Probiotics | An unexpected cause of my daughter’s autoimmune issues

Probiotics are everywhere these days. “With added probiotic cultures” has become a marketing catchphrase we can’t escape.

Their promise to boost our immune system sounds innocent enough. Who doesn’t want an extra daily surge of immune power?

The short answer is… most people!

In fact, “boosting” our immune system all of the time can cause more harm than good.

And although we rarely hear anything but accolades for probiotics, there are some skeletons in the closet that people seldom discuss.

The first is that daily ingesting of most probiotics can overstimulate the immune system (offset the balance) and increase autoimmune responses.

We will share a list of which probiotics should be used with caution, but first, a brief explanation of the balance needed in our immune system may help.

th1th2-balance-supplements.pngThe T-helper (Th) cells in our immune system operate in a balance.

When we have an acute illness, the Th1 (and Th17) cells are activated to fight invaders.

And that’s exactly what we want… when we’re sick in bed and our life affords exactly zero personal days.

But if those cells remain continually overactive (instead of shifting balance toward Th2), they begin to attack things they shouldn’t ~ our own bodies, resulting in autoimmunity and chronic inflammation.

This balance can be affected by supplements that impact the immune system and they generally fall into one of three categories:

Th1 boosting — These signal the immune system to fight and increase inflammatory response (also boost Th17).

Th2 boosting — These stimulate the production of antibodies and decrease inflammatory response.

Th regulating — These are rare, but truly modulate balance between Th cells.

Which means, if you take supplements daily that stimulate / increase Th1, you can cause or worsen autoimmune conditions.

If you aren’t familiar with pro-inflammatory autoimmune diseases, they include • Rheumatoid arthritis • Chron’s IBD • Celiac disease • Multiple sclerosis (MS) • Type 1 diabetes • Hashimoto’s • Guillain-Barré • Chronic inflammatory demyelinating polyneuropathy • Psoriasis • PANS / PANDAS (Click here for more)

In my daughter’s case, her OCD & PANS symptoms are related to TH1 & 17 dominance and misdirected constant fighting causing brain inflammation.


Increase Th1:  Lactobacillus Acidophilus, L Plantarum, L CaseiL Rhamnosus GGL Bulgaricus, L ParacaseiL Sporogenes, L SalivariusL BrevisL Fermentum, Bifidobacterium BreveStreptococcus ThermophilesEnterococcus FaecalisBacillus SubtilisS Boulardii and Soil Based Organisms

Decrease Th1: Bifidobacterium Longum (infantis), B BifidumB Fragilis & L Helveticus

Research for each is linked to their names, however, there is still so much unknown about the immune system that every strain carries some risk of acting on it in a way we haven’t yet discovered.

Additional information can be found at TH1 / TH2 ratio and Probiotics: “The bottom line…most of the probiotics induce TH1 and reduce TH2.”

The Probiotic Paradox also explains the balance, delivering a clear takeaway: “Do not increase the TH1 response if you have or think you have an autoimmune condition.”

Probiotics | An unexpected cause of my daughter's autoimmune issues

So, we know supplementing with probiotics can contribute to skewing the balance of our immune system and that can be harmful, but there are also additional reasons for lackluster reviews such as:

“If you interview any researcher who studies the gut microbiota for a living, there’s a very good chance that he or she doesn’t take probiotic supplements” [R]

Other Issues with Probiotics

Some people’s immune systems can’t differentiate between beneficial and harmful bacteria

“In people with weakened immunity, the so-called friendly bacteria which make up probiotics, are treated as hostile invaders.” [R]

This is especially important for children with PANS/PANDAS who may react negatively to all types of probiotics. When their condition is triggered by both “good” and bad bacteria, probiotics and fermented foods can cause inflammation and flare neurological symptoms.

Note: Avoiding only strep strains is dated advice, from when PANDAS was believed to be triggered only by strep. With PANS, children often react to all strains.

Probiotic adjuvants can feed bad bacteria

img_3918Polysaccharides and fibers (prebiotics) are added to many probiotics to help usher them to our gut. InulinInTactic® and FOS are some names you may see on the labels. Research has shown that these hybrid sugars can foster growth of undesirable bacteria.

Some studies have indicated they “encourage the growth of Klebsiella, a bacteria that causes intestinal permeability, feed E. coli, many Clostridium species and some kinds of yeast.” [R]

SIBO aggravation

If you have slow gut motility, the problem with the additives and prebiotics found in probiotics is intensified. The probiotics you ingest can get stuck in the small intestine. There, they have been shown to fuel the overgrowth of opportunistic organisms and worsen small intestine bacteria overgrowth (SIBO) symptoms.

As a result, rather than aiding digestive issues, you could be contributing to them. [R]

Microbial imbalance, mislabeling, and gene transfer

Recent research shows that bacteria freely exchange genetic material and rapidly evolve. They can change form and overgrow quickly, creating microbial imbalance, a problem which is exacerbated further with manufacturer contamination issues.

probiotic-capsulesAdd to these concerns that several reports have found the some probiotic strains and cfu’s do not match product labels, and it’s difficult to tell exactly which bacteria and how much of it you’re introducing into your microbiome. [R]

For anyone with a sensitive system, especially children, these concerns should not be overlooked.

Histamine issues

While this post has focused on inflammation caused by certain Th cells, histamines are also pro-inflammatory and are produced as part of a local immune response.

If your body can’t properly break down histamine, you can develop histamine intolerance or sensitivity. The symptoms are similar to traditional allergy symptoms.

RR0048-webLCertain strains of probiotics are histamine producing and should be avoided by people with issues.

Commonly known to raise histamine levels are: Lactobacillus bulgaricus, Lactobacillus casei, Streptococcus thermophilus, and Lactobacillus delbrueckii. [Is your probiotic making you sick?]

L. acidophilus and L. reuteri have been debated as histamine raising or neutral so they are also best avoided. [R]

Our Experience

My daughter has PANS. After the initial onset, we were able to largely control her symptoms with the use of antibiotics and then later, natural antimicrobials.

However, each time I tried to remove the natural antimicrobials, her anxiety, OCD and tics would slowly begin to increase and even when taking them, she wasn’t completely healed.

After nearly a year, I began to question probiotics. Upon removing them all, 100% of her symptoms dissipated and I was able to finally stop using the herbs without any relapse.

It became clear that probiotics were the cause of her remaining PANS symptoms (OCD, tics and anxiety).

The probiotic supplements were most likely tipping the scale of her immune system to over react to bacteria and causing her body (which was treating “good” and bad bacteria the same) to fight even harder, causing brain inflammation and neurological symptoms.

Something I thought was supposed to help her, was actually causing the problem.

Talk about regret.

The detailed story, including which probiotics we were using, how nervous I was to stop, and exactly how I removed them, was in my blog post, Probiotics: Should you be questioning them too?

After writing that article, I heard from many hundreds of parents reporting that they noticed the same outcomes when they removed probiotics for their own children. That does not mean everyone should stop probiotics, or that they can’t be beneficial, but our experience is not unique.

My daughter has not taken probiotics for 5 years now and I think it’s safe to say, “We are never, ever, ever getting back together!”

What do I suggest?

If anything in this blog resonated with you, perhaps consider a trial removal of probiotics. Even if they seemed to initially help, our microbiome is constantly evolving and at any point an immune system may tip out of balance.

If the probiotics or additives were feeding bad bacteria, you may notice some die off symptoms when you remove them. Go slowly and as long as they’re short lived, it can mean you’re headed in the right direction.

My daughter experienced a few days of die off, but we had nothing to lose except the anxiety, OCD and tics. And in the weeks, months, and years that have followed, it’s been abundantly clear that a probiotic-free life is much healthier for our family.

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38 thoughts on “Probiotics | An unexpected cause of my daughter’s autoimmune issues

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  1. We are in exactly this position now. I credit probiotics for much of the initial progress we made but it is SO important to listen to the body and not become complacent. At some point, I realised fermented foods were not really the best for my (undiagnosed, unrecognised at that time) panda son. So we stopped and the tics reduced. Then, post panda recognition, I remembered that kefir contained strep strains. Removal of that helped a little further. Then just as you describe, we went on holiday and I forgot the store probiotics – and finally all tics ceased and lingering symptoms slowly dissipated. I’m sure they were essential at the start of our journey……but later on they became a hindrance. Stay in tune and constantly be aware (easier said than done!!)

    Liked by 1 person

    1. Hello!
      Wondering if “galactan” is ok? I’m hearing it’s not the same thing as inulin.
      And any thoughts on the nemechek protocol?
      Our daughter is 8 and reminds me a lot of Caroline! Thank you for your blog- it has been so helpful!
      God Bless


    2. We don’t use nemecheck protocol and too many people have reported negative results, “disastrous” in their words, for me to advise people to use it. I also don’t have experience with galactan, I’m sorry!

      Thank you for the kind words, I really appreciate it!!


  2. I also learn the hard way that probiotics where not for my panda child. We also can’t do fiber and most supplements. He is constipated. I started giving him aloe vera however per this aticle if Polysaccharides are bad for panda kid I’m wondering if I should stop giving him aloe vera for constipation since aloe vera has natural polysaccharides.

    Liked by 1 person

    1. If I have concerns about any supplement that is ok to stop, I usually try stopping it and observe what happens. Testing can only show so much, real life trial and error is sometimes what we need to do to find what works. Hope he improves!


    2. Look into SIBO. My PANS kid couldn’t do a lot of fiber from food or supplements for years, and I finally pinpointed the issue. He now doesn’t have problems with fiber–even beans, which we still limit for other reasons.


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