Probiotics

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I just got home and checked to see if Primal Defense Ultra contained the Lactobacillus salivarius bacteria. This is the Listeria killing probiotic in the article in my previous post . It does have this in it. If you are going to use a probiotic, you may as well get one with this bacteria in it.

http://www.medicalnewstoday.com/medicalnews.php?newsid=4849

No point in leaving this stone unturned. Especially a suspicious possible Crohn's related bacteria.

D Bergy
 
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I was just diagnosed with Crohns (last week)- my sister has ulcerative colitis and told me to order this Primal Defense Ultra- she said it is unbelievable how well it works for her. I started with the Dan Active Drink (Probiotic) two days ago and starting eating the Dan Active yogurt for breakfast- what a difference- my symptoms have lessened enormously!! I feel so much better in two days!!! I am definetly going to stay on this and the Primal Defense Probiotics religiously if it helps me this much!!!
 
I hope it keeps working for you. Many here have good weeks and even years and then the bottom falls out. I really can't tell anything yet, but I have very few symptoms to go on and just started a few days ago.

Please let us know in a few weeks if you are still doing well. I may actually have to go by the experience of others since I may not be able to go by my own symptoms.

Thanks for the feedback.

D Bergy
 
To all of you who tried Primal Defence. What are your experiences?

Also, have you tried Bee Propolis. It's supposed to be a natural antibiotic.
 
Day Three- still feeling better and better- got the Primal Defense in the mail yesterday- gotta keep on these things.....
 
I was on Primal Defense for about a month and saw no results. I'm not sure if it makes a difference, but I was in a flareup at the time.
 
How does it taste? I have been wanting to try it and havn't had enough money to use it until I can get off my med I am taking now. I just can't see why I am taking a medicine that is used to treat cancer.
 
the directions for the pills is to take one a day and work your way up to 3 a day- I too am in a flare up when I started this- it calmed it down!! Day 4 and still feeling better and better.

I got mine at vitacost.com for $52.77 a bottle of 180 capsules
 
i use primal defense as well and it did alot to help me get out of a major flare. it started working with the first pill and by 1 month I had a few cramping problems which was nothing major considering what i had been going through and lactaid took care of the cramps.
 
Had a 100% normal bowel movement. This is one of my few indicators of active disease. Does not mean anything in itself since I do have a normal one from time to time but not often. I am hoping it will continue for a week or more. If it does I will then give credit to the probiotic. It is a good beginning.

My other obvious symptom, that I am not positive if it is a legitimate symptom to begin with is Psoriasis on the shin of my right leg. I got this about a year after my symptoms started. I am assuming it is related somehow since I have never had it before. I am hoping it will go away when the inflammation is gone in my guts. Even if this happens it will likely take a longer time.

I have been taking Primal Defense Ultra. First two days I took one capsule a day and noticed no change. Last two days I have been taking three capsules daily. Have not changed anything else in what I normally take for supplements. But I have been drinking the Lemon Balm Tea also. I have been using this for a couple of weeks, but have noticed no change that I can tell from the tea.

D Bergy
 
Good for you!!! Keep up the good work- Day 5, and I also had a normal BM!!!
Guess my flare up wasn't as bad as most of you- since I am new at this, I probably nipped it in the bud- went to the Dr. as soon as I started having problems-

I am still on one pill a day- but I will increase to 2 tonight.
 
I'm taking Natren probiotics right now and their expensive. I have primal defense just sitting in my cabinet. Figure I'll try primal defense again after I build up my immunity on basic probiotics.
 
Teenie,

I have been thinking about reasons why Primal Defense powder may not have worked for you. It would be useful to eliminate any of these possibilities for yourself and the others here. It may be that it just does not work for you because of some other reason. But I have thought of some reasons that could cause it to fail.

1. The powder form just is not as effective of a delivery method.

2. Using chlorinated municipal water to mix it in may kill the bacteria before it
gets to the intestines.

3. You got old stock or a bad batch which was biologically dead.

Of course, it may just not work for everyone, but we are too early into this to really know much at all. If you can swing it, maybe you could buy a new bottle of the capsules and see what happens.

Best Regards

D Bergy
 
The Carbonic Acid in soda also tends to kill off probiotics. In fact, VSL#3 says not to take it with soda for that very reason.
 
It's not old stock or water. It expires in September 07, and I only drink filtered water. I don't really think it's the powder form either. I believe the powder is the same formula as the capsule. I guess it's possible, that I got a biologically dead batch. I should write them and ask them if it's possible. I keep a food journal, so I do know, my diet was insanely healthy at the time.
 
I just went to the Garden of Life site and it dawned on me, that I was taking Primal Defense, and everyone that replied positively is taking Primal Defense Ultra. Ultra has one more probiotic, a 15 billion live cell count (mine has 610 mg) and is stored in a fresher container. That's a big difference. Is anyone having positive results with the regular Primal Defense?
 
If yours is missing the Lactobacillus salivarius bacteria then that would explain everything since that is the one that kills Listeria monocytogenis. This is the suspect one related to Crohn's disease.

The capsules may allow the powder to get farther down the intestinal tract. It may also make no difference, but since the people getting the results are taking capsules you might as well go with that.

Thanks for mentioning the "Ultra Primal Defense" name. I was not aware they had several versions. I thought it all was the same but apparently not.

D Bergy
 
Quackwatch does not have a whole lot of credibility in my book. I have used other things they list as quack medicine and I know they worked for me.
See www.quackpotwatch.org for an opposing position on them.
I am not familiar with the other site. I guess the "soil organisms" or whatever they are that they put in the probiotic are what is questionable. It appears the founder also has tried to beef up his credentials also.

It seems the biggest issue is the health claims they are making. This is a problem for any supplement that makes any specific claims since they usually do not have drug type studies to prove effectiveness. It does not mean it works or it does not work. It just means they do not have the studies the FDA requires to make the claim. Of course they could be lying through their teeth about it also. I have no way of knowing without trying it.

If there is another probiotic that contains the Lactobacillus salivarius bacteria I am sure it would work, or not work as well. I guess the reason I am trying it is not because of the founder or the claims. I was not even aware of the claims. It is the study that showed that Lactobacillus salivarius kills Listeria and this probiotic happened to have that as an ingredient. Also, because others here had some good results from using it.

If it works, I do not care what the official position is on it. If it does not work then I am not interested in it at all. It is worth trying for me, because I am not out a whole lot if it does not work.

Everyone has a different way of looking at it so I guess you have to do whatever you are comfortable with.

D Bergy
 
Here is an interesting if slightly out of date (December 2005) article from Clinical Microbiology and Infection.

Abstract
In recent years there has been a significant upsurge in research on the characterisation and verification of the potential health benefits associated with the use of probiotics. In addition, the market for probiotics continues to expand exponentially as consumers (mostly healthy individuals) rely on health claims made by manufacturers to make their choices. This review appraises the available evidence for and against the health claims associated with probiotics. The use of probiotics in promoting gastrointestinal health and immunity, and their use in the prevention of urogenital infections, allergies and cancer are reviewed. Furthermore, issues surrounding the use of probiotics in healthy individuals, the safety of probiotics and regulatory concerns are addressed. There is scientific evidence that specific strains of probiotic microorganisms confer health benefits on the host and are safe for human use. However, this evidence cannot be extrapolated to other strains, as these effects are strain-specific. Probiotics have potential health benefits for conditions such as gastrointestinal infections, genitourinary infections, allergies and certain bowel disorders, all of which afflict a considerable proportion of the global population. However, considerable work is still needed to confirm these potential health benefits.

Full article text in html format
http://www.blackwell-synergy.com/ac...ext+HTML&doi=10.1111/j.1469-0691.2005.01228.x
 
From my side, I believe that some natural medicine works. But I wish there are more studies on them, so we can be sure that they are safe and don't produce also any side effects or dangers.

But as there are no such things, we are using ourselves as guina pigs. And since we have a chronic illness we are willing to try many things..... It gets very frustrating sometimes, all the conflicting info you get on many of these supplements :( And as there are many quacks out there just looking for a buck, you don't know who to trust...
In addition all the meds they give us are not specific to Chron's, and have a huge list of side effects, and we have to take them all our lives; now tell me that this doesn't make you crazy... Sometimes I get headaches just thinking about this and I feel like I'm losing my mind. The meds we take poison our bodies, but we are afraid to stop them fearing we'll get worse, quacks are trying to sell us all kinds of supplements and diets out there, and even food is so full of chemicals that we don't know what to eat, even on the rare occasions that we have an appetite.....

Sorry for all this bla bla, but sometimes I feel so helpless with this disease .......
 
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So if it is all boiled down it all seems to come down to probiotics may work or they may not. There is evidence that they may help with some gastrointestinal problems but more studies need to be done to confirm the benefits.

Since they were first promoted as possibly useful for displacing harmful bacteria in the early 1900's I do not think I will wait for the studies. If they have not done them in the last one hundred years who knows if and when they will ever do them. I do not think Merck has it on their short list of "must do" studies.

Many of the medications now used for Crohn's and many other diseases are off label. Meaning they were not developed for the disease, and there were no studies at all prior to prescribing them proving they were effective for the disease. You are in the same boat.

Same goes for statin drugs for women "no studies" depression drugs for children "no studies", the list goes on. These are commonly prescribed with no evidence they will work for the group they are prescribed to. We are often the Guinea Pigs for our prescription medications also.

It certainly does give you a helpless feeling at times. But, the more you know and learn the better your odds are of getting better.

D Bergy
 
Are the probiotics prescription? No. I do not think there is such a thing. But I could be wrong.

D Bergy
 
Do you get them at like Walgreens, GNC..Etc. I've just never seen them. But I wasn't looking for them either. are they expensive?
 
I agree with the general direction of the thread -- it is frustrating to wade through products looking for what works and what doesn't and everyone's bodies must respond differently. Me, my husband, and my mom have gotten tons of improvements with various things with mangosteen juice but some other people who have tried it haven't. Some call that a hoax. I have gotten even more results with the mannatech my husband brought home from the flight doctor. That is being called a hoax. It does nothing for my husband. He found some stuff months ago from a company called nativeremedies. Makes him feel great, makes me throw up. I get additional results if I take Emergen-C. Everyone else thinks it's just for colds. It's got to be individual. One is looking for a kind of synergism of products and it's just got to be based on individual body chemistry. Grrrr!

I do, say, though, once you find a combination that makes you feel good, stable, improved, etc., stick with it!
 
Mangosteen juice isn't a 'hoax'. It is just overhyped, overtouted and hugely overpriced.
http://chetday.com/mangosteen.htm
In my opinion, what we have here is simply an overpriced fruit drink. Fruit drinks are often healthful beverages. But the only reason I can see that the promoters of mangosteen can get away with charging $37 for this product is that they are playing on patients' hopes and fears in a cynical way. Without the health claims, open or implied, the product could only be sold for at most $5 or $6 (which, for example, is the cost of antioxidant-rich pomegranate juice).

The mangosteen phenomenon is a reprise of the aloe vera, gingko biloba, and especially the noni juice story, complete with exaggerated claims for the health benefits of an exotic fruit. It should come as no surprise that both the President and the Chief Financial Officer of Xango once worked for Morinda (now called Tahitian Noni International).
 
Mazen said:
Has anyone tried the VSL #3 probiotic? They say it's clinically proven to help UC, but do you think it helps Crohn's also?

http://www.vsl3.com/VSL3/default.asp
Click to expand...

There was a small study in the use of this product in maintaining remission in Crohn's patients that had promising results. I have found several citations but I can't find the original study.
Here is one article that cites the study
http://www.treatment-options.com/article.cfm?PubID=GA06-4-1-02&Type=Article&KeyWords=
and the citiation itself
Campieri M, et al.: Combination of antibiotic and probiotic treatment is efficacious in prophylaxis of post-operative recurrent of Crohn's disease: a randomised controlled study versus mesalazine. Gastroenterology 2000, 118:A781.
 
It does contain the Lactobacillus salivarius bacteria. It may be worth a try.
Not as much controversy about this product as the Primal Defense.

In all treatments it seems the results vary a lot between individuals so trying it out is about the only option.

I hope you can find that original study. I would be very interested in the actual methods and results.

I will scrounge for it later if I get some time.

D Bergy
 
Here is a link to Dr. Mercola's web-site where he discusses probiotics and what he has learned over the years. It is a U-tube video.

http://www.mercola.com/products/complete-probiotics

For those that are not familiar with him, he is a advocate of natural medicines, and avoiding Pharmaceuticals when possible. I do not necessarily endorse or even believe what he has to say, but he does quite often have interesting things to consider. You may have to register but I am not sure. It costs nothing and to get his newsletter and it is one of the more useful newsletters I get. Most I drop after a short while but I always read his.

He also sells probiotics so take that into consideration as well.

D Bergy
 
Once again, I get boo'd and hissed for mangosteen. Well, it's kept me stable for a year on no traditional meds and it got my husband off of thyroid and anxiety meds. No other changes were instituted, thus that must be it. Think what you will about price and marketing (which is the part I actually hate) but if it works for me, then I will use it until it doesn't work for me.

I took VSL#3 when I first was diagnosed. It's pretty expensive, but it is pretty powerful. It is probably the strongest and most complete probiotic out there. They now have capsules which are more helpful because you can take a lesser amount. I am not exactly sure you need THAT many a day. I contemplated taking packets and dividing them in thirds which makes them more cost effective because I liked the 8 strains of probiotic blended and others don't seem to have it. I DID like the product.
 
If it works for you than that is all that counts. Anything sold though multilevel marketing is going to be overpriced. The business model requires a high profit margin. Someone will start selling it as any other juice eventually. I am surprised it has not happened yet.

I drink Pomegranate/ Cherry juice that is at my grocery store. I do not think it is directly doing anything for Crohn's, but I like the taste and it has no added sugar of any kind. It is just a generally healthful thing to drink. Cherries are a natural anti-inflammatory agent so that can't hurt either.

D Bergy
 
Cara Fusinato said:
Once again, I get boo'd and hissed for mangosteen. Well, it's kept me stable for a year on no traditional meds and it got my husband off of thyroid and anxiety meds. No other changes were instituted, thus that must be it. Think what you will about price and marketing (which is the part I actually hate) but if it works for me, then I will use it until it doesn't work for me.
Click to expand...

I posted an article that is skeptical about health claims that have been made about a brand of pricey fruit juice. Why are you portraying this as an attack on you?

Just because A came before B does not mean that A neccessarily caused B. Maybe it did and maybe not.
Post Hoc fallacy
http://www.nizkor.org/features/fallacies/post-hoc.html
"The Post Hoc fallacy derives its name from the Latin phrase "Post hoc, ergo propter hoc." This has been traditionally interpreted as "After this, therefore because of this." This fallacy is committed when it is concluded that one event causes another simply because the proposed cause occurred before the proposed effect. More formally, the fallacy involves concluding that A causes or caused B because A occurs before B and there is not sufficient evidence to actually warrant such a claim."

It's your money. Spend it on whatever suits you.

I am skeptical about claims made for this product and dubious about its price and how it is marketed. I expressed that skepticism and I will continue to do so until I see what I consider convincing evidence to support those claims.
 
No -- don't see it as a personal attack, just that there might actually be something to the product.

I hate the multi-level marketing and don't even participate in it. I sure wish the price was $4 a bottle, but I also understand that it isn't a fruit grown as simply as cherries or oranges or whatever. However, just because they made it multi-level marketing doesn't mean it is necessarily bogus. I have found tremedous health support as have my husband, my mom, and a whole bunch of people I have personally met.

What's the difference? Some company running multilevel marketing makes a profit. So does the drug industry for all the meds most of us are on. At least I am doing something healthful that is working. As long as the product is good, and within reason, it's fine by me. I have exactly one person under me -- my mom so I wouldn't have to order for her all the time. I choose not to play the pyramid game, but the product has supported me so well that I choose to continue it.

It's become a joke to me that if I mention mangosteen, members of this board MUST chime in against it. However, the same members are supporting Garden of Life or VSL#3 who are also expensive supplements with little real research behind them. Just because it's a juice and not a capsule or powder, doesn't make it a joke. There are many healthful things on this Earth that we don't know about or understand.

I take no offense, because I am doing well. It's just funny to drop the word and watch the hackles raise.
 
I've been having mangosteen and bio-k (acidophilus + lcasei) daily and there is no doubt an unbelievable improvement in my symptoms. i don't if its just one of these that are helping me or both, but somethings definetely working.
 
I am glad you both are getting such good results. It is hard to find the right combination since it seems to vary between people so much.

My psoriasis is disappearing now, but I am not sure why. It started healing before I took the probiotics, but after I started drinking the Balm Leaf tea.

I find it hard to believe it is the tea. It may be just sunshine since I have been wearing shorts and exposing it to sun. It may be that my active Crohn's is now inactive. Bottom line, I have no clue.

The studies on probiotics seem to indicate they work best to prevent a flare and is not good at getting rid of one. For that reason I am going to keep using them. I am going to try some other types after I have used this up. I really cannot say that I am getting a lot of results from it so far. The biggest difference is no more nasty stool smell. My stool varies but no diarrhea. Not a big enough difference to tell anything.

It is never easy, but I guess it would have been cured by now if it was.

D Bergy
 
Cara Fusinato said:
However, just because they made it multi-level marketing doesn't mean it is necessarily bogus.

It's become a joke to me that if I mention mangosteen, members of this board MUST chime in against it. However, the same members are supporting Garden of Life or VSL#3 who are also expensive supplements with little real research behind them. Just because it's a juice and not a capsule or powder, doesn't make it a joke. There are many healthful things on this Earth that we don't know about or understand.

I take no offense, because I am doing well. It's just funny to drop the word and watch the hackles raise.
Click to expand...

There is also the unsupported health claims and the dishonest misrepresentation of research results.

I saw this product being suggested enthusiastically many times on this forum. I looked into what claims were being made and what research exists to support those claims. Based on that, I posted a less enthusiastic, more skeptical viewpoint. Once. In this thread.

Garden of Life also made a number of products for which they made unsupported health claims. I view their products in much the same way.

There is good, in-vitro clinical evidence that probiotics can have a beneficial therapeutic effect. There is some in-vitro evidence for the specific product you mention. It was only a small study and the evidence is only preliminary which I said before and am saying again here.

My hackles aren't up but I am starting to ge a bit tired.
 
After reading all the books I can about Crohn's and diet, It's obvious what Jordan Rubin (the maker's diet) did. He just used SCD as basis, and added the notions of Omega 3 Omega 6 balance and eating organic food, which are very well known theories.... So is he a fraud, who knows... But all the fake degrees just show that he is a smart guy that presented known facts in a new way and bought some fake degrees to prove that he knows what he is talking about!!!!

For me everyone who tries to sell me overpriced products with miracle result, is not an honest person.

From the books I read, I think I can trust more the real nutritionists or doctors who have real educations, and who advocate healthy diets at the same time. So I advise all of you to read the following books, and try to get a diet from them that suits you. I don't say it will work 100%, but at least it's better than doing nothing:

- What to Eat with IBD
- The New Eating Right for a Bad Gut
- The Omega Diet
- The Inflammation Syndrome
- The Specific Carbohydrate Diet
 
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They are available mail order in the UK as well as the US, although I note they are cheaper in the US!

I am thinking of ordering Primal Defense as well after reading this string, and particularly after reading the studies carried out on the link below - seemingly authoritative studies - though as they are sponsored you can't be 100% sure. But they were clinical trials. Well worth a read!
http://www.crohns-disease-probiotics.com/HSOs.html
 

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