part or system on another, which is more than I can say for many of the M.D.'s I have seen. When I read about colon cleanses or mercury fillings, I don't rush out and try them, but they give me something that traditional medicine can't: hope. Hope that there is something that will work for each of us. The allegedly scary website is probably one that I've seen along with others. It was responsible for prodding me into listening to my body and trying to figure out the pieces of the puzzle. For example, I didn't know anything about toxicity in my body--now I recognize the signs very clearly and am trying to figure out steps to take to prevent it from recurring. I truly didn't understand how important diet is to IC'ers. I didn't know how to design a plan to deal with my illness. Now I have a written plan and I am checking off objectives one by one. If one thing doesn't work, I have the will to try another. Whether it is traditional medicine, alternative medicine or a combination doesn't matter. It's my freedom to choose; I can't dictate what is right for someone else. When I hear about a woman who got better by having her fillings replaced or cleansing or some supplement we never heard of, more power to her (or him). Who am I to say that for that person, s/he shouldn't have tried it? We're all in this together. I learn a ton of information from this website--I know so much now about treatment options and pitfalls that my uro hates me. But I'm still looking elsewhere for non-traditional treatments, too. Don't take away my hope.

[ICyuck]

Yorkigirl, well said.

I remember when many urologists sniffed at the idea of a natural supplement like Quercetin (Cysta-Q) helping IC patients - even though it was a urologist who actually discovered that it helped his patients! All because it was "natural" and not something pushed by the drug companies.

I'm not rushing out to try all the alternative therapies out there, either - but I'm keeping an open mind and if someone says this or that helped them, I believe them.

Love, ICY

[yorkiegirl]

Thank you, Y, for your thoughtful remarks. I appreciated them very much!

[purpleviolet]

I really am interested in alternative therapies because tradiitional hasn't helped me, but I haven't tried Elmiron because I'm afraid I'll lose the rest of my thin hair if I do. So far cystoprotek and aloe vera, chinese herbs and acupuncture haven't done much either. But I think there must be something natural which will help me. I think different things work for different people, our IC's are different. I went to a quack Chiropractor who one IC person swore by, but he tried to push my arm down while a bag of supposed mercury was on my belly and he claimed I had mercury poisoning. I could see his charisma helping some gullable people but all he wanted to do was sell me animal enzymes or something and chlorella and I was mad. I challanged him to prove what he was doing and he couldn't.
I posted on this web site before that I am taking D-******* and it was starred out. I really would like to know why because I would like to know if other people have had success in keeping away infections with it. After all, many alternative therapy doctors are discovering that this sugar which is in cranberries and blueberries is slippery to e-coli which causes most bladder infections. So far I have not had another infection. I cannot afford to get another one and I see no other natural treatments that claim to do this so those of us who are prone to infections which hurt like hell when we have IC need to help each other find what works and what doesn't, so it should not be starred out. It is quite harmless compared to preventative antibiotics. My mother takes it too.
If anybody knows that it's bad and can say why, speak up with real reasons please. Susan

[rnewman]

Yorkie Girl, and ICY, wonderful posts!!

Susan!! I would love to know what the D *** is!
I cant tell you what I know about it unless I know what it is, and since I believe that IC is a syndrome with a constellation of causes/eitologies, and infection is quite possibly one of them, I am very interested in your current mode of treatment.

As far as "alternative" medicine, I have tried alot. I too, like someone else mentioned, tend to be a failure of western medicine when it comes to IC. I tried antihistamines, and they left me too groggy and unrested. I can not try elavil just yet because I can not be groggy or out of it at work, and I tend to have a sensative body to medications. (A slow metabolizer, my doctor calls it.) I am not, however, as sensative to most natural products that arent synthesized. AND....as someone else mentioned....I am NOT about to try elmiron and risk my (already!) thin hair! (WHICH, I might add, I believe has to do with IC.....other ICers have mentioned it as well.)

As far as "alternative" medicine (I prefer the term natural medicine.) I have tried accupucnture, chinese herbs, regular herbs, marshmallow root infusions, glucosamine, quercetin....the list goes on and on. I was considering colon cleansing because I am often constipated, but as of right now I have that problem under control. I am interested in trying that, if the time comes, as well as cranio~sacral massage. I have a midwife friend who SWEARS by cranial sacral massage so much, she just picked up and left the northeast to go to school for it!

Right now, well I have been slacking on my supplements and havnet taken anything in awhile, but I am on my glucosamine/MSM regimen. I am also on antibiotics for a bad tonsillitis I picked up at work.....yeck!! So I am on probiotics as well. This regimen for me is a good one.....the toughest part is getting the mercury out. That requires a HUGE regimen of supplements, including chorella that someone mentioned.... and while it will be good to get the mercury out, I experiance an exacerbation of symptoms WHILE its coming out (because the supplements are pulling the mercury out my tissues and into my blood before it is excreted.)It is excreted through the kidneys and bladder, so my doctor (Yes, I found an MD who prefers natural remedies, he's wonderful.) believes my IC will be better when its all out. But that could take awhile.

I believe that ALL types of medicine have their place in society. If you get in an accident, you want the best trauma ER you can find. If you've got an ongoing problem, you want an ongoing, tolerable livable solution. Sometimes, I beleive that is best found naturally.

Thanks for this thread guys, Im enjoying it. Susan, WHAT are you taking?!?!
Big hugs,
Off to see my doctor wink
Rachel

[mayray518]

There are people out there who want to take our money because we are desperate but also those who genuinely think their product may help us. Either way, at $50=$100 a month, if the product does not work it is frustrating to be out that much money. Believe me, I tried everything and anything when I was in pain. But most of us are on disability because of IC and paying that much for a product that doesnt work is a hardship.

[icnmgrjill]

You know... this is an excellent discussion... and it's actually a very old issue that I faced back when I first started the ICN. For those of you who don't know, my first degree is in Pharmacology. So, I tend to approach medications with a cautious background.... especially since I am liable for what is on our website. Right? So, my approach is always to be CAUTIOUS and to not include information that has not been verified by some reputable source. So, up until three years ago, I didn't have information on alternatives on the site because there was virtually no company who had invested their money to test their products with bladder conditions.

But, and I will say but, I was absolutely stunned at the hate mail I received when we first started the ICN Boards. Why? Because I had atleast a dozen patients all say "my way is the right way?" One said that magnets cured him.. yeah but he later confessed that he was selling them and didn't have IC. Another said that colloidal silver helped, but later said it didn't. Still another said that antibiotics cured her, but then confessed that she had taken antibiotics every day. Still others thought that herbs were the way to go or vitamins. Usually, many of these were sales people pretending to be patients who were visiting our boards to generate sales. Arrrghh! We caught them... and that's why Donna and I are so vigilante about product testimonials in the boards, especially by newly registered members.

The incident which just BLEW me away.. and infuriated me completely was when a publishing company representative came to our site, masquered as a patient, and said "I've just read this book. It changed my IC permanently. You've got to read it." But, the book hadn't even been released. With some detective work, and email/IP verification, we discovered that the post came from the company. We banned the account. They logged on the next day, created a new patient name, said the same thing. We banned it again. They logged on the third day, created a third account, and then accused me of censoring "patient" posts. Their stupidity came when they used their company email addresses. I mean, sheeshhhh!!

Now, with respective to alternatives, I think it's important to remember that even those patients who have written books are not experts. The only patient written book that I consider superb is Bev Laumann's Taste of the Good Life. It's so well researched that it stands on it's own. The same is true for websites. There are a few other IC websites out there run by patients... and I know the one you're talking about. I personally had to ban some of those users years ago for violating our guidelines. The reality is that a patient does NOT have the medical expertise to give advice and some of those "alternative" advocates were doing that. It scared me.. and, again, because I carry the liability for this web site, I chose to be safe.

D-M a n n o s e has been shown to be slightly effective in reducing the ability of ecoli to cling to the bladder wall. So, if you have a history of ecoli infections and would like to prevent that, then it could be a good alternative for you. But, it has absolutely no bearing or effectiveness on interstitial cystitis ... and I, personally, have filed FDA complaints about those marketing it as a "preventative" for IC. This is why it's xxxx out on our website.

Mercury poisoning is a serious health crisis, and the great majority of problems stem from eating sea food, particularly tuna, halibut, swordfish, etc. etc. Do mercury amalgam fillings play a role in IC? I don't think so .. because we have patients diagnosed with IC who have had no filling in their mouths. Yes, if you can afford to have them removed, it will certainly make your teeth look better. But, there's no substantive evidence that it makes a difference and, worse, if you read the quackwatch website you'll discover that the mercury amalgam "scare" was first initiated by a dentist who was simply trying to drum up business. He lost his license because of this.

I think that chinese herbs are the scariest because you don't know what's in the herbs.. and many herbalists don't understand the difference between cystitis and interstitial cystitis. As soon as you say "bladder" ... untrained herbalists will think UTI... and, of course, UTI reducing products like cranberry. But, IC is an injury and those herbs appropriate for a UTI can actually be very irritating to our sensitive IC bladders. But, if you've tried a specific formula that you think has helped you, please share that with me by email. I'd like to know more.

Colon cleansing is, in my opinion, pretty goofy at times. I don't think that I'd ever personally pay for a colonic. Dr. Dean Edell just did an expose of colon cleansing and, if I remember correctly, they found that colon cleansing has the potential of being harmful if overdone.

Sooo.... to each his own. When an IC patient has limited funds (as most of us do), I think it is wisest to try those things that have been TESTED and RESEARCHED with IC patients first... before trying something that someone mentioned. And, of course, safety is key. If they can't tell you what's in the product, I sure as hell wouldn't try it.

BTW... Only a very tiny percentage of patients have hair loss with elmiron and it does reverse when the therapy is stopped. You can read Dr. Parson's lecture transcript for more info on that.

Jill :)

[sleepyangel30]

yeah i know what you mean jill, i believe ic can be managed but not cured. some people think they're cured when they become symtom free after changing they're diets. there is someone I know with IC she changed her diet and she is now symtom free. she said she wont go back eatting the junk she was eatten before the diet because she want to keep her ic at bay. at least she is being honest.

[creatingkarma]

I just wanted to add that at the time I was diagnosed with IC I did not have any fillings. My 1st filling ever was 2 years after my diagnosis. So I definitely do not buy into mercury toxicity causing IC.

[sleepyangel30]

i dont believe mercury toxicity causing ic either. if that was the case everyone with fillings would have ic.

[heiwalove]

i think alternative medicine is an incredibly important tool in the management of chronic diseases. illnesses such as IC, IBS, IBD, endo, fibromyalgia, etc, are under-researched and often misunderstood by well-meaning western doctors. western medicine tends to value giving you a pill to 'cover up' your symptoms, which sometimes doesn't work so well when it comes to chronic illnesses; the root of the problem must be addressed. this is just my personal opinion, but i think that chinese medicine is invaluable in treating and managing chronic diseases like IC. of course, not all chinese medicine practitioners are the same, not all are equally effective or knowledgable about chronic bladder conditions (the same goes for western doctors, obviously), but chinese medicine as a practice has thousands of years of history and knowledge behind it. just because some big-name pharmaceutical company isn't making millions of dollars advertising and selling the product, doesn't mean it's any less effective.

just my two cents.

~heather