I was wondering a few things about probiotics, appreciate it if anyone has any thoughts:

1. What evidence is there that probiotic strains can't be mixed? Mostly I've heard this statement from the owner of Natren or people who've heard it from her. Almost all other probiotics include mixed strains. The successful studies using VSL#3 used mixed strains -- so are people saying that one strain dominated all the others in these studies? It seems to me that this question should be fairly easy to settle, as someone must be able to put a few things under the microscope and see .... and it is hard for me to believe that the research people at all the other companies are so irresponsible (or self-destructive) that none of them have noticed that mixing strains is a problem.

2. This is somewhat redundant w/an earlier question, but I'm also wondering what evidence there is about asacol interfering w/probiotics, besided that Jini's brother says asacol changes the Ph of the colon. Again, a VSL#3 study for Crohn's compared people taking asacol and probiotics to people taking just asacol, and the people taking both did better, and they were still taking asacol.

3. Has anyone had good results w/other probiotics besides Natren?

I tried the Natren for quite a long time, and didn't see any changes (which is mostly true for all the supplements I've tried). I think stress is more the problem than diet for me, but probiotics make so much sense that I don't want to give up on them.


take care
debbie

Hi Debbie.

I am not a probiotics expert. I have had UC for 12 years and started using probiotics in June of last year. I only discovered LTYG about a month ago.

I'm also wondering what evidence there is about Asacol interfering w/probiotics

In August, I started the Natren probiotics. I slowly built up to the 1 tsp per day for each of the 3 strains. At the time, I didn't even consider lowering my prednisone (5mg), 6mp or Asacol... But my UC was the best it's ever been. No urgency. Beautiful stools (wow, is that weird).

Jini's point was that with the changed pH, the probiotics cannot colonize. This is what I've found in my experience too. I found that I would get some benefit while I was taking them... but I wasn't getting cumulative benefit. The concept is to take the probiotics for a period of time to completely repopulate the good bacteria... to setup your own "army" of good guys. I found that day after day, week after week I was enjoying the short term benefits of taking them... without the long-term "breakthrough" that I was expecting.

I really believe this is because I was on Prednisone and Asacol. Again, I'm no expert.

Has anyone had good results w/other probiotics besides Natren?

First I tried Primal Defense and had a very bad experience with it. As you probably know, Jini recommends not using any HSO probiotics.

My GI recommended a product called Flora-Q which I had some good results with. While I was on some antibiotics for bronchitis, I was able to stop the bleeding over night with the Flora-Q. The bottle states 1/day. I had worked up to 4/day. Cost is about $1/capsule.

Natren is still the product for me. I believe that it is much stronger and I like that it comes in powder form.

One idea that I have been thinking about is making Flora-Q my probiotic during flares and Natren during remission. Jini recommends not using probiotics while bleeding. I believe (I hope I’m not wrong) that this is because the Natren can irritate an already irritated mucosa. My theory on this is that (as Natasha states in her book) that the Natren strains are “super strains” that stick to the lining of the intestine. This is one of the main properties that separate the “super strains” from all other probiotics. I am wondering if this adhesion property might make Natren harder on my system while I’m bleeding. Again, please remember that these are only my thoughts. I don’t claim to be an expert on anything.

I vaguely remember a section in Natasha’s book indicating that an imbalanced gut flora can increase the stress in one’s life (and not just vice/versa).

If you don’t mind me asking, what levels of the Natren are you taking? All 3 strains? Are you taking other meds at the same time that might interfere (Pred, Asacol)?

Ed

Hi, Debbie.

Sorry, I wasn't ignoring you, but I wanted to take some time to think about things before I responded.

I will also ask Jini to check out this discussion thread in particular to see if there's anything she wants to add or clarify.

I think when she hears back from her brother and answers Morris' question, that will answer at least part of your second question, as well.

Understand that I'm not a scientist, nor do I have any aspiration in that direction. And in making decisions on my own "treatment", I find studies interesting, but give the heaviest weight to my own experience. Since my experience following Jini's suggestions (I've never taken medications for Crohn's, except for Cipro and Flagyl before my diagnosis) has worked really well for me, you can understand that I have a lot of faith in them.

That's an interesting question about mixing probiotic strains and why companies would do that if it's supposed to be a problem, that is, shouldn't they know better? Jini may have some more scientific response for you, but my own thought again comes back to the above paragraph. Natren was the first brand of probiotics that Jini took that actually worked for her. It was actually later on that she discovered in the course of research what specific factors set Natren apart from the others. So her experience was: 1) Natren worked for her, where others didn't and 2) when she contacted other probiotic manufacturers with questions:

They were all very helpful with my initial inquiries. However, once I started asking specific questions about strains used and/or asking to see independent lab assays of the product, most simply stopped responding to my questions and refused to talk to me anymore and one even started yelling at me, accuing me of being ridiculous and unreasonable - I kid you not!

So even if she doesn't have more scientific information to add, you can see why Jini would trust Natasha Trenev's assertions regarding probiotics, just as I trust her recommendations. They've worked.

Nevertheless, I certainly encourage you to trust your own judgment in this regard. You have to do what you think is best for you.

I think Ed's experience regarding taking probiotics while on Asacol and Prednisone also sheds some light on your second question. Thank you, Ed, for sharing that.

Also, check out "Things That Kill Good Bacteria" on page 175 of LTYG. I encourage you to avoid or eliminate as many of these things as you can, again, taking a balanced approach of making only as many changes and only those specific changes which you feel comfortable with and positive about, at least for the time being.

And in the meantime, I'm sure you're also working on finding the most effective possible ways for you to deal with stress in your life. It's pretty hard to eliminate stress from our lives unless we can succeed in living in a bubble (and who even wants to?). But I completely agree with you that stress and how we deal with it is a HUGE component of IBD and no doubt, of many other diseases, as well. So even if that's the one change we make....finding better ways to deal with stress....it's bound to have a real and lasting impact to the good.

I hope this is of at least some assistance in addressing your concerns.

Nicole

Ed and Nicole,

Sorry it took me a few days to get back to you; I appreciate your responses.

I'm actually not taking Natren probiotics at all now, but I was taking about a half teaspoonful of all three strains, twice a day, for over year, and I didn't see any change. I was on asacol the whole time, and on prednisone a few times when flaring. Between flares, my stools have been pretty good (not sure about beautiful ) But I've still been flaring about twice a year, and this time it took me three months to get off pred, and I'd just as soon never go on it again. I have been trying other probiotics.

I am trying to figure out who to believe. I'm glad that various supplements have worked for many people on this list; I don't have a lot of evidence that they have for me. Yet it seems a fairly big step to go off my drugs because some people say the drugs might be the reason why the probiotics aren't working, although that theory seems quite plausible, but it also seems like there ought to be better evidence than so and so says so or it worked for me.....

Don't get me wrong, I'm not one to blindly follow a doctor, and I am disgusted by numerous aspects of the medical/pharmaceutical establishment. However, I'm not one to blindly follow Jini either. It's great that so many things have worked for her (and for you two), but she and I have had very different symptoms, and probably also have very different constitutions/personalities..... so, it makes sense that different things work (or don't work) for us.

I think that disregarding scientific studies is throwing out the baby w/the bathwater, to use a cliche. If mixed probiotics, taken w/asacol, have shown results in a double-blind placebo controlled study, then it doesn't make any sense to say that mixed strains don't work and that asacol makes probiotics not work (although, surely it could inhibit them).

I'm trying to use my brain as well as my gut to become healthier.... they have each been trustworthy and untrustworthy at various times in my life....

I just went to a new gi doc, who I liked much better than the one I've been seeing. He told me that the most important issue w/probiotics is dose, and gave the fun fact that a gram of stool has 1 trillion bacteria in it. He listened very actively and respectively to my own view of how I think the ibd is related to stress (and the ways I deal w/it, learned from past trauma, and how I'm working on it now), but I didn't get the sense that he gave any of that much credence.... he said that in the '40s, a treatment for UC was to give people lobotomies.....because it was thought that it was all in their heads.....so, I can see where to him not giving the stress theory too much credence might seem like avoiding disrespectful pitfalls of the past.

I have made some moves that are helping a lot w/the stress -- biggest one was resigning from one part of my job that's been especially stressful. That was a huge step.

thanks for responding

debbie

Hi, Debbie.

I do want to clarify that I wasn't encouraging you to disregard scientific studies. I said that in making decisions for myself, I give heavier weight to my own experience than to scientific studies...not that I give NO weight to them.

Largely this is because it can be quite an undertaking to figure out who funded the study, how closely it stuck by the scientific method, etc. That's not to say I don't read them (and certainly Jini did/does, too....look at all the references to studies in her books). But in the end, I trust my own experience because I KNOW it, far more intimately than I can know the answers to the above referenced questions.

In the end, a lot of healing comes down to trial and error. You ("you" in the general sense) read, you get a "feel" for what you think will or won't work for you, you try it, you refine it, and so on.

Also, for what it's worth, I completely agree with you. I have a deep mistrust of the pharmaceutical industry and the assembly line feel to most doctor's appointments I've had. Technically speaking, I really don't think being on a medication treadmill is a good thing for anyone's physical body. (I saw enough people in that situation...and what it did to them....to make me swear never to be in it myself before I was ever in a position that doctors wanted to medicate me.) Nevertheless, I fully agree that if you have any doubts about going off your drugs, you shouldn't do it. It would be bound to be a rocky road for awhile and that's not something to put yourself through unless you're really convinced that it's the best thing in the long run.

Just as a side point, about probiotics, for everyone's benefit, here is a quote from LTYG:

Adequate probiotic supplementation is an integral part of healing the root causes of your digestive disorder. And when I say 'adequate probiotic supplementation', I mean high-dose supplementation with effective, potent strains. There have been many human studies done with probiotics to monitor the effect of supplementation on things such as candidiasis, diarrhea, cystitis, etc. and the same probiotics taken at lower levels had very little or no effect. However, the same probiotics taken at high doses (typically 7-10 billion cfu per day in adults) showed impressive results. So, you can be taking the right probiotics, but if you're not taking them in high enough doses, you won't see the desired results.

Which is very much in line with what your new doctor told you about dosage and is something to keep in mind when trialing other probiotic formulations....

I offer you encouragement and wish you the best results in your trialing of different things. And although we may not agree on every particular (but then, who does?), if you think we can offer you support that will be helpful to you, please don't feel any hesitation about writing.

Nicole

Hi Debbie!

The dose you were taking (1/2 teaspoon of each strain 2/day) is lower than the recommended doses. This dose would only provide you with 4 billion of each strain per day.

As Nicole indicated, Jini recommends that one must take 7-10 billion of each strain per day to do any good... and her actual recommendation is to take 12 billion of each per day.

In her book, Natasha recommends building up 6 billion x 3/day for UC. (18 billion of each).

Of course you know what's best for you... I only suggest that you consider reaching one of the recommended doses before deciding that the Natren doesn't work for you.

He told me that the most important issue w/probiotics is dose, and gave the fun fact that a gram of stool has 1 trillion bacteria in it

And that is a fun fact! Natasha indicates in her book that the large intestine contains between 100 billion and 1 trillion bacteria per milliliter. So how can taking 36 billion good bacteria / day really make a difference?

The answer, as I understand it, is colonization. If the environment is right, the good bacteria I digest today should form colonies and start reproducing their own bacteria... Every day I send them reinforcements to slowly grow their presence... but the key is having them setup "homes" and start living and thriving in my intestinal tract.

I know you are probably looking for scientific backing, which I cannot provide. I also don't know alot about non-Natren probiotics. I do know that I have reached the 36 billion per day that Jini recommends while I was on Asacol and Prednisone and I don't think that I reached the "happy colonization" phase - meaning that every day I observed the same results as the next day. I would hope that under the drug free conditions, my results would get better every day as the armies established and grew. Right now, they don't want to setup camp in my intestine.

I am presently working on my plan to slowly reduce the Prednisone and Asacol to provide a better environment for the good bacteria to live and thrive.

I hope some of this helps. It's really just my own research and experience.

Ed

Hi, Debbie.

I just had one other thought and also an experience I want to share with you.

Jini would be the first person to applaud you for not wanting to follow her or anyone else blindly.

I actually received LTYG after I had an appointment with a GI who told me suspected Crohn's but before the colonoscopy he scheduled. And I had the whole thing read in one day, so I'd already read Jini's feelings about colonoscopy well before the actual procedure. But on thinking about it, I still decided to go ahead with it anyway, because in my mind at the time, the benefit (knowing for sure what was going on with me) outweighed the risks I read about.

I still stand by that decision, even though I can't foresee myself agreeing to another one, because at the time, not knowing what was going so awry with my body was such a big stressor for me. I'd had a sister who went through cancer (she is a survivor), I KNEW whatever was wrong with me wasn't just some little thing and I was scared. Also, at the time, I had very little experience with alternative medicine, although I'd read quite a bit about herbs, a natural offshoot of being an avid gardener.

My point is, again, Jini would be the last person to want anyone to follow her suggestions/experiences blindly and I second that.

I know that had I come down with Crohn's back when I was not just the main breadwinner, but THE breadwinner for our household, that I probably would have felt little recourse but to go the medication route, at least for a period of time. I would have needed results and needed them fast. So while I do hold ideals about holistic healing and I do believe it is the best all-around answer, hands down, I also understand that sometimes compromises have to be made.

You sound like a person with a pretty strong center, anyway, but I still want to give you some validation. Your doctor may have been cautious about citing stress as a trigger, perhaps for exactly the reason you cite. But what does your own experience and gut tell you? Regardless of whatever anyone else (even a sort of authority figure, by dint of education, if nothing else) opines, THAT's what you can reliably begin to form a healing path around.

All the best,
Nicole

Hi All,

First of all, Ed, please read my latest posting on Asacol and bacterial flora. Whilst Asacol may not disrupt flora - jury's still out on this though due to not enough information - we know for certain that prednisone and other steroid medications do.

Secondly, whilst probiotics certainly do need to adhere to the intestinal wall and colonize to a certain extent. It is not a matter of just establishing a sufficient flora and then never taking probiotics. Food-cultured probiotics are not spore formers, they are "transient" species - meaning they have to be replaced/ingested on a regular basis. Hence the importance for ingesting daily homemade yoghurt or kefir once a good flora has been established. These food sources are good for maintenance, but not potent enough for therapeutic use.

For therapeutic use, as has already been discussed, dosage is key.

Re. scientific evidence for not packaging different species together - please see the probiotic section of LTYG in Ch. 2, I present several scientific studies proving this. I know, I was as incredulous myself to discover this fact and that manufacturers either don't know, or don't care.

Finally, also, as has already been stated, the final decision to action must be based upon experiential evidence. You can have all the scientific theory in the world proving or disproving any given thing. Whilst we must research and use our intellectual gifts, at the end of the day, you've got to do what works!

Often I have had a strong intuition about something and years later scientific evidence has proved me correct. And, as has already been pointed out, different things work for different people. Which is why my book is titled, Listen to YOUR Gut - not someone else's. And never give your power away to any authority.

One last interesting tidbit to chew on: In Natasha Trenev's book, she outlines several studies that show that even when bacteria are completely dead, or even absent, they still have a protective effect! One example given is that they put a species of probiotic (can't remember which one and I'm travelling so don't have the book with me) into the center of a petri dish containing a pathogenic bacteria. The pathogens fled to outer edges of the petri dish, trying to get as far away as possible. Then they dumped out the contents of the petri dish and cleaned it thoroughly. When they added the pathogen again, they still fled to the outer edges of the petri dish. Why? Was there an 'energetic footprint' left behind by the probiotic? Or some incredibly minute particle that still remained despite washing the dish? Who knows. But it's absolutely fascinating and illustrates how even if you consume a probiotic that's mostly dead, it can still have a positive effect.

So, in the end, do what works. If you get better results from VSL#3, then use that. Again, I must refer to one reader's story who got the best results from probiotic cycling - he alternated Natren, VSL#3 and Dr. Ohira's. If he stayed on any one, his symptoms would return, but by cycling through them, he avoided any flares (as soon as symptoms would begin to return, he'd switch brands). All these brands are good ones to experiment with as none contain anything harmful.

Personally, I wish more people would experiment with this (probiotic cycling) as I'd love to hear what happens, and perhaps we can come up with an even more improved protocol.

Oh yes, one last thing. Previously, I did express my reservations about not taking probiotics whilst bleeding. This was not based on any scientific evidence, but merely my own feeling about not doing too many things at once (since when the body is very ill it is often oversensitized and trying to treat everything at once can trigger a flare). However, as I do state in the new LTYG, there is a colon clinic in Sydney that has used high dose oral Natren probiotics and daily Natren retention enemas to treat bleeding cases of Crohn's and Colitis with much success, for several years now.

So again, please follow your own gut.

all the best,
Jini

Hi everyone,

Thanks for all your thoughts. I think I will try the Natren probiotics again at a higher dose and see how that goes -- I think I just read the bottle for the dose. I've never tried VSL#3, maybe will do that sometime too (that is really expensive.... but then the Natren will be getting up there too at the higher dose).

Jini's example of the dead bacteria sounds sort of like homeopathy.... interesting.... although, then I wonder if not refrigerating the probiotics would be OK, if they still work if they're dead (I know you didn't mean this, just would follow). Would also be good to have things like this confirmed independently (ie. by someone who doesn't sell probiotics).

The colonization doesn't surprise me.... things that grow exponentially, grow much faster than often seems intuitive (part of why people get into such bad credit card debt....and I'm a math teacher, can't help myself here).

Ed, good luck w/going off prednisone. I just got off of it two weeks ago, and boy am I glad. I started at 40 mg ... was a bad course, and I hope I never go on it again.... and so it is still a bit appealing to try 6 MP, because I need a safety net besides prednisone. Of course, I'd rather find something less toxic that works, just haven't seen it yet.

Nicole, thanks for sharing some of your experiences. I do live by myself and support myself, and being able to work is a priority.... I appreciate your support.

A lot of what's going on for me is figuring out who to trust.... and yeah, it'd be great to trust myself the most, but there are people who know more about this than I do, and I want to listen to them, even though most of them have their own agendas too .... (and no, they don't know more about me than I do, but I have my blind spots too....) It's all very overwhelming sometimes.....

take care
debbie

Hi Debbie,

Just so you know, the study I referred to in Natasha Trenev's book is indeed an independent study - it was a paper written by Dr. R. Ninkaya in 1984 titled "The Role of Bifidobacteria in Enteric Infection" (published in Bifidobacteria Microflora 5).

Whenever I reference a study, they are always independent, scientific publications - not a manufacturer's internal study or data, which, as you've pointed out, are totally unreliable!

Hey, since you're a math teacher, you should get a kick out of these articles on teachers using EFT for math performance and test anxiety among their students:

http://www.emofree.com/Performance/math ... soming.htm

http://www.emofree.com/Performance/scho ... -patsy.htm

all the best,
Jini