My Experience with PANS / PANDAS

I would like to start publishing a series of blog posts that are more ‘off-the-cuff’ thoughts and stories of my own, and a bit less polishing / perfection.

I have a lot to say and to share about health, neurodivergence, and motherhood / children’s health, but I don’t have that much time to put into formatting posts beautifully right now, so on that note I hope you’ll forgive me for being less aesthetic in this series and more matter-of-fact, sharing of experiences, scientific thinking and the like.

Truly I want to keep getting these posts out there because the information is valuable and can help a lot of other parents of neurodivergent children – and their children (obviously). At least that is the hope.


I only learned about PANS once I had troubles with my middle daughter right after her birth about four years ago. I can’t say it’s something we were taught in holistic nutrition school nor in Naturopathic Medicine at CCNM.

PANS is the over-arching condition.

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome.

PANDAS is but one subtype of PANS, and PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection.

Boy that’s a mouth full.

In short, PANDAS is a form of PANS that is specifically caused by Strep bacteria. But PANS itself can be caused by any number of triggers, most of which I’ll describe below.

What’s Happening in PANS?

The simplest way to reduce this down is that a trigger is causing massive sudden inflammation to the brain leading to neurological / psychiatric problems.

In the case of PANDAS, that trigger is Strep bacteria. So let’s say your child gets strep throat, and then days later, they totally regress and start showing a ton of neurological / psychiatric problems.

Other triggers of PANS, besides strep, can include other microbes / bacteria / viruses / mold / pathogens, and their biotoxins or endotoxins they produce.

But also change of seasons, time change, the full moon, teething, certain foods, stress, injury, and more. To the point it’s almost unpredictable.

As a parent, this is kind of a mind fvck.

For us with our middle daughter Mæve, it started the minute she was born. I was speaking to another Naturopathic Doctor and she said this is indeed possible with PANS. In fact we thought it was infant reflux, and this is a common misconception – it’s actually PANS, or at least was in her case.

Symptoms of PANS

Symptoms of PANS include the following:

OCD / Obsessions / Compulsions, new and intense fears and concerns

Tics, jerky movements

Anxiety, depression or mood swings

Agressiveness or hyperness

Regressions like baby talk, acting like a baby, clinginess, new bedtime fears

Sudden trouble with handwriting or other fine motor skills

New trouble with memory, reading or math

New bedwetting, not sleeping

New fears about foods, new food aversions, pickiness

New sensitivity to noise, touch, clothes, light (can also be due to high copper, potentially low zinc)

List adapted from

What We See with Mæve When She Experiences a Flare:

Going by the above list,

She definitely gets more OCD. What this looks like is a lot of hyperfixations on the way things NEED to be or else she loses her GD mind and has an absolute meltdown. A meltdown will typically last 20 – 45 minutes, involve screaming at the top of her lungs and potentially hitting / kicking / punching / biting / scratching us, and obviously crying her face off. Once a meltdown starts there’s no way out of it but through, spending at least 20 minutes if not 45 as I say in this state.

For example, here’s a story:

Last week we went to Walmart. I got out of the car and carried my daughter Aurora (2) inside the store, while Mæve held her Dad’s hand to walk in behind us. She then fixated on the idea that she actually wanted to walk in holding MY hand. When her and her Dad met us inside the doors, she DEMANDED that I go back outside in the freezing cold, all the way back to the car, and do the walk all over again, this time holding her hand.

When I refused (because I am very, very sick of giving in to this type of sh!t which in my opinion just reinforces the idea of her always getting her way – even when it’s dangerous, unsafe, ridiculous etc) she then proceeded to lose her mind.

We were trapped in the entryway of Walmart between the outside doors and the inside doors where you pick up your shopping cart.

I managed to drag her inside the inside doors, out of the way of the many passersby, but she would writhe out of my arms and run back to the shopping cart area and continue to scream.

Eventually we got her back inside the store, but then she collapsed to the ground and began screaming even louder.

At this point EVERYONE at the self checkout stopped and stared at us, and three Walmart greeters all came up to us asking if she was hurt, did she fall, etc. – why is she screaming, basically.

They seemed to insinuate that they thought we were harming her, soooo THAT was fun.

I told the greeter, “She’s Autistic,” as it’s… the simplest way to explain it. The general public don’t often know what PANS / PANDAS is nor am I going to spend the time explaining it during a very public meltdown.

It’s funny to then witness people try to calm down a child in this state. First of all, NOTHING that works with a neurotypical child, will work in this situation. Maybe at most, diversion / distraction. But once they’re gone, they’re gone. It’s simply a matter of time and as one of my favourite quotes says,

Every storm runs out of rain.

So she hyperfixates on things. Before bed she will list out everything that went wrong that day – only when she’s in a flare, never otherwise.

She will suddenly remember all the things she lost or misplaced during the day and DEMAND that we find them right then and there – even though it’s bed time. The other night we spent over 30 minutes trying to locate these things because she simply wasn’t sleeping without them.

She will spazz out about clothing. Her socks don’t feel right – time for a meltdown. She can’t find her one very specific pair of purple pants – time for a meltdown. Her hair doesn’t feel right – time to try ripping it out of her head. Her face is bothering her – time to smack her own face or try ripping her skin off. Like real fun times. And by fun times I feel like I’m living in an actual horror movie.

I mean…. you picture a 3-year-old trying to rip their own face off, and screaming for 45 minutes straight, at least 3 – 4 times a day. Being completely unhinged and acting like a baby or 2 year old.

On that note, during these flares she will go through major regressions. She will go from wearing underwear to only wearing diapers and refusing to use the potty. She never used a pacifier in her life until she had a regression when she was 3 last summer, started using a pacifier at random and now uses it to self soothe. She will talk in baby talk, want to be held like a baby, treated like a baby, attempt to put her very small baby clothes back on or her little sister’s clothes, only to be extremely frustrated when they obviously no longer fit and – you guessed it – cue another meltdown.

The screaming for us is absolute sensory overload for every single person in the house and it severely deteriorates our quality of life. Screaming paired with violence toward her self or others, and it’s SCARY to witness.

She will also throw and break things and become a danger to herself and others. Her Dad says it’s illegal to restrain her but I find that hard to believe. I’m not about to let her cause permanent damage to her sisters or us, so I sometimes have to get between them.

The other major factor during a flare is her sleep. She will start falling asleep at 9-10pm instead of 7pm, significantly impacting us and our ability to clean, put my older daughter to bed, or just generally decompress at the end of the day. Instead I end up falling asleep beside her from exhaustion and getting nothing done.

She will then proceed to wake up at minimum 4 times a night during a flare. When she was younger she woke as frequently as every 30 – 60 minutes and it led to my absolute demise as a human being. Imagine spending entire nights waking every 30 minutes? It feels like torture.

Not only does she WAKE 4 times a night, but she wakes up in what sleep consultants have told us is actually a sleep walking state a lot of the time. She will either wake up screaming as if having a night terror – but so she’s not actually awake. Or she IS awake and screaming, in which case you can have a conversation with her. This isn’t the case in the first scenario.

In the first scenario it’s like you can’t get through to her at all. And her night time screaming episode will last 20 – 30 minutes. I’ve often had to leave the room for fear of going literally insane.

If she’s in a sleep walking type state, she doesn’t notice until she wakes up about 20 minutes later. If she is awake, she’ll start screaming for me to come back.

These episodes disrupt the sleep of everyone in the household and are very hard to deal with.

The last symptom from the list that I’ll touch on, which I think she exhibits, are tics. She does this, almost Tourette’s like thing where she will be in an otherwise totally content state – nothing wrong, minding her own business, playing with toys and the like, but she’ll suddenly blurt out an extremely loud scream or sound. Like a single syllable “AH!” at the top of her lungs and scare the sh!t out of everyone around here. It’s not linked in any way to frustration, she also screams when frustrated but it’s a different scream. It’s just a totally random “AH!”

The final weird thing she does is talking in this demonic-like voice at night that she never otherwise uses. It’s a deep, literally demon-like scratchy horror movie voice, and she’ll repeat phrases again and again like “BAD Mommy, BAD Mommy, BAD Mommy,” on and on and on. I actually find this to be one of the scariest symptoms, and I can understand why people of the past would have exorcisms done on their children with mental issues. She will do low-pitched growls in this same voice as well.

How Long Does a Flare Last?

We have been living in a flare state for about 5 weeks now and it’s been absolutely horrifying. Mæve experienced a fever this past Sunday and it was actually the first day her symptoms stopped, and again followed by yesterday and today. So we may well be exiting this flare, but I can’t believe it lasted five entire weeks.

When she was younger if she got sick, it was 14 days to the day of flare symptoms. Same for teething. If a tooth was erupting, again it would be exactly 14 days of flare symptoms.

When living at our last, very moldy house, the 14 day pattern continued but after ending, she’d often catch yet another cold maybe a week later, and again 14 more days of suffering for all of us.

So a typical pattern for us would look like 14 days of flaring, 7 days of her being ‘normal,’ and then back to 14 days of flaring.

When the time change happens in November and March – 14 days of suffering. Halloween and Easter, if she eats candy: 14 days of suffering. If we go to my parents or her Dad’s parents’ house and she eats inflammatory food: 14 days of suffering.

At least that’s what I recall and from the log I’ve been keeping in my phone, that’s how it goes. So this last 5 week spurt has been truly terrible for us.

Being Ostracized

I do feel as if our families have collectively abandoned us because of Maeve’s hard-to-deal-with symptoms. I think the Boomer generation (as a massive generalization) did not necessarily have to develop the patience or skills to truly parent children. (Take this with a grain of salt; I know many amazing Boomers, I’m just not related to any with amazing parenting skills haha). We were the generation raised by TV after all. The automatic assumption with Maeve’s symptoms is that we the parents are to blame. Either we were too stressed, too busy, too frenetic and our energy rubbed off on her and made her crazy; or, we lacked the skills to discipline her properly and she was simply an unruly terrible child who needed a good slap.

Neither are true. She is fighting a biochemical battle that ultimately won’t respond to either of those broad strategies. Sure it HELPS for us to be patient and compassionate with her and keep OUR energies in check – but it never has and never will ‘cure’ her.

Furthermore, it’s fine and dandy for our parents to tell us to ‘stay calm,’ when they simultaneously don’t help us at all and we have literally zero support or community or time for self-care. So I find it to be a highly offensive and hard-to-achieve solution.

Also, I’ll never forget my own mom running out of the house screaming, “I just can’t TAKE it anymore!” with respect to Maeve’s screaming. That happened on two different occasions. And I won’t even mention what happened when we stayed with my parents in Florida for two weeks (they…. completely broke down repeatedly from hearing Maeve’s screaming). And I’ll never forget her Dad’s dad yelling at her to just ‘smarten up and stop it’ only for that approach to obviously backfire and lead to her screaming even more.

Our parents don’t have a fraction of the coping skills we do to deal with her, and I don’t expect them to but I think it highlights the softness of that generation and their unwillingness to deal with children being actual children – let alone neurodivergent or PANS children suffering an actual disease state.

As a result we’ve seen our families less and less over time and feel collectively abandoned and rejected by them. I would say this is a large side effect of PANS and the impact on the family. It hasn’t even been our choice. I think my parents just feel overwhelmed by Mæve and don’t know how to tolerate her, and don’t understand why their Boomer parenting approaches fall short with her.

I think I carry a fair amount of resent toward their parenting style because a) not only do they completely lack their own ability to emotionally self-regulate, let alone be regulated around her and attempt to regulate her but also b) instead of taking any responsibility around that, they make very clear very verbal judgements of us and our parenting, saying it’s our fault that she is this way and doesn’t respond to their style of whatever (communication, parenting, discipline, you name it.)

Look, its one thing to no longer be cut out for being around toddlers. I get it. They are savage AF. Especially neurodiverse PANS toddlers.

But to blame or judge US for it is what takes the cake and truly upsets me. Especially because they lack all of the skills they keep telling us we should magically possess, like impeccable self-regulation in the face of ear-drum-bursting, 45-minute long scream sessions happening 4 times a day for five straight weeks at totally unpredictable intervals.

Also, on another but related note, because her meltdowns are so completely unpredictable, and because her flares happen SO often, sometimes with only a few days or a week off in between, we’ve also stopped seeing a lot of friends for various reasons. Either we feel judged by them, or we don’t want to constantly be in a situation where we have to manage her meltdowns with other people around and subject them to this experience.

People also seem to think we are either stupid and / or needing of their unsolicited advice.

For the record I am a Naturopathic Doctor with 2 degrees and a diploma in Holistic Nutrition. I am one of the most solution-oriented and productive people I know. Her father is an Electrical Engineer who solves high-level problems. We have collectively spent thousands of dollars on this problem and met with countless health practitioners from multiple MDs, to functional MDs, to NDs specializing in neurodivergence and PANS, to physiotherapists and occupational therapists doing Melilo protocols and so forth.

We have a list of therapies we’ve tried with her that’s about four pages long.

So it’s insulting AF and mostly just annoying when lay people try to ‘solve’ this problem for us. It makes me feel like, Do they think I’m stupid? Do they not know how much time, energy, money, etc I’ve spent on this? Do they not know how many experts I’ve spoken to? They don’t. All I would really appreciate is some fvcking empathy, as I’m sure you would too, if you’re going through PANS and reading this article. But because we rarely get said empathy from anyone but our best friends, I have somewhat alienated myself from other people because I’m tired of explaining the situation and hearing these super baseline solutions being proposed by people who know literally nothing of this topic and are hoping to be the hero of the day or just point out how freaking dumb we are.

“Just buy a sound machine.” LOL

“Okay but not a sound machine that plays rainstorms, it needs to be a song.” LOLOLOLOL. Thanks bud.

As you can see, I am filled with unprocessed rage because I haven’t slept in four years.

As a result, PANS has been a VERY isolating condition and experience for us. All the while experiencing our own bouts of insanity of having to tolerate, deal with, and manage it to the best of our abilities. So we’ve lost out on community and support during a time we probably need it the most.

Confounding Variables

We use something called the Walsh protocol with Mæve and it’s something I also use a lot in my ADHD courses.

With the Walsh protocol you basically look directly at biochemistry through lab testing and see what’s up.

We know for a fact Mæve is severely deficient in:

  • Vitamin A
  • Vitamin D
  • Zinc
  • B6
  • Glutathione (the body’s main antioxidant)

And she’s very high in Copper and yeast in her body.

Being low in zinc and vitamin A, and high in copper, leads to children being batsh!t crazy, basically.

She also tested positive for something called Pyroluria, a condition whereby red blood cells don’t break down properly, they break down instead into pyroles. Pyroles require Zinc and B6, in order to be eliminated from the body, so this is why she’s low in zinc and B6. But pyroluria apparently happens due to the oxidative stress from the PANS itself. And yet it’s a catch-22 where it also exacerbates the PANS to be deficient in zinc and B6.

One final factor, she shows high levels of whole blood histamine, which means she is an under methylator. Undermethylators tend to be OCD by nature and have a lot of fixations. So that means her baseline nature is to be fixated, and then when she has a PANS flare, her fixations are essentially ON CRACK.

High copper children (and adults) are ‘crazy’ by nature… And then during a PANS flare it’s crazy on crack. Yet again.

In an ideal world, she would be taking these supplements for at least 4 – 6 months straight and then re-testing:

  • Vitamin A
  • Vitamin D
  • Zinc
  • B6
  • Glutathione / NAC
  • SAMe for undermethylation

And then on TOP of that… she would be on a PANS protocol during flare ups.

Our biggest issue has been reliably getting supplements into her. And sometimes it drives me so crazy that I give up all together for weeks if not months. I am kind of waiting for her to mature a bit more so she can start taking things. This is what happened with my eldest daughter, who is now more mature and can swallow pills.

My First Daughter Exhibited Some Similar Symptoms

I call my eldest daughter ‘Mæve-Lite’ because she definitely showed similar symptoms but of a much lower intensity. Nevertheless, it was a LOT.

I’ll never forget when I was a single Mom and she was about 2. This gentleman was trying to date me and I kept telling him I was unable, I was preoccupied by my high needs / ‘spirited’ daughter, etc.

He said Fine, I’ll come visit you both, we’ll go out for dairy-free ice cream. Okay cool I thought. He can see this madness for himself, it might be validating (it was.)

Sure enough my eldest daughter had one of her daily massive meltdowns in the parking lot of the ice cream store. I remember her rolling around on the pavement, completely inconsolable, could not be reasoned or reckoned with AT ALL, nothing was getting through to her. I tried to pick her up and take her off the pavement but she would slither out of my arms and return to screaming and slapping the pavement. He tried his best to cheer her up or break her out of this funk – but nada. Zip, Zilch, Nothing. Nothing but time.

I’ll never forget the look in his eyes as he said, “Ohhh, NOW I see what you’re dealing with.”

Likewise she had a million textural issues. Getting dressed in the morning was an absolute nightmare from age 2 – 9 or so. She would pull or rip at her own hair because she hated how it felt (just like Mæve). She would scratch her own face and self harm (she still has a scar on her cheek from it). As she got older she would skin pick, this is usually related to a glutathione / NAC deficiency. She hated most of her pants and would only wear certain dresses or tank tops, depending on her age.

BUT luckily… She has grown out of a lot of these things. I still see her pull at her hair and skin pick, but her responses have been modulated by…. Life.

As adults and young people whom are growing up, we start to see that writhing on the floor screaming about our socks is not acceptable. And so I think we still have the FEELINGS inside of us sometimes (or a lot of the time), but we’ve learned to modulate how we EXPRESS those feelings.

Nevertheless – wouldn’t it be magical to not feel that way at all?

I’ve seen children who reliably take their rebalancing supplements (and adults), have these feelings go away all together.

And I’ve had so many parents of neurodivergent or PANS children tell me the same thing: that their teen or young adult has now ‘grown out of’ the symptoms.

Indeed that’s what these articles say online: That *most* children eventually grow out of PANS.

Do Adults Get PANS?

From what I have heard in my preliminary research….. No. I mean, the P in PANS stands for ‘Pediatric’ so by that alone, adults shouldn’t exhibit it.

And yet….

When we were reading through the PANS / PANDAS Flare Guide by Kendra Needham, Maeve’s dad T said he saw a lot of himself in the symptom picture, and had been like that not only his entire childhood, but also teenage and adult years. He is diagnosed ADHD but I would also say from my experience with him that he is probably autistic, and from a Walsh perspective or biochemical perspective, he definitely occurs as an undermethylator and pyroluric like Mæve. (He is about to run the labs to find out). These are two biochemical processes that are very common in Autism (undermethylation + pyroluria).

My other experience with him is that he does, consistently, react to some type of brain inflammation trigger the way that Mæve does. Obviously he doesn’t roll around on parking lot pavement, but I do notice certain triggers make his resilience, tolerance and patience absolutely crumble into thin air. I used to think it was food, but I’ve seen him be ‘ok’ with food. I do believe it is a pathogen response for him as well.

From his perspective he says that right before getting sick with a cold, it feels like his brain is ‘on fire’ and ‘totally fuzzy.’

As an outsider what I witness is that he seems behaviourally more unhinged, quicker to anger, low tolerance of the kids / life, easily tears up, expresses a lot of worry / concerns / anxieties, seems to spiral into negative thoughts and so forth. Previously he would also then spend hours in bed all day long, not participating in adult life / chores / parenting, but has stopped doing this since I expressed my issues with it.

I haven’t really begun researching into this idea of PANS affecting adults, deeply at all yet. But I AM aware that inflammation + neurodivergence = hot, HOT mess.

And T doesn’t really do much to address his inflammation. One thing about undermethylators is that they have notoriously terrible compliance, they are obstinate, stubborn, bullheaded, and only want to do things ‘their way,’ even if their way doesn’t work.

Gosh I’m just spilling all the tea today aren’t I. So now you know what we’re up against in this household! Mental illness can be a real b!tch.

The NSAID Link

At some point during our Dark Ages with Mæve, we discovered that the NSAID Ibuprofen (Advil) actually made her experience a good mood. This makes sense because it is an anti-inflammatory, and would therefore get rid of the PANS inflammation in her brain during a flare up, and allow her to be ‘normal’ for a few hours and actually tolerable.

However we ALSO noticed she responded the same to Tylenol, which is NOT an anti-inflammatory. So was it just that she was in pain? And simply taking a painkiller helped her to be her sweet, normal self again?

Our functional MD concurred with me that her oxalate levels were SO high, they were on par with a 45-year-old woman experiencing fibromyalgia, she said. “Mæve has known nothing but pain her entire life. She has the pain level of a 45-year-old woman with fibromylgia,” she said. And this, was due, most likely to oxalates. (Candida themselves can produce oxalates, and she has a very high candida level).

And but yet the oxalate issue is a separate issue. Because we’ve put her on a mostly low-oxalate diet for the past few months – but yet she STILL has PANS flares, right? Her symptoms typically always happen after getting sick. And, if we DO accidentally give her too many oxalates – usually from dark chocolate or potatoes – she has ‘flare’ type behaviour all over again which I suspect is just due to the pain of the oxalates.

So I think it’s safe to say she experiences both PANS flares as well as oxalate-related pain, and the poor behaviour of a small child in severe pain. And as a result, she responds favourably to both Advil and Tylenol. One addressing the PANS-related brain inflammation, the other addressing body pain caused by oxalates, whether those oxalates are externally from food or internally from her candida infection.

Theoretically, her oxalate levels should lower once we’ve killed off the candida and healed and sealed her gut. Though I suspect it’s gonna be a while!

Why Mæve Is Sick SO Much

I’ve been keeping a log since last summer of the times Mæve has been sick, whether it’s vomitting (she does show signs of cyclical vomiting episodes), upper respiratory tract infections / common colds, or fevers.

What we’ve noticed is that she’s sick usually once per month from September to April, and was only sick one time over the summer of May to August.

Why does she get sick so often?

First of all, she started daycare in October and has been bringing home tons of germs. She’s in a class of 20 kids and then interacts with four other classrooms of kids on recess – that’s 100 potential kids to pick up germs from. And she does.

But maybe more importantly, her very low zinc means her immune system is a sitting duck for pathogens.

If I can manage to rebuild her zinc stores, we can probably decrease the frequency and severity of sicknesses, and therefore the frequency of PANS flares.

A Small Miracle Happens

Halloween October 31 2023, and Daylight Savings November 5th 2023, represented a prolonged flare for Mæve from hell, comparable to the current 5-week one we just experienced. I don’t know why but it was a particularly hard one for all of us, to the point that T said we should cancel Halloween going forward forevermore.

However that week after Daylight Savings, I had been doing a lot of research into CIRS (Chronic Inflammatory Response Syndrome) as caused by mold / candida / yeast, and reading up on how effective Activated Charcoal (AC) was for binding the biotoxins that cross the blood-brain barrier and cause all kinds of brain symptoms. I was mostly looking for myself, since I know the biggest causes of my low dopamine are high mold levels. (Mold disables the key enzyme that makes dopamine). I had bought myself Activated Charcoal (which worked as effectively as Vyvanse and Conerta for my ADHD symptoms, BTW!), and decided to empty a capsule into Maeve’s juice before bed. I had also bought her liquid melatonin to deal with the time change, something I’d tried before but at a more modest dose (1 – 3 mg). This time I decided to go with 9 – 10mg in her juice.

Something about that combo of AC + ‘Melly’ made her sleep like an absolute dream. Her night terror-type screams went away, her ‘sleep walking’ type sessions went away, and she was sleeping through the night for the first time in her entire life.

It was a small (big) miracle.

Getting that much-needed sleep seemed to also regulate the heck out of her behaviour and really reduce the PANS flare symptoms, it seems. Although she still had them several times (sick in December 8, January 8, February 14) she was much less terrible those times.

Right up until March Daylight savings, March 10, 2024, which coincided with her also being sick (double, sucky whammy). This is when our five-week-streak began and only just ended a few days ago. So I can say the AC + Melly bought us a good 4.5 months of sleeping and fewer behavioural issues.

Sure enough in the PANS Flare Guide, it talks about the importance of melatonin.

And in discussions with Dr. Sonya Doherty ND, she also spoke to the importance of melatonin for good sleep and improved behavioural outcomes.

Worth it.

What’s On Our Differential Diagnosis List Now?

I think it’s possible to keep Autism Spectrum on our DDx list, although to me ADHD is way more likely for Mæve. Although….. her chemical signature of undermethylation + pyroluria is very common in Autism.

I DEFINITELY think she has PANS…. No doubt about that.

She exhibits very strong ODD Oppositional Defiance Disorder, but again biochemically speaking, that’s just from her undermethylation status and could be rebalanced by SAMe.

Even our MD agrees she sounds so ODD. (She IS so ODD, it’s so hard to deal with).

When I say she’s so ODD, what that looks like is if you tell her to stop doing something? She will actually double down on it and do it two times harder. If you tell her “No” to something she will just try doing it harder, more, and worse. (This is why our parents think we’re terrible parents, btw). Because somehow children should magically just understand the words ‘no’ or ‘stop.’ But when they undermethylate they become ODD and have these completely oppositional stance to those words. It’s beyond exhaustive as well as scary at times.

Back to our DDx list, from a testing perspective as I said we know Mæve has:

Deficiencies: Vitamin A, B6, D; Zinc; Methylation factors, NAC / Glutathione

Overloads: Copper

Infections: Candida, Aspergillis, Fusarium (all 3 are mold / fungi) and C. Difficile (bacteria). These infections particularly disable dopamine production and can also make her prone to pathological demand avoidance, which I sometimes see in her dad and even sometimes in her. PDA is highly related to low dopamine and low serotonin.

We need some experts to weigh in and diagnose at some point, and here is the list we beleive we’re working with in summary:

  • ASD
  • ADHD
  • ODD
  • PDA
  • PANS
  • Biochemically: undermethylator, pyroluric, multiple nutrient deficiencies, copper overload, multiple microbial infections

Where To From Here?

In an ideal world, we will more religiously get Mæve onto her baseline supplements to address her deficiencies. This includes zinc, vitamin A, vitamin D, SAMe, and B6. We will also get her onto weekly magnesium flushes a la Dr. Sonya Doherty styles – I’ll write a separate post on that at another time, but in short, it will address Maeve’s high internal yeast levels. And then we’ll develop some type of PANS flare protocol based on the guide I just bought here. But… It’s a LOT. And we already can’t even get her to take the basics yet. Part of that issue is in correcting my OWN ADHD and low dopamine issues (high copper, low zinc status). I will have to write more about ALL of those topics as well – coming soon!

I myself am just crawling out of a severely low dopamine era and correcting my low zinc / high copper to restore it (and then progressing on, to fix my gut microbiome, another source of low dopamine). I think once I have more dopamine in my system I will have more mental bandwidth to figure out ways to consistently get Maeve’s supplements into her.

We also need to meet with Dr. Doherty to see if she too, thinks its PANS. And we are supposed to meet with a pediatrician to see if she is autistic, ADHD, ODD or what at some point.

I have been juggling a LOT of balls in the air and thus we haven’t made it that far yet.

Do you know much about PANS? Does Your child have it? I’d love to know more. Comment below!

And if you’re needing help with nutrition, supplements, or lifestyle factors for neurodivergent adults and children, you can check out all my courses offered on that topic here.

Where to Get Beef Liver Supplements:

For those living in the US:

For those living in Canada:

How Much to Take?

Check with your practitioner first. I typically recommend my clients take 6 – 12 capsules a day. This is encapsulated FOOD so it requires more capsules. Taking 12 usually ensures we hit closer to 10,000 IU Vitamin A which is a more effective amount and a great amount to take during pregnancy or to address nutrient deficiencies.

The No Amylose Diet for Weight Loss & Mold / Candida Issues

This is my first blog in a very long time! I am routinely disrupted by two toddlers (and a preteen), so let’s pray this goes smoothly enough.

I somewhat desperately want to get this information out to you because I think it can be of service to a lot of people (and already is), but I feel it’s my duty to bring it to my personal corner of the world.

What Is The No Amylose Diet?

In a nutshell, it’s a therapeutic diet that eliminates added glucose and amylose – the most common type of starch that we eat.

Who Created the No Amylose Diet?

This therapeutic diet was created by Dr. Ritchie Shoemaker and used on his thousands of patients for 20 years before he published his first book on the topic in 2005, called “Lose The Weight You Hate.” It has continued, for almost another 20 years, to help people lose weight, as well as a first line treatment for mold and CIRS (Chronic Inflammatory Response Syndrome). This diet is particularly effective in those CIRS-affected with an elevated MMP9 lab result. (See your doctor to find this out).

Why Eliminate Amylose (and Glucose)?

These two constituents are known to raise blood sugar quickly and lead to a corresponding dip in blood sugar over time. In the process, they also create leptin resistance and insulin resistance. These things can occur for other reasons as well, and still respond favourably to the elimination of glucose and amylose.

That’s because a high insulin state is an INFLAMMATORY state. If you have any kind of health condition that is aggravated by inflammation – which means, most health conditions – it is of service to eliminate foods that exacerbate that inflammation.

If we can decrease specifically the carbs and foods that do this, our insulin levels will decrease overall, and our inflammation levels will decrease with it.

What Do You Remove?

You basically avoid food with glucose (sugar added to it), including white sugar, brown sugar, turbinado sugar, ‘glucose-fructose’, sucrose, evaporated cane juice, corn syrup, and so forth.

You also avoid the amylose starch which means avoiding ALL grains – yes ALL grains; white potatoes, sweet potatoes, and carrots (and any other vegetable growing under the ground, except for onions and garlic).

What Do You Eat?

Here are the foods to choose from on a no-amylose diet:

  • All animal proteins – red meat, chicken, turkey, all fish and seafood, eggs
  • Dairy, as long as you tolerate it – although for the purposes of weight loss, I recommend avoiding most dairy until you hit your goal weight (dairy on its own triggers an excessive insulin response)
  • All above-ground vegetables, as well as onions and garlic
  • Coconut flour, almond flour, and corn starch are fine
  • Corn is fine and corn flour
  • Very small amounts of honey and maple syrup
  • All fruits, fresh and dried
  • Herbs and spices
  • Sugar-free beverages, although fresh squeezed fruit juices with no sugar added are allowed
  • Dark chocolate and cacao, cocoa and cacao butter products, coconut butter / oil, coconut milk, coconut meat, coconut cream, extra virgin olive oil, avocado oil, avocado oil mayo, avocados, tallow and butter are all great fats to choose on this diet
  • All nuts and seeds and nut butters
  • Beans and legumes if you tolerate – they contain starch, but not amylose. They contain raffinose and stachyose, starches prone to making us have gas.
  • Dr. Shoemaker still advises to not over-eat and go buck wild, be reasonable, obviously, don’t eat a pound of nuts a day (perhaps a small handful only) and don’t over-eat in general. But because this diet resets leptin sensitivity, it becomes harder and harder to over-eat anyways.

How Does The No Amylose Diet Work?

Firstly by eliminating glucose and amylose, we decrease overall insulin in the body as well as insulin spikes, both of which contribute to resistant, stubborn, hard-to-lose weight. Any time insulin is elevated in the body, it is virtually impossible to lose weight, no matter what we do or how hard we try.

We also run into what’s called ‘Insulin resistance,’ where we have been exposed to SO much insulin over time that our cells stop responding to it as effectively. This worsens the situation, because the body then pumps out MORE insulin in an effort to get the cells to respond to it. This super elevated insulin level (beyond the physiological requirements of a healthy body), further worsens the stubborn weight picture.

Next up, most of us with weight issues also have leptin resistance. Leptin is the hormone that tells us when we’re full and thus to stop eating. If our leptin is no longer working – which typically happens due to eating too many refined carbs, emotional eating, eating omega 6 seed oils, and eating any time we aren’t hungry – our body can no longer accurately tell when we’re full. This means we often eat more calories than we need – well past the point of physiological requirements. This is a long term recipe for weight gain.

By being low in carbs, low in refined carbs, and low in lectins (anti-nutrients predominantly found in grains), as well as low in seed oils, we actually begin to reverse leptin resistance.

This means we learn when our body is full again, and we end up eating significantly less, leading to easier weight loss.

How Long Do You Do The No-Amylose Diet For?

Dr. Ritchie Shoemaker advised doing this diet for at least 12 weeks, or as long as it took to reach goal weight.

He does allow for one ‘cheat meal’ after every ten days of perfect adherence to the protocol. Of course you don’t have to do a cheat meal, especially if it hurts your body and results – particularly with other things like CIRS, inflammation, and digestive issues.

On the other hand, if knowing you have this special meal to look forward to means that you have better compliance over the ten day period prior, it might be a good motivator to keep you on track, especially for weight loss purposes. (Meaning, if the cheat doesn’t inflame you and worsen your symptoms).

People whom are strictly looking for weight loss might not have CIRS or other highly sensitive issues, and a single cheat meal might not overly inflame them as it would to someone with a dysregulated immune system.

How Do You Maintain Your Results?

After achieving your goal weight, Dr. Shoemaker states you need to have your fasting insulin measured. Personally I would run both fasting insulin and fasting glucose together at the same time, around 8am. This allows for the calculation of something called the HOMA IR score, or your insulin resistance score, to see if you are still somewhat insulin resistant. (If you are overweight, gaining weight, or can’t lose weight, there is definitely some degree of insulin resistance present.)

You can calculate your HOMA IR score here:

This is a score you can track over time to see how well your insulin is functioning. Ideally you want to be *non* insulin resistant and keep it that way via nutrition and exercise.

Dr. Shoemaker then states to take just your insulin score and divide it by 70.

  • If your insulin level exceeds 30, you can have two amylose servings PER WEEK to maintain your new weight. A serving would be a single sandwich, a muffin or a potato.
  • If your insulin level is 20 – 29, you can have 3 servings per week
  • If your insulin level is 15 or less, you can have amylose every OTHER day
  • And if it is 10 or less, you can have ONE serving a day, although apparently this is a rare person, and they probably wouldn’t have weight gain in the first place (these are all your perpetually skinny friends)

You can do your insulin level at any time, including before or during the diet, to find this out. Apparently your insulin levels don’t or barely change over time, hence why you can do this test before you even start the no-amylose diet.

When it comes to the HOMA IR score changing over time, that’s because your fasting glucose should go down over time, signalling that you are less (or not at all) insulin resistant. So fasting glucose WILL change over time (and should), whereas fasting insulin will NOT change over time.

I have not run fasting insulin on enough clients, enough times, to have noticed the insulin not changing. Dr. Shoemaker is an MD with access to covered lab testing and has run it thousands of times, so I will outsource this knowledge to him.

WARNING: Those Who Will Gain ALL The Weight Back

Dr. Shoemaker noted that out of his thousands of weight loss patients treated, for those who lost 30lbs or more, 70% would maintain this weight loss over one year later.

Reliably, the 30% who gained it back did one thing consistently: they FAILED to measure their fasting insulin, and failed to adhere to the maintenance amount of amylose per week. Thus, they gained all the weight back.

It is a relatively cheap test and possibly even free depending on your situation. I would highly recommend getting it ASAP.

The 00-2-3

Dr. Shoemaker tells patients to adhere to the 00-2-3

0 servings of glucose per day

0 servings of amylose per day

2 servings of protein per day (lunch and dinner, at least)

3 servings of vegetables (at least), and 3 servings of fruit per day (max)

When you adhere to this formula, large amounts of weight loss have been seen, sometimes as high as 45lbs in 12 weeks. Granted, the more you have to lose, the faster you will lose it. If you only have 30 – 36lbs to shed (as I do), it can take a longer time. The last 5-10lbs are always the longest.

Typical No-Amylose Diet for a Day

Breakfast: Omelette – Greek omelette with feta, black olives, bell peppers; or a Western Omelette with onions, ham and green bell peppers

Or a fruit platter

Or breakfast sausages with fruit juice

Lunch: Some type of meat (salmon filet, chicken breast, boiled eggs) over a salad with homemade salad dressing

Snacks: square of dark chocolate; dried fruit or dried fruit bar; apple with nut butter; handful of nuts and seeds, RX bar etc

Dinner: 6-8oz of meat / fish with a side of vegetables

Dessert: homemade frozen fruit and honey sorbet, cashew ‘cheesecake’ on occasion, fresh fruit, dark chocolate, sugar free jello

How Does the Low Amylose Diet Help Mold / CIRS?

The no amylose diet helps CIRS by reducing the inflammatory load brought on by food. By eliminating glucose and amylose, insulin levels drop drastically. Insulin is a pro-inflammatory hormone that exacerbates inflammation in the body. This means that as insulin drops, inflammation drops, and thus so do the symptoms of CIRS. Any inflammatory disease will typically respond this way to the diet. It is not a ‘curative’ diet, but can help reduce inflammation and thus symptoms considerably.

Since mold is a large trigger of CIRS, it helps the inflammation aspect. But mold in the body is also known to consume (and make us crave) carbohydrates, as well as contribute to stubborn weight gain. By removing starch – one of the favoured fuel sources of mold like candida, we decrease feeding it and decrease candida symptoms.

I have never been a fan of ‘the candida diet,’ I have never seen it work, and it’s far too restrictive. Many mold experts agree. Removing fruit, for instance, doesn’t seem to help candida. The candida diet also removes nuts and seeds high in molds, and yet the no-amylose diet includes these. Oddly my candida symptoms have improved drastically with the removal of amylose, but with the inclusion of fruit (even ‘mold prone fruit’) and nuts and seeds.

My Own Experience with The No-Amylose Diet:

I have been on the no-amylose diet for 15 days now. I have shed 3lbs in that time, going from 179lbs to 176lbs (sharing TMI here, seeing as women ‘shouldn’t share their weight,’ perhaps but hoping it is to your benefit).

Since my two back-to-back pregnancies, I have been classified as overweight. I previously weighed 140lbs, which is a great weight for my height (almost 5’6″) and a body fat percentage of 20%. It is my goal to return to that weight, and I’m still 36lbs away.

With my two pregnancies (in 2020 and 2021) I noticed it felt like some type of autoimmunity got ‘turned on’ in my body. I became extremely inflamed. I developed a large non-H-pylori gastric ulcer, and esophagitis (inflammation of the esophagus). My IBS symptoms (which I’m almost positive are autoimmune in nature) worsened 10-fold. I had extremely bad heartburn, acne, and resistant weight gain, as well as full-body, intensely painful aches.

I have long been searching for an effective therapeutic diet for my situation.

I tried the carnivore diet with good success for 1 month, 3 times. (So 3 months total on separate occasions). However I don’t find ketosis to be a productive state for me, it kills my energy levels, and I can’t mother 3 children with low energy. Being in ketosis while breastfeeding also meant I needed to consume upwards of 9grams of sodium per day to maintain milk supply, which is rather disgusting.

I had also tried The Lion Diet for a week (eating only red meat), about 3 times as well, and had the same general problem with ketosis. While I gained healing and decreased inflammation with these diets, they didn’t suit me long term.

I tried the HCG protocol several times, I made it through one full round and did lose weight (I was previously 189lbs). I actually went from 189, my weight after the second pregnancy, down to 165 and felt significantly better.

Then I tried to utilize Matt Stone’s Rehabilitative Rest and Aggressive Re-feeding (RRARF) protocol this summer to address my brain fog, and I quickly gained up to 179 within a few weeks.

Why? I now know: STARCHES! The RRARF protocol diet is SO DAMN HIGH IN STARCH!

(And yes, I could write an entire entry documenting my weight journey, which only began since having kids at age 27, and I probably will at some point).

I was reflecting on all the times I was lean, including after my first pregnancy. I found it relatively easy to shed weight the year after my first daughter was born because – you guessed it – I was eating paleo and avoided all starch! Maybe the very rare quarter piece of sweet potato with butter.

I quickly started gaining weight after she turned 1 because I reintroduced… STARCH! As well as a lot of glucose in frequent Starbucks caramel macchiatos, which were part of my emotional eating picture at the time. (Naturopathic School with a baby was highly stressful and tiring).

I eventually lost 25lbs using the HCG protocol which… you guessed it… contains no starch or glucose (it is a no amylose diet with expedited results). At that time I went from 142lbs, down to 117lbs, but this weight was too low for me and I didn’t have enough muscle mass. I spent the next few years building muscle mass and got up to 135lbs.

About 3 years later I first tried Matt Stone’s RRARF protocol. I did his protocol to try to heal my adrenal fatigue, which I now believe was actually caused by CIRS / mold toxins. I went up to 165! Then back down to 140, (using hcg) before becoming pregnant with my first of the 2 back-to-back pregnancies.

And then all throughout pregnancies and breastfeeding…. I ATE STARCH!

I am so sure now that the starch has been my issue all along!

Bottom Line: When I reflect on my history, all the times I was lean, I was not eating starch

All the times I gained weight FAST, was when I introduced starch.

This is common for overweight people – most of us react this way to starch.

While I have lost on average 1.5lbs a week, this is not expedited, it is just regular, healthy weight loss. I could probably expect to hit my goal within 24 weeks or 6 months. So let’s check in May 1st and see if I’ve hit my goal? I will keep you posted! And if you wanted to try this with expedited results – including healing your insulin and leptin even faster – the HCG protocol can definitely help with that. I will be posting more in the future about what that is. It is basically a 100-year-old protocol, designed by an MD, that I’ve been using with clients since 2016. It involves whole foods, no starch, and the supplemental use of HCG.

Other Results I’ve Gotten On The No-Amylose Diet

It’s only been a short time of about 2 weeks but I’ve also noticed:

  • Extremely increased energy, no more midday naps required (since I came off caffeine 3 months ago)
  • Clearer skin
  • More awake and energized in general
  • No more brain fog – the one thing I was majorly trying to get rid of
  • Digestion continues to improve – zero gas, bloating, constipation or other factors of IBS and SIBO
  • More restful sleep
  • Extremely hard to over eat or engage in emotional eating; when I’m full and not hungry, the thought of ingesting food strikes me as completely disgusting – which is brand new for me. Normally I never feel full and could eat any time of day. All of my skinny friends have always reported feeling this way – a few bites of a cookie and they are totally full, and the thought of one more bite disgusts them.

These results are somewhat confounded by two other variables:

The fact that I’ve been off caffeine for 3 whole months now – which is making my digestion and health stronger every day

And the fact that I’ve been taking activated charcoal for 15 days as well – to soak up / absorb candida biotoxins.

So I can’t absolutely say for sure which element of this trifecta is giving me all of these results,

But the No-amylose diet + no caffeine + activated charcoal are changing my life IMMENSELY.

Should You Try The No-Amylose Diet?

I don’t think there is a lot to lose by cutting out white sugar and starch (do you?)

I’ve generally advocated for a grain-free diet for many years, and at the very least, a gluten-free grain diet. I think avoiding grains most of the week is beneficial for health, because grains are so loaded with anti-nutrients and lectins that can harm the immune system and gut. (And brain).

Ultimately I think if you want to lose weight, cut inflammation, find a longterm healthy way of eating, and / or control candida, this is definitely a therapeutic diet worth trying. There are a lot of resources out there and a nutritionist, ND, functional MD or health coach can definitely help, particularly if they are versed in this diet and / or The Shoemaker Protocol.

Any questions? Comment below!

Please also comment below if there’s anything here you LOVE and want to see more of, any formatting issues you dislike (or formatting you like) – this is. anew website and platform for me, and I’m trying to make it as user-friendly for my audience as possible. Let me know!