I'm still confused as to whether supplements are safe

[lm2]

I don't mean for IC, but just in general. I'm still not feeling so good, and my last culture was clear, so it's not low levels of bacteria (at least not the kind those tests find anyway), so right now I'm sort of at a loss. I'm seeing an infectious disease doctor soon to discuss the bacterial problems I've been having, but I don't know what they'll realistically be able to do.

So in the meantime, I feel like I should maybe be adding to what I'm doing for my IC, possibly with supplements. But I'm so confused as to what to believe regarding their safety. I looked into this issue a bit last year and read about the law in 1994 that basically removed the FDA's jurisdiction to regulate it, so it's basically up to the manufacturer to ensure they're doing everything OK. I read some real horror stories about it, like about the lack of effort companies are putting into this, but it's hard to know what to believe when it comes to the internet. But some things you can't argue with...like the Tryptophan disaster and all the people who got sick from that. I know that prescription meds have risks too, but the idea that this is totally unregulated freaks me out. I often hear about them randomly testing supplement products and finding huge variation in the amount of active product they contain, or other ingredients not listed on the bottle, or even contaminants, etc. etc.

So is taking this stuff worth the risk? I have this concoction my naturopath gave me which I've been too afraid to try, and I'd also like to start taking the Aloe Vera pills again, and maybe Glucosamine, things like that. I don't know what to think. I've had really bad luck with things that are a one in a million chance happening to me, so it's made me paranoid. Just curious what others think about this issue.

[ICNDonna]

If you're concerned about nutrition, my suggestion would be to talk with a nutritionist. The other supplements I suggest you discuss with your physician.

Donna

[lm2]

Donna, I'm not talking about nutrition but rather things like herbal medicine to try to help my IC. Supposedly as long as they are called "supplements" and they don't make any health claims, the FDA can't regulate them, so I guess that's why I called them that.

I did ask my family doctor if he thought it was safe to take them and he said yes, but then I explained more about how I was concerned about them not being regulated, etc. and he was just like "Oh yeah, yeah, that's true..I understand". So he didn't really give me an answer.

[lm2]

Was I not supposed to ask this here? I just thought it's the kind of thing for which there is no clear cut answer, so even if my doctor had said "it's fine", I was just curious if others here who are trying "alternative" medicines have considered this issue and if so, what conclusion they came to about it.

[ICNDonna]

It's fine to discuss it here. The only thing that isn't allowed is posting sites that advertise.

If you're taking any medications, you could ask your pharmacist if there's anything in a specific herbal remedy that might interact with your meds.

Donna

[vm]

Betsie posted a helpful website on this issue somewhere. You might ask her, although she is very busy right now. Maybe do a search on this board to find it?

I am like you. I am very paranoid about alternative treatments like herbs, etc. I haven't needed to try any, but if I did I am sure I would be doing lots of research.

rnewman seems to know quite a bit about various herbal remedies and nutritional supplements. You might pick her brain to see what she has found. :)

[rnewman]

lm2,

This is a huge and heated debate, and when getting your information in public places, I think that you need to take note of the source.

Supplements are just as safe as FDA approved drugs. They are just as safe as some of the foods that we buy. Now, as an ICer, you know that some of those foods that others eat maybe even daily cause us incredible pain. No one can tell you that when you put that supplement in your mouth, nothing negative will happen-- but likewise, no one can tell you that the drug your doctor prescribes wont have any negative effects either. And, to top that off, the number of FDA drugs that have been created, poorly tested, released to the public and then recalled or pulled alltogether is higher than we might imagine. Its a gamble.

A large percentage of drugs that are out these days origionated from plants. Merck and company years ago studied chinese red yeast rice and found that it lowered cholesterol and had been for years in eastern herbal medicine. They found the exact compound that caused that lowering of cholesterol-- mevicin-- and synthesized it, and poof, the first lipid lowering medication was born- Mevacor.

In the same way, Valerenic acid was an ingrediant in a root used by native americans to calm anxiety. After it was discovered valium was born of valarian root.

I will say that you do have to get your supplements from a company you trust, and you do have to beware of hype. But I do have brands I trust, and I read my labels carefully. I tend to by supplements or herbs individually, rather than mixed formulas, so I can control exactly what Im taking. I am also lucky and happen to have a general practice MD who is very knowledgable about supplements and "neutraceuticals." If you are interested in taking them, I do suggest you talk to your doctor and get him on board with the idea- even if he cant advise you about herbs, if he is against the idea or doesnt know that could cause trouble if he needs to prescribe you something. I will say that I do treat my supplements like drugs- I know the side effects and any dangerous implications of the things that I take. I also want to add to that that I am a sucker for side effects...just about every medication that I have tried I have had a side effect experiance. I do not have that experiance with supplements or herbs, there have been one or two my IC cant tolerate, but I havent had as many "other" side effects as I have from different meds.

So while I believe supplements themselves are 'safe', they must be taken safely. In this situation knowledge is power. LexiComp is a company that publishes drug books that many major medical institutions use. They recently put out a Natural Therapeutics Guide. I have one that I use for myself and in my practice. It has technical peices but it also has patient leaflets which are easier to understand if the regular guide is difficult.....although I believe it is written in a way thats pretty easy to understand. And keep in mind what I said about your source of information-- the FDA has no interest in regulating supplements because of the task it entails. There are hundreds of companies, many of them overseas. To put them all to the same standards as the drug companies would cost the FDA money to be able to process all of that-- so they cant endorce it. And, from the other side of things, if something claims to cure every ailment, I would think again, and go with companies that are tried, true, well known, scientifically backed......etc etc. You will find some that you prefer.

I hope this helps a bit. I wish you luck.
Big hugs, kissing
Happy New year!
Rachel

[rnewman]

I also wanted to add-- there are many different subtopics in the broad term of "supplements."

Supplements are usually considered other neutraceuticals-- elements or trace minerals that we need-- but usually when used as the term supplement they are taken for a certain cause, not just as a vitamin. Some examples would be glucosamine, CoQ10, SAMe, Alpha Lipoic Acid, MSM......etc

Vitamins are the usual - A, B, C, D, E, K....etc.

Minerals are the minerals-- calcium, magnesium, zinc, iron, selenium, maganses

Herbs are just that-- herbs. Oregano, Basil, St. Johns wort, ginko, ginseng- herbs. They come in pills, teas, extracts.

There are also glandular extracts-- those are from animals and I am much more careful with those. Usually pills. Tryptophan, when people got sick, would have fallen in this catagory as the pills were from an animal. Now, it is sold as 5HTP, which is an extract from a legume called the griffonia bean.

Homeopathy is another type of traditional healing.

I tend to stick to Nutritional healing (which is mainly eating to get the right vitamins and help heal) and supplements. I have taken many things for different causes. There are many choices with supplements and herbs, I might even argue more than with regular medication, so as Kim mentioned, knowledge is power.

Personally, I believe every ICer should give glucosamine a shot. It is the direct precursor to glycoseaminoglycans in the body, which is a part of most connective tissue but is also the exact layer, the GAG layer, we are defficient in in our bodies. Glucosamine is so safe that almost every orthopedist I have come across usually tells their joint injury patients to take it- and it is a standard dose for all of us. 1500mg. I will tell you that brands matter- I switched from one glucosamine brand to another, and while it didnt cause me a flair or any issues, I can tell one worked better than the other. Thats just bioavailability, which changes even among any FDA approved medication from generic to generic.

Any more questions, feel free to ask! I will try to answer asap as I havent been on as much lately.

Again, Happy New year to all..
hugs
Rachel

[lm2]

Thanks guys. Kim, I'll try to find the link you mentioned about this issue. Although when I read about it online (I've given some links on it myself before), it sounds really awful and I end up thinking "forget it".

Rachel, thanks so much for typing all that out for me; I really appreciate it. I'm in a fog right now so I can't think but I will probably have more questions for you. I do try to buy from reputable companies, but that only makes me feel a little more comfortable but still not completely. I've read to only buy from companies that have been around a while, but on that basis I shouldn't be taking the aloe vera pills since they're relatively new, which is kind of scary. That's also why I'm scared to take the concoction my naturopath prescribed because the pharmacy just had all these herbs in jars which they put together in a tincture, and I have no idea where they came from or anything.

It just seems crazy that they're allowed to sell things without having to prove they're safe first. I think the rule is it's just ASSUMED they're safe unless the manufacturer shows otherwise, which makes absolutely zero sense to me.

[lm2]

OK, I've spent the past few hours reading about companies and I guess I will stick to those which sound more impressive to me. It's still worrisome though, that even if the product is produced properly, and is pure, contains what it says, etc. etc. there is still always the concerns about the products themselves. Since there is so little research on these products, it's hard to really know about things like drug interactions, possible toxicity or long-term effects, etc. I just don't want to be a guinea pig. frown

[rjyoon]

There are publications which deal with alternative medicine information (similar to the PDR) & potential interactions. I'm not sure how available they are, or whether they'd address your specific areas of interest (probably depends upon what studies have been published). AltMedex is one.

As a disclaimer, I need to say that I work for the company that produces AltMedex, although I don't personally work on it, nor do I know a lot about the details of it.

[rjyoon]

Here are some other publications that might be of interest:

PDR for Nutritional Supplements
Includes vitamins, minerals, sports nutritional products, amino acids, probiotics, metabolites, hormones, enzymes & cartilage products. Covers benefits, side effects, potential interactions with prescription & OTC drugs, food, alcohol & tobacco, as well as appropriate dosages.

PDR for Herbal Medicines
Includes drug/herb interaction guide, safety, efficacy, side effects, indications, dosage information.

As a disclaimer, I need to say that I work for the company that produces these products, although I don't personally work on them, nor do I know a lot about the details.

[lm2]

Thanks rjyoon. Those sound very helpful - would I be able to find them in a bookstore, or do I have to be in the health care field in order to have access to them?

I wanted to share this website I found if anyone is interested...I really like it as it provides a brief, unbiased summary of the important points one should know when considering taking an herbal supplement. I've been using it as a quick reference and it helps to sort through all the biased stuff you read from companies trying to sell their products. Hope it helps someone.

http://www.shoppersdrugmart.ca/english/health_wellness/health_information/herbals_supplements/index.html

[rjyoon]

I'm guessing a bit, but a large bookstore or one with more reference-type books might carry them. Another alternative might be to check the library -- I know I've seen some PDR variants in libraries before. I've also seen such reference books sold in stores which sell supplements & herbs. Hope you can find information to help you.

[dyno]

I am bringing this thread back because I was doing some research and felt it might be helpful for some to read this.

[mayray518]

I took Cysta Q for awhile and I think some of the supplements can help. I never wanted to completely discontinue the elavil so sometimes it is hard to know what is working and what is not. But I think some of the herbal remedies do bring relief to people. I know of one women who had no success with any of the prescribed meds and completely cured herself on the herbal remedies. So whatever works.

[dyno]

I am researching alternatives to try instead of the Elmiron that I can't take anymore, so that is how I found this thread.

[Strawberry]

I've found something that works on my pain and frequency. It's a mega antioxidant with a buffered form of vitamin C. I was in a big flare and two weeks after starting the vitamins I don't even notice my bladder anymore. I went 3 hours without having to go and I slept all night. I know two people with IC that this multi vitamin worked for and it is mentioned in the book Women's Bodies, Women's Wisdom by Dr. Christiane Northrup, look on page 802. It's called the Essentials from Usana. There's always hope! :thumbsup:

[sleepyangel30]

Strawberry, I'm glad you found something that works for you.
:thumbsup: I'm a strong believer in natural healing. My grandma was cherokee & osage indian and she was into natual healing also. She taken herbal medicines to get rid of headaches, worms etc. Pretty soon I'm going to start out on a alkalizing diet first. I just want to get better you know. There is hope.