I'm cookoo for Water Kefir!

[Zizzle]

Woohoo! Probiotics to treat depression and other forms of mental illness. I have noticed an amazingly chipper mood lately...

http://www.medscape.com/viewarticle/814 ... uac=9310BX

Probiotics may offer an alternative treatment option for depression and other psychiatric disorders, new research suggests.

Investigators reviewed studies that examined the effect of "psychobiotics," live organisms that when ingested may produce health benefits in patients suffering from mental illness.

Several preclinical studies showed a link between specific probiotics and beneficial behavioral effects. These included one in which rats with depressive behaviors resulting from maternal separation displayed normalized behavior and an improved immune response after ingesting the Bifidobacterium infantis probiotic.

"Increasingly, patients are reluctant to take antidepressants, and psychobiotics may become an alternative," Ted Dinan, MD, PhD, professor of psychiatry and from the Alimentary Pharmabiotic Centre at University College Cork in Ireland, told Medscape Medical News.

Dr. Dinan noted that there are approximately 1 to 2 kg of bacteria in the adult gut that are capable of producing hundreds of essential chemicals. And although healthy aging is associated with a diverse range of these organisms, individuals who age in an unhealthy manner have a much less diverse range of bacteria.

"Our preclinical studies suggest that depression is also associated with an alteration in the microbiota. Psychobiotics are good bacteria that have the potential to increase microbial diversity and treat the symptoms of depression," he said.

The review is published in the November 15 issue of Biological Psychiatry.

[DebE13]

I didn't research what the recommended start point was so didn't think much of two cups during the day. I really didn't notice any reaction either way other than the itchiness of the creepy-crawly kind. It all seems predominately on the left side of my body- weird and mostly on my scalp and face. The inside of my ear itches too which is very annoying and I must look insane digging in my ear. I've stopped drinking it now for a couple days and took two Allegra this morning which seems to be helping.

It it mildly sweet. I really don't care for the taste, especially the yeasty flavor but would have no problem drinking it if I noticed improvements. I've had them for such a short period that I didn't try any fruits or flavors. Not sure what I plan to do with them at this point because my itching is bothersome. Maybe I will try a much smaller amount after the itching stops and see if I have another reaction.

It's been entertaining and a good distraction to some of the chaos I've been experiencing lately so even if I of stain from drinking it because of histamine issues I plan to keep feeding them just to see how plump I can make them. Guess I'm easily entertained.

More and more chubby ones are floating now but I still gave lots of tiny grains at the bottom of the jar.

[Zizzle]

Deb,
Don't give up so soon. Most people experience some sort of reaction early on and eventually adjust (and feel better in the process). Some call it detox or die-off, so maybe it's a sign good things are happening? I would keep drinking it, but maybe 1/4 cup a day for now then work your way back up.

[robinc2525]

Zizzle I was just reading a related article on probiotics yesterday and he talked about probiotics for depression among other things.

http://chriskresser.com/5-uncommon-uses-for-probiotics

I also read a few other articles where Chris Kresser talked about probiotics and how a person with SIBO or other gut dysbiosis problems needs to be careful which strains they use because some can make things worse. I was thinking that correlates to what a lot of people on this board say about probiotics and how they do not help and sometimes make things worse. He does say though that there are some strains that can be helpful and talks about soil based organisms which I want to look more into.

Today I am bottling my first batch of Kefir, I poured the first two off. Can't wait to try it.

[gluten]

Hi, It is only a matter of time before designer probiotics and prebiotics are available. The science is evolving rapidly. I have tried a Nasal Probiotic with four strains of probiotic. I had a "detox" reaction after the first day. They are designed to correct the imbalance of bacteria in the G.I tract that causes nasal dripping and sinus congestion. There is allot of information online about how to use "water kifer". Jon

[tex]

Some call it detox or die-off, so maybe it's a sign good things are happening?

They can call it whatever they want, but it's almost surely a reaction by their immune system (and consequently their digestive system) to the sudden boost in histamine levels. As long as they are not deficient of DAO, most people will be able to adjust, so that they can tolerate the higher levels. That doesn't apply to many of the members of this board however (who have active MC), because IBDs tend to suppress DAO levels.

You seem to keep forgetting that the reason why you can tolerate certain risky practices, that others here can't tolerate, is because you are on a long-term prednisone treatment program. (And you will probably find it necessary to remain on a long-term prednisone treatment program as long as you continue to routinely challenge your immune system with dietary indiscretions).

When you advise others here to use such treatments, you should mention the fact that your prednisone treatment limits your risk (or add that caveat to your signature line), because some people (especially newbies) are going to suffer unnecessarily if they are mislead, and don't recognize the risk. The bottom line is that in general, probiotics suck, for as many as 95 % of the people who have MC. They either don't work, or they cause the existing symptoms to become more severe. Yes, a few people can tolerate them, especially after they are in remission. But during the recovery period, precious few of us can handle probiotics without problems, and they can definitely derail many of the best-laid treatment plans.

Regarding the use of probiotics to treat depression. I can certainly see how probiotics might be just as effective as the medications currently available to treat depression, because if you look at the research submitted to the FDA as part of the approval application, many of the trials show that some of the medications are only slightly more effective than placebos, and apparently a few of them perform no better than placebos.

IOW, in view of the fact that many of the drugs approved for this class of treatment have rather limited proven efficacy, if the manufacturers of probiotics want to add treating depression to their lucrative marketing plan, they shouldn't have any problem accomplishing that goal. And I'm sure that they won't let that opportunity slip past them, if the FDA allows it, and as long as the products don't kill very many patients in the trials, the FDA will certainly approve them. And then they will be able to charge even more for those already over-priced products.

Tex

[Zizzle]

Hi Tex,
I did start this thread with the caveat that I'm on low-dose prednisone, but it doesn't hurt repeating it. I was on 10 mgs of prednisone when I started drinking water kefir, so it may have tempered any histamine reactions.

That said, I firmly believe that gut dysbiosis is behind MC and virtually all autoimmune conditions. Yes, certain probiotics are likely to make us feel worse, but I'm convinced others may be the key to healing. Probiotics seem to have altered my entire body chemistry -- I was feeling like a zombie, with dry, ashen, ulcerating skin, unpleasant body odor, diarrhea (even on prednisone), etc. and it all turnaround so quickly. Dietary eliminations alone cannot explain it.

I know so many adults and kids with autoimmune issues, allergies, etc. and the more I learn about them, I can trace everything back to long courses of antibiotics. My DM rash first began after completing 3-4 courses of antibiotics for mastitis in the post-partum period. I blamed post-partum hormones, but looking back, it had to be the antibiotics. DUH!!

[tex]

Dietary eliminations alone cannot explain it.

Are you sure? Your improvement appears to correlate very, very closely with your decision to finally get serious about your diet, a couple of weeks or so ago. I'm very happy to see that you're feeling so much better, but frankly, I'm concerned by your last post in your other thread:

Partial elimination or nuclear Autoimmune Protocol??

It appears that your diet changes are helping certain symptoms, but on the other hand, something that you are doing is apparently causing your rash to nor only continue, but to become more severe. And the weight loss is concerning, especially in view of your excessively low blood pressure, which is probably due to dehydration. Something is clearly challenging/provoking your immune system, and that something is almost surely the kefir (unless your diet has been compromised).

Your doctors are concerned for good reason, and now I'm concerned. I agree with you that taking an immune system suppressant this time of year, and in your situation, would be very undesirable from a risk standpoint.

Why not truly give the diet a chance to work, by really buckling down and making no concessions, taking no prisoners, etc., and not provoking your immune system in any way, so that the rash will have a maximum opportunity to heal, for the full 6-week period? You have only 6 weeks to turn things around, but that's plenty of time, if you make the most of it. Everyone here wants to see you free of that rash, as much as you do, and we're all pulling for you. Show your rheumatologist how it's done.

Tex

[Zizzle]

Hi Tex,
Nothing is making my rash worse, other than this week's prednisone taper (2.5 mgs) and my daughter getting sick. I actually feel great, and the rash has steadily improved over the last month. I thought I was home free last week! This temperamental, stupid rash is really a day-to-day kind of thing. I have not cheated on the AIP diet other than my trip to Texas where I ate eggs, potato chips, and a Lara Bar containing cashews. That's why I'm losing weight. This diet is so darn restrictive!! I've combined AIP with my MRT results, so there is little left to eat!

I'm probably low on salt because I eat no chips, grains or processed foods of any kind. I need to remember to heavily salt my meat and vegetables and drink like crazy. Low BP is nothing new for me. I should remember to eat olives too.

I am committed to the diet 100%, and part of the diet is heavy emphasis on probiotics (daily and high volume), so I'm continuing the water kefir too, so long as it does not produce any noticeable symptoms like D or histamine reactions. Several other diets like GAPS also rely heavily on probiotics to restore balance, so I'm all in.

[tex]

Zizzle,

FWIW, I respect your decision to follow that treatment plan — we all have to develop and follow a treatment plan that we feel will be best for our own particular situation. So you have my support and best wishes for a successful outcome.

I do recall that you had low blood pressure issues previously. That may be built into your genetics.

Good luck with this, and I hope you can meet your goal.

Tex

[gluten]

Hi Zizzle, Thank you for your research into the bacteria connection How many people that have taken NASIDS or courses of antibiotics developed a colitis? I had many courses of antibiotics before the dx with MD and MC. There is research emerging rapidly that shows how the use of different strains of probiotics are benefical. Including some that produce histamine, some that are neutral and some that reduce histamine. I will post the sites with the information. I have been interested in the bacteria connection after reading the medical definition of "Dystrophy" many years ago. "Defective and faulty nutrition, especially in the muscular dsytrophies" You have strengthened my hope that I can beat both the MC and the muscle issues. Jon

[tex]

As I pointed out in the book, probiotics have not shown promising results in connection with their use to treat Crohn's disease, so it's very unlikely that they would show significantly different results for MC, because the two syndromes have much more in common than either one when compared with UC, for example. Check out the results of the randomized controlled trials discussed in the article at the link below. Despite all the hype that we hear about treating IBDs with probiotics, it appears than in every trial, probiotics did no better than placebos, causing the author of the study to conclude that:

Probiotics do not seem to be a therapeutic option for patients with Crohn's disease, either in the acute phase or for maintenance

Probiotics for Crohn's disease: what have we learned?

That article is now 7 years old, so it's tempting to claim that it might contain obsolete data. Well, here are some current data, and they don't appear to be any better:

Despite previous data showing beneficial effects, the probiotic Saccharomuces boulardii (S. boulardii) does not prevent clinical relapse in patients with Crohn's disease, according to a new study in Clinical Gastroenterology and Hepatology, the official clinical practice journal of the American Gastroenterological Association.

Probiotics Do Not Prevent Relapse in Crohn's Disease Patients

Promoters of probiotics are everywhere (because there's a hell of a lot of money at stake here), pontificating on the use of probiotics to cure everything from hangnail to IBDs, but despite all the hype, the research simply doesn't support those glowing claims. It's mostly just wishful thinking disguised as half-truths.

I'm not saying that probiotics are totally without merit, surely they are useful for some purposes — I'm just pointing out that they are useless for treating Crohn's and MC. I wish I had just one-tenth of one percent of all the money wasted on probiotics in this country. It would probably drive me nuts trying to figure out how to spend it all.

Tex

[dfpowell]

Tex,

Thanks for the update on probiotics, I tried them just for a day several months ago and had an adverse reaction so I'm done spending my money on them!

[Zizzle]

I'm in an interesting paradox... I stopped drinking water kefir for 4 days when we traveled for the holidays, and now I have massive D (after 2 months of perfect normans and great digestion). Granted, I imagine I may have been glutened at a restaurant where we had dinner, but I've taken other chances with gluten cross-contamination over Thanksgiving and Christmas, and nothing happened, other than minor bloating.

The other issue is, despite my cheating on my autoimmune paleo diet over the last 5 days (had to go crazy at a GF bakery in NYC, some muffins had nuts, and ate some tomato soup...oh, and a couple of shrimp...and a piece bacon), my rash is actually getting better! I even tapered prednisone (1.5 mgs) starting yesterday.

I don't get it?? Could water kefir be helping the MC but aggravating the rash at the same time?? Maybe it has nothing to do with water kefir, and I'm just getting more sleep, relaxing and exercising more?

I read a post by a patient with SIBO, who said water kefir and any probiotics containing lactobacillus are bad because they make the SIBO worse, whereas bifidus makes it better. I recall I had stool testing a year ago that showed I had surprising good/high levels of lactobacillus. Maybe I need bifidus only, instead of broad-spectrum probiotics? I'm so confused.

But I'm starting the water kefir again in the morning. Will let you know if the D or the rash react in a good or bad way...

Happy New Year Potty People!!

[Zizzle]

Another update...a local university opened a Myositis Center last year, and they have a female dermatologist who is very active in research on the skin manifestations of DM. I'm calling tomorrow to make an appt for a second option, and ultimately (hopefully) fire my current rheumy and dermatologist. I had a long chat with a local DM patient who had seen both my docs and was underwhelmed by their inexperience. She's worse off than me with muscle issues and scleroderma, but hers developed during her first pregnancy in 2004 - same year as me, and we are the same age. We work 2 blocks away from each other, and live within 2 miles of each other. She said she tried a GF diet and it gave her massive D, so she eats EXTRA gluten . Her son is mildly autistic. Interestingly, she said Prozac healed her mechanics hands and DM rash. She has no idea why. Something about serotonin involved here?? The mystery keeps widening...