This is topic General question about supplements... in forum Medical Questions at LymeNet Flash.


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Posted by sparkle7 (Member # 10397) on :
 
I've taken probably 10s of thousands of dollars worth of supplements over the last 10 years.

I sometimes wonder how effective they are. Many of them have been studied but we really don't know exactly what we are taking.

I heard an interview with someone from the Linus Pauling Institute & he said that we really don't know what long term use of high or mega doses of vitamins will do to the body. (Pauling was the guy wh discovered vitamin C - I think it was back in the 1920's). They are not a drug company sponsored group.

My feeling is that if we take one of these supplements & it doesn't seem to change the way we feel... that it's not working. How do we know if something like a probiotic, chlorella, vit B12, etc. is really working?

I've taken supplements for most of my life... when I think of it, I really don't know if any of these things actually are working. There are some that are pretty obvious but others are subtle. Are they really worth $20, $30, $50 and up a bottle?

If so, which ones really helped you & made an obvious difference?
 
Posted by pepper8 (Member # 13660) on :
 
I wonder about this too. I've heard of various supplements I could take to help the Lyme, but there are so many I don't really know where to start. I always take probiotics (acidophilus & in yogurt) while on antibiotics because that definitely helps. I take echinachea whenever I feel a cold coming on, or when someone in my family is sick and I'm pretty sure that helps my immune system. I take fish oil because there are so many benefits of Omega-3s, though I can't say I notice any change when I take them. I've heard that cat's claw helps with Lyme, but I haven't taken it. I'm on Mepron & Zithromax right now and my Dr. said to take milk thussle (though I forget the reasoning haha)
 
Posted by chamade (Member # 11472) on :
 
If you have a specific concern you are trying to address then i think it makes sense to take well researched supplements that are proven to help with that particular issue.
My main problem is neuropathic pain so I take ALA, NAC, L-Carnitine, B1, B12, B6, Magnesium, high doses of Omega-3 oils and recently added SAM-e and CoQ10 for a trial, in addition to a high quality multivitamin.
Those supplements are proven to help with nerve damage so it makes sense for me to take them.

I am more skeptic about stuff like the Nutramedix herbs, certain "magic" fruit juices etc. as there's next to no research whatsoever to back their claims. Waste of money unless it's well researched and proven to work, IMO.
 
Posted by sparkle7 (Member # 10397) on :
 
pepper8 - milk thistle is for usually for liver function

chamade - If you stop using some of the supplements, do you feel different?

I'm not trying to be antagonistic to anyone - so, please don't take my questions in the wrong way. It's just that I wonder about all of this... Even if you have a study about something - it may differ from brand to brand.

I just would like to see if there is any consensus about supplements.

I think there was a brief study about the Nutramedix herbs & Lyme. There are some individual studies, too - like Samento. I'd have to look for them.

I can also see why people would use probiotics while on abx... It's just hard to tell if they are actually alive & potent.
 
Posted by herxuk (Member # 15873) on :
 
Sparkle
Linus Pauling, didn't discover Vit C, he used megadoses,
10 g a day to see if it was a cancer cure, he claimed it could cure a common cold.

Vit C was discovered a long time before that, when sailor's went to sea, and got scurvy. When taken lymes on ship, they didn't get it, I think they got nicknamed Lymies, after that.

Yet I have a book that say's, megadoses of this vitamin can interfere with the with white blood cell's ability to kill bacteria.

From my reading, it seems there comes to a point were, large or megadoses of Vits are no longer a vitamin, but act more like a drug, and can give you what you took them for in the first place.

Like large doses of vit C can give you scurvy, if you come of too quickly, so lower slowly.

I tend to feel moderation in these, little and often, as of course they are essential to the body.
 
Posted by TerryK (Member # 8552) on :
 
Well Sparkle, I contracted lyme at 5 yrs old and I'm over 50. I've used herbs and supplements for 24 years, almost 1/2 of my life. I don't know how I would have gone on without them.

Others in my family who have the same thing that I have but don't use herbs are much sicker than I am.

When I first started using supplements I didn't get much relief. I really started to notice a change when I went to an herbalist who practices muscle testing.

I've been on heavy abx for 2+ years and for the first 1 1/2 years I was very sick. I can't imagine that I would have been able to tolerate abx without the help of many supplements. In fact, when I was a child, abx were withdrawn because they made me so sick.

I can tell that the supplements that I take are working because they help control my symptoms daily. I adjust them via muscle testing as needed.

That said, I give a list of all of my supplements to my LLMD and I follow his instructions. If he tells me to stay off of something, I stay off. Sometimes he tells me to add things and I do that too.

They are a blessing in the right hands but like everything that has an effect on our bodies, we must use them with caution.

Terry
 
Posted by mookiewill (Member # 14743) on :
 
Please don't take Milk Thistle with Mepron.
You'd be wasting that very expensive yellow paint.

Milk Thistle is great for your liver.
Its really good at taking stuff out, including Mepron.
 
Posted by nwisser (Member # 15682) on :
 
I can definitely say that if I stop taking B6, even for a couple of days, I start to feel terrible. And I would say that taking acetyl-L-carnitine with alpha lipoic acid helps a lot with the brain fog. Also, when I got my son to start taking B complex, he definitely became less grouchy after a week or so.

I take more, but would never want to do without those.
 
Posted by Tracy9 (Member # 7521) on :
 
Thanks for the thought provoking post, Sparkle. I have often pondered the same question.

I swallow over 50 pills a day which are supplements. It seems no matter how many I add, there seem to be a zillion more everyone is touting that aren't on my list.

A few months ago I was so sick I didn't take my supplements for over a month. I was just too sick to measure them out and set up the pill holders.

I noticed no difference whatsoever. I have now been steadily back on them for a couple months, and still see no difference whatsoever.

I have lots of ups and downs, but they do not correlate at all with my supplement usage. They do correlate more with abx changes, and overdoing it.

So I personally think you raise a very good question. When I run out of the supplements I am taking, probably won't buy more of most of them.
 
Posted by sparkle7 (Member # 10397) on :
 
I don't think they are bad... I just don't know if they work. Some are very obvious. When I took a grapefruit seed extract combo - I really felt it. But others like an expensive medicinal mushroom combo didn't seem to do much.

Thanks for the info about vit. C! I think Pualing won a Nobel prize for his work with vitamins but I could be wrong. I was very suprised when I heard the interview with someone from the institute saying that there aren't alot of studies about the long term effects of mega doses, given what you said, HerxUK.

I just wanted to hear about which ones really help as opposed to being just pills you pop for some reason. I've been taking supplements for a long time & I'm just beginning to wonder about it all.

Some things may be really helpful but we may not actually feel it. It's just hard to tell without actual before & after testing. It's kind of hard to feel that you are low on growth hormone or that your fibrinogen is too sticky...
 
Posted by herxuk (Member # 15873) on :
 
Sparkle.

Yes your right, my book say's, twice Nobel Prize winner, but it doesn't say what for, as his cancer ideas, didn't seem to come to much.

You mentioned Grape seed extract, OK, I know it's not a vitamin. But some years ago ( before the bite ) I started taking some, within 2 wks my hair started coming out, as I was taking nothing different at the time I suspected the GS extract.

Please believe me, It got so thin I didn't need a comb. My crowning glory took many months to recover.

I tried again after recovery, the same thing happened.

I decided If my hair didn't like it, then it could be that my body didn't like it.

Twice is enough to look such a sorry site. It does make laugh now, but these herbal type things I'm very wary of now.
[shake]
 
Posted by sunshinyday (Member # 14337) on :
 
If you don't get muscle tested, the herb or supplement may not be the right one for you and you could be waisting your money.

I have used herbs and supplements for years. Just like there are different antibiotics for the same problem, there are different herbs and supplements. Muscle testing sorts it out and helps you get a grip on not only what you need, but how much you need.

Also the quality makes all the difference in the world. If you buy them at CVS, or the like, you probably are wasting your money. You need to get quality products.

You should see a good ND or herbalist or kinesiologist to make sure you get the right products.
 
Posted by lymeHerx001 (Member # 6215) on :
 
I think Pualing was an engeneer and invented some type of engine. Thats why he won the nobel prize.

The C thing was just an interest.
 
Posted by Lauralyme (Member # 15021) on :
 
This post is well timed with my recent experience. After four weeks of unrelenting vertigo that wasn't going away on it's own.

I took apple pectin and chlorella and had a very noticeable difference the next day with regards to the vertigo.

Prior to that I was having the same thoughts as Sparkle wondering if these supplements were doing anything. I definetly got confirmation that at least the apple pectin/chlorella gave positive results.
 
Posted by NanaDubo (Member # 14794) on :
 
I'm really glad you brought this up Sparkle. I am sitting here looking at the area of my kitchen counter that is taken up with supplements and tinctures.

I have absolutely no idea if they are doing anything for me. I have googled and googled and cannot find an ART practitioner anywhere near me or a kinesiologist.

It's so confusing, every time I read about someone having good results with something, I want to add that to the mix.

I had a guest this week whose mouth fell open when he saw all the stuff I'm taking.


[confused]
 
Posted by sparkle7 (Member # 10397) on :
 
I wish I could go to an ART practicioner... I just don't have the money right now. I am also interested in trying ASYRA. I may get a chance to do that but I have to get alittle more info, first.

About Linus Pauling - http://en.wikipedia.org/wiki/Linus_Pauling

I have been using a simple pendulum for years. Maybe this is helpful to determine which supplements to use?

I think this may be a helpful direction to find out if something is going to be useful to the individual. I don't think "one size fits all" can be applied to using supplements, herbs.

Here's the radio show I heard with the interview -

The Brian Lehrer Show
Vitamin Statistics
Tuesday, March 13, 2007

Vitamins are always good for you, right? Well, the recent women's heart study findings indicate vitamin supplements are irrelevant to cardiac care, while other studies find too much of certain vitamins can pose a health risk. Hear two views on whether it's worth buying vitamin pills.

http://www.wnyc.org/shows/bl/episodes/2007/03/13

I think there are some very good products out there. It's just hard to tell if a cheap ascorbate vitamin C is just as good as an expensive "time released" vitamin C. The same is true for all of the supplements, herbs, etc.

If the study isn't done for the precise product... it doesn't mean all are the same & will give the same result. Some good quality products may be just as good as cheap ones & some cheap products may be trash.

Some tinctures may be more potent than another depending where the herbs are grown & how they are processed. There's alot of variables. One chlorella may have traces of mercury & another doesn't... We don't really know.

Some products may pay off labs to find results they are looking for. The drug companies may pay labs to discredit some herb, supplement... Statistics can be made to "lie" or represent findings in varying directions.

herxuk - sorry about the grapefruit seed extract! Some people can have allergies or bad reactions to almost anything. I knew someone who could die if they ate a walnut.
 
Posted by pamoisondelune (Member # 11846) on :
 
I read on www.relentlessimprovement.com that many EGCG pills contain traces of chloroform used in the extraction process. By the way, this company is selling its competing brand of EGCG which it claims to be chloroform-free.

Naturally i'm sickened at the thought. I've been taking Source Naturals EGCG pills for (? number of) years. Do they have chloroform (a carcinogen) or not?

And the magnesium stearate that someone said in a post causes impenetrable biofilms....

I'm trying to switch to teas or bulk herbs, because of disgust at the fillers and unknown hazards.

I started Pau d'arco tea or decoction; makes me feel a lot better, whereas the pills which i took for a year, didn't have so much effect, if any.

---pamois.
 


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