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Your thoughts on probiotics with strep in them?


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I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it.

 

I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!!

 

Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it!

 

I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!!

 

Any thoughts, experience??

 

Stephanie

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My son reacted very badly to them and he's a PANDAS/PITAND. Any microbe any sufficient numbers is capable of "turning on" an immune response, specific or nonspecific. I stayed away from the dried preparations. He is fine with Kefir, which is a live culture and just as effective, theoretically.

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Does your child eat yogurt? I am wondering if I need to be THAT uptight about this!! Unfortunately, I AM that uptight b/c I am afraid to give him any more yogurt!! :)

 

This disease play weird tricks with our heads!!!

 

Stephanie

 

I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it.

 

I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!!

 

Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it!

 

I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!!

 

Any thoughts, experience??

 

Stephanie

 

 

We have never tried a probiotic with strep in it, as I am literally scared to death of "anything strep" at this point! The probiotic that we use is Klaire Ther-Biotic Detox Support. It has 50+ billion CFUs & no strep.

 

- Karen

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I remember you posting about this. You may have a good point. In our case we don't have a choice though b/c when he was on low numbers of probiotics he developed a nasty bacterial infection (klebsiella) from the antibiotics. When I raised the probiotics to 400 bill he was able to tolerate the antibiotics better and his aggression went away. But I am going to ask the doctor about what you are saying b/c I am just curious what his response will be. I know he will tell me that I have no choice, but still I'm wondering if he has thought of that...

 

Stephanie

 

My son reacted very badly to them and he's a PANDAS/PITAND. Any microbe any sufficient numbers is capable of "turning on" an immune response, specific or nonspecific. I stayed away from the dried preparations. He is fine with Kefir, which is a live culture and just as effective, theoretically.
Edited by Stephanie2
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I meant to add that my theory (I have a small amount of education/training in microbiology) about the reason these kids react to the "new" probiotics is this: The yogurts and kefirs that you can buy in the grocery store are very familiar to your gut. These have been around a long time. You consume them any time you consume yogurt. Recently, there has been a flurry of "engineered" bacterial probiotics, as well as yeast probiotics, which are claimed to have super powers- ability to withstand hydrochloric acid in the stomach, etc. These bacteria appear different to your gut. Your gut, remember, is where a huge portion of active immune cells are. The astronomical bacterial cell numbers, coupled with the "look" of these new fangled cells to your gut immune cells MAY trigger an unusually violent immune response. Kefir contains all the beneficial microbiota that the gut needs. I would stick with that.

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stephanie2,

 

What are the strep A probiotic names so i know what to look for? I always suspected that giving probiotic or coconut yogurt seems to spike my son's OCDs, but not certain as OCD wax & wane.

 

Thx for the very interesting info on strep probiotics.

 

Pat

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Any probiotic strain that starts with streptococcus, or just s., as in s. thermophilis

 

Stephanie

 

stephanie2,

 

What are the strep A probiotic names so i know what to look for? I always suspected that giving probiotic or coconut yogurt seems to spike my son's OCDs, but not certain as OCD wax & wane.

 

Thx for the very interesting info on strep probiotics.

 

Pat

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I increased slowly. I would increase by 25 or 50 bill every 3 or 4 days. I didn't do this at the beginning, but toward the end I started using activated charcoal to decrease the die-off symptoms. It made a HUGE difference! I was kicking myself for not doing it all along. So I would give one dose of probiotic in the morning, then 45 minutes later give 2 activated charcoal capsules (had to open and put in juice cuz my son doesnt' swallow pills). Then I would do the same thing at night. It's a pain b/c everything has to be separated (along with the antibiotics) but it made life more bearable during the increase. I use (and so does SFmom) Custom Probiotics. If your son is casein free, they have a formula called "D-lactate free". Two adult scoops is 400 bill, so I give one scoop am and one pm.

 

Stephanie

 

Because of allergy - he is dairy/casein free.

I haven't noticed any adverse reaction with the probiotic he takes. I have been thinking about increasing the dosage after reading SF Mom's posts regarding probiotics. I notice you said you give 400 billion CFU's. Did you build up to that? If so, how slowly, etc.

 

Thanks,

Karen

 

 

 

Does your child eat yogurt? I am wondering if I need to be THAT uptight about this!! Unfortunately, I AM that uptight b/c I am afraid to give him any more yogurt!! :wacko:

 

This disease play weird tricks with our heads!!!

 

Stephanie

 

I am a member of several autism message boards on yahoo. Many of the autistic kids also have pandas so I join in on those "conversations" all the time. One thing that comes up quite a bit is the idea that the "strep" probiotics can cause pandas symptoms. Most moms SWEAR that their kids cannot tolerate these probiotics, and some even say that their kids even react to yogurt that has strep cultures in it.

 

I know that the theory is that the kids only react to Group A strep, but some feel that it is the shape of the microbe (all strep is shaped similar?) that causes the symptoms, so any kind of strep could possibly affect these kids. I have NO idea if this is accurate, but I have to tell you that these moms really do know what they are talking about and almost everything they say comes to fruition in my house!!

 

Anyway, my point is this. I DID try a probiotic with "strep" in it last summer and sure enough my kid was off the wall for 10 days, even developed a tic during that time. By day 10 I decided to look at the bottle and I then saw that there was strep in it so I stopped it immediately. After 3 days he went back to normal and the tic stopped. I don't think it was "die-off" reaction b/c his typical die-off only lasts about 3 or 4 days. I gave it 10 that time and couldn't take another minute of it!

 

I was shopping at Whole Foods tonight and looking at some soy yogurt that has live cultures in it and I noticed that ALL of them have S. thermophilus in it. I bought it anyway, but makes me wonder if I should be giving it to my child!!

 

Any thoughts, experience??

 

Stephanie

 

 

We have never tried a probiotic with strep in it, as I am literally scared to death of "anything strep" at this point! The probiotic that we use is Klaire Ther-Biotic Detox Support. It has 50+ billion CFUs & no strep.

 

- Karen

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I'm thinking why risk it if there are other brands out there that don't have any strep strands in them? What are the yogurt brands that don't have any strep in them? Anyone know (or have some in the fridge to check?)I just rchecked probiotics we have on hand (I like to mix up the brands so he ges as many different strands as possible)

Lifeway Organic Kefir bottle - it has two that start with "s."...

Yum Yum Dophilis" - these are chewable tabs, and they don not have any" s." strands

Attune Probaotic Granoloa Bars - no "s." strands

 

We also eat alot of yoplait yogurt...but I don't happend to have any in fridge right now.

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I believe the L. stands for Lactobacillus, which isn't strep.

But as far as I know, strep would be in anything labelled with S. Lactus or S. Thermophilus.

 

At any rate, here's an interesting paper on a study that mentions the function of the strep in these kinds of food cultures...for those who have children who are intolerant. It's an old study, but I imagine probably still pertinant. As I understand this (none of us are lactose intolerant so I admit I don't read up on it much), the cultures that have strep are also higher in lactase.

 

http://jds.fass.org/cgi/reprint/59/12/2031.pdf

 

Just as an aside, S. Thermophilus is also the starter for mozzarella cheese. Pizza, anyone?

I haven't noticed if we've had any mild flairs with yogurt, but I hadn't known this either so I wasn't really looking.

S. Thermophilus isn't classified as GAS though, it's classified as a LAB (lactic acid bacteria), so I'd be curious if an informal survey on this group would show it's only those children who are lactic acid sensitive that react??

 

Really though, I don't know what to think of all this. I'll withhold opinion (since I don't really have one) but if we're going to theorize ANY strep can cause PANDAS symptoms and not just strep A, then I will point out in a devil's advocate sort of way that S. mutans are also in the strep genus, are the leading cause of tooth decay, and are carried by virtually everyone.

 

Furthermore, while wondering how I came in anyway to suddenly be defending the nasty little bugger strep, I will note that last February my PANDAS son was diagnosed with mild pneumonia. S. pneumonia, which also a strep genus, is different from S. pyogenes, which are the leading cause of throat/tonsil infections... along with ear infections, sinus infections, bone infections and arthritis. Strep A is also the cause of impetigo and cellulitis. See below on M proteins...while S. pneumonia is "technically" a GAS, as I understand it, he remarkably did not flair. He DID however flair when his sister (not him) tested positive for strep throat a couple months later.

 

What is more fascinating to me is something I read recently regarding the M protein classifies which a strep bacteria as a group A strep:

"There are more than a hundred varieties of group A Streptococcus each of which is distinguished by the type of 'M' protein it has. The M proteins serve as important virulence factors that help the organism resist phagocytosis (cell eating). Two M18 proteins in particular caught the attention of the researchers. They look like another M18 protein, called SPEC, which triggers a massive immune reaction in host cells and leads to streptococcal toxic shock syndrome, these types of protein are called superantigens, which allow the bacterium to survive in the host for an extended period of time."

 

So.... not being a doctor, a geneticist, a scientist or a researcher, I ask:

Is it possible there is a specific type of strep A bacteria not yet identified with a SPECIFIC TYPE OF M PROTEIN (or some other uniqueness) that causes PANDAS?

 

I don't know that anyone has or has not so specifically looked at exactly WHAT strep A it is that our children have had. Does anyone know if the rapid strep tests or cultures are specific only to ANY strep A or just to the strep that causes strep throat?

 

Would it be possible this further explains why only certain antibiotics seem to have the best effect on PANDAS strep?

 

I could be talking out of turn here. My degree is not in medicine or genetics. ;-P

Edited by poetmom
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No that would not be strep...

 

Mine has L. THERMOPHILUS I take it, that is still strep??? DAMN!

 

 

Any probiotic strain that starts with streptococcus, or just s., as in s. thermophilis

 

Stephanie

 

stephanie2,

 

What are the strep A probiotic names so i know what to look for? I always suspected that giving probiotic or coconut yogurt seems to spike my son's OCDs, but not certain as OCD wax & wane.

 

Thx for the very interesting info on strep probiotics.

 

Pat

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Wow, you raise a lot of questions, none of which I could possibly begin to answer. Like I've said before, it would be great to get the docs, researchers, parents together for some type of round table discussion, and with all of your questions, I would think a true "strep" specialist would also help put the pieces of the puzzle together. I don't think there is any one doctor or researcher who has all those answers and so I think we have to rely on each other's experiences at this point for some aspects of this illness.

 

Going back to the autism parents (while I consider myself a parent of a recovered ASD child, and one who was borderline), the DAN protocol was basically built on the experiences of the parents and the doctors who were also autism parents. It has grown from there. If we can get a bunch of docs to listen to us pandas parents (which many of them are), I think they could learn alot...

 

Something else I just thought of is that maybe the amounts of strep in the yogurt is simply not enought to raise a reaction, but maybe the amount of strep in probiotics could cause a reaction.

Stephanie

 

I believe the L. stands for Lactobacillus, which isn't strep.

But as far as I know, strep would be in anything labelled with S. Lactus or S. Thermophilus.

 

At any rate, here's an interesting paper on a study that mentions the function of the strep in these kinds of food cultures...for those who have children who are intolerant. It's an old study, but I imagine probably still pertinant. As I understand this (none of us are lactose intolerant so I admit I don't read up on it much), the cultures that have strep are also higher in lactase.

 

http://jds.fass.org/cgi/reprint/59/12/2031.pdf

 

Just as an aside, S. Thermophilus is also the starter for mozzarella cheese. Pizza, anyone?

I haven't noticed if we've had any mild flairs with yogurt, but I hadn't known this either so I wasn't really looking.

S. Thermophilus isn't classified as GAS though, it's classified as a LAB (lactic acid bacteria), so I'd be curious if an informal survey on this group would show it's only those children who are lactic acid sensitive that react??

 

Really though, I don't know what to think of all this. I'll withhold opinion (since I don't really have one) but if we're going to theorize ANY strep can cause PANDAS symptoms and not just strep A, then I will point out in a devil's advocate sort of way that S. mutans are also in the strep genus, are the leading cause of tooth decay, and are carried by virtually everyone.

 

Furthermore, while wondering how I came in anyway to suddenly be defending the nasty little bugger strep, I will note that last February my PANDAS son was diagnosed with mild pneumonia. S. pneumonia, which also a strep genus, is different from S. pyogenes, which are the leading cause of throat/tonsil infections... along with ear infections, sinus infections, bone infections and arthritis. Strep A is also the cause of impetigo and cellulitis. See below on M proteins...while S. pneumonia is "technically" a GAS, as I understand it, he remarkably did not flair. He DID however flair when his sister (not him) tested positive for strep throat a couple months later.

 

What is more fascinating to me is something I read recently regarding the M protein classifies which a strep bacteria as a group A strep:

"There are more than a hundred varieties of group A Streptococcus each of which is distinguished by the type of 'M' protein it has. The M proteins serve as important virulence factors that help the organism resist phagocytosis (cell eating). Two M18 proteins in particular caught the attention of the researchers. They look like another M18 protein, called SPEC, which triggers a massive immune reaction in host cells and leads to streptococcal toxic shock syndrome, these types of protein are called superantigens, which allow the bacterium to survive in the host for an extended period of time."

 

So.... not being a doctor, a geneticist, a scientist or a researcher, I ask:

Is it possible there is a specific type of strep A bacteria not yet identified with a SPECIFIC TYPE OF M PROTEIN (or some other uniqueness) that causes PANDAS?

 

I don't know that anyone has or has not so specifically looked at exactly WHAT strep A it is that our children have had. Does anyone know if the rapid strep tests or cultures are specific only to ANY strep A or just to the strep that causes strep throat?

 

Would it be possible this further explains why only certain antibiotics seem to have the best effect on PANDAS strep?

 

I could be talking out of turn here. My degree is not in medicine or genetics. ;-P

Edited by Stephanie2
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Our Dan doctor told us to stop giving DS the probioitcs with the strep strain. I dont remember the name but it was a kirkman product and it has been several years since he stopped taking it. I also stopped giving him the coconut yogurt becasue of the strep strain. We are just avoiding it all together. You always hear about the good strep. Well I dont think even the good is good for our kids!

 

 

stephanie2,

 

What are the strep A probiotic names so i know what to look for? I always suspected that giving probiotic or coconut yogurt seems to spike my son's OCDs, but not certain as OCD wax & wane.

 

Thx for the very interesting info on strep probiotics.

 

Pat

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