What are your thoughts on this Probiotic article?

[Dedee]

Just wonder what everyone thinks about this person's experience?

 

 

http://www.regardingcaroline.com/probiotics.html

 

 

 

Dedee

[qannie47]

Interesting....I know I removed Kefier from my ds diet a couple weeks ago, thinking it was the blame for latest episode. What is missing is understanding what brought these tic/ocd behaviors on in the first place for this girl. She ended up on all these supplements for a reason. I assume she was not always on probiotics. I guess I'm not sure if I buy that probiotics can be blamed for origin of pandas/tics/ocd. It makes sense that they can aggravate these issues, but this article seems to imply probiotics as the root cause, and by removing them all of this child's problems went away.

[nicklemama]

Did you see how many probiotics she was taking? 7 capsules of culturelle, two Klaire products (one of which my son takes, the detox) and the custom blend? She was giving her daughter over 250 million a day. That's a lot. She also cut out the other biomed supplements, so who knows which did what. Everything in moderation. Too much of anything can't be good.

[LNN]

qannie - I've followed this blogger's journey intermittently for years. I don't think she's saying the probioitcs caused Pandas. This mom has done it all and recovered her child. I came away feeling like they'd gotten to a good place but not the place she knew in her heart was possible. Like all of us, she'd added a stable of supplements that served a purpose. But now she's found that the purpose may be done and now side effects may actually be part of the problem.

 

Deedee - thanks for posting. Great timing. DS has been off abx for 6 months and doing really, really well. But he has some residual adhd and tics and a stool test revealed yeast problems. For him, it isn't candida but sacc Boulardis that's the problem. Unlike some who tolerate it well, my son has always tanked on Sacc B supplements. So when we found overgrowth of Sacc B, the LLMD shrugged, until I said "Noooo - this is very bad for DS - he gets horrible OCD and tics from Sacc B". So he went on diflucan 6 weeks ago. The OCD went away within days and hasn't come back. The adhd and hypermotor stuff went away within a week. I was so stoked. But then, the tics came on in a big way. DS always tics from die off. So I was ok with it. Ride it out. We've survived lots of herxes. Except this herx hasn't stopped. After 5 weeks, it was bad enough that he couldn't hide it in school.

 

So last week, we took a diflucan holiday. The tics have subsided in a big way but now the adhd and muscle pain and brain fog and frustrations are coming back. It feels like fungal issues are still there. So re-started diflucan last night. But I've been wondering about probiotics and if they aren't contributing to the fungal problems instead of curing them. We switched to a high bifido probiotic 6 weeks ago when we started the diflucan and stopped the theralac (which based on stoll test wasn't keeping the bad yeast at bay). I've skipped probiotics altogether the past few nights, wondering if they're part of the problem. Coincidentally, DS has craved less carbs. Somehow it all seems tied together, I just can't figure out how yet.

 

So I'm taking this as a "sign" that this just might be something to re-examine. More is not always better. Maybe we need a probiotic holiday. i know my wallet would sure appreciate that!

[SSS]

LLM ((hugs))

 

Just wanted to point out, the blog entry posted was from 12/2012

and the sweet beautiful girl has had PANDAS

issues since removing all the probiotics.

 

I only point this out because when I read the blog article posted,

it read to me like removing the probiotics was the last step,

and this child was fully recovered.

Which I wish she was, like all the children here and my own.

[MomWithOCDSon]

I'll just add that, based on some information and a particularly vocal (and seemingly well-informed) forum member's posts back in the beginning of our PANDAS journey nearly 4 years ago now (wow!), we began a "high-dose probiotic" regimen with our DS. He was on antibiotics at the time, so it seemed like a good idea, and we were mixing the organisms up, so "overdoing" it via one strain or another didn't appear to be a problem. We used a fairly expensive blend from Renew Life, along with FloraStor and Culturelle, and we were up to over 200 billion units daily.

 

But DS just seemed to do better -- feel better -- on a lower dose. So once he was functional enough that he could articulate how he was feeling, what his gut was like, we started cutting back. Found that he was less gassy, less obsessed with respect to his digestion (what he could eat, what he couldn't, when he needed to use the washroom, when he didn't) on something like half that dose: around 100 billion units per day, again, still of a mixed variety. I will say that, unlike LLM, we never saw any particular behavioral responses, though now LLM's careful monitoring of her son's response has me wondering if perhaps my DS's higher level of "concern" over his tummy wasn't increased OCD rather than any real physical manifestation of discomfort. Hmmm.

 

At any rate, a few months later, the family that had previously been a frequent and vociferous proponent of massive probiotic doses began to post some other information/findings with respect to its child, with some prominent and troubling medical gut issues identified and requiring interventions. SO . . . that was one lesson in many for me that, however well intentioned, however well-informed, however experienced, interventions undertaken at significant magnitudes on the basis of anyone's (blogger, writer, parent, teacher, even therapist or doctor) indication is best done so with considerable thought and caution, if at all. While I realize there's some merit in "Extreme times call for extreme measures," one should be mindful of the potential for extreme consequences as a result.

[dut]

Hi

 

I was wondering if anyone has gone the food acquired probiotic route rather than supplements and if they have any info to offer with regards this discussion ? I'm thinking fermented veggies etc.

Edited October 17, 2013 by dut

[nicklemama]

I've been considering lowering DS 's dosing of probiotics. He's taking 100 billion Klaire Thera Detox. He's a gas factory. It's so hard to tell what's nearly 10 yo boy who loves to fart and loves to talk about it and what's really too much. He and his friends love joking about, talking about and passing gas. It would save me money too. Klaire is not cheap.

[qannie47]

Interesting...I was thinking maybe I would cut my ds back to every other day...plus, had a thought..the other day at Walgreen's, when I had a question about probiotic, the Pharmacist mentioned that Many doctors now prescribe them with abx...did anybody every link infection>probiotic>symptoms? I think we tend to link infection...a stretch, but I am open to anything at this point.

[rowingmom]

While DD was taking multiple abx, we were using about 75 billion mixed cultures: Culturelle, Align, RenewLife UltimateFlora daily.

 

Now with our herbal protocol I am giving everyone sauerkraut innoculated with the above mentioned cultures. 3 tbsp Mon, Wed, Fri. DH hates it, the kids eat it and I love it. I am hesitant to give more for fear of stirring up histamine reactions.

 

WildFermentation is a good site:

 

http://www.wildfermentation.com/making-sauerkraut-2/

 

 

Edited October 18, 2013 by rowingmom

[rowingmom]

Interesting...I was thinking maybe I would cut my ds back to every other day...plus, had a thought..the other day at Walgreen's, when I had a question about probiotic, the Pharmacist mentioned that Many doctors now prescribe them with abx...did anybody every link infection>probiotic>symptoms? I think we tend to link infection...a stretch, but I am open to anything at this point.

 

DD's symptoms appeared years before probiotics were initiated. I only started probiotics when DD started abx, although I changed her diet to gf before that (didn't help the IBS). Her IBS symptoms (can be a symptom of bartonella) disappeared as soon as we started abx and have not reappeared, independant of the amount of probiotics given.

[qannie47]

Yeah, my ds had his first 2 episodes before we even heard of probiotics....so I think it supports the idea that infections are the biggest culprit. That being said, I also get how too many or the wrong probiotics can exaserbate the problem. The complexity of this disorder seems to be the biggest problem.

[Dedee]

I really appreciate all the responses. My daughter is on antibiotics for her lyme & bartonella so I feel that she should have some type / amount of probiotics daily. She doesn't respond well to Sach. B. So I use Klaire brand. What I am evaluating is the amount. Some days I give her 50 billion units of one type and other days I give one hundred billion of another. I can't really tell much difference which ever I use. She also has constant constipation so we use various other things for that (Mag, bowel cleanse, etc). I was just interested to see what others thought on the subject. Thanks again.

 

Dedee

[LNN]

Hi

 

I was wondering if anyone has gone the food acquired probiotic route rather than supplements and if they have any info to offer with regards this discussion ? I'm thinking fermented veggies etc.

Tried sending you a PM but it said you can't receive messages...

 

check out this site: http://heal-thyself.ning.com/profiles/blogs/overwhelmed-where-to-start and specifically this blog http://heal-thyself.ning.com/profiles/blogs/whole-food-probiotics-101

[sf_mom]

We did very HD (750 billion units or more per day) multi strain probiotics based on the recommendation of our nutritionist for over two years. It did normalize color, regularity and form for all three kids. We worked up to those doses and did not notice any negative responses.

Year over year we have done comprehensive stool analysis and food allergy panel. Here is what we learned: Our children had chronic yeast, some low beneficial bacterial, low absorption, low pancreatic function with allergies to milk, eggs, cheese and casein. One had parasites and one had an opportunistic bacteria that I had never heard of but dangerous if it gets into the blood stream.

After about 2 years of elimination diet they no longer had sensitivities to these particular foods but now showed sensitives to Gluten. I read a very good book along the way called "Enzymes For Autism And Other Neurological Disorders". In the book they make a strong case for using enzymes to break down large proteins verses elimination diet due to the fact you may only chase food allergies to whatever is the predominate source of food. In our case, this was true. When we added a Dr. who specializes in biomedical treatments of autism to our team she recommended we add a stronger dose of protease for low absorption and pancreatic function along with Huston Enzymes to breakdown the large proteins of Gluten/Casein's plus lowered the dose of probiotic to 100 Billion per day. They are no longer on a elimination diet but eat very heathy foods including fermented vegetables and we rotate brands of probiotics.

We are treating the yeast with alternating days of HD nystatin and diflucan along with a few other therapies. In our experience the yeast is a real bear to treat as it has been on ongoing issue since our first stool analysis. It will form its own biofilms, deteriorate the mucus lining in the gut, grow tentacles that attach to the intestinal wall, throw off toxins that will make the intestine more acidic, etc. All this will essentially open the door to other opportunist bacteria and food allergies/sensitivities hence leaky gut. I also understand Bartonella will root itself in the intestinal wall. Some of these bacteria/viruses in the small intestine are thought to produce the nagalase enzyme.

 

"Elevated nagalase has a profound detrimental effect on the immune system. Elevated nagalase is often presumed to be related to microbes of viral origin or cancer. Viruses that are nagalase producers open the door to chronic infections."

 

"Hemagglutinin contains nagalase and is also found in flagella of some bacteria so it could also be the case that some bacteria may produce nagalase".

 

"Several intestinal bacteria are producers of nagalase. Editor's Note: I found this connection to be quite interesting; the gut is big."

 

See more at: http://www.betterhealthguy.com/gcmaf#sthash.t4IuZxZD.dpuf

 

Anyway I've got to run. The reason I mention all of the above is because it is all so interrelated. I can not express enough how valuable to comprehensive stool analysis has been for our family. I now put equal value in the absorption of vitamins/minerals and breakdown of proteins as I do supplementing with probiotics. At a minimum the comprehensive stool will tell you which good bacteria are low so you are supplementing with the proper strains.

Edited October 19, 2013 by SF Mom