everywomanover29

Food, Mood and Women's Health – Be your healthiest, look and feel great!

Pyroluria

Joint hypermobility / Ehlers-Danlos Syndrome and pyroluria?

By 87 Comments

brighton
Brighton Diagnostic criteria for the Joint Hypermobility Syndrome (source: http://ednf.org/assessing-joint-hypermobility)

I recently received a question about the possible connection between joint hypermobility / Ehlers-Danlos Syndrome and pyroluria. It’s been on my long list of topics to look into, learn more about and write about because I also feel there may be a connection to pyroluria, a social anxiety condition. People with pyroluria can often relate to these symptoms: joints popping, cracking, or aching; pain or discomfort between the shoulder blades; or cartilage problems (likely due to low zinc levels).

So here goes, I’ll share what I know so far. I’d love to gather more information and am looking for feedback too so please do share your experiences in the comments.

Joint hypermobility syndrome is described in this British Medical Journal paper: by expert Professor Rodney Grahame:

Joint hypermobility syndrome (JHS), previously known as benign joint hypermobility syndrome (BJHS), is a heritable disorder of connective tissue that comprises symptomatic hypermobility predisposing to arthralgia, soft tissue injury, and joint instability. It is indistinguishable from the hypermobility type of Ehlers-Danlos syndrome.

Complications may include autonomic dysfunction, proprioceptive impairment, premature osteoarthritis, intestinal dysmotility, and laxity in other tissues causing hernias or uterine or rectal prolapse.

Symptoms are often minimal or mild, but 168 out of 700 patients with joint hypermobility syndrome (24%) attending the UCH Hypermobility Clinic already had an established chronic pain syndrome at the time of their first outpatient attendance. These patients were experiencing serious pain, disability, and impairment of the quality of life, some patients becoming chairbound or even bedbound.

As reported in this Dec 2014 paper: United States Physical Therapists’ Knowledge About Joint Hypermobility Syndrome Compared with Fibromyalgia and Rheumatoid Arthritis despite the fact that joint hypermobility syndrome is one of the most common inherited connective tissue disorders, “many physical therapists in the United States are not familiar with the diagnostic criteria, prevalence or common clinical presentation.”

This is the actual request that I received from Catriona, one of my blog readers/facbeook followers:

I was wondering if you’d ever be interested on doing a post on Ehlers-Danlos Syndrome/Joint Hypermobility. I wonder whether many of your clients suffer from it and possibly don’t even realize. It’s a group of connective tissue disorders which had mostly been thought to affect only the joints, skin, skeleton and blood vessels, but it turns out that connective tissue is a necessary part of all organs and that there are much higher than expected incidences of anxiety, depression, chronic pain which is often labelled as fibromyalgia, gastrointestinal problems and more. I suspect a lot of people with EDS [Ehlers-Danlos Syndrome] also have pyroluria, there are high numbers of people having to deal with POTS [Postural orthostatic tachycardia syndrome] and MCAS[Mast Cell Activation Syndrome] and very high levels of disability with it. I think that having connective tissue in the gut that might be more prone to tearing and leaking might make dietary changes even more important, but might also be one of the things that results in less good responses to nutrient therapies. As well as that there are so many people with EDS on cocktails of medications for pain, sleep, anxiety, depression, reflux, IBS, menstrual disorders etc. and I can’t help but wonder whether all those medications are actually sometimes making things worse for some. Is it something you’ve come across much? Thanks.

There are a number of papers published in 2014 and 2015 linking EDS / Ehlers-Danlos Syndrome with psychiatric disorders. None mention social anxiety but anxiety is very common, as is depression.

Here is one paper that was published October 2015: Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain

Psychiatric disorders were found in 42.5 % of the EDS cohort, with 22.7 % of patients affected with 2 or more psychiatric diagnoses. Anxiety and depression were most commonly reported, with frequencies of 23.6 and 25.5 %, respectively.

This paper was published in April 2015, looking postal survey results from 250 members (over 18 years) of the Swedish National EDS Association: Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire study

Of the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS [Hospital Anxiety and Depression Scale]

This March 2015 paper: Psychopathological manifestations of joint hypermobility and joint hypermobility syndrome/ Ehlers-Danlos syndrome, hypermobility type: The link between connective tissue and psychological distress revised addresses generalized joint hypermobility and other disorders as well as anxiety:

Psychological distress is a known feature of generalized joint hypermobility (gJHM), as well as of its most common syndromic presentation, namely Ehlers-Danlos syndrome, hypermobility type (a.k.a. joint hypermobility syndrome – JHS/EDS-HT), and significantly contributes to the quality of life of affected individuals.

Interestingly, in addition to the confirmation of a tight link between anxiety and gJHM [generalized joint hypermobility], preliminary connections with depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorder were also found.

Of course the big question is which comes first ?

  • the EDS and pain leading to feelings of anxiety and depression
  • or the genetic factors that cause nutritional deficiencies affecting both connective tissue and contributing to anxiety/depression

I’d guess it’s likely a combination of both and that it’s going to vary by individual.

The website of the Ehlers-Danlos Syndromes National Foundation is an excellent resource for learning about the condition but interestingly they make no mention of psychiatric symptoms.

Here is some feedback I’ve received up until now, on my blog, about a possible connection to pyroluria:

  • As you can see in this blog post: Pyroluria prevalence and associated conditions Thin Basement Membrane Disease (an inherited collagen/connective tissue disorder diagnosed via kidney biopsy) may be related to pyroluria. Someone contacted me during season 3 of the Anxiety Summit and said she has pyroluria and TBMD/Thin Basement Membrane Disease. She shared that the pyroluria protocol helped with her TBMD/Thin Basement Membrane Disease symptoms.
  • Maruschka posted on the same pyroluria blog sharing this (slightly edited version): pyrrole disorder/pyroluria is big part of hypermobility, Ehlers Danlos syndrome 3 and mixed connective tissue disorder. 80% of us suffer with pyrrole in collagen issues. Often undiagnosed. Professor Rodney Grahame says every 5 people in 30 people we meet have it. Now there is a talk that hypermobility is induced by environment, so epigenetics could reverse it.
  • Ali commented on this blog post: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results saying she “immediately identified with almost all of the symptoms on your pyroluria questionairre, and ordered the test through Direct Health Care (the lab Dr. Walsh recommends). I ended up getting a mild positive urinary kryptopyrrole result .” She has also been “diagnosed with mast cell activation disorder (MCAD) and autoimmune disease (lupus, Hashimoto’s thyroiditis, celiac disease, Raynaud’s, interstitial cystitis), and Ehlers-Danlos Syndrome Type 3.” The pyroluria protocol does not seem to help her but she does have a great deal going on with her health.
  • Candy commented on the above post too, saying she has been diagnosed with Ehlers Danlos Syndrome and relates to many of the pyroluria symptoms.

I received this feedback from a colleague, Dr. Josh Friedman, an integrative psychotherapist who uses amino acids and other nutritional approaches in his practice. (You may remember him from the Anxiety Summit season 1 and then he interviewed me in season 3

One thing that I have noticed in the few folks in my practice with EDS (small sample of 4-5) is that that they tend toward low cholesterol (below 160 total) and do well with cholesterol supplementation. They do suffer from anxiety and/or depression. It seems pyroluria is a factor in some but not others (I have used the questionnaire from your book).

I look forward to learning more so I can help more people with social anxiety and hopefully some of the symptoms that may overlap with joint hypermobility and Ehlers-Danlos Syndrome.

Have you been diagnosed with joint hypermobility or Ehlers-Danlos Syndrome? And do you have pyroluria? If yes we’d love to hear if the pyroluria protocol of zinc, vitamin B6, evening primrose oil and a good copper-free multi has helped?

If you have been diagnosed with joint hypermobility or Ehlers-Danlos Syndrome and have social anxiety, we’d love to hear how you score on the Pyroluria Questionnaire

What approaches (nutritional and otherwise) have helped you? And please do share additional resources if you have them.

The Antianxiety Food Solution Amino Acid and Pyroluria Supplements

By 512 Comments

antianxiety food solution and amino acids

Here are my amino acid and pyroluria supplement recommendations. These are the products I use with my one-one clients and those doing my online group programs.

You can find most of these products in my online store at Fullscript – you’ll find details here on how to set up and account (you just need to do this once) and make your purchase.

Purchase products through our Fullscript virtual dispensary.

Questionnaires and information

My publisher would not allow me to make specific product recommendations in my book so this list is a courtesy to those of you who have purchased the book.

If you do not have my book I highly recommend getting it and reading it before jumping in to taking supplements: The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings

There is a complete chapter on the amino acids and one for pyroluria, plus information on real whole food, sugar and blood sugar, gluten, digestion and much more.

Once you have read it you can use these blogs as summaries (they do contain some information that is not in my book).

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

Please read and follow these Amino Acid Precautions

Here is the Pyroluria Questionnaire from The Antianxiety Food Solution and additional information on Pyroluria, social anxiety, introversion: a summary

 

Supplements for Low Blood Sugar (anxious, shaky between meals and intense sugar cravings)

Glutamine helps with low blood sugar, may help eliminate the strong desire for something sweet when opened on to the tongue, and is very healing for the digestive system

 

  • Pure Encapsulations L-Glutamine 500mg:  L-glutamine (free-form) 500 mg, vitamin C (as ascorbyl palmitate) 5 mg. The capsules can be swallowed or the capsule can be opened on to the tongue
  • Designs for Health Glutamine Powder: This is a powdered glutamine that you can use right on your tongue or even mixed in water. The taste is quite pleasant.

 

Supplements for low GABA (stiff and tense muscles, anxious, panic attacks, use sugar/wine to relax)

GABA helps to raise GABA levels.  I find GABA to be most effective when taken sublingually or opened on to the tongue. I find GABA to be more effective than pharmaGABA for most of my clients. I don’t ever use Phenibut (which the FDA recently removed from non-prescription use).  Here are some GABA products that I like and use with clients.

Source Naturals GABA Calm. This is a pleasant-tasting sublingual product that is my most popular and most effective form of GABA I use with my clients.

Nutritional Fundamentals for Health GABA-T SAP: gamma-Aminobutyric acid (GABA) 300 mg, l-Theanine 150 mg. This is pleasant-tasting when opened on to the tongue and works very well when GABA Calm can’t be used.  I find best results when it it used opened on to the tongue.

Enzymatic Therapy GABA: gamma-Aminobutyric acid (GABA) 250 mg. This is also pleasant-tasting when opened on to the tongue and works very well when GABA Calm can’t be used.  As with all GABA products, I find best results when it it used opened on to the tongue.

ProThera 500mg GABA: GABA (gamma-aminobutyric acid) 500 mg.  You will likely need to open this up and start with less than a full capsule during the day (a full capsule may be fine at night for some individuals)

Designs for Health Stress Arrest: Niacin (niacinamide) 100 mg, Vitamin B6 (pyridoxine HCL) 10 mg, Pantothenic acid (d-calcium pantothenate) 100 mg, GABA 300 mg, Glycine 200 mg

 

Supplements for low serotonin (worry, rumination, negativity, afternoon and evening cravings and insomnia)

Tryptophan and/or 5-HTP can help to raise low serotonin. I typically recommend starting with tryptophan and don’t recommend 5-HTP if you have high cortisol as it can raise cortisol. Some people do better on tryptophan and some do better on 5-HTP.

Lidtke l-tryptophan 500mg:  I only recommend the Lidtke brand for tryptophan as quality is a big consideration when it comes to this amino acid. This can be opened and/or chewed but doesn’t taste good. It can be mixed with inositol powder to make it more pleasant (see below) or with mashed banana. NOTE: This is not the same as the Lidtke Tryptophan Complete which has ingredients other than tryptophan making it more difficult to titrate up.

Lidtke l-Tryptophan Chewable: tablets contain 200mg L-Tryptophan per 2 tablets. This chewable form is both good and bad. It’s good because it’s a nice 100mg of tryptophan per tablet, is chewable, tastes good and is suitable for kids and “pixie dust” individuals (who need a very small amount). The bad aspect is that it does contain sugar and is quite sweet. Because you are continually consuming something sweet you may end up over-consuming them if sugar addiction is your issue.

Pure Encapsulations 5-HTP 50mg:  Some of my clients do better on 5-HTP and some find taking this during the day and tryptophan at night works well for them.

 

Designs for Health Inositol: is fabulous for obsessive thoughts/behaviors that the tryptophan isn’t quite enough for. It’s also been shown to be very helpful for OCD itself. The powder has a slightly sweet taste and I recommend taking it in the powdered form. You can take up to 18g a day but I suggest starting with 2g a day and building up as needed. I think it  makes a great addition for mixing into the nasty tasting tryptophan – I suggest starting with 2g inositol per 500mg tryptophan.

Douglas Labs 1mg melatonin sublingual: If the tryptophan isn’t enough for sleep issues, adding this often helps if you can’t fall asleep (and if it’s a low serotonin/low melatonin issue). Start with one and increase to 3 as needed

Douglas Labs 3mg melatonin prolonged release: If the tryptophan isn’t enough for sleep, adding this often helps if you wake in the night and if it’s a low serotonin/low melatonin issue. Start with one and increase to 2 as needed.

 

Supplement for low endorphins (comfort and reward eating, weepy, pain issues)

DPA or D-Phenylalanine is the amino acid that helps to raise endorphins and eliminates the comfort/reward eating and the feelings of “I deserve this” and LOVING certain foods

Lidtke Endorphigen 500mg: Riboflavin 5mg, Pyridoxal 5-phosphate 5mg (enzymatic form of vitamin B6), D-Phenylalanine 500mg. This is also one of my top products that I recommend. I used to recommend simply chewing the capsule to get the quickest and best effects and this worked well when it was produced in a gelatin capsule. Now it’s made with a cellulose capsule and chewing doesn’t work at all well so opening the capsule (or just biting off the top) and tipping the powder into your mouth works well. It does taste quite pleasant – some of my clients think it has a dark chocolate-like taste. A few people don’t like the taste at all but even then, it can be very effective when low endorphins are an issue.

 

 

Supplement for low catecholamines (tired, coffee-drinking, blahs, poor focus, low motivation)

Tyrosine is the amino acid that helps to raise low catecholamines and can often help you quit coffee if you “self-medicate” due to low catecholamines.

Progressive Labs tyrosine 500mg: 500mg l-tyrosine.  This is the last amino acid I trial with my anxious clients because it can make you more anxious (although with one client it reduced her anxiety because she was able to focus better at work).

 

Vitamin C for negating the effects of any amino acid

Vitamin C 1000mg is used to negate the effects of any amino acid. I used to use EmergenC but this still contains folic acid, so here are some good alternate vitamin C recommendations:

Designs for Health C + Biofizz: Vitamin C 2569 mg (as Ascorbic Acid, Calcium Ascorbate, Magnesium Ascorbate) Quercetin 20 mg Hesperidin 20 mg Rutin 10 mg. This one mixes nicely in water and can also be added to a smoothie but tastes quite sweet for many people. I personally prefer less of a sweet taste.

Designs for Health Buffered Vitamin C: Vitamin C (as ascorbic acid) 2000 mg, Calcium (as calcium ascorbate) 80 mg, Magnesium (as magnesium ascorbate) 160 mg, Potassium (as potassium bicarbonate) 200 mg. This one doesn’t mix very well in water and can also be added to a smoothie. The taste is not very pleasant.

 

The supplements for pyroluria

Zinc, vitamin B6, evening primrose oil and a good copper-free multivitamin are what I use for my clients with pyroluria or for those who score above 15 on the questionnaire:

Solaray OptiZinc 30mg. Zinc (as Zinc Monomethionine [OptiZinc®] 30 mg, Vitamin B6 (as Pyridoxine HCl) 20 mg. The zinc in this form seems to be well absorbed by many of my clients and is available over the counter. This also does not contain copper. Be aware as there are other OptiZinc products on the market that do contain copper (Source Naturals is one example)

Douglas Labs Opti-Zinc: Zinc (from 150 mg Zinc Monomethionine) 30 mg. The zinc in this form seems to be well absorbed by many of my clients. This also does not contain copper.

Metagenics Zinc Drink:  Zinc sulphate monohydrate in a base of distilled water. Each 2 tsp provides Zinc sulfate monohydrate 8 mg. Use this for testing your zinc status as described here: Zinc deficiency is common: using liquid zinc status test as an assessment tool

Here are a selection of 100 mg Vitamin B6/pyridoxine products. Use dream recall as a way to monitor if it’s working, plus social anxiety and mood improvements. If this doesn’t work you may need to use the activated form in conjunction with or instead of this one (see below)

Progressive Labs 100mg Vitamin B6 (contains rice flour)

NOW 100mg Vitamin B6 (contains rice flour)

Vital Nutrients 100mg Vitamin B6  (Only B6 and glycine)

Klaire Labs 250mg Vitamin B6 (Use this one if you find you do better with more i.e. 250mg)

Pure Encapsulations P5P 50 (activated B-6): pyridoxal 5 phosphate (activated B6) 50 mg, vitamin C (as ascorbyl palmitate) 3 mg. This activated form of B6 may be needed if the 100-500 mg B6/pyridoxine doesn’t work or may be needed in addition to vitamin B6/pyridoxine. Use dream recall as a way to monitor if it’s working, plus social anxiety and mood improvements.

Designs For Health P5P 50mg: another good product with pyridoxal 5 phosphate (activated B6) 50 mg

Now Foods Super Primrose 1300mg: Evening Primrose Oil (Oenothera blennis) (Seed) 1.3 g (1300 mg) – 120 count. GLA is often low in pyroluria and EPO helps with zinc absorption and PMS symptoms.

Designs for Health Twice Daily Multi: This is a good copper-free multi. It also contains Folates (NatureFolate™ blend) 400 mcg instead of folic acid (no DFH products contain folic acid).

 

Free form amino acids and magnesium

Pure Encapsulations Amino Replete: A free form amino acid powder blend that does contain tryptophan. It does contain fructose, flavors and luo han guo

Genestra Amino Complex: A free form amino blend in capsules. It does contain tryptophan

Allergy Research Free Aminos: A free form amino acid blend in capsules. It contains 5-HTP and not tryptophan. I’d prefer it if it had tryptophan.

Designs for Health Magnesium Malate 360mg

 

Liquid and powder options for children

Here are some liquid and powder options for children (or for adults, if you have a hard time swallowing pills):

Carlson 100mg B6: Use dream recall (and no more nightmares) as a way to monitor if it’s working, plus improvements in social anxiety and mood.

Designs for Health 50mg P5P (with a little zinc and magnesium): This is the activated form of B6. Use dream recall (and no more nightmares) as a way to monitor if it’s working, plus improvements in social anxiety and mood.

Pure Encapsulations 15mg Zinc gluconate: A liquid zinc option.

Metagenics 15mg Zinc (as zinc sulfate): A liquid zinc option.

Designs for Health Zinc Challenge: Zinc sulphate monohydrate in a base of distilled water. Each 2 tsp provides Zinc sulfate monohydrate 8 mg. I use this for testing zinc status but it could be used as a supplement too.

BodyBio evening primrose oil: Gamma Linolenic Acid/GLA (omega-6) 473 mg. GLA is often low in pyroluria and EPO helps with zinc absorption, eczema and PMS symptoms.

Klaire Labs Vitaspectrum multivitamin/mineral: This is a great copper-free, iron-free powdered multi for kids. You can mix the powder directly into room temperature or cold foods or beverages just before serving.

Pure Encapsulations Amino Replete: A free form amino acid powder blend that does contain tryptophan. It does contain fructose, flavors and luo han guo.

Pure Encapsulations Magnesium Citrate 250mg powder

Designs for Health Magnesium Bisglycinate Chelate 300 mg powder: This one does have stevia and natural flavors

Also see chewable tryptophan, GABA Calm and inositol powder, plus powdered Vitamin C (all listed above).

Purchase products through our Fullscript virtual dispensary.

 

The above statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease.  Check with your doctor before starting a new supplement program.

Can Social Anxiety Be Reversed with Nutrition?

By 62 Comments

underground-wellness-radio

Sean Croxton host of Underground Wellness Radio shares how:

  • he was once prescribed Paxil for social anxiety (and depression)
  • he doesn’t like big crowds
  • he can speak on stage in front of 100s of people with no problem
  • as soon as people come to talk to him afterwards he wants to go!

Can you relate to any of this?

He thinks he has pyroluria, a social anxiety condition where you have a higher need for some key nutrients: zinc, vitamin B6 and evening primrose oil.

We are often surprised when we hear that someone who appears to be outgoing and extroverted (like Sean) actually has social anxiety.

It’s more common than you think and is made worse under stressful situations: life stresses, gluten sensitivities etc.

I share how my social anxiety got really bad in my late thirties (when my PMS was so bad) and how

  • many of us with pyroluria push through and deal with it
  • we just want to stay home
  • we don’t really want to see people

Not everyone needs omega-3 supplements!

We discuss omega-3s and omega-6s and how pyrolurics often don’t need to supplement with omega-3s like fish oils but can extract the omega-3s from the foods they eat: grass-fed red meat, wild fish like salmon, leafy greens and walnuts.

Pyrolurics often do need to supplement with the GLA form of omega-6 that we find in evening primrose oil as GLA is often low, plus the GLA enhances zinc absorption.

(by the way: I said alpha linolenic acid (ALA) but should have said gamma linolenic acid (GLA)

A good copper-free multi is part of the protocol because low zinc often means high copper and this can make you more anxious.

Looking at other sources of copper is a helpful for many pyrolurics: eating too many nuts, baking with nut flours, the copper IUD.

You don’t want to miss this part…Sean asks if you can cure introversion with this pyroluria protocol. If you are an introvert and force yourself in social settings, feel very uncomfortable and anxious being around big groups of people then you’re going to have to watch the end of the video for my answer!

You can watch the whole snippet here  

This is part of my interview on the Depression Sessions, a FREE online event hosted by my friend Sean. I’ll also be sharing information about the amazing amino acids – inexpensive, over-the-counter supplements that can lift your mood and end anxiety in minutes!

Sean traveled the country to interview the best of the best experts — medical doctors, naturopaths, nutritionists, and bestselling authors — on what really causes depression and anxiety and what to do about it. 

Some of us (like me) flew to San Diego to be interviewed in his home. It was such a thrill to be interviewed by the legendary Sean Croxton and is an honor to be part of this group of experts!

Here are just a few of the amazing experts you’ll hear from:

  • Suzy Cohen, also known as America’s Pharmacist, uncovers specific prescription drugs that rob your body and brain of mood-friendly nutrients.
  • Datis Kharrazian will show you what insomnia, anxiety, and the symptoms that tag along with depression can tell you about what’s causing it.
  • Hyla Cass, a medical doctor and integrative psychiatrist (who has been featured on two prior Anxiety Summits), shares her best tips for transitioning OFF of psychiatric meds while avoiding or minimizing common withdrawal symptoms.
  • Ben Lynch (another Anxiety Summit favorite) reveals the incredibly common genetic mutation known to drive depression (and anxiety) … and the critical nutrients that make such a big difference.

This is not your ordinary online health summit. You can expect high-quality interviews, HD production and picture quality, and a life-changing experience!

Click HERE to sign up and to watch the trailer (I hear it’s gone viral on Facebook!) and catch me sharing some scary facts on medications and very young kids, and some excellent gems from other speakers on the Depression Sessions.

Of course you’ll also get access to my whole interview, when it airs in June, plus all the other great interviews.   Just be sure to sign up here to get access to all of them:  https://at105.isrefer.com/go/depreg/trudyscott/

 

Pyroluria prevalence and associated conditions

By 86 Comments

pyroluria-prevalence

Pyroluria is a genetic condition that is frequently associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. People with this problem experience varying degrees of anxiety or fear, often starting in childhood, but they usually manage to cover it up and push through. They tend to build their life around one person, become more of a loner over time, have difficulty handling stress or change, and have heightened anxiety symptoms when under more stress.

Addressing low levels of the mineral zinc and vitamin B6, together with some other nutrients and stress management, are key to addressing these symptoms.

You can read more about pyroluria, sometimes called high mauve or pyrrole disorder here

Pyroluria is far more common that we realize and is not considered a real condition in conventional medicine or mainstream mental health.

I’d like to share the prevalence of pyroluria and the many related conditions/syndromes (other than those we have listed on the current Pyroluria Questionnaire from The Antianxiety Food Solution

I discussed some of this in my interview on the Anxiety Summit season 3: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results and in my Closing call 60+ Nutritional & Biochemical Causes of Anxiety and Recommended Supplements so here it is all in one place.

This is an excerpt from my book The Antianxiety Food Solution:

Joan Mathews-Larson is someone who I consider an expert on the subject of pyroluria. In her book Depression-Free Naturally, she reports the prevalence as follows: 11 percent of the healthy population, 40 percent of adults with psychiatric disorders, 25 percent of children with psychiatric disorders, 30 percent of people with schizophrenia, and 40 percent of alcoholics.

Abram Hoffer worked primarily with schizophrenic patients, but he found pyroluria was also present in 25 percent of his nonschizophrenic patients, including adults with anxiety, depression, and alcoholism, and children with learning disorders and behavioral disorders.

According to McGinnis, pyroluria is also present in about 46 percent of people with autism spectrum disorders and 71 percent of those with Down syndrome.

I work primarily with adult women who are anxious, depressed, or both and have found that at least 80 percent of my clients with moderate to severe anxiety have a large number of pyroluria symptoms.

I thought it would be useful to summarize the above percentages for some clarity. I used some educated guesses to get some ranges we may expect to see. Keep in mind that the differing percentages are because of the different populations each practitioner works with:

  • the healthy population : 11% (Joan Mathews Larson)
  • adults with psychiatric/mood disorders like anxiety and depression: 40% (Joan Mathews Larson)
  • children with psychiatric/mood disorders like anxiety and depression: 25% (Joan Mathews Larson)
  • children with learning disorders and behavioral disorders: 25% (Abram Hoffer)
  • schizophrenics: 30% (Joan Mathews Larson)
  • alcoholics: 25% (Woody McGinnis and Abram Hoffer) to 40% (Joan Mathews Larson)
  • autism spectrum disorders: 46% (Woody McGinnis)
  • Down Syndrome: 71% (Woody McGinnis)
  • adult women with anxiety and/or depression: up to 80% (Trudy Scott)

There are other related conditions where there have been reports of improvements in both conditions (when on the pyroluria protocol):

Other factors/conditions to consider:

  • Miscarriage – Carl Pfeiffer observed that pyroluria is more common in girls and that girls in the family often look alike. It seems that boy babies are more frequently miscarried
  • MTHFR defects – I have been hearing that many people with pyroluria also have one or both of the MTHFR polymorphisms. We know that methylation polymorphisms are a factor in miscarriages and it would be interesting to know if more boys are miscarried.
  • Low histamine (histapenia) or high histamine (histadela) – many pyrolurics also have one or the other. I’m not sure of the prevalence but I’m sure Dr. William Walsh has some numbers which I plan to find.
  • Chronic fatigue syndrome/CFS – the common issues with CFS and pyroluria seem to be low zinc and low iron, plus inflammation. You can read more here: Pyroluria and chronic fatigue syndrome: is there a link?
  • Low oxytocin and social anxiety and autism – the common factors seem to be oxytocin receptor gene (OXTR) defects, low serotonin and low zinc

Other conditions that have a social anxiety aspect, a possible neurotransmitter imbalance with a likely pyroluria connection. These came up as questions during season 3 of the Anxiety Summit and I’ll report back as I find out more:

  • Alice in Wonderland Syndrome. I don’t know if there is there a connection between pyroluria and Alice in Wonderland Syndrome (where the person sees large or small objects/people and often has migraines). I had never heard of this condition but my quick search had me wondering about the word “hallucinations.” The original work by Carl Pfeiffer was with schizophrenics who had pyroluria so it’s possible that there is a connection.
  • Selective mutism I also don’t know if there is a connection between pyroluria and selective mutism. We do know that selective mutism often goes hand in hand with anxiety and social anxiety.

Both young girls with the above conditions did score high on the pyroluria questionnaire and it will be wonderful to hear if the pyroluria protocol helps them. I really do hope so!

I will be doing more digging to find the connections between pyroluria and Lyme disease, leaky gut and oxalate issues. I also plan to take a deeper dive into the joint problems we see in pyrolurics so stay tuned for future blogs on these topics.

If you’re aware of any other conditions related to pyroluria or if have pyroluria and have seen other health conditions improve, please do share in the comments.

Pyroluria/social anxiety protocol: why aren’t I getting results? (trouble-shooting checklist)

By 111 Comments

question-mark-452707_1280

How do you trouble-shoot when you score high on the Pyroluria Questionnaire from The Antianxiety Food Solution  or even have a positive pyroluria urine test but you don’t seem to be getting the results you expect?

You still have social anxiety, that inner tension that you push through and deal with, and likely still feel uncomfortable when in large groups. You force yourself to put on the confident brave face. You may wish you could be more like your extrovert friends and actual enjoy socializing and speaking in public/on stage – without the fear and anxiety. You may still not be a big breakfast eater and have morning nausea. You may not yet be having pleasant dreams that you always remember.

(If pyroluria is new to you here is the Pyroluria Questionnaire from The Antianxiety Food Solution and here is a nice summary – Pyroluria, social anxiety, introversion: a summary )

This checklist is a starting point to try and figure out what may be the issue. These are the questions I’d work through with someone who is working with me one-on-one.

I discussed 21 of these in my interview on season 3 of the Anxiety Summit: Pyroluria, Amino Acids and Anxiety: Troubleshooting when you are not getting results

As you heard during the interview, I added MTHFR and I’ve even added a few more since then. I expect this list to grow.

  1. What form of zinc are you taking and is it free from copper? My favorite is Optizinc (zinc monomethionine)
  2. Have you made sure that there is no copper in your multivitamin or other supplements?
  3. Have you been taking evening primrose oil and if yes, how much?
  4. Did you test your fatty acid levels? What are the results? Did it show a need for GLA (I like evening primrose oil rather than borage oil)
  5. What is your alkaline phosphatase (blood test) – less than 70 may indicate a need for zinc
  6. Have you done the zinc tally/challenge with zinc sulfate and does it taste like water or does it taste really bad? If you zinc levels are good it should taste really bad
  7. Did you test copper and ceruloplasmin, and if yes, what were the results?
  8. Did you do the pyroluria urine test? What are the results?
  9. What’s your score on the pyroluria questionnaire ? And which symptoms do you have?
  10. What is your score on the introversion questionnaire?
  11. What were your dreams like before starting the protocol and now? How high did you go on the vitamin B6?
  12. On a scale of 1-10, what was your social anxiety before and now (10 is worst)
  13. What is your stomach acid like? And have you trialed Hcl supplements? Tested total protein (in blood)
  14. Do you eat grass-fed red meat (a good source of zinc, iron and omega-3s?
  15. Do you eat sugar? Refined sugar and processed foods? Or even “healthy” sweeteners such as honey in large quantities? (sugar depletes zinc)
  16. Do you eat large quantities of nuts or bake with nut flours? (the copper in the nuts may be affecting your zinc)
  17. Do you have a copper IUD, copper pipes, copper pots?
  18. Have you done a hair analysis and found high copper or high hidden copper?
  19. How much and how often do you exercise? What about bikram/hot yoga? Sweating depletes us of zinc
  20. Have you used any of the amino acids? And seen good results?
  21. Do you eat gluten and have a gluten sensitivity? If yes, have you healed your gut? If not, you may have malabsorption
  22. Are you completely grain-free? This may be impacting your vitamin B6 levels)
  23. Do you have amalgams/silver fillings? Did you have them removed and did a mercury detox? Were you tested for heavy metals? Zinc absorption can be blocked by heavy metals (we talked about this in season 2)
  24. Do you have the MTHFR polymorphism? It’s common with pyroluria and this may mean you need higher amounts of the supplements
  25. Do you have high histamine/hisadelia or low histamine/histapenia? Pyrolurics often have one or the other
  26. Are you taking benzodiazapines or have recently quit benzodiazapines? Your unresolved anxiety may be due to this fact (we talked about this in season 1)
  27. Do you have parasites, candida, dysbiosis, SIBO or other digestive issues? These can be considered stresses and pyroluria symptoms are worse under stress
  28. Do you have Lyme disease or another infection? These can be considered stresses and pyroluria symptoms are worse under stress
  29. Do you have food sensitivities?  This may contribute to malabsorption.  This can also be considered a stress and pyroluria symptoms are worse under stress
  30. Do you have problems with histamine-containing foods? This can be considered a stress and pyroluria symptoms are worse under stress.  Also, vitamin B6 is a co-factor needed for the DAO enzyme, which is responsible for the degradation of histamine.
  31. Do you have issues with oxalates? This can be considered a stress and pyroluria symptoms are worse under stress. Oxalates can also bind to minerals and lower the levels
  32. Have you been/are you exposed to mold and other toxins? These can be considered stresses and pyroluria symptoms are worse under stress
  33. Do you have low oxytocin levels?  Do you have a genetic variation in the oxytocin receptor gene (OXTR). Oxytocin has been implicated in anxiety, depression and related stress phenotypes
  34. Is your life super-stressful? Stress makes pyroluria worse
  35. Do you have adrenal issues? We need good adrenal function for optimal digestion, being able to handle stress and being able to fight off infections/avoid getting parasites and dysbiosis
  36. Do you have hormonal issues – PMS, perimenopausal or menopausal symptoms?  The pyroluria protocol helps and this could be a clue that something is off

This list is NOT in my book The Antianxiety Food Solution but the pyroluria questionnaire, protocol and testing information is (my book has a whole chapter on pyroluria).

If you are not already registered for the Anxiety Summit you can get live access to the speakers of the day here: www.theAnxietySummit.com

Missed this interview or can’t listen live? Or want this and the other great interviews for your learning library? Purchase the MP3s or MP3s + transcripts and listen when it suits you.

You can find your purchasing options here: Anxiety Summit Season 1, Anxiety Summit Season 2, and Anxiety Summit Season 3.

Please share your results and ask questions in the comments.

The Anxiety Summit – Pyroluria, Amino Acids and Anxiety: Real Cases, Real Solutions

By 22 Comments

 

Karla A Maree CNC, Neuronutrient Therapy Specialist, is interviewed by host of the Anxiety Summit, Trudy Scott, Food Mood Expert and Nutritionist, author of The Antianxiety Food Solution.

Pyroluria, Amino Acids and Anxiety: Real Cases, Real Solutions

  • How pyroluria affects mood and anxiety and introversion
  • Amino acids GABA and tryptophan: how they can help you feel less anxious and happier in as little as 5 minutes
  • What is a pixie dust person
  • Gina, case study 1: social anxiety/pyroluria, birth control pill, vegetarian, low GABA, low serotonin and low iron
  • Mark, case study 2: social anxiety, pyroluria, claustrophobia, low serotonin, very sensitive to noise, gluten sensitivity

Here are some snippets from our interview:

When we do a trail of an amino acid, you open the capsule into water and hold this in your mouth for 30 seconds to 2 minutes. It bypasses the digestive system and you can expect results in 5 minutes or less

“Pixie dust” people are very sensitive to the environment or vitamins and we have them do finger touches of the opened capsule [of an amino acid] and that small amount can literally shift their brain chemistry

Here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution. I encourage you to do it and see which sections may be an issue for you.  And as Karla mentioned re-do it frequently to see how much you’ve improved if you’ve been using amino acids.

We discussed why Urinary neurotransmitter testing falls short and why we use the above questionnaire instead.

Here is the Pyroluria Questionnaire from The Antianxiety Food Solution.   Karla has pyroluria and having it helps her identify with her clients.  She also used to be an introvert but when she is on the pyroluria protocol she can easily walk up to people and talk to them. 

[please stay tuned for the Dalai Lama vegetarian article]

If you are not already registered for the Anxiety Summit you can get live access to the speakers of the day here: www.theAnxietySummit.com

Missed this interview or can’t listen live? Or want this and the other great interviews for your learning library? Purchase the MP3s or MP3s + transcripts and listen when it suits you.

You can find your purchasing options here: Anxiety Summit Season 1, Anxiety Summit Season 2, and Anxiety Summit Season 3.