I think you should try some and see how they work for you. I think you need to give each maybe 3 months to see if it's effective. They all work differently for different people. But since VSL#3DS can be obtained by prescription I'd think that would be the most effective.

kathy

I've tried Culturelle, Flora-Q, and Align (currently taking). I gave each a full 3 months before switching. They were all pretty similar, in my opinion, but Align seems to more consistent in keeping IBS symptoms at bay. I've found none to be effective to treat active pouchitis or cuffitis, and none can replace maintenance medication. I order my Align from Amazon, subscribe and save.

I also take Saccharomyces boulardii (a yeast), because it has been shown to be helpful in preventing C. difficile overgrowth (also purchased through Amazon).

I've never tried any store brands, just those that have been studied, except for VSL#3 (too rich for my blood).

Jan

I am not sure if the VSL#3 DS is covered by my insurance, but even if it is, it would be at the $40 copay level (which would join xifaxin and pentasa as the only meds I have taken at that level). Thus it is likely even more expensive than it is for a 30 day supply than Align or other over the counter probiotics. I will check on that and find out what is covered by my plan.

I am interested to know what is the minimum threshold of probiotics I should be getting. For example, the "Walgreen Super Probiotic" gives me this:

"Probiotic blend: 20 billion CFU's Lactobactillus Acidophilus, Bifidobacterium Lactis"

This sounds good, but is it enough and is it the right probiotic blend?

I'm currently taking two probiotics.

I'm taking Progressive's HCP 70, It has six strains, Lactobacillus rhamnosus, Bifidobacterium breve, Lactobacillus acidophilus, Bifidobacterium bifidum, Bifidobacterium longum, Lactobacillus salivarius, with 35 billion a cap, and I take two caps a day, breakfast and dinner.

As Jan is also taking, I started taking sacchormyces boulardii for the last week or so. Sounds like it is helpful, so now I just gotta wait and see how they both do.

Right now, the Probiotic that was recommended to me by a sales person at the health food store is "MegaFlora." It has 20 Billion Units and 14 Probiotic Strains. I take two tablest in the morning and two more before I retire for the night so that is 80 Billion Units per day. I wanted to take Ultimate Flora but the sales person said that only has 10 Probiotic Strains and 50 Billion Units. She said the Probiocitcs that work best should be refrigerated. The Ultimate Flora that has 80 Billion Units has milk in the ingrediants and that is something I cannot handle.

I have taken this Probioctic for a week now and right now I feel no different and still feel bloated when I eat. The only time I do not feel bloated when I eat is if I have a power shake but then I do not get protein that way.

I hope when I have my first appt with a GI/Nutrionist this Thursday can give me the help I need.

Rocket

In my mind, it is not so much what the probiotic bacteria count is, but the specific strain. I've done a fair amount of reading on the subject, and there is a difference between patented strains and a generic "house brands" and untested brands without excellent quality control.

The reason I say this is because most strains have not been proven to survive stomach acid to colonize the intestines. Plus, each strain may or may not actually prove to be useful for assisting with bowel symptoms. There are so many out there, I did not want to waste my time with brands that have not been scientifically studied for IBD or IBS. This does not mean that all others are posers, but that I do not have unlimited time, patience, and resources to do my own testing.

No offense to health food store clerks, but what do they really know about treatment of IBD and IBS? Even our GI docs are not completely up to speed in many cases.

Jan

djb husky..i tend to agree with jan..strains more important than how much..as example my son who suffered severe intestinal issues..run away candida..has been on special probiotics he takes three different strains his practioner gives him..and she is not concerned with billions..

with that said ..who really knows what probiotics we should take..what strains work and for what issues?we are all just experimenting..those of us with chronic pouchitis know that probiotics by themselves do not work ..my dr. shen certainly does not recommend any he thinks will benefit me..

however,i take saccharomyes boulardi(brand florestor)and culturelle together because that has been suggested as preventers of c-diff..i found that out in my research when i had c-diff..

might have to test it out real soon djb huskey because i have another problem besides my pouchitis i control right now with augmentin(six months now) and in order to rid of my sinus problem now my other dr. wants me to take another antibiotic only good for upper resortory ..since i fear to give up augmentin i might have to push the bug issue..

always somethin!!!

p.s real sorry you reached the end of your antibiotic regiment and hope the enecort and pentasa do what needs to be done for you..keep us up dated on your progress..

rebe

I also want to agree with Jan on this one (as usual). Specific strains are almost certainly more important than how many different kinds of (seemingly random) bacterial species. And we are talking strains here (a subset of a bacterial species) and not species themselves. This is kind of like the difference between broccoli and cauliflower - different versions of the same species.

Unfortunately, very few manufacturers list which strains they actually use. So even if the same species is listed on the labels of two different products, there is no guarantee they are producing the same exact probiotic. I suspect this state of affairs will continue until the probiotic market becomes regulated and/or much more research is conducted to determine which specific strains have therapeutic value and at what dose. As it stands now, it is all trial and error if not a crapshoot on the part of the consumer.

Regarding dose, I was always told by people who seem to know what they are talking about that one would need to consume at least 10 billion cfu's/day in order for the probiotic to have therapeutic value. So I look upon that dose as being a minimum. I was also told to look for refrigerated strains as they tend to be of better quality (I have only seen one study on the subject, from a few years back, that supported that claim. Things may have changed, but I still do not trust non-refrigerated brands).

By the way, I have been taking pro-5 by Klein for the past 6 weeks (25 billion cfu/capsule). It is the first probiotic I have taken that actually seems to help. So, for the moment anyway, it is my maintenance probiotic.

Thanks Jan, I do respect your opinion as well as many others on this site. I don't know how much time I should stay on one specific Probiotic. I suppose I will finish the bottle that I have and hopefully, I will get more info when I see a GI/Nutrionist for this first time this Thursday.

From what I have read, the once kept in the refrigerator are the most recommended.

Rocket

Actually, the only recommendations I have seen regarding refrigerated brands are from health food store people and anecdotal comments. The only brand I've seen that requires refrigeration that has been studied is VSL#3. All the others, PB-8, Culturelle, Flora-Q, Florastor, Align, saccharomyces boulardii, etc., that I've read studies on, are shelf stable. To me, that simply means that they are freeze dried and packaged with quality control, not that they are inferior products. Personally, other than the VSL#3, I trust the ones that do not require refrigeration more, because they are more likely to actually have the guaranteed active bacteria count.

I think you should look at the results of studies more than which product needs refrigeration. That's just my opinion, and not necessarily fact.

Jan

I solicited my pouch expert's opinion on this issue and he suggested Align. I still have to call my insurance company and see if they will cover VSL#3DS or any other prescription strength probiotic, and if so at what level of co-pay. I will report back after I find out that info. I still have about 5 days supply left on my Walgreens House Brand "Super Probiotic."

Jan said:

quote:

I trust the ones that do not require refrigeration more, because they are more likely to actually have the guaranteed active bacteria count.

I would be grateful if you could share with us the study or studies supporting this claim. It is not something I have heard before.

She is saying that personally, she trusts the non refrigerated shelf stable probiotics more because they guarantee the potency by the expiry date, no matter the temperature. Although even most shelf stable versions advise you store it in the fridge to greater maintain potency.

Probiotics that require constant refrigeration are more likely to loose their potency if they weren't kept at the right temperature during transport or something, maybe they spent the weekend in a box in the pharmacies back room before being put out? Who knows right, that's the point, you just assume it's been kept refrigerated constantly before you buy it.

I rock a shelf stable cap that I keep in my fridge.

I spoke to my insurance company and they do not cover VSL#3 DS, or any other probiotic for that matter. So basically I will have to reach into my own pocket, exclusively, with this purchase. This means cost efficiency of probiotic will be an important consideration.

The subject of probiotic maintenance came up at my CCFA support group meeting last night. The consensus of the group seemed to be that there are so many diverse opinions on the subject that there is effectively no industry-wide accepted consensus opinion, either on minimum thresholds, or of mininum number of different strains to look for in any probiotic blend, or on anything else.

I would be interested as well in hearing from Jan on whether there is some study that shows freeze dried formulas are any better or more "guaranteed" than refrigerated formulas. Although I agree with Subsky that Jan may have just meant to comment on the likelihood of potency as described on the package, due to possible variables in temperature/storage.

I may be wrong but this is my understanding of the process. I believe freeze drying bacteria (essentially removing all water) keeps it inactive only while the temperatures stay low. I'm guessing just by appearance that VSL is freeze dried as well, but it's my understanding this inert state only lasts as long as the temperatures are kept low. Having something shelf stable AND with a long shelf life would scare me if the goal was to get active cultures into your system. Now if the expiration dates are relatively short the shelf stable stuff is probably fine, but if they claim stability for upwards of a year I'd start to question if it's live strains or not.

Just my two cents, but I am by no means a scientist. If I'm wrong I'd love to be corrected.

Husky, I'd call back and make sure they know you mean VSL DS. I had this issue initially as well. You can give them this NDC number to rule out any mistakes on their part. NDC - 54482093001

My husband, who feels almost normal when he is on Cipro, just started Ultimate Flora Critical Colon 80 billion, and feels amazing. He says he feels as good, if not better, than he does when he's on Cipro (which he isn't right now). He also just started taking Tumeric pills, 4/day, to help with inflammation. He's also eliminated most dairy and wheat, and the combination is working wonders for him.

He's taken VSL and Align, and they work OK, but I think the key is to switch them every few months. But ultimate flora has been by far the best.

elooney,

Where is the Ultimate Flora CC 80 sold and at what price?

Hi DJBHusky,

I got his at Vitamin Shoppe and I believe it was $45/bottle. I want to say there are ~30 in a bottle, so a month supply. It's refrigerated, which in his experience, works better than the non-refrigerated probiotics.

I just looked on Amazon and it's $33.60 there. I would say with how he's been feeling, it is DEFINITELY worth a try.

Thanks elooney. I assume if I order it on Amazon they have to freeze pack it for delivery? I will check around locally for it.

Yeah, when we order VSL#3, it comes in a cooler with ice packs, so I assume they would do the same for the Ultimate Flora. I bet you can find it somewhere locally, although it may cost more. We live in HI, so I'm sure the $45 I spent on it here is more than it would be other places. Good luck and let me know what it does for you when you try it!

i once read somewhere where a promonant dr. said any probiotic one takes is a drop in the bucket concerning balance of good and bad bacteria...

i think your support group is correct in there findings..probably taking a probiotic just helps in that we like to feel we have some sense of control so we do it..but there is absolutely no confirmation of them being beneficial or helpful at all for most of our issues..dr. shen says "it probably does not really help but it also probably does not hurt..

if cost is a consideration one might be better off not bothering to take any...but hey i am one to talk i take vitamins when there is no proof they do anything either!!!

rebe

Yes, my point was that probiotics that have been studied and shown to survive stomach acid along with being shelf stable (proven through quality control analysis), are more likely t deliver the guaranteed colony count to your intestines. Yogurt can't do that, and neither can brands that have not been tested in controlled studies. They may be fine, or not, but I prefer something with consistency.

My Align come in individual foil packets, so they are sealed against light and humidity. Sure, they are shelf stable, but that does not mean you can store them in a hot attic or leave them laying in the sun. It just means room temperature.

I could find no studies saying refrigerated is better than shelf stable or vice versa.

Jan

I went off ABx's >10 days ago, after 1-1/2 years on them, and am doing very well so far, knock on wood. I take PB8 in the a.m., VSL#3DS in the evening, and throw in an s. boulardii once in a while.

Also started drinking Kefir - the brand I drink has many different strains of probiotics.

I understood Jan's point just fine. I was merely looking for supporting evidence.

In any event, I am attaching a report here that I think probably applies to most probiotics manufactured. This is from an industry source so take it for what it is worth. In no way do I suggest that this short report is definitive, but it seems reasonable to me.

What struck me is how stable at room temperature their probiotic blend is despite their recommendation of keeping them refrigerated. I take from this that it probably doesn't matter all that much if your probiotic is bought on a store shelf at room temperature or on a refrigerated shelf. The issue is how long it has been on that shelf and under what conditions it has been stored. The value of refrigeration is that it can better maintain viability and potency over time - which stands to reason, right?

On a side note, I went to my local food store and looked for room temperature probiotics such as align. I was surprised how expensive they were. The box of align I saw was $28 for 28 pills containing the equivalent of 1 billion cfu's per pill. The refrigerated probiotic I use cost $28 for 60 pills containing 25 billion cfu's per pill. I'm beginning to think my current probiotic is a bargain!

Cheers.

A slight change in topic here from this informative conversation, but how can I even try these probiotics when I can't get off antibiotics? I assume all of you don't take probiotics when you're taking antibiotics, correct?

There seems to be a lot of mixed thinking on this issue. Some doctors say one thing, one say another. Personally, I take probiotics whether I'm on or not on antibiotics. When on antibiotics, I take them about halfway between the antibiotic dose.

I think - but who really knows - that taking them with antibiotics was helpful when I eventually did go off antibiotics.

Went to Walmart today and bought their house brand probiotic, "Equate", 28 capsules for $16.97, exact same ingredients as Align for $10 cheaper. Also packed in aluminum foil like Align. The package label challenges you to compare the product to Align, I did, and there does not seem to be any difference except in the price.

Since I am now back on antibiotics and am taking a probiotic between antibiotic dosages for whatever that is worth (probably not much), I did not think it worthwhile to do anything more than an invest in the cheapest house brand. If and when I can ever get off of antibiotics, I will look at some of the fancier stuff.

DJB,thanks for that info! I've bee getting the Align at BJ's but I will certainly compare the prices with the Walmart brand.
Best.