Future for PANDAS treatment

[Guest pandas16]

I really have been reading quite a lot and I really think the future of PANDAS treatment- I mean like a cure is with probiotics. I was just wondering if anyone else feels the same way? The more I read, the more I see that even IVIG and PEX don't really get at the root cause of autoimmunity. I think it's all about cytokines. (Just an opinion though) Any thoughts?

[dcmom]

Can you elaborate?

 

I feel less focused on a cure, these days, and more on proper and aggressive "management". Gosh, quality of life for my kids could be much better if we could get the treatment they need (pex) immediately, and as often as needed!

 

We do probiotics- but in a sense only to counter the antibiotic- wondering if we should be doing more?

[MomWithOCDSon]

I'm interested in some greater elaboration too, Pandas16. What would the probiotics bring to the picture that other interventions do not?

 

As for increased levels of probiotics, that has been advocated before on this forum, and we tried it here, as well. At one point, we had DS taking more than 250 billion units daily of various strains: sach b., bifo, lactobillus g., etc. We did this for about 6 months, but finally had to back down because DS was suffering with unending gas; it would make him miserable all day.

 

Now we've settled at about 125 billion units daily. The gas pains have subsided entirely, and there're no signs of yeast in DS, either. He has, however, suffered another flare thanks to a strep-filled winter at school.

 

Is it possible that his previous non-flare condition was attributable to the heftier probiotics? And if so, what does one do about the gas?

[sf_mom]

I am a huge believe that HD-Probiotics ADD to the successful treatment of PANDAS and Chronic Infections. We give our older DS 1.5 trillion units per day '11 different strains' plus prebiotic 'Epicor' for yeast and a mix of anti-fungals. Our younger 3 year old twins take approximately a trillion probiotic units per day ... all in conjunction with heavy detox. Our goal is repair gut and to normalize PH Balances to more alkaline body verses acidic. We've been doing this for approximately 1 1/2 years with great results. PH are finally close to normalizing in older DS. It takes time to normalize PHs since chronic infection thrive in acidic environment and my children have been impacted since birth.

 

Here is a great article on probiotics... posted before.

 

http://markbrudnak.com/Articles/probiotics_autoimmune_anti.htm

 

Another great source of what each strain helps to combat.

 

http://www.probiotic.org/index.htm

 

There are a couple good books available on body PH: 'Alkalize or Die: Superior Health Through Proper Alkaline-Acid Balance', 'The PH Miracle'.... These books address PH Balance via what we eat and not via detox method (our approach) but the concept is the same.

 

-Wendy

Edited May 7, 2011 by SF Mom

[kferricks]

charcoal should help with the gas

[MomWithOCDSon]

charcoal should help with the gas

 

We tried bentonite clay, and it did help some, but it didn't relieve it entirely.

 

I have no doubt that gut health is tied in closely with overall physical and mental health, particularly given as serotonin is manufactured in the gut as well as the brain. I'm just not clear on how more of a good thing is necessarily better.

 

So, in plain English for those of us non-scientific types: what do probiotics have to do with cytokines on a long-term, ongoing basis?

[sf_mom]

Hope this helps.

 

Probiotics play an essential role in the intestinal mucosa barrier, including modulating intestinal immune response and competitively inhibiting the adhesion of pathogenic bacteria to the epithelial wall of the intestine. Intestinal epithelium plays an important role in innate immunity. When stimulated by cytokines, such as TNF-a, the intestinal epithelia release pro-inflammatory cytokines, including IL-8 and IL-10. However, in some gastrointestinal diseases, such as inflammatory bowel diseases (IBD) and acute gastroenteritis, cytokines are activated and produce excessive inflammatory products negatively affecting the immunological capacity of the epithelial cells. Resident Bifidobacterium and Lactobacillus actively inhibit the pro-inflammatory response by inhibiting the secretion of IL-8, thereby suggesting the use of probiotics in the management of intestinal diseases.5 This has vast applications for ‘quenching’ a potentially out-of-control immune system seen in autoimmune diseases and disorders of inflammation.

 

-Wendy

[Chemar]

this is not PANDAS related, but I just wanted to mention that for some people with IBD like my son, who has Crohn's Disease, probiotic supplements per se seem to make things worse!

He used to tolerate organic plain kefir and yoghurt, but since he went dairy free, is no longer using those. he has actually found a lot more benefit from prebiotic foods, teas etc along with the anti-inflamm diet and supps

 

we have heard from some other people with Crohn's and other IBDs that they also find some probiotics seem to cause flare ups

[Guest pandas16]

this is not PANDAS related, but I just wanted to mention that for some people with IBD like my son, who has Crohn's Disease, probiotic supplements per se seem to make things worse!

He used to tolerate organic plain kefir and yoghurt, but since he went dairy free, is no longer using those. he has actually found a lot more benefit from prebiotic foods, teas etc along with the anti-inflamm diet and supps

 

we have heard from some other people with Crohn's and other IBDs that they also find some probiotics seem to cause flare ups

 

Is your son immunodeficient?

[Chemar]

Crohn's is an auto-immune illness

 

he is also PITANDS

[SSS]

My personal opinion is probiotics are way too individualized per specific person.

Example: Pandas16, you say you can take the strep strain probiotics no problem.

My pandas dd6, absolutely cannot tolerate the strep strain probiotic- has an immediate effect.

I have done a LOT of probiotics with her- bought $100 a bottle stuff, high count, do a test, still I don't have beneficial flora lining her gut.

So, I changed it all up again, to different strains and brands.

Some will say fermented kefir is the ticket.

Some can't do inlun (sp.?) in their probiotics.

Some have to have D-lactate free.

 

HD-IVIG HAS brought us the most effective treatment. We were at psychotic exorsist breakdowns, which were frightening enough to almost call an ambulance.

Since IVIG, we have not had one of those. Are things perfect? No. But better!

I don't what our future road will look like; but I do agree having the gut/immune system healed up is a huge piece, at least for us it seems.

Edited May 7, 2011 by S & S

[LNN]

My personal opinion is probiotics are way too individualized per specific person.

 

I think you're right. If this article's theory pans out, then how much and what kind of probiotic depends on the individual's "gut type". It could also be why some kids do well on one abx or supplement and others don't.

 

http://www.nytimes.com/2011/04/21/science/21gut.html?_r=1

 

But we're a long way from being able to say there's one single protocol that works just as much as I doubt there's one single trigger that put us all on this same journey. Until this science gets further along, unfortunately, all we can do is respectfully listen to what works for others and what didn't, maybe give it a try and hope for the best.

[MomWithOCDSon]

Hope this helps.

 

Probiotics play an essential role in the intestinal mucosa barrier, including modulating intestinal immune response and competitively inhibiting the adhesion of pathogenic bacteria to the epithelial wall of the intestine. Intestinal epithelium plays an important role in innate immunity. When stimulated by cytokines, such as TNF-a, the intestinal epithelia release pro-inflammatory cytokines, including IL-8 and IL-10. However, in some gastrointestinal diseases, such as inflammatory bowel diseases (IBD) and acute gastroenteritis, cytokines are activated and produce excessive inflammatory products negatively affecting the immunological capacity of the epithelial cells. Resident Bifidobacterium and Lactobacillus actively inhibit the pro-inflammatory response by inhibiting the secretion of IL-8, thereby suggesting the use of probiotics in the management of intestinal diseases.5 This has vast applications for ‘quenching’ a potentially out-of-control immune system seen in autoimmune diseases and disorders of inflammation.

 

-Wendy

 

Okay, thanks. But still, isn't there a "tipping point," an "ideal" gut flora population, if you will, for each individual? Why does it follow, necessarily, that pumping more and more flora into a person always results in "better" health? How can one gut possibly harbor and/or synthesize all this additionally introduced flora, rather than send some of it, at least, to waste? I can certainly understand that, while on antibiotics or consistently ingesting a diet that is detrimental to gut flora balance, one would want to supplement, maybe even aggressively. But flora supplementation at massive levels? How is that more beneficial than the "right" level?

[Worried_Dad]

this is not PANDAS related, but I just wanted to mention that for some people with IBD like my son, who has Crohn's Disease, probiotic supplements per se seem to make things worse!

He used to tolerate organic plain kefir and yoghurt, but since he went dairy free, is no longer using those. he has actually found a lot more benefit from prebiotic foods, teas etc along with the anti-inflamm diet and supps

 

we have heard from some other people with Crohn's and other IBDs that they also find some probiotics seem to cause flare ups

 

This describes my experience perfectly! I have Crohn's and have tried many different probiotics while searching for the "right one" since emerging research indicates that they show promise for IBD. So far, they've all made me miserable and I've been forced to discontinue. Still searching for that "magic formula"....

[sf_mom]

I know..... I often ask the same question.

 

We've worked with a nutritionist that has experience in these high levels of probiotics. She has worked with many chronically sick individuals. Was chronically sick herself for over 10 years and has been in remission for 16 years. A lot of this felt like blind faith/hand holding originally but its been working so I tend to believe more than disbelieve everything she has directed us on. Her position is about 50% of the probiotics gets wiped out by antibiotic use alone. The gut is weak due to illness so you've got a lot of catching up to do. She is not in favor of antibiotics use at all and feels you can achieve health by repairing gut with probiotics, detoxifying the body and monitoring PHs. However, this process can take over two years or more depending on level of probiotic to see results. Many others are on lesser degree of probiotic than our kids. My kids tolerate it well and will take it. We will eventually wind down from this amount because it will be TOO MUCH and have adverse effects when the gut is better.

 

I believe the monitoring of PH's via food intake/alkaline water has a similar effect of better gut flora. Its just a hard diet to follow for a child. No diary, no sugar, no red meat, no eggs, mostly green diet, etc. The concepts are very interesting in the books I highlighted and worth the read.

 

-Wendy