Re: Opinions on Supernatant probiotic

[Guest guest]

Krassi, I believe it is the strep strain in the probiotic that is causing your sons tics. Many of us have tried probiotics with strep strains and it triggered more PANDAS symptoms. Have you tried Custom probiotics? They are very potent and do n ot have the strep strain. http://www.customprobiotics.com/ They even have a lactate free probiotic blend To: BorreliaMultipleInfectionsAndAutism Sent: Wednesday, August 1, 2012 1:26 AM Subject: Opinions on Supernatant probiotic

Hi all,

I wanted to get your opinion from those of you who have used the probiotic Supernatant by Bioimmersion for your kids (with clostridia and PANDAS). This probiotic has tested always the best for my son for the past 2 years (with ART testing, most recently 1 month ago). Before I was always hesitant to give it to my son because of the Streptococcus thermophilus strains that it has. However, because my son is still dealing with clostridia and since this probiotic is supposed to be very effective for clostridia (plus I was told the Streptococcus thermophilus is not live ) I decided to give it a try. So I started giving it 5 days ago for first time (1 capsule in the evening right before bed) and coincidently 2 days after that my son started having some strange body movements that he has never had before (I guess this is what they call it tics?) He started constantly moving his head sideways towards his shoulders like touching with his left/right ears his

shoulders and he does it constantly - the whole day, like he cannot help it. So I am wondering – is this some die-off of clostridia and should I stay longer on the probiotic or is this the Streptococcus thermophilus that is causing the OCD/tics movements and I should stop it? I guess my question is - how do you know when you hit the clostridia and having die-off or when things are simply getting worse?

Thanks in advance,

Krassi

[Guest guest]

At the beginning of our recovery journey, two of my kids got worse with

tics. We went with the die-off theory, and kept up the treatments. The

tics faded a little every day, and then pretty much were gone. Because

the tics decreased daily, I felt comfortable continuing treatments. So,

for us, it was die-off. But, I did increase treatments to help with the

die-off. Things that support digestion, liver function,

nerve-protection, anti-inflammatories (herbal), binders and detoxers.

But, keep in mind that some of these add to the die-off rather than

decrease it. I think Modifilan, turmeric, Mellatonin, Milk thistle, and

cod liver oil were helpful for us.

But. . . . . . since you are referring to probiotics, there is talk that

some probiotics create a worsening in our children due to allergies or

the way some strains trigger and over-reaction in some people. When I

used a probiotic that made me ill, I did not continue with it. Yes, I

have heard of many who used Strep strain probiotics who had bad

reactions, and typically they did not continue with it. Instead they

changed to a probiotic without either the Strep strain or the

Enterococcus strain (these are the two strains that people on the forums

feel they react to). Interestingly, I have found that my daughter who

reacts to the Strep stain in some probiotics, doesn't react to it in

others.

You may also hear of people using Sacch. Boulardii to help with the

Clostridia, so want to share that we also reacted well to some brands

and not well to others. So, brand is very important.

Love and prayers,

Heidi N

So I am wondering – is this some die-off of clostridia and should I stay

longer on the probiotic or is this the Streptococcus thermophilus that

is causing the OCD/tics movements and I should stop it? I guess my

question is - how do you know when you hit the clostridia and having

die-off or when things are simply getting worse?

Thanks in advance,

Krassi

[Guest guest]

I had a friend who's PANDAS son had started having severe tics and walking hunched over and dragging his foot, he had to be hospitalized and given antibiotics IV for strep! I would be careful about this if I were you! I don't know but it doesn't sound good to me! Just my opinion!

Opinions on Supernatant probiotic

Hi all,I wanted to get your opinion from those of you who have used the probiotic Supernatant by Bioimmersion for your kids (with clostridia and PANDAS). This probiotic has tested always the best for my son for the past 2 years (with ART testing, most recently 1 month ago). Before I was always hesitant to give it to my son because of the Streptococcus thermophilus strains that it has. However, because my son is still dealing with clostridia and since this probiotic is supposed to be very effective for clostridia (plus I was told the Streptococcus thermophilus is not live ) I decided to give it a try. So I started giving it 5 days ago for first time (1 capsule in the evening right before bed) and coincidently 2 days after that my son started having some strange body movements that he has never had before (I guess this is what they call it tics?) He started constantly moving his head sideways towards his shoulders like touching with his left/right ears his shoulders and he does it constantly - the whole day, like he cannot help it. So I am wondering – is this some die-off of clostridia and should I stay longer on the probiotic or is this the Streptococcus thermophilus that is causing the OCD/tics movements and I should stop it? I guess my question is - how do you know when you hit the clostridia and having die-off or when things are simply getting worse?Thanks in advance,Krassi

[Guest guest]



I second the custom probiotics, they do have a D-Lactate free one for autistic individuals. There are no strep strains!

Opinions on Supernatant probiotic

Hi all,I wanted to get your opinion from those of you who have used the probiotic Supernatant by Bioimmersion for your kids (with clostridia and PANDAS). This probiotic has tested always the best for my son for the past 2 years (with ART testing, most recently 1 month ago). Before I was always hesitant to give it to my son because of the Streptococcus thermophilus strains that it has. However, because my son is still dealing with clostridia and since this probiotic is supposed to be very effective for clostridia (plus I was told the Streptococcus thermophilus is not live ) I decided to give it a try. So I started giving it 5 days ago for first time (1 capsule in the evening right before bed) and coincidently 2 days after that my son started having some strange body movements that he has never had before (I guess this is what they call it tics?) He started constantly moving his head sideways towards his shoulders like touching with his left/right ears his shoulders and he does it constantly - the whole day, like he cannot help it. So I am wondering – is this some die-off of clostridia and should I stay longer on the probiotic or is this the Streptococcus thermophilus that is causing the OCD/tics movements and I should stop it? I guess my question is - how do you know when you hit the clostridia and having die-off or when things are simply getting worse?Thanks in advance,Krassi

[Guest guest]

I have followed along on this group for a while and tracked the mentioning of clostridia... 2 of our kids had that in their lab results -- I know some of you mentioned symptoms related to it - what symptoms? This is not really known in the Lyme world, where we come from. Our kids are doing very well, but there are some straggling symptoms and I've wondered if this might be a piece of it... thx for any insight,

[Guest guest]

The most common symptom of clostridia is diarrhea, which can be quite severe. It is often very smelly and difficult to control. Anne Mears, RN, MSN/IHmcfighter@... From: BorreliaMultipleInfectionsAndAutism [mailto:BorreliaMultipleInfectionsAndAutism ] On Behalf Of juliafwagner@...Sent: Wednesday, August 01, 2012 4:54 PMTo: BorreliaMultipleInfectionsAndAutism Subject: Re: Opinions on Supernatant probiotic I have followed along on this group for a while and tracked the mentioning of clostridia... 2 of our kids had that in their lab results -- I know some of you mentioned symptoms related to it - what symptoms? This is not really known in the Lyme world, where we come from. Our kids are doing very well, but there are some straggling symptoms and I've wondered if this might be a piece of it... thx for any insight,