OT:Probiotic use | Arthritis Information

A few days ago I posted a new topic about IBS and some treatment that folks here use. It was in general agreement that pre and probiotic use could definitely be of benefit. I was just looking into some of the different manufacturers versions of these supplements and found, through WebMd link from the GNC website, that they warn of interactions or risks in taking them if you take immunosupressive drugs or have a weakened immune system.

Has anyone else heard this and why in the heck could they be harmful?

Here's a link in case anyone wants to look into it, just click the link labeled read more about probiotics:

http://www.gnc.com/product/index.jsp?productId=2747150&cp=2618598.2108099&parentPage=family

Hey Bob!

WebMd is not an unbiased website - they have 'sponsored' pages and Pharma pays for the info to be placed in there. You'll see side effect profiles for some of our meds as being really benign - but if you go to the FDA required 'real info' on the manufacturers site, you'll see that the side effects listed are a lot more. The reason for that is we don't trust drug makers to tell the truth about their meds, so we don't go look there. Ingenius, isn't it?

Anyway, no, I haven't really heard of anything about immunosuppression and probiotics. As far as I know, there are no studies about them. The part about antibiotics is true - yes, antibiotics can interfere with probiotics so we take them at least 2 hours away and are constantly replacing the good gut flora with more probiotics because the antibiotics are constantly killing off both the good and the bad gut flora. We need the good.

There was also a probiotic study in the Netherlands (I think) where 24 people died and they didn't know what was going on until after they un-double-blinded the study and figured out something was wrong. It was some sort of freak experiment in that they didn't get the probiotics orally - they were administered thru feeding tubes and by passed the entire GI tract and entered the body in the duodendum. They were testing pancreatis attacks (which can be deadly) and trying to see if probiotics would help. Apparently, a death from these attacks are not uncommon so that's why they didn't realize what the problem is. The maker was Winslow and as far as I can tell, it wasn't an antibiotic med the people were on. I suspect a immunosuppressive but ... I always do...and there is no way to prove it unless somebody somewhere says which med were in the drip lines. Anyway, the government in that case said probiotics should not be given into the duodendum and for people on feeding tubes.

You are not on a feeding tube. Thank God.

Also, you can easily see the probiotic studies by Googling "PubMed" and putting 'probiotics' in the search term. The researchers are a LOT more favorable to adding probiotics into our health regime then the link you supplied suggests. Check it out yourself. Pretty amazing work and the last line of the study usually tells all you need to know.

Another thing in the link is mentioning the gas and bloating - that goes away when you get up to speed. There is no such thing as too much probiotics (or I haven't found it yet) in that if you get diarhea or rotate between the big D and constipation, you need to up your dose until you are regular. Most people, when starting, need to start slow and when the 'tummy troubles' subside, up it again until they are regular - 2 X a day - and NORMAL bowel movements.

Hugs,

Pip

Probiotics have been VERY helpful to me. Give them a try.Sno - can you post the entire link? You have a ton of things I want to comment on above (and have to go offline as MONDAY's totally blow for me) but will get to it later tonight. I'd like to see the entire thing first tho.

Thanks,

Pip

Bob, I was unable to find the passage you referred to, so I'm not sure what it exactly said. I did, however, read a really long article on medscape which was referred by your link and mentions the use of probiotics by the immunosuppressed, but all it said about the warning was:

"Safety of Probiotics

The available probiotic microorganisms are considered nonpathogenic, but even benign microorganisms can be infective when a patient is severely debilitated or immunosuppressed. For example, lactobacilli are present in dairy products and are part of the normal flora, yet cases of lactobacillemia have been reported in patients with severe underlying conditions.[96,97] To date, there have been only isolated reports linking probiotics with adverse effects. A case of a liver abscess was associated with L. rhamnosus in a 74-year-old diabetic,[98] and cases of fungemia involving S. boulardii have been reported. [99-101] All patients responded to standard antimicrobial therapy. S. boulardii has been used, without complications, to treat chronic diarrhea in AIDS patients,[61,64] and L. reuteri has been safely given to HIV-infected patients.[102] There is a theoretical risk of transfer of antimicrobial resistance from the probiotic to other microorganisms with which it might come in contact, but this has not yet been observed during therapy.
On the basis of published findings, the risks of therapy with available probiotics seem small. However, published studies systematically evaluating the safety of probiotics are lacking. The use of probiotics must be carefully considered when these "living drugs" are used therapeutically in patients at high risk for opportunistic infections or when the gastrointestinal tract is badly damaged."

And: "Conclusion

Probiotics have demonstrated an ability to prevent and treat some infections, particularly those confined to the vagina and the gastrointestinal tract. Effective use of probiotics has the potential to decrease patients' exposure to antimicrobials. Available probiotics appear safe but should probably be avoided in patients at high risk for septicemia."
http://www.medscape.com/viewarticle/406975

The upshot was several pages on the known or strongly suspected benefits of probiotics followed by a vague warning that the cultures are live and there's not enough known about them to attest to their safety when used by the immunosuppressed. (this is actually true of all medicines used in the treatment of RA as well. The risk factors are largely unknown).

I have asked my doctor (who is obviously aware of my compromised immune system) on a couple of occassions for prescription antifungals such as Nystatin, and she has told me that in her opinion it is better to take over the counter probiotics.

Because of my own research and conversations with my doctor, in my opinion probiotics are probably more safe than most if not all pharmaceutical options available for your condition, but it's up to you to decide for yourself what the more benign treatment might be. Good luck with whatever you decide to use.

I was told the same thing tonight when I asked an ER doc about probiotics. I picked up some from GNC that have 14 billion CFU. I did my research and found that of the amount that the supplements claim to have, many die from the time of manufacture to whenever you buy and take them. Of those that are not dead when you take them, some can be killed by the acid environment of the stomach. So I have no idea how many you will get in the end but it won't be the advertised amount.

I also agree that these are the best option when weighed against some of the pharmaceutical companies alternatives. Some of the studies you read too are written by docs that are "in the pocket" of big drug companies so they are paid to discourage the use of other products.

Thanks for the help everyone.

Bob

I just found this link that says that L. acidophilus will stimulate the immune system to make more IL-1 and TNF-alpha which as we all know are some of the baddies in our cases. I promise I'm not at all trying to contradict anything that anyone says. If anything, I pass this on so nobody gets harmed in any way. Since I've failed Kineret and it's and IL-1 blocker and pretty much failed remicade, humira, and am on my second go round with enbrel (with little to no relief) I think I might be okay to try these.

[QUOTE=bob_h76]I just found this link that says that L. acidophilus will stimulate the immune system to make more IL-1 and TNF-alpha which as we all know are some of the baddies in our cases. [/QUOTE]

Bob, I've never heard that before, do you have the link for us?

I have been taking acidophilus supplements daily since well before my RA onset. They were the dry, unrefrigerated tablets, but enough to prevent my monthly yeast infections (courtesy of birth control pills, sorry if TMI) so obviously it was doing something good. A few months ago I switched over to the Multidophilus brand which are refrigerated capsules and contains several different strains. I'm bad at remembering to take pills that are not in my pill box, but I haven't noticed a difference either positive or negative since the switch.

InnerGlow2008-11-17 23:30:43Thanks Snow - I see now where this guy is coming from -

OK, the first point is that the autoimmune theory is one of like 4 dominant theories of what is going on in the body and it's basic tenets, if I understand correctly, is that the body somehow turns on itself and can no longer recognize self from non-self. Another theory is "infection theory" (where I was camped) and yet another is the Danger Model. If you run a search here you'll find it - its my new love. The Danger model says the body is less concerned with recognizing self from non-self than it is in with perceived danger to the body. Plus, it accounts for a lot more variances than the AI theory does. Then there are other less popular theories like the Hygiene Hypothosis. So, the first thing we have to do is figure out which 'camp' we're in. I just didn't buy that my body somehow just turned on itself out of the blue one day and didn't know what it was attacking.

So this guy is coming from a straight AI position. The body is only over-reacting and needs to be not boosted. He's taking it even further than most in that he's saying that boosting is almost impossible because of how the body is designed. So, here's my comments on his comments. LOL

And if you think about it, this identification process has to be pretty exacting. First of all, we have to be able to distinguish between self and non-self so we don’t attack our own tissues. Infection or Danger Model would say that the body is never just attacking it's own tissues, rather, it's attacking some sort of entity that is hiding from the body. APers think it's CWD - Cell Wall Deficient - bacteria. For example, this is a bacteria that have morphed over time and circumstances to be not just strep but a form of strep that the body can't reach. The body knows it's there but can't 'see' it so can't hit it right and remove it. And these things are darn hard to remove in the best of circumstances. So the body, in our case, hits the 'attacked area' over and over and destroys it trying to get the hidden danger in that area.

Each foreign substance gets uniquely scanned, identified, reacted to and cataloged for future reference. **Ok, so how does disease like RA fit into that line of reason? We know how to diagnose it, how to treat the symptoms, and that it can go into clinical remission. Why does the body fail to catalogue and fight off the ongoing attacks of the "dangerous person" of RA, or other chronic illnesses? - Sno** And this is where I had a problem 'believing' in AI. If you don't believe that the body is trying to hit an invader, how in the world do you explain this? AI theory seems to have shifted lately into a 'well, you had an environmental or a bacterial or viral onset, but the initial reason for the onset is now gone and your body just forgot to turn itself off'. My first thought was - how do you know its gone? My second thought was - ok - you got remission so why would it be back?

The immune system reacts to the environment. It works on a case-by-case basis, reacting specifically and uniquely to each foreign substance. There’s no way to enhance its activity across the board because its activity occurs step-by-step, one substance at a time. **But this does explain why can we have infections and illnesses that operate outside of RA, and that respond to treatments with antibiotics, for example? And why supplementation in cases of specific depletions is encouraged and possible? - Sno** But does it explain why people report they get better in their RA when they've been ill? I've even seen cancer research that says 'make 'em sick and the body shrinks the tumors'. I have 2 concerns with this. 1) if the treatment was abx, is that why the RA 'got better?' and 2) if it did, does that mean the body is fighting some sort of low grade infection? Also, lets look at chronic disease as a 'symptom'. If my doc runs a CBC and gets my mineral panels, and I'm down on magnesium, and I supplement magnesium and it goes back up, and I no longer have Restless Leg Syndrome - did that supplementation work thru the entire body? Of course it did. So, low magnesium can result in neural pathways being disrupted and re-integrated. The body is now 'primed' better with more material (in this case magnesium) to help the body work better -> and that leads to it 'fighting' better. Not supplementing the body would allow the disease process to continue depleting the body of nutrients that help it to function correctly.

I'll give you another example. Only a few years ago they thought if you had blood clots you had to limit Vitamin K while on blood thinners. They recently found that if you increase Vitamin K you get much better control of the spikes in coagulation. The exact opposite of what they had thougth for decades. So - in this case at least - more systemic use of vitamins leads to more control of the 'disease process'.

So vaccination is one way we’ve learned to “boost” our immunity. Our doctors tell us they're "suppressing the immune system", yet this article states you can't boost the immune system, so how can you suppress it? The medications being used in RA must target a unique process, and yet we don't know enough about the origin of that process to permanently put it into a neutralized state? - Sno* Yes, this is the problem with this guys theory - if you can't boost the system, how could you be able to suppress it? No logic here. Yes, the biologics all use one 'pathway' in the disease process to eliminate the symptoms of the disease. TNF-inhibitors. Il-6. Etc. They keep saying the process is so complicated that they can't find a cure and are looking for therapies - ie - removing the symptom, not the disease itself. This still doesn't make sense in the sense that MTX and Plaq are systemic meds. Heck, so would a biologic. Anything you take into your body would be 'systemic'. It's not like eat a mango, it goes only to your right hand.

And if you add in a multivitamin/mineral supplement like many people take, you’re surely covered (even that is really unnecessary, but some people like extra insurance). **Comment, by me, not everybody does eat a balanced diet, and illness and the medications for such deplete the body of its building blocks which have to be restored by supplementation. This article doesn't address the special needs people. - Sno ** Nor does it address the issue of microbes cell-jacking our cells for needed nutrients. This is why we are low in essential nutrients like calcium, magnesium or potassium. Stress hormones such as adrenalin can amp a mocrobe 200 times it's value (and probably why many of us post that we were under extreme stress on onset). If the microbes are taking our nutrients - if we don't supplement, we're only going to get sicker.

Just my opinion,

Pip

PS - Snow - I brought the Danger Model to the top for you.

Pip

Bob-

THere are probiotics with lower counts than that. I think mine is 3 billion and works fine.

[QUOTE=Pip!]I'll give you another example. Only a few years ago they thought if you had blood clots you had to limit Vitamin K while on blood thinners. They recently found that if you increase Vitamin K you get much better control of the spikes in coagulation. The exact opposite of what they had thougth for decades. So - in this case at least - more systemic use of vitamins leads to more control of the 'disease process'. [/QUOTE]

If you have it handy, Pip, can I get a link to this (for my hubby to talk to his doc)? If not, I'll do some searching.

[QUOTE=Pip!]It's not like eat a mango, it goes only to your right hand. [/QUOTE]

Then how come when I eat chocolate cake, it goes right to my thighs?
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