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multiple chemical sensitivities

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

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