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

Pyroluria

I was called a vulture for preying on sensitive people in a social anxiety group – because I mentioned pyroluria and a nutritional solution

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I was called a vulture

Earlier this week I was called a vulture for preying on sensitive people in a social anxiety group because I mentioned pyroluria and a nutritional solution in response to someone asking for help. I shared much of this on Facebook and the response has been huge – supportive, understanding and encouraging, and also something many of you have also faced and can relate to. I’m publishing it as a blog post too because I feel there are many takeaways and lessons we can all learn from this.

The person asking for help posted this:

I’m seriously stuck. I’ve been battling social anxiety disorder my whole life. I feel like my social skills have gotten worse during 2020-2021. Is anyone the same way? And If possible can anyone give me some good advice?

I posted this in response to the request for advice:

Look into pyroluria and the nutrient protocol – life-changing for me (and my clients – disclaimer: I’m a nutritionist)

And this is the response from someone else in the group:

So not medicine. I think as a nutritionist you shouldn’t be advising people to avoid actual medical help. Foods can’t help but most depression and anxiety isn’t stress based. It’s a biological chemical imbalance. Food won’t help it in the long run. As someone who’s had bipolar, depression, anxiety, social anxiety, insomnia and possible schizo. I have known people to get seriously ill from people that couldn’t manage to be actual doctors. I’ve lost a friend due to them being advised to stop meds and take some herb. Please unless you are actually here because you have social anxiety and such. Could you please leave and stop acting like a vulture over the sensitive people.

I get that it can be tough to grasp that nutrition and nutrients could be a solution for social anxiety but even with a response like this I will continue to share my message.

This was my response:

Correct, not medicine … nutrition. I had social anxiety and panic attacks and diet (gluten-free, caffeine-free, sugar-free etc) and nutrients like zinc, vitamin B6, GABA, tryptophan and more solved my anxiety. I’m passionate about creating awareness because I’ve seen “nutritional psychiatry” work for 100s of thousands of folks.

Please be open-minded … and google “nutritional psychiatry”, “gut-brain”, “pyroluria social anxiety” and “gluten schizophrenia” … you will be pleasantly surprised. It’s going to take some time for all this to be part of mainstream psychiatry but it’s in the research and awareness and acceptance is growing.

I’m sorry about your loss but I would never advise anyone to stop taking their meds. For folks who want to explore this approach we always work in conjunction with their prescribing doctor.

It’s also not very nice calling someone a vulture but I understand that the idea that food and nutrients could be so powerful when it comes to anxiety and mental health can be tough when you first hear about it.

Why I’m sharing this – it’s not for sympathy or to call this person out

I’m not sharing this here for sympathy.

I’m not sharing this to call out this person who called me a vulture or to judge or shame them.

I’m sharing it to illustrate the challenge we have with getting this message out.

I’m sharing it in case you’ve tried to tell a loved one or friend or colleague about the power of anxiety nutrition solutions and have had push-back.

I’m sharing here so we remember to have empathy for someone who doesn’t yet know or understand what we have learned and experienced (no matter what they say or how they say it or even if they have even been preyed on in the past so a comment like this may be justified in their mind).

I’m sharing here because I truly believe in the power of planting seeds of knowledge.

I’m sharing here because I believe everyone deserves to feel their absolute best every single day.

I’m sharing here because everyone struggling with anxiety and social anxiety deserves to know about the growing field of “nutritional psychiatry” in mainstream medicine.

This is why I’m sharing here and why I’ll continue to share nutritional solutions in groups where folks are asking for help for social anxiety, anxiety and panic attacks (and other conditions where pyroluria and neurotransmitter imbalances are common, and there is a role for diet and nutrients).

Why the disconnect and the possible role of neurotransmitter imbalances

I’m hoping all this can help you as you reach out and offer support to someone in an online group. And also help you as you share what you have learned or experienced personally when it comes to nutritional solutions for social anxiety/anxiety – with loved ones, community members, friends and colleagues who are sometimes less than receptive.

I suspect one big disconnect is comprehending that lifestyle/diet/nutrients could help with anxiety and mental health challenges. Heart disease, diabetes, high blood pressure and cancer are more recognized as being lifestyle conditions even dietary and lifestyle changes are not always implemented.

I also often hear this: “my anxiety or social anxiety or panic attacks are so severe (or so complex) there is no way nutrients and nutrition could help! I need medications for sure.”

If someone has nutritional deficiencies or neurotransmitter imbalances, that may also be playing a role in how they respond. For example, low serotonin can make you feel hopeless, fearful, negative, overwhelmed and even angry. This is in addition to feeling anxious and not sleeping well, so you’re more likely to be cranky and irritable.

Links to resources for you to share

Here are links if you need some resources to share or in case you’re new to some of this:

Tamara’s wonderful feedback about gluten and vitamin D

This was Tamara Underwood’s response to my vulture post and her powerful feedback about gluten and vitamin D:

That was a thoughtful response Trudy. I think when people have complex health issues, they think the solution needs to be complex. I had no idea how powerful nutrients could be until it solved my own health issues. Often, it is returning to basics and using foundational support in a targeted way.

I’ve had chronic migraines (3-4 a week) since I was a toddler. Tried every medication, label and off label, to manage them for 40+ years. Removing gluten was life changing. I’ve been migraine free for 8 years now.

Also, about 10yrs ago, I experienced a very dark, unexplained depression for nearly a year. Of course drugs and therapy are the first line treatments. Not sure why I was opposed to starting there but thankful. My Vit D was 4.1. I felt so radically better within a week of starting repletion that I went back to school for my MS in Clinical Nutrition.

I think about how different life might be now, 10 yrs later, had I not pushed for testing. Psych meds wouldn’t have improved my Vit D so I would have been prescribed all the variations and combos and told how complex my case was when it didn’t help. [One study supporting an association between low vitamin D and depression]

There are just so many toxicities, deficiencies, and imbalances worth exploring if your mental wellness suffers. I’m passionate about this subject and a big fan of yours Trudy.

I’m thrilled that going gluten free and addressing low vitamin D solved her migraines and depression. It’s so wonderful to hear Tamara was inspired to go back to school to study nutrition. She now does this work helping professionals (firefighters, EMTS etc.) who shoulder a greater burden of stress and trauma. Check out Underwood Functional Wellness. I appreciate her for allowing me to share here.

I plan to update this blog with more of the wonderful insights from my community on Facebook but folks are still actively engaging and I need to get permission to share here. Stay tuned for more.  You can also join the discussion on the Facebook post here.

Until then, feel free to post your insights, thoughts, experiences (and questions if you have them) in the comments below.

Let us know how nutritional approaches have helped your anxiety and/or other health issues?

What made you open to this approach and were you initially skeptical?

And let us know if you continue to share your success and plant seeds even when you get negative feedback – and why? And do you have resources you like to share?

Social anxiety caused by pyroluria: oxytocin, the vagus nerve, pectus excavatum and Ehlers-Danlos Syndrome

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social anxiety pyroluria

Pyroluria is associated with a type of anxiety characterized by social anxiety, avoidance of crowds, a feeling of inner tension, and bouts of depression. If you have pyroluria you may experience varying degrees of anxiety or fear, often starting in childhood, and you usually manage to cover it up and push through. You may build your 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.

It’s not well-recognized in the medical profession and has long been considered a genetic condition. More recently some practitioners have been proposing that it may be triggered by environmental toxins and that it’s not only genetic. Either way, symptoms can start to resolve within a week when low levels of zinc and vitamin B6, together with some other nutrients are addressed. Stress management is key. This can be emotional stress and the stress of toxin exposure, infections like Lyme disease, mold toxicity and even low blood sugar and gluten issues.

We would typically not connect social anxiety/pyroluria with low oxytocin, vagus nerve function or connective tissue disorders but if you read on you’ll see there are some interesting connections.

Oxytocin, social anxiety and zinc

Research has found that oxytocin levels correlate strongly with levels of social anxiety. A paper published in the Journal of Psychiatric Research looked at how variations in the oxytocin receptor (OXTR) gene is associated with an increased risk of anxiety, stress and depression in individuals with a history of exposure to early life stress. Supporting low levels of oxytocin can ease the threats of social interactions.

What is interesting is that zinc, a key nutrient for pyroluria, is needed for binding oxytocin to its receptor. You can read more about all this here: Oxytocin, social anxiety, pyroluria and autism

Sociability improves vagus nerve function and thriving at home alone

Increased sociability helps improve vagus nerve function. It’s all good and well to recommend getting out and hanging out with more people but if you have pyroluria it’s really challenging. It’s also hard work, very stressful and the added stress makes your pyroluria symptoms worse so it becomes a vicious cycle.

You can read all about this here: Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc. There is an updated section on social isolation during coronavirus and how some people are thriving being home alone.

Pectus excavatum and Ehlers-Danlos Syndrome

Pectus excavatum is an indentation in the chest wall and is related to problems with connective tissue. When it comes to pyroluria and pectus excavatum, this is what we see in common: social anxiety and depression, low zinc and low vitamin B6, dental crowding and sometimes Ehlers-Danlos Syndrome (EDS). I write more about this here: Pectus excavatum and pyroluria: is there a connection?.

I’ve written an entire blog on Joint hypermobility / Ehlers-Danlos Syndrome and pyroluria. Anxiety, depression, attention deficit (and hyperactivity) disorder, autism spectrum disorders, and obsessive-compulsive personality disorders are all common with EDS. Many folks with EDS report better less social anxiety, improved mood and often improved physical symptoms/reduced pain on the pyroluria protocol of zinc, vitamin B6, evening primrose oil and a good copper-free multi.

Resources for you

Please do share if you have pyroluria or score high on the questionnaire and have seen improvements in your social anxiety and any physical symptoms.

Essential tremor, dystonia, anxiety and cravings – diet, GABA, tryptophan, zinc and vitamin B6

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Essential tremor, dystonia, anxiety and cravings

Today I’m sharing how diet, GABA, tryptophan, zinc, vitamin B6 and other B vitamins can resolve essential tremor and sugar cravings in 2 months, and also resolve musician’s dystonia and social anxiety within 4 months.

According to Medical News Today essential tremor is a movement disorder that can cause hand tremors and “is among the most common movement disorders.” … “The tremor usually affects both sides of the body, but it may be more noticeable in the dominant hand. It tends to occur when the person is moving as well as when standing still. Genetics may be responsible for around half of the cases of essential tremor.”

Essential tremor – diet, GABA, tryptophan and B vitamins

This Croatian paper, Treatment of Essential Tremor with Multi-Modal Nutritional Therapy in a Teenage Patient, reports the “case of a 13-year-old boy with [essential tremor] causing severe functional impairment” over the previous 2 years.

“A multi-modal nutritional therapy approach” was used to target three possible areas that could be contributing to the tremors: a poor diet that was high in sugar, low GABA levels and low serotonin. These changes were implemented:

(i) diet (specifically adopting a Mediterranean diet)

(ii) GABA (through oral supplementation) and

(iii) L-tryptophan/vitamin B pathways (Triptobel oral supplement).

The papers states: “After two months of therapy, his tremor decreased significantly and he regained normal function.”

Once the essential tremor resolved, this teen was able to resume his plans to pursue a musical career as a guitar player (which had been put on hold due to the tremor and his inability to play). What wonderful results!

I’m thrilled to see tryptophan and GABA being used for this condition and am really pleased to read this case report.  Here is my commentary on the supplements and doses he used for anyone wishing to try and replicate this nutritional approach (keeping in mind there is no one-size-fits-all).

  • He used 150 mg of the Triptobel supplement three times daily at 8 am, 1 pm, and 6 pm. One capsule of  the Triptobel contains 150mg L-tryptophan and a B vitamin complex of thiamine (vitamin B1), riboflavin (vitamin B2), niacin (vitamin B3), pantothenic acid (vitamin B5), vitamin B6, folic acid (vitamin B9), and cyanocobalamin (vitamin B12).  The total tryptophan dose was 450mg per day. A typical starting dose for someone with anxiety is 500mg 2 x day so his dose was on the low-end.  The Triptobel was also used at mealtimes and according to the label “on a full stomach after a light meal, preferably without protein.” I like to use tryptophan between meals (away from protein) and a B complex with meals so I’m intrigued by this application (but wonder when protein was consumed).
  • He also used 750mg GABA twice daily at 10 am and 4 pm. This is considered a high starting dose for the majority of my clients with anxiety and I start low and build up to this amount.

Anxiety and low mood was not mentioned so I don’t know if they were factors.

It appears sugar and carb cravings were very likely a factor given that his normal daily diet contained “large amounts of refined sugars (chocolate, cake, biscuits, ice cream, etc).” The amino acids would have helped him with those cravings.

With regards to his diet, given how common movement disorders are with gluten issues, I would also consider I gluten-free diet which has been shown to have an adverse impact on neurotransmitter levels and B vitamins. Could gluten have triggered these nutritional deficiencies and the tremors?

And now to share a very similar case in an adult male … with a different and yet related approach.

Dystonia and hand tremors – and the pyroluria connection

This same Medical News Today article also describes dystonic tremor/dystonia as a movement disorder that can also cause hand tremors, stating that “the brain sends incorrect messages, resulting in overactive muscles, abnormal postures, and sustained undesired movements. Young adults and those in middle age are most likely to develop dystonic tremors, which can occur in any muscle.”

If you’ve been reading my recent articles on pyroluria (the pyroluria-vagus nerve connection and the introversion-pyroluria-loneliness connection) I’m sure you’ll be be interested to learn that there appears to be a strong link between pyroluria and focal musician’s dystonia (or musician’s cramp) in some individuals.

As you read in the blog above, Jay, also a guitar player, had to put his professional music career on hold due to musician’s dystonia. He also happened to have social anxiety and he started to notice improvements in his anxiety and tremors within the first 2 weeks. At the end of 4 months of being on the pyroluria protocol, he shared this:

I think it is, at this point, safe to say that the pyroluria treatment [120mg vitamin B6 and  60mg zinc) is, at least in my case, the cure for pyroluria and dystonia. 90%+ of my symptoms have disappeared, I am working extensively on repertoire and I am thinking about getting back into performing.

He says his experience was “akin to rebirth as a musician and also as a person.” How wonderful is that to read. Jay’s musician’s dystonia resolved and so did his social anxiety.

The outcome for the teen and Jay were similar and yet the approaches used were seemingly very different. This isn’t actually the case since zinc and vitamin B6 are co-factors that are needed to make GABA and serotonin.

Do you experience tremors, or have you been diagnosed with essential tremor or dystonia (or know someone who has)? And have you considered a nutritional approach?

Do share if you’ve seen success with either of the above approaches, and also experienced reduced anxiety or felt more social?

Why social anxiety, introversion and loneliness can be lethal and a simple nutritional solution

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trudy scott mindshare

It was an honor to be selected as one of fifteen participants for The Future of Health presentations at Mindshare in August 2019. I presented this to my peers in the integrative health and nutrition space but it’s applicable to everyone and I’d like to share it with you today.

Here is my video presentation: Why social anxiety, introversion and loneliness can be lethal and a simple nutritional solution  (click below to watch the video)

Here are some additional reading resources on much of what I cover in my 5 minute presentation:

This is the the amazing and inspiring group of speakers who I shared the stage with:

  • Amie Apigan – Why Attachment is the New Field of Medicine
  • Lauryn Lax – Eating Healthy is Killing You
  • Jess Sherman – Raising Resilient Kids in a Complex World: Will we Rise to the Challenge
  • Terry Wahls – Creating an Epidemic of Health – My Radical Path
  • Susanne Bennett – The Kimchi Revolution: How an Ancient Food Can Transform the Future of Health
  • Razi Berry – Love is Medicine
  • Kaylea Boutwell – I’ve Got Your Back: Novel Pain Therapies Transforming Spinal Care Outcomes
  • Dana Cohen – Hydration: 8 Glasses a Day is not the Way!
  • Elisa Song – Breathing Life into Your Kids
  • Joel Sprechman – Creating 1M Super Poopers & Evolving Crohn’s Colitis
  • Katy Kimball – My Plan to Empty Your Waiting Rooms (the Real Root Cause of Poor Health)
  • Heather Paulson – Why Choose? Using the Best of Both Worlds to Experience Health with Cancer
  • James Maskell – Group Visits: How Functional Medicine Reaches the Vulnerable
  • Mehgan Walker – Life, Liberty and the Pursuit of Chronic Disease: Why Chasing Happiness is Making us Sick

(do let me know if you’d like me to share any of these presentations in the follow-up blog)

mindshare speakers
Mindshare 2019 green room
Here are some of us in the backstage “green room” and getting ready to go on stage!

We each had a maximum of 5 minutes to present and were not allowed slides or notes. The last time I had memorized my talks and had them timed was 15 years ago when I was in Toastmasters. Before that it was when I was in school. I wasn’t even sure if I could do it when I entered my proposal to speak. When practicing the day before I was still unsure I could manage. Because of my Lyme disease, my memory and word recall isn’t as great as it used to be.

If you pay close attention and you’ll notice the spot where I almost freeze – everything just went out of my head! I simply breathed in calmly, made an attempt to look like I had paused and was fortunate that most of the ending came back to me! Whew!

trudy scott mindshare 2019

 

I’d love to hear what you think of my message and if it resonates with you or a loved one. Feel free to share your pyroluria score and how you score on the introvert questionnaire.

Please also share if you’ve seen the benefits of no social anxiety, introversion and/or loneliness (or much less) when on the pyroluria protocol.

Increased sociability improves vagus nerve function: the role of social anxiety, pyroluria and low zinc

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increased sociability and vagus nerve

With the objective of taking a deeper dive into some of the favorite topics of the recent Anxiety Summit: Gut-Brain Axis, today’s blog is about the vagus nerve since Dr. Navaz Habib’s interview, Vagus Nerve Activation to Reduce Anxiety, was voted one of the favorites. I’m focusing on one tool that improves vagus nerve function that we didn’t have time to get into in great detail – and that is how increased sociability helps.  It’s all good and well to recommend getting out and hanging out with more people but if you have the social anxiety condition called pyroluria it’s really challenging, hard work and very stressful. Added stress makes pyroluria worse so it becomes a vicious cycle.

Let’s start with the research that supports the connection between the vagus nerve and increased anxiety and mood problems.  In the interview with Dr Navaz, we discussed this paper: Vagus Nerve as Modulator of the Brain–Gut Axis in Psychiatric and Inflammatory Disorders which states that “vagus nerve stimulation is a promising add-on treatment for treatment-refractory depression, posttraumatic stress disorder, and inflammatory bowel disease” and how stimulation of vagal fibers that go from the gut to the brain (afferent fibers) influences neurotransmitter production and “play crucial roles in major psychiatric conditions, such as mood and anxiety disorders.”  The gut bacteria play a major role too, “partly by affecting the activity of the vagus nerve.”

In our interview we end with very practical ways to activate your vagus nerve

  • Deep breathing exercises (mentioned in the above paper, together with yoga and meditation) and cold showers (which makes you breathe harder)
  • Gargling and using the gag reflex
  • Humming, chanting and singing (I used these approaches for my vagus nerve issue after my terrifying plane ride. GABA also helped with the voice/throat spasms I experienced – more here on that)
  • Auricular acupuncture (which is also very effective for addictions)
  • And finally, social interaction or increased sociability, which I want to cover today

The research on the vagus nerve and being more social

Let’s look at the research on the vagus nerve or vagal tone and being more social.  This paper, Upward spirals of the heart: autonomic flexibility, as indexed by vagal tone, reciprocally and prospectively predicts positive emotions and social connectedness, reports that that vagal tone and connectedness or being more social is a two-way street i.e. it’s reciprocal

  • “…increases in connectedness and positive emotions predicted increases in vagal tone” and
  • “Adults who possessed higher initial levels of vagal tone increased in connectedness and positive emotions more rapidly than others”

In summary, the more social and happy you are, the healthier your vagus nerve is and a healthier vagus nerve leads to feeling more connected and happy.

This study was done with adults in a community-dwelling setting over 9 weeks: “adults were asked to monitor and report their positive emotions and the degree to which they felt socially connected each day.”

Address pyroluria in those who have social anxiety

Pyroluria, the social anxiety condition, was not part of the study because it’s under-recognized as a factor in anxiety.  I’d like to propose that we address pyroluria in those who have social anxiety in order to further improve social connectedness and their vagus nerve function.

Many folks with pyroluria put on a brave face in social settings and even “extrovert” which is extremely stressful. The added stress makes pyroluria worse (zinc and vitamin B6 are dumped in much higher amounts) so it becomes a vicious cycle.

Others, who are not willing to even show up because of their severe social anxiety, are not getting that social interaction and connectedness that is so crucial for improved vagus nerve function and better overall health.

Here is the pyroluria questionnaire and the pyroluria/introvert connection.

Connecting the dots further we have

By addressing the social anxiety called pyroluria with a foundation of zinc and vitamin B6, we can increase sociability and thereby improve vagus nerve function.

UPDATE 5/7/2020:

Social isolation during the coronavirus pandemic – other vagus nerve exercises

This blog is very applicable now during the coronavirus pandemic. I’ve made an update because I feel we need to start thinking about the longer-term adverse impacts of social isolation and work on other ways to improve vagus nerve function during isolation or quarantine.

This can include any or all of the ways mentioned above: deep breathing exercises, yoga, meditation, cold showers, gargling/gag reflex, humming/chanting/singing and/or auricular acupuncture.

Do you find you have better vagus nerve function when you are more sociable? What of these vagus nerve exercises have you been doing and found helpful during isolation? Do you have any other favorite approaches like using essential oils or anything else?

Vagus nerve stimulation to treat respiratory symptoms associated with COVID-19

This paper reports benefits in 2 patients with coronavirus – Use of non-invasive vagus nerve stimulation to treat respiratory symptoms associated with COVID-19: A theoretical hypothesis and early clinical experience

  • Both patients reported clinically meaningful benefits from nVNS therapy [non-invasive vagus nerve stimulation].
  • In Case 1, the patient used nVNS to expedite symptomatic recovery at home after hospital discharge and was able to discontinue use of opioid and cough suppressant medications.
  • In Case 2, the patient experienced immediate and consistent relief from symptoms of chest tightness and shortness of breath, as well as an improved ability to clear his lungs.

The authors also share that “vagus nerve stimulation has been demonstrated to block production of cytokines in sepsis and other medical conditions.”

With this virus being novel and with everyone learning we are still appreciative of small case reports like this and hope to see bigger studies done. Until then there is other evidence of the overall importance of the vagus nerve in helping to regulate lung infection and immunity.

The nVNS therapy mentioned in the COVID-19 paper is an external device that delivers “a proprietary signal through the skin to either the right or the left branches of the vagus nerve in the neck.” It’s not something I’ve used personally or had clients use so please share if you’ve had success with this device or a similar device.

Loving social isolation and thriving during coronavirus

On the flip side we also need to consider that there are some individuals who are loving social isolation and thriving emotionally. I share some feedback from folks in my community:

  • Elissa: “As an introvert, my mental health has never been better ☺️. Loving isolation life.”
  • Drew: “Loving it in many ways. Dreading the hedonism starting up again…”
  • Tiffany: “My anxiety levels have decreased and I have decreased my anxiety meds! I think it’s because the demand to produce has decreased. I can actually move at my own speed in this world. I’m fortunate, though. My heart goes out to those people in medical fields. I really miss some things, like time with my dad, but we have made some adjustments, like driveway picnics.”
  • Katie: “I was praying for relief from the busyness. Definitely didn’t have this in mind and my heart hurts for those who are impacted. It has been a beautiful time of rest and restoration for my body and soul.”
  • Wendy: “My life is usually slow paced and introverted. Now it’s more so and I’m finding the less I do in a day, the better I sleep. I’m actually dreading getting back to “normal” with all the pressures put on us by extroverts. Yes I have sympathy for people suffering mentally by isolation, but for the first time I feel like my type of lifestyle is socially acceptable. I’m tired of life expectations being dictated by the extrovert half of the population.”

I appreciate these folks for sharing their valuable perspectives about thriving in these times. It reinforces how unique we all are.

If you’re struggling with social isolation…

  • How are you feeling and what are you most looking forward to doing once social isolation recommendations are relaxed?
  • I’m guessing you don’t have pyroluria but please share if you do?

If you are thriving in social isolation…

  • Would you consider yourself an introvert /a contented introvert?
  • Have you got pyroluria and has addressing it nutritionally in the past allowed you to be more sociable or at least less anxious when you are in crowds?
  • How are you feeling during social isolation and what do you love the most right now?
  • What are you not looking forward to once social isolation recommendations are relaxed?
  • And how do you plan to go back to the old “normal” or don’t you?

Please comment below and let us know where you are with social isolation during this pandemic – struggling or thriving? And what vagus nerve exercises are you using right now? Have you used an external device with success?

Pectus excavatum and pyroluria: is there a connection?

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Pectus excavatum and pyroluria

I recently received a question about the possible connection between pectus excavatum and pyroluria, a social anxiety condition. In layman’s terms, pectus excavatum is a depression or indentation in the chest wall and is related to problems with connective tissue. This Medscape article describes it as follows:

Pectus excavatum, also known as sunken or funnel chest, is a congenital chest wall deformity in which several ribs and the sternum grow abnormally, producing a concave, or caved-in, appearance in the anterior chest wall.

It’s not something I’m familiar with other than seeing someone with this condition at the beach once (I share some pictures below) and when doing the research for this blog.

The question was posed in relation to a blog on Joint hypermobility / Ehlers-Danlos Syndrome, a connective tissue disorder that does seem to be common in those with pyroluria.

In case you’re new to pyroluria, it 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. You can read more about it here.

There are also connective tissue symptoms with pyroluria with the following commonly a factor: joints popping, cracking, or aching; pain or discomfort between the shoulder blades; and/or cartilage problems. This is often due to low levels of zinc. Here is the entire pyroluria questionnaire.

Addressing low levels of the mineral zinc and vitamin B6, together with some other nutrients and stress management, are key to addressing pyroluria symptoms. The social anxiety can typically be lifted in a week and the joint and pain problems often ease in 1 to 2 months.

So now that I’ve set things up with an overview of pyroluria and EDS and the connective tissue problems, let me share what I uncovered about pectus excavatum and why I feel there is very likely a connection with pyroluria.

Pectus excavatum and low zinc – impacting connective tissue and psychological impairment

According to this 2012 paper, Pectus excavatum: history, hypotheses and treatment options

Pectus excavatum (PE) … is the most common chest wall deformity, representing 90% of all cases. Depending on the severity of PE, deviations of thoracic organs and spine deformities are known. Although PE in most instances has little or no influence on the function of the inner organs, the cosmetic appearance of the patients leads to psychological impairment which requires therapy.

In the above paper, they write about one of the hypotheses: weak cartilage through metabolism dysfunction. They report decreased levels of zinc in the pectus excavatum patients, suggesting “the lack of zinc in the diet results in a lower metabolic activity of chondrocytes.” Chondrocytes are cells found in cartilage connective tissue. In summary, one hypothesis is that low dietary zinc affects cartilage connective tissue in some individuals with pectus excavatum.

Observe the mention of psychological impairment. Could the low zinc be playing a role in this too? I address this below.

Pectus excavatum and Ehlers-Danlos, plus dental crowding

This paper, Pectus Excavatum and Heritable Disorders of the Connective Tissue, make the connective tissue and Ehlers-Danlos connection:

It seems clear that several patients affected by pectus excavatum display a typical association with connective tissue disorders, which may span from mild form like simple laxity without morbidity associated, to more severe forms such as MFS and Ehlers-Danlos syndrome

This paper also mentions “Highly arched palate with dental crowding” which is common in pyroluria and seems to be related to low levels of zinc.

The image below illustrates a moderate/severe form of pectus excavatum.

pectus excavatum
Figure 1. from Pectus Excavatum and Heritable Disorders of the Connective Tissue

Chest picture of an adolescent affected by a moderate/severe form of pectus excavatum. Written consent was obtained from the patient and the patient’s parents for publication of this image.

Vitamin B6 and high homocysteine

With regards to vitamin B6, one of the other key nutrients needed for pyroluria, one paper, Pectus carinatum repair in an adolescent with hyperhomocysteinaemia: Anaesthetic implications reports a case of a 14-year-old boy with high homocysteine. his level was 18.5 μmol/l (normal levels are within 7–10 μmol/l). He was treated with folic acid, Vitamin B6 and B12 supplements. Is this common in all cases of chest wall deformities? I don’t know but it would interesting to find out.

Pectus excavatum: social anxiety and depression

There are some older studies that report mental health symptoms, including social anxiety are common. In this 1999 paper, Funnel chest. Psychological and psychosomatic aspects in children, youngsters, and young adults, they report these reactions in children older than 11:

embarassment reactions, social anxiety, feelings of stigma, limited capacity for work, orientation towards failure, reduced tolerance of frustration and temptation, limited capacity for communication and even markedly depressive reactions are observed.

It’s understandable that the physical manifestations of this condition would lead to some of these feelings but I have to question how much of this could also be related to low zinc and low vitamin B6. Both nutrients are needed for easing pyroluria/social anxiety symptoms and making neurotransmitters such as serotonin.

Other than trying to make some connections with the research, when this question was asked on facebook, a number of people said they (or a family member) has both pyroluria and pectus excavatum.

If you do have pectus excavatum and pyroluria, getting on the pyroluria protocol will:

  • ease some of the social anxiety and depressive symptoms
  • very likely lead to less pain and discomfort
  • very possibly prevent further connective tissue issues
  • feasibly prevent pectus excavatum in future children or perhaps reduce the severity in the instance where zinc is a factor (this one is a long shot that I feel is worth further research)

I’d love to gather more information and am looking for feedback so please do share your symptoms and experiences in the comments. Let us know if you or your child or other family member has pectus excavatum and any of the following:

  • A score 15 or more on the pyroluria questionnaire and/or suffer from social anxiety
  • Have low zinc
  • Have low B6 (poor dream recall or nightmares is a clue)
  • Have high homocysteine i.e. above 10 μmol/l
  • Ehlers-Danlos syndrome or joint hypermobility
  • Dental crowding

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