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Probiotics and Exacerbation


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Guest pandas16

Since I've been on disability, I've been reading quite a bit during the moments when I can concentrate. Could the reason why PANDAS flares with certain probiotics have to do more with the ability of them to induce a th1 response and increase proinflammatory cytokines like Ifn y? I know Ifn y disrupts the blood brain barrier. Does what I'm saying make sense to anyone? It doesn't seem like strep thermophilus should be a problem, it seems more problematic about what the strain of probiotic can change in the intestine.

 

Btw for those struggling to find a probiotic that doesn't result in a hyper feeling THERALAC worked for me. It's supposed to balance th1 and th2. I attached the article. I tried over 20 brands of probiotics over the last 14 years.

 

http://www.master-supplements.com/10-07-09.aspx

 

 

I could be totally and completely wrong but it seems like its all in the gut. Pharmacology seems like a temporary bandaid and IVIG/PEX seem like a better band aid until the next infection...... but if you fix the gut and increase T reg cells and il-10, that could be a cure??? Couldn't it?

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Such an interesting question! I've just gone back to the testing we had done for ds17. The blurb that came with his stool screen suggests that overgrowths in Lactobacillus sp and undergrowths of Bifidobacterium sp are possible...so should that affect the sort of probiotic one should take? May not matter if antibiotics wipe out the lot...?

 

Whatever, we discovered ds had a leaky gut just before he had his worst PANDAS exacerbation with strep throat... and things have improved hugely as we've worked on healing his gut with a Biomed doctor, so I am tending to think they are linked in his case. Leaky gut may be part of the picture for some PANDAS cases - my conjecture only. For DS having virtually no E.coli in his gut seems to be key so we've been working on that. So far so good...

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Such an interesting question! I've just gone back to the testing we had done for ds17. The blurb that came with his stool screen suggests that overgrowths in Lactobacillus sp and undergrowths of Bifidobacterium sp are possible...so should that affect the sort of probiotic one should take? May not matter if antibiotics wipe out the lot...?

 

Whatever, we discovered ds had a leaky gut just before he had his worst PANDAS exacerbation with strep throat... and things have improved hugely as we've worked on healing his gut with a Biomed doctor, so I am tending to think they are linked in his case. Leaky gut may be part of the picture for some PANDAS cases - my conjecture only. For DS having virtually no E.coli in his gut seems to be key so we've been working on that. So far so good...

 

Hi Ozimum-- just curious, my dd6 showed no ecoli in the gut- that's a bad thing? How are you getting that in?

Right now I am giving massive probiotics (it seems to me)-- I use Klaire detox thera, culterelle, and Kartners. None have the strep strain- I've seen my dd6 react to strep strains in yogurts and probiotics before.

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Hi Tampicc,

I suspect every kid is going to have a different gut profile, so I'm thinking it's worth having a stool test done every so often to find out which anaerobes and aerobes are low (or overgrown) and supplement appropriately. (That's what we're doing with our Biomed/DAN! dr.)

 

Hi S&S,

There's a researcher here who believes that it's the E-coli in the gut which are responsible for the production of essential amino acids such as tyrosine, tryptophan etc, etc. He's saying that E.coli should be abundant in the gut and when numbers are reduced then other opportunist bacteria (strep, staph, clostridia etc etc) take over and their product is pathogenic, digestion is compromised, and so too the immune system. (Perfect conditions for PANDAS!) We are recolonising our son's gut with an E-coli strain according to our Biomed's protocols, along with a gut healing diet, and supplements including probiotics and enzymes. So far he's doing great...

 

Also, I understand that the strep in some probiotics are a different strain and are 'good' bacteria when in the right balance. So I guess it's a matter of finding the right balance because all bacteria can become 'bad' when overgrown...

Edited by Ozimum
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Such an interesting question! I've just gone back to the testing we had done for ds17. The blurb that came with his stool screen suggests that overgrowths in Lactobacillus sp and undergrowths of Bifidobacterium sp are possible...so should that affect the sort of probiotic one should take? May not matter if antibiotics wipe out the lot...?

 

Whatever, we discovered ds had a leaky gut just before he had his worst PANDAS exacerbation with strep throat... and things have improved hugely as we've worked on healing his gut with a Biomed doctor, so I am tending to think they are linked in his case. Leaky gut may be part of the picture for some PANDAS cases - my conjecture only. For DS having virtually no E.coli in his gut seems to be key so we've been working on that. So far so good...

Ozimum- May I ask what probiotics you use? Thanks.

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"Ozimum- May I ask what probiotics you use? Thanks."

 

Hi Philamom,

My son's stool screen revealed undergrowths of both the anaerobes Lactobaccillus and Bifidobacterium and overgrowths of Clostridium and he was put on probiotic brands made here in Australia.

 

One probiotic has Saccharomyces cereviiae (boulardii) 250mg and contains lactose. (Apparantly the S. Boulardii are more effective using lactose. It feeds on the lactose and also stimulates lactase to break it down. The stuff we use does not contain gluten/casein.) I believe Saccaromyces Boullardii is supposed to help to get rid of yeast but does not colonise itself and I think it kills clostridia and candida.

 

The other probiotic has Lactobacillus rhamnosus, L. casei, L. acidophilus, L. plantarum, L. fermentum, Bifidbacterium lactis, B. breve, B. bifidum, and S. thermophilus. (45 billion CFUs p.capsule)

 

L. rhamnosus is supposed to be an important and aggressive coloniser, wheras S. Boulardii is thought to be a more a long term fix.

 

And the E.coli strain, and enzymes too. Hope that helps...

Edited by Ozimum
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I'M SO CONFUSED!!!!! i would welcome any info anyone has about specific strains and how they might help/hurt our kids.

 

 

holy moly -- do you think an inappropriate strain/combo/dose of probiotic could cause inattentiveness and trouble with focus? this was not a problematic symptom at first.

 

ds9, 2nd pandas child, presented with symptoms in the fall/winter. was diagnosed with tic-borne illnesses, strep, CMV late december. many issues resolved relatively quickly -- joint pains, stomach complaints, irrational fears.

 

i got a new heavy dose ( 25 bill, 6 strain, custom probiotic) in early Feb. i noticed inattentiveness around 2-3 weeks after new probiotic. dr gave a homeopathic ADD remedy. things got worse. we went back to dr, who does a type of ART testing and said ds looked like was improving with infections. stopped the ADD. things are slightly better but still not back to pre-levels. i had been thinking this was kind of a morphing of symptoms. now with this thread, i'm wondering if it could be due to probiotic. it seems like the time frame matches up.

 

he's also having inappropriate upsets which previously was a slight symptom but not major.

 

i was taking this also but wondered if it was a too high dose for me. i think i'll take him off it and see what happens..

 

does anyone have a time frame for when i should see effects? i had thought good effects of probiotics dip after about 4 days without -- anyone know?

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I tend to think lack of focus and concentration is more to do with poor digestion, specifically the incomplete breakdown of protein - my take is based on the Biomed understanding of gluten and casein breaking down to opiode peptides which in turn affect concentration and focus. That's why the GF/CF diet tends to work for those with gut issues.

 

I am a fan of probiotics - antibiotics wipe out good bugs as well as bad, so replenishing good bacteria has to be a good thing. But like antibiotics, different probiotics do different things. Personally I rely on our Biomed doctor and testing to get the balance right...

 

Edit - confounded typos, sorry!

Edited by Ozimum
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"Ozimum- May I ask what probiotics you use? Thanks."

 

Hi Philamom,

My son's stool screen revealed undergrowths of both the anaerobes Lactobaccillus and Bifidobacterium and overgrowths of Clostridium and he was put on probiotic brands made here in Australia.

 

One probiotic has Saccharomyces cereviiae (boulardii) 250mg and contains lactose. (Apparantly the S. Boulardii are more effective using lactose. It feeds on the lactose and also stimulates lactase to break it down. The stuff we use does not contain gluten/casein.) I believe Saccaromyces Boullardii is supposed to help to get rid of yeast but does not colonise itself and I think it kills clostridia and candida.

 

The other probiotic has Lactobacillus rhamnosus, L. casei, L. acidophilus, L. plantarum, L. fermentum, Bifidbacterium lactis, B. breve, B. bifidum, and S. thermophilus. (45 billion CFUs p.capsule)

 

L. rhamnosus is supposed to be an important and aggressive coloniser, wheras S. Boulardii is thought to be a more a long term fix.

 

And the E.coli strain, and enzymes too. Hope that helps...

Thanks.

My daughter had a Genova stool test done in August which revealed no growth for E. Coli & Lactobacillus (should be 2+ or greater) and a 3+ for Bifidobacterium (should be 4+). It also revealed alpha haemolytic Streptococcus at 4+ (Non-Pathogen). She has had c-diff and Giardia in the past, but not at the time this test was done. Since then, I've been supplementing with more/better probiotics. I should re-check the levels.

 

We had an "OAT" urine culture by Great Plains done not too long ago. It was good...low levels of clostridia. I'll have to pull out the results to see if measured the E.Coli.

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Thank you for posting this, Pandas16

I know my son's pandas is highly connected to his gut problem and I always assumed it is the gut bacteria( bad ones) that is causing it but I never thought different probiotics actually make differences to my son's pandas. As my son has highly sensitive gut it is very possible that even probiotics if not the right kind could cause havoc to his pandas.

I am glad you are doing better.

 

pathfinder

Edited by pathfinder
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My understanding of strep strains in probiotics is this:

 

The PANDAS autoimmune reaction is due to an amino acid sequence in strep that is similar to an amino acid sequence in the basal ganglia. The body recognizes the sequence in the basal ganglia, mistakes it for strep, and attacks itself with antibodies against strep. When an active strep infection is present, you get an exacerbation because the body is revving up the antibody production against strep. Those antibodies are crossing the blood brain barrier and attacking the basal ganglia more intensely. Strep strains in probiotics and yogurt can have similar amino acid sequences that can rev-up antibody production in the same way on PANDAS kids that the "bad" strep does.

 

 

Kara

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Guest pandas16

http://klaire.com/images/PANDAS.pdf this article explains how if anything strep thermophilus should help PANDAS.

 

Current evidence indicates there is no basis for

believing S. thermophilus provokes autoimmune reactions as does

GABHS and rather suggests this probiotic organism can protect

against growth of GABHS and other potentially harmful streptococcal

species in humans

 

 

I really think its more about which cytokines the probiotic strains induce.

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