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The importance of addressing pyroluria with chronic Lyme disease (and co-infections), MCAS (Mast Cell Activation Syndrome) and other chronic illnesses

August 5, 2022 By Trudy Scott 27 Comments

addressing pyroluria

Pyroluria is a social anxiety condition that responds well to zinc, vitamin B6, evening primrose oil and a few other key nutrients, typically resulting in resolution of social anxiety symptoms within a few weeks with the correct combination and dosing. However there is much more to pyroluria than meets the eye. Addressing this biochemical imbalance is crucial for recovery from chronic Lyme disease (and co-infections), MCAS (Mast Cell Activation Syndrome) and other chronic illnesses caused by heavy metal toxicity, mold toxicity, multiple chemical sensitivities and Ehlers Danlos syndrome (amongst others).

Dr. Neil Nathan, MD, author of Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness (2018), shares this about pyroluria and chronic illness:

This biochemical imbalance is surprisingly common in chronically ill patients, and missing this diagnosis (by neglecting to test for and treat it) also denies us the opportunity to provide a simple, benign treatment that can help quiet down patients’ already overstimulated nervous systems.

(Here is my Amazon link to his book, which is excellent)

For over 15 years Dr. Dietrich Klinghardt has been saying you won’t see success with Lyme disease without also addressing pyroluria. He has seen a correlation with all his patients with chronic illness and pyroluria.

Let me quote from an article by Scott Forsgren, FDN-P and Dr. Dietrich Klinghardt, MD PhD: Kryptopyrroluria (aka Hemopyrrollactamuria): A Major Piece of the Puzzle in Overcoming Chronic Lyme Disease (a Townsend letter article published in 2017):

Based on testing with a lab in Holland, Klinghardt has found the incidence of KPU [Kryptopyrroluria or pyroluria] in Lyme disease to be 80% or higher; incidence of KPU over 75% in patients with heavy metal toxicity (lead, mercury, aluminum, cadmium, and others) and in children with autism over 80%.

These are very significant percentages of the patient population with chronic illness that may benefit from a treatment program that addresses KPU.

They also state what has long been known when it comes to pyroluria: symptoms are made worse by stress and “chronic infections, such as Lyme disease, may themselves serve as a trigger for the condition (of pyroluria).”

When it comes to MCAS, an updated version of this same article states that:

Klinghardt has worked with biochemists in Germany that are beginning to link KPU with mastocytosis or mast cell activation syndrome (MCAS).

They have observed that KPU treatment repairs the heme molecule, which notably stabilizes the mast cells and lowers the response to these relative rises in histamine.

I use the term pyroluria in this article, throughout my blog and in my book. It was coined by Carl Pfeiffer, MD PhD in the 1970s (after its discovery by Abram Hoffer in 1958). You’ll see these other terms used in various articles and in some of the older research: kryptopyrroluria (KPU), hemopyrrollactamuria (HPU), pyrrole disorder, mauve factor and sometimes malvaria.

As I shared in my interview with Dr. Kelly MCann on the summit, The Many Manifestations of Mast Cell Activation, it would be wonderful to get the terminology standardized and to get some case studies published. This would allow it to gain more acceptance in the mainstream and in functional medicine.

These papers, Discerning the Mauve Factor, Part 1 and 2, highlight some of the mechanisms as to why addressing pyroluria is so important:

  • “Treatment with nutrients – particularly vitamin B6 and zinc – reduces urinary excretion of HPL and improves diverse neurobehavioral symptoms in subjects with elevated urinary HPL.
  • Heightened HPL excretion classically associates with emotional stress, which in turn is known to associate with oxidative stress.
  • HPL correlated inversely with plasma glutathione
  • HPL is a promising biomarker for oxidative stress. HPL is known to cause non-erythroid heme depression, which lowers zinc, increases nitric oxide, and increases oxidative stress.”

The Forsgren/Klinghardt article above, covers additional mechanisms. With regards to MCAS specifically, the pyroluria supplements – zinc, vitamin B and evening primrose oil – all play a role in reducing histamine, providing immune support and reducing inflammation. And they provide nutritional support for the anxiety and mental health aspects of the condition – directly for pyroluria and indirectly via neurotransmitter support (since they are necessary cofactors for making serotonin and GABA).

Here is some of the research I gathered on some of the ways zinc, vitamin B6 and evening primrose oil (EPO) may help when it comes to MCAS:

  • This paper, Role of Zinc Signaling in the Regulation of Mast Cell-, Basophil-, and T Cell-Mediated Allergic Responses, states that “zinc signaling dysregulation is a leading health problem in inflammatory disease and allergy…. These findings may lead to future therapeutic applications for suppressing inflammatory or allergic responses.”
  • In this paper, Effect of pyridoxine on histamine liberation and degranulation of rat mast cells, the authors share that vitamin B6 “significantly inhibited rat mast cell degranulation and histamine release induced by egg albumin allergen.” This paper also discusses the lack of toxicity of vitamin B6 and “the possibility that other mechanisms of action may be involved, such as the improvement in tryptophan metabolism.”
  • This paper, Alterations of mast cell mediator production and release by gamma-linolenic and docosahexaenoic acid/DHA, was looking at mastocytoma (a type of mastocytosis) using a cell line as a model for canine atopic dermatitis (cells were incubated with the wasp venom peptide.) They found that “GLA decreased histamine release …and DHA diminished prostaglandin production.” Evening primrose oil is a source of GLA and fish oil is a source of DHA.

If you’re new to MCAS, Dr. Jill Carnahan has an excellent overview here: Mast Cell Activation Syndrome: Here’s What You Need to Know When Histamine Goes Haywire and I’ve blogged about PharmaGABA often being an issue and making anxiety worse when you have MCAS or histamine issues.

The ramifications of this biochemical imbalance are far-reaching

Here is the pyroluria questionnaire / symptoms list (from my book, The Antianxiety Food Solution). It has been updated with recently with additional conditions. You can read about pyroluria prevalence and associated conditions here.

Here are some of my pyroluria blog posts you may find useful (click each of the linked articles to read further). As you will see the ramifications of this biochemical imbalance are far-reaching:

  • Alice in Wonderland Syndrome – is there a pyroluria connection?
  • I was called a vulture for preying on sensitive people in a social anxiety group – because I mentioned pyroluria and a nutritional solution
  • Intrusive thoughts are a thing with anxiety: low GABA, low serotonin, pyroluria (low zinc & vitamin B6) and hormone imbalances as possible causes
  • Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc
  • Joint hypermobility / Ehlers-Danlos Syndrome and pyroluria?

Feel free to use the search feature on the blog to find additional information about pyroluria. I have written about it extensively. I have it myself and it’s really common – I see it in about 80% of my community – so I am pretty passionate about the topic.

Resources if you are new to pyroluria

If you are new to pyroluria, there is an entire chapter on the topic in my book, The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings. I highly recommend getting it and reading it before jumping in and using the pyroluria supplements on your own. And be sure to share it with the practitioner/health team you or your loved one is working with. We need the wider practitioner community to be aware of this condition and the importance of addressing it.

I use individual amino acids such as GABA and tryptophan with all my anxious clients and we always layer in the pyroluria protocol. There is also an entire chapter on the amino acids and they are discussed throughout the book in the sections on gut health, gluten, blood sugar control, sugar cravings, self-medicating with alcohol and more.

The book doesn’t include product names (per the publisher’s request) so this blog, The Antianxiety Food Solution Amino Acid and Pyroluria Supplements, lists the amino acids and pyroluria supplements that I use with my individual clients and those in my group programs.

If you are a practitioner, join us in The Balancing Neurotransmitters: the Fundamentals program. This is a paid online/virtual program with an opportunity to interact with me and other practitioners who are also using the amino acids and pyroluria protocol with success with their clients/patients.

Have you used the pyroluria protocol as part of your recovery from chronic Lyme disease or MCAS (or another chronic illness)?

Did you learn about this from your practitioner or elsewhere? (please share where)

If you’re a practitioner, is the pyroluria protocol part of your  plan for clients and patients? And has it been a game-changer for them?

If you have questions please share them here too.

Filed Under: Lyme disease and co-infections, MCAS/histamine, Pyroluria Tagged With: Alice in Wonderland Syndrome, Balancing Neurotransmitters: the Fundamentals program for practitioners, chronic illnesses, chronic Lyme disease, Dr. Dietrich Klinghardt Kryptopyrroluria, Ehlers-Danlos Syndrome, evening primrose oil, heavy metal toxicity, Hemopyrrollactamuria, intrusive thoughts, KPU, lyme, mast cell activation syndrome, MCAS, mold toxicity, multiple chemical sensitivities, pyroluria, social anxiety, vagus, vitamin B6, zinc

GABA, Heartmath and EFT ease Micki’s mold-induced anxiety and panic attacks

May 14, 2021 By Trudy Scott 20 Comments

gaba heartmath eft

The amino acids can provide relief when you have mold-induced anxiety – anxiety and panic attacks that are triggered by physiological changes due to mold toxicity such as inflammation and effects on your immune system and neurotransmitters. There is also the anxiety and worry you’re feeling because of the frightening situation you find yourself in and this trauma has a psychological and physiological effect. The anxiety, worry, fears, insomnia and imagining the worst is often compounded by low levels of GABA and serotonin. Benzodiazepines and/or SSRIs are commonly prescribed and only add to the toxic burden. The amino acids GABA, tryptophan and/or DPA/Endorphigen, used as supplements, are better options that address the root causes of low GABA, low serotonin and/or low endorphins. And for some folks, Heartmath and EFT offer additional emotional and calming support (as you’ll read below).

Micki Contini, MS CNC, a board-certified holistic health and nutrition consultant, is a friend and colleague whose life was hugely impacted by mold toxicity. She has kindly given me permission to share her story in the hope it’s helpful for you if you’re in a similar situation. She shares her mold-induced anxiety symptoms and the other ways mold toxicity impacted her health:

My heart was pounding, my face was red, I was sweating, my thoughts were racing and I felt like I was going to die. I wondered if I was having a heart attack? My husband brought me to the emergency room several times with panic attacks and heart palpitations with me thinking this was the end only to find out that I was “fine.” But I knew that I was far from ok. I knew that something was wrong, I just didn’t know what.

I had found mold in my water damaged office. Shortly thereafter I realized it was also in my home. I had cross-contaminated my house, but it was a year before I knew my house had mold.  I had been getting better but not 100%.  It was a step I missed because I didn’t want to face the truth of what the consequences would bring – throwing out more stuff. I had already thrown out most of the stuff from my contaminated office BUT not all of the stuff.  And I paid dearly for not throwing out ALL the things from my office.

I was in denial and I had toxic mold poisoning. Toxic mold was causing my anxiety and panic attacks and other debilitating symptoms such brain fog, tinnitus, trouble focusing, numbness and tingling in my fingers and toes, crazy fatigue, shortness of breath, nausea, diarrhea/constipation, excessive thirst, vertigo, night sweats and bloody nose.

Micki already knew about my work and had been using my book, The Antianxiety Food Solution, with anxious clients in her functional nutrition practice, so she immediately considered the amino acids for her mold-induced anxiety and panic attacks.

GABA for her physical anxiety and panic attacks

When Micki reached out to me, I encouraged her to explore GABA for her physical anxiety and panic attacks, tryptophan for her racing thoughts and DPA/Endorphigen for the crying and emotional symptoms she was experiencing.

The good news is that her anxiety and tension started to fade as soon as she added sublingual GABA Calm to her protocol. She shares this about how GABA helped her

As they started tearing my house apart for remediation, I started eating GABA Calm like candy. At the beginning I had to have a lot more than I do now. GABA Calm takes me down a notch and I feel my shoulder coming away from my ears and I get closer to relaxing.

GABA is well known for relieving the physical tension experienced when you have anxiety. We have GABA receptors in our muscles and many of my clients feel this obvious release of neck tension as the anxiety eases. This release of muscle tension also helps with the kind of insomnia where you lie in bed feeling stiff and tense and can’t switch off your busy mind going 100 miles an hour.

GABA for immune support and toxin protection

What is really interesting when it comes to mold toxicity and GABA is that research shows that GABA can support immunity. GABA also protects the thyroid against fluoride-induced toxicity and counters the toxic effects of phthalates, so I suspect research will eventually show that GABA also offers protection against other environmental toxins such as mold.

Biofeedback and tapping for additional emotional support

Micki also used Heartmath (a type of biofeedback) and EFT (emotional freedom technique or tapping) for additional support while she was in the midst of all this:

I added Heartmath Inner Balance app and Emwave because I had used them prior to this challenge and it helps because you go through a thought pattern where you’re concentrating on gratitude and what’s right vs what’s wrong. That was powerful for me. Still is.

I used EFT to break the pattern of doom and gloom. When I was really sick I felt like another bad terrible thing was going to happen at any moment like I was on guard or on watch. So anything I could do to break that mind set I did.

Micki found what worked for her and that’s key when you’re in this situation. I’ve had many clients not succeed with Heartmath or EFT so don’t feel bad if these approaches don’t work for you.

Tryptophan and/or DPA/Endorphigen for the gloom and doom

I’ve had many many clients successfully use tryptophan for the spinning and overwhelming feeling that many folks with mold toxicity experience. Tryptophan and/or DPA can also help the pattern of doom and gloom Micki described.

Recent research also shows that GABA helps you switch off unwanted thoughts too so it’s possible Micki didn’t need tryptophan for this reason.

She doesn’t remember all the supplements that she used when she was really REALLY sick. This is very typical when you’re in the midst of dealing with mold toxicity (and a good reason to try and keep a log) but she seems to recall that DPA/Endorphigen may have helped with the emotional trauma of it all.

The wonderful news is that today Micki is doing so much better! The amino acid GABA, together with Heartmath and EFT provided much-needed anxiety relief and emotional support while Micki was remediating her home, detoxing her body with daily infrared sauna sessions and following mold toxicity nutritional protocols.

Micki’s gift is that she has become a mold expert

When you’re in the midst of all this you can’t imagine that there can be a gift in what you’re going through but there always is. For Micki, her gift is that she has become a mold expert and now helps others navigate their mold healing journey via SimpleGoodHealth. She shares this:

As you may know, the road to recovery from mold illness is a long hard one, but I can make it easier for you. I have become an expert out of necessity.

We appreciate Micki for sharing her anxiety-induced mold story.

Resources if you are new to the amino acids

If you are new to the amino acids, here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution and additional information on Anxiety and targeted individual amino acid supplements: a summary

This lists The Antianxiety Food Solution Amino Acid and Pyroluria Supplements that I use with my individual clients and those in my group programs – you will find the GABA Calm and other GABA products, tryptophan and DPA/Endorphigen here.

If you suspect low GABA symptoms and are new to using the amino acids and do not have my book I highly recommend getting it and reading it before jumping in to taking the amino acids as supplements: The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings.

Let us know if you’ve used GABA or tryptophan with success for mold-induced anxiety and panic attacks, and DPA/Endorphigen for helping with weepiness.

And let us know what other approaches you’ve used for helping with the anxiety and other emotional impacts of mold toxicity.

Feel free to post your questions here too.

 

Filed Under: Anxiety, EFT/Tapping, GABA, Mold Tagged With: anxiety, biofeedback, DPA, eft, emotional support, Endorphigen, endorphins, GABA, Heartmath, immune support, mold, mold expert, mold toxicity, mold-induced, panic attacks, physical anxiety, serotonin, tapping, tension, toxin protection, tryptophan

Dr. Mark Hyman’s Broken Brain 2: mold toxicity, the heart-brain connection, genetics, inspiration and more

April 1, 2019 By Trudy Scott 6 Comments

Dr. Mark Hyman has done it again with a powerful all-new online docuseries called Broken Brain 2: The Body-Mind Connection as a follow-up to his very popular earlier online docuseries. Some of the big topics that are covered mycotoxins and mold toxicity, the heart-brain connection, the role of genetics and your environment and of course diet and lifestyle.

In the first episode, Dr. Hyman shares his own and very recent personal story with mold toxicity,  how it damaged his brain and how he recovered:

My mold toxicity started off as a cough I just couldn’t kick. After seeing several doctors (something even a doctor has to do sometimes!) I was advised that it could be mold. My house was the prime suspect and my hunch was right, and so began the process of healing my body and gutting my home. I was at one point so sick I couldn’t get out of bed; my mind and body felt like they were failing me and I was desperate to feel like myself again.

In a later episode, Dr. Hyman also shares how the connection between the heart and brain is a great example of the body’s interconnectedness at work:

People often think the brain is the one sending signals to the heart, instructing it to pump blood throughout the body. But there is much more to the story. The heart actually sends MORE signals to the brain than the other way around. The rhythm of the heart is extremely influential—it can signal a state of calm or one of stress, which the nervous system and brain register and share with the rest of the body.

That means your emotional and physical experiences all tie back to the rhythm of the heart. When we’re in a chronic state of stress, that disordered heart rate becomes our norm, and the amygdala gets familiar with it; the brain actually gets comfortable with it and sees it as our baseline.

For this reason, heart rate variability, or HRV, can be used as a dynamic tool to reset our heart-brain connection. We want to strive for a state of coherence—a smooth wave pattern in heart rate variability over time. This coherence is a reflection of a balance between the parasympathetic or relaxation nervous system and our sympathetic nervous system, which is the fight or flight system.

Coherence is the natural state of feeling good and it sends the most beneficial signals to the brain; it actually means we are able to send more information through the vagus nerve to the brain and when we’re in this state frequently it sets a new baseline, one that keeps the body relaxed, enhances cognition, and keeps our physiology balanced.

The powerful evidence behind the heart-brain connection has given birth to a concept called HeartMath, a methodology that assesses HRV and encourages self-regulation practices to promote heart-brain coherence for optimal health.

Dr Hyman and the experts will be doing a deep dive into HeartMath and the importance of the heart-brain connection in Broken Brain 2: The Body-Mind Connection. 

Here are some gems and inspiration from a few of the 70 health experts you can expect to learn from in the docuseries.

Dr. Chris Kresser on mitochondrial dysfunction and chronic disease….

Dr. Ben Lynch on our genes and the environment …

And some inspiration from Dr. Ann Shippy during her discussion on mold toxicity and brain health …

I am privileged and honored to have a very small cameo section in the docuseries!

Here is some of my advice to find something you love to do and have fun…

And my closing words of wisdom about hope and finding your unique root cause …

» Click here to Reserve your SPOT to see Broken Brain 2

In Broken Brain 2, you’ll hear from me and leading health experts AND hear inspiring stories from recovering patients. You’ll discover:

  • Unique ways to protect your brain from the multitude of toxins inside your home…
  • The odd way in which your heart rhythm can shape your brain function…
  • Easy methods to heal yourself from destructive beliefs and traumas that impact your mind and body…
  • How to use your personal genetics to improve your brain and overall health…
  • The little-known link between your brain health and your eyes, teeth, and gums…
  • A simple morning routine for more success and better brain health…
  • And much, much more…

In Broken Brain 2, you’ll learn all about the functional medicine approaches available for overcoming a variety of toxic environmental exposures, including mold, as well as how to heal from toxic beliefs, support the heart-brain connection, understand immunity in the brain, and so much more.

Over the course of 8 full-length episodes, you’ll learn cutting-edge strategies to help you heal your own mind, brain, and body. Here are all 8 episodes and when they will air:

  1. April 3: Dr. Hyman’s Story: The Power of the Body-Mind Connection
  2. April 4: Protecting Your Brain from a Toxic World
  3. April 5: Rising Above and Healing from Toxic Beliefs and Trauma
  4. April 6: The Secrets Behind the Heart-Brain Connection
  5. April 7: Cooling the Fire Within: The Immune-Brain Connection
  6. April 8: How to Personalize Your Diet and Understand Your Genetics
  7. April 9: Optimizing Your Brain Health and Innovative Therapies
  8. April 10: The Step-by-Step Brain Reset

» Click here to register for Broken Brain 2

This was truly a “labor of love” for Dr. Hyman and all of us participants and we hope you’ll join.

Please help us spread the word by sharing this with your friends and loved ones who may benefit from this information.

Let us know if you can relate to any of this and feel free to post your questions here.

Filed Under: Events Tagged With: Ben Lynch, Broken Brain 2, Dr. Ann Shippy, Dr. Mark Hyman, functional medicine, genes, heart, Heartmath, mold toxicity

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  • November 2009

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