Pyroluria

[shijing]

This is chapter two in my unfolding adventure into genetic mutations (chapter one began with the MTHFR mutations thread). I asked several weeks ago to have my daughter tested for pyroluria, and a few days ago the results came back positive. This is something that has made her life a living hell in a lot of ways for the past several years -- it began accelerating around the time she hit puberty (and when she entered middle school in what I consider to be a very toxic educational system), and has accelerated more since entering 2014.

Various dietary changes we've been making over time have undoubtedly helped slow some of this, but because this is a genetic condition, more specific intervention is necessary which I'll get to below. Since I show many of the symptoms as well, I'm going to be doing my own test soon, and would encourage anyone else who feels they might show some of the symptoms below to do the same.

There's a good discussion of pyroluria in Primal Body, Primal Mind (appendix F, p. 324). Here is another description from a web resource:

Pyroluria: How Pyrroles Affect Physical and Mental Health

Pyroluria is a genetically acquired chemical imbalance in which the body produces an abnormally large number of pyrroles. A pyrolle is a chemical consisting of a 5 membered aromatic ring. These chemicals are the byproduct of hemoglobin synthesis and have no known function in the body; they are normally excreted in the urine. Most people have very few pyrroles in their system at any given time; certain individuals, however, have an unusually high number of pyrroles in their bodies, resulting in a condition known as pyroluria.

Also known as Mauve Factor (due to the mauve color visible on testing paper during urinalysis) or pyrrole disorder, pyroluria occurs when the pyrroles bind to pyroxidine (vitamin B6) and zinc, causing these vital nutrients to be excreted from the body in large amounts.

Deficiencies of B6 and zinc are associated with a wide range of emotional and psychiatric problems. Nervousness, extreme irritability, anxiety, depression, short-term memory problems, and explosive anger have all been linked to pyroluria. A large percentage of patients with psychiatric disorders such as schizophrenia exhibit high levels of pyroles; alcoholics and emotionally disturbed children also tend to have an abnormally high pyrrole count.

In addition, zinc deficiencies have been associated with a number of physiological disorders, including poor immune function, poor growth, and delayed sexual development. Because zinc and B6 are so important to both our overall physical and mental health, identifying and treating this devastating condition is critical.

Symptoms of Pyroluria

Individuals with pyroluria exhibit a wide range of physical, emotional and cognitive symptoms; some common characteristics of pyrolurics are described here:

Schizophrenia;
ADHD
Autism;
Bipolar disorder;
Anxiety (including panic attacks);
Depression;
Alcoholism;
Poor dream recall;
Low tolerance for stress;
Antisocial behavior;
Behavioral problems (especially in children and teenagers) such as oppositional/defiant disorder;
Emotional instability, explosive temper;
Frequent joint pain;
Frequent infections;
Poor appetite, especially in the morning;
Low tolerance for protein - tend to favor vegetarian diets;
Pale complexion, inability to tan;
White flecks on the fingernails;
Nausea, motion sickness;
Hypoglycemia;
Allergies;
Fatigue
Crowded teeth and poor quality of the tooth enamel;
Retracted gums;
Sweet or fruity-smelling breath and sweat.

Testing and Diagnosis

With such a wide range of symptoms, pyroluria is frequently misdiagnosed, and therefore often treated inappropriately. While patients exhibiting certain symptoms such as depression and anxiety often experience some degree of relief from antidepressant medications, these effects are temporary and do not resolve the underlying problem.

Proper identification of pyroluria is critical to its successful treatment; individuals with the disorder often experience immediate improvement of their symptoms once a treatment plan has been implemented.

Pyroluria testing typically consists of laboratory analysis of the urine for kryptopyrroles. Metabolic testing can detect elevated pyrrole levels, a positive indicator for the disease, as well as deficiencies in certain nutrients that are necessary for brain health.

Treatment of Pyroluria

Pyrolurics generally respond very well to nutritional treatments which emphasize zinc and B6 supplementation. Many patients experience some degree of relief within several days of treatment, and most undergo substantial recovery within 3 to 6 months. However, it is important to remember that treating this disease is an ongoing, lifelong process; those who discontinue treatment typically experience a near-immediate return of their symptoms.

Because treatment for pyroluria is nutritional, rather than pharmacological, some adjustment may be necessary to determine the correct amount of zinc and B6 supplementation on an individual basis. Pyroluria supplements also contain several other nutrients in order to provide the most effective treatment:

Manganese: This vital nutrient is depleted when zinc is taken at the high levels necessary for treating pyroluria. Manganese is necessary for the metabolism of certain proteins; it is also important to joint development and neurotransmitter production.

Magnesium: Taking B6 in large amounts can deplete magnesium levels; adding magnesium can reduce irritability and hypersensitivity to light and sound.

Niacinamide (Vitamin B3): This nutrient is necessary for the production of tryptophan, which in turn is necessary for the production of serotonin. Taking niacinamide helps to speed the pyroluria recovery process.

Vitamin C and Pantothenic Acid: These nutrients help to rebuild adrenal glands that have been exhausted from coping with the ongoing tension caused by pyroluria; adding them to pyroluria supplements allows patients to overcome the weakness and fatigue they often feel.

The symptoms of pyroluria are frequently mistaken for signs of other illnesses; all too often, doctors prescribe medications to treat the overt symptoms without taking the time to further investigate their root cause. With the appropriate lab testing, your health care provider can determine the core problem. Once a pyrrole disorder has been identified, you will be able to take the measures necessary to correct the problem, improving your health and your overall quality of life.

Although it's a relief to have finally identified one of the core reasons behind the health problems we've experienced, the part that makes me nervous is this:

However, it is important to remember that treating this disease is an ongoing, lifelong process; those who discontinue treatment typically experience a near-immediate return of their symptoms.

As with any condition which relies on outside supplementation, this is fine as long as you have access to the necessary supplements, but if you lose that access, what then?

Here's a good video introduction:

https://youtu.be/gfIzSelaRSI

A shorter one by William Walsh, author of Nutrient Power:

https://youtu.be/_g3wuTrienM

Something by Dietrich Klinghardt that I'm actually still watching:

https://youtu.be/-z3kRDYcvhA

Note what he mentions about first-born children at about 13:00. Also note what he mentions about fungal toxins and EMF pollution starting maybe around 33:00 or so.

And a more general statement by William Walsh on the state of medicine (the audio's a bit low):

https://youtu.be/X9cg4454mYA

So as I mentioned above, being on a paleo or ketogenic diet is going to help in mitigating some of the effects, but to actually recover a more specific treatment is required which applies mega-doses of zinc, B6, and involveds a heavy metal detox and gut support in the right order (since the aggressive elimination of zinc causes your body to bind an abnormal amount of heavy metals such as mercury, lead and cadmium).

Another thing that I'm speculating is related, because many of the traits overlap, is HSP (Highly Sensitive Person) profile. You can do a self-evaluation at Elaine Aron's website here:

http://www.hsperson.com/

Since the KPU test is relatively affordable, if you fit this profile it might be worth getting tested.

A: Remember Pavlov?

Q: (L) Yeah... So what about Pavlov?

A: Strong dogs can be broken if their health is broken first.

Q: (L) So you're saying that these effects are primarily health-related?

A: Yes.

Q: (L) So if your health is compromised, it makes it more difficult for you to achieve any kind of awareness or spiritual growth. Is that it?

A: Yes. Hasn't that always been the case?

Q: (L) So you're saying that health issues, destroying people's health - like even the introduction of wheat and other things that are not conducive to good health - are ways of preventing awareness and spiritual growth?

A: Yes. A long and carefully thought out plan of 4D STS.

 

[truth seeker]

There's a good discussion of pyroluria in Primal Body, Primal Mind (appendix F, p. 324). <snip>

In addition to the book, there's also this info on her website which also includes a questionnaire:

http://www.primalbody-primalmind.com/do-you-have-pyroluria/

Another thing that I'm speculating is related, because many of the traits overlap, is HSP (Highly Sensitive Person) profile. You can do a self-evaluation at Elaine Aron's website here:

http://www.hsperson.com/

I was thinking that as well while reading your post. Not to derail this thread, but I did a search for the HSP book on the forum and since I didn't find one specifically (although it has been discussed at various times) wondered if it might be helpful for others if one was started.

Added: Just saw your edit. I've been running into references to Pavlov while researching HSP and found that interesting. Thanks for the reminder. :)

 

[shijing]

Not to derail this thread, but I did a search for the HSP book on the forum and since I didn't find one specifically (although it has been discussed at various times) wondered if it might be helpful for others if one was started.

I think it would -- there are several members who've mentioned that they fit the profile. Are you up for getting it started?

 

[truth seeker]

Not to derail this thread, but I did a search for the HSP book on the forum and since I didn't find one specifically (although it has been discussed at various times) wondered if it might be helpful for others if one was started.

I think it would -- there are several members who've mentioned that they fit the profile. Are you up for getting it started?

I was kinda hoping you'd take the hint as I don't think I'm good at writing reviews, but no harm in trying, right? I'll see if I can pull my thoughts together and perhaps others will jump in with their own experiences.

 

[shijing]

Added: Just saw your edit. I've been running into references to Pavlov while researching HSP and found that interesting. Thanks for the reminder. :)

Sure -- it seems very relevant to the topic, I think.

I was kinda hoping you'd take the hint as I don't think I'm good at writing reviews, but no harm in trying, right? I'll see if I can pull my thoughts together and perhaps others will jump in with their own experiences.

Thanks a ton, truthseeker :) -- I'm running around the internet juggling several balls right now. I figure just write up whatever comes out and get the ball rolling, and I'm sure you'll get some participation. I'll add to it as soon as I have a chance once you post it!

 

[shijing]

Here's another more expansive rundown of pyroluria:

http://www.vitalityandwellness.com.au/pyroluria

Pyroluria

Pyroluria is known by many different names including Pyrrole Disorder, Kryptopyrrole, Kryptopyrroluria, Pyrroluria, Pyrolle Disorder, Mauve Factor and Hemepyrrole. Pyroluria can best be described as the abnormal synthesis and metabolism of the oxygen carrying molecule in your blood, called haemoglobin. As with all cells in your body there are waste or by-products produced and the by-product of haemoglobin is a metabolite called hydroxyhemopyrrolin-2-one (HPL) also known as Pyrrole. The metabolite was originally thought to be a Kryptopyrrole but further studies have proven this not to be the case.

People who suffer from Pyroluria produce excessive amounts of these Pyrroles which bind to or inhibit the nutrients; Zinc (1-7), Biotin 8, vitamin B6 (1-7), and Omega 6 Fat GLA from reaching their targets within your body. This effectively renders these nutrients unavailable to you.

Supplementation with these nutrients not only helps to reduce your Pyrrole levels but also the severity of the conditions, signs and symptoms listed below.

Conditions Associated With Pyroluria

Acute Intermittent Porphyria
Criminal Behaviour
Neurosis/Neurotic
ADD/ADHD
Depression
Post Natal Depression
Alcoholism
Down Syndrome
Schizophrenia
Allergies
Epilepsy
Substance Abuse
Asperger’s Syndrome
Learning Difficulties
Tourette’s Syndrome
Autism
Lung Cancer
Violent Offenders
Bi-Polar Disorder
Manic Depression

Signs & Symptoms Of Pyroluria

There are many signs and symptoms that may indicate the presence of elevated Pyrroles in your blood. The list below may give you an indication that you may have a Pyrrole disorder, however it is not a diagnosis for Pyroluria. For a correct diagnosis we recommend having a Kryptopyrroles Test which can be ordered through our online store.

Abdominal pain
Lack of hair on head, eyebrows and eyelashes areas
Abnormal body fat distribution
Lack of regular menstrual cycles
Acne
Loss of appetite
Allergies
Low libido
Amnesia spells
Low tolerance to stress
Anger – explosive
Migraines
Anxiety/anxious
Mood swings
Argumentative - likes to argue
Morning nausea
Cold hands and feet
Motion sickness
Constipation
Much higher capability in the evening than mornings
Creaking in joints
Nervous exhaustion
Delayed puberty
Nervousness
Delusions
Overwhelmed in stressful situations
Depression
Pale skin, poor tanning or burn easy in the sun
Difficulty remembering dreams
Panic attacks
Dramatic
Paranoia
Dyslexia
Pessimism
Early greying of hair
Poor memory
Eczema
Poor morning appetite/tendency to skip breakfast
Elevated eosinophil’s
Preference for spicy or heavily flavoured foods
Emotionally unstable
Prone to stitches when running now or as a child
Fatigue
Reading difficulties
Fluid retention
Seizures
Frequent colds, fevers, and chills
Sensitivity to bright light
Frequent ear infections as a child
Sensitivity to smells
Hallucinations
Severe inner tension
Hyperactivity
Skin rashes
Hypersensitivity to noise
Significant growth after the age of 16
Hyper-pigmentation of the skin
Social withdrawal
Hypoglycaemia
Substance abuse
Inability to think clearly
Temper tantrums
Insomnia
Tendency towards iron deficient anaemia
Intolerance to alcohol
Tingling in the arms and legs
Intolerance to drugs
Tremors
Intolerance to some protein foods
Unusual smelling body odour
Joint pain
Unusual smelling breath
Knee pain

Unusual Body Appearances Associated with Pyroluria

Some people who suffer from Pyroluria may also have abnormalities in their physical appearance such as;

If your family has black skin yours will be the lightest skin in your family
Lack of hair on your head, eyebrows and eyelashes
Skin which is prone to stretch marks
Teeth in your upper jar will often be overcrowded (unless orthodontic treatments have taken place)
White spots on your fingernails
You may suffer from acne, eczema or herpes
Your tooth enamel has a poor appearance
Your skin will appear paper thin

What Causes Pyroluria?

There is evidence to suggest that Pyroluria is a genetically based ailment. Statistics and research indicates that if a parent, grandparent, aunt, uncle, brother or sister has suffered from major Depression, Bi-Polar Disorder, Alcoholism, Schizophrenia or has suicided, there is a greater risk of Pyroluria in other family members.

Research has discovered that stress increases the production of these Pyrroles in your blood, which in turn causes a worsening of your symptoms (2,6,43). A US navy study conducted in 1992 found a very rapid increase in Pyrrole levels in male volunteers who were subjected to the stress of a brief cold-water immersion (44)

Poor dietary choices and poor digestive health can lead to an increase in Pyrrole levels (9) This makes sense as a poor diet and digestion robs your body of essential nutrients. This causes deficiencies to occur and results in various aspects of your health operating below par. It’s a downward spiral as without the correct nutrients you can’t function properly, this increases the stresses placed on your body and further drives up blood Pyrrole levels.

Leaky Gut Syndrome also known as intestinal permeability, is a condition whereby microscopic holes occur in your intestinal wall and allow undigested food, bacterial by-products, poisons and toxins to pass into your bloodstream. Leaky Gut Syndrome is widespread in sufferers of Pyroluria and a common factor in driving up blood Pyrrole levels.

Studies have shown that zinc deficiency increases bowel permeability (Leaky Gut syndrome) in animal and humans (10-16).

Laxatives especially magnesium sulphate and bisacodyl (laxative drug) increases Leaky Gut Syndrome (17-19). Enemas (especially soap suds and tap water), result in loss of the intestinal lining, which then leads to Leaky Gut Syndrome (20).

It is a well known fact that stress damages the intestinal wall and causes intestinal inflammation. Both of which lead to an increase in Leaky Gut Syndrome (9, 21-23).

Dysbiosis, an overgrowth of detrimental bacteria in the intestinal tract, has also been linked to an increase in blood pyrrole levels as well as contributing to Leaky Gut Syndrome (17, 24). Stress increases the adherence of bad bacteria to the intestinal wall within 30 minutes (25).

Alcohol, smoking, drugs and heavy metal exposure can dramatically increase blood pyrrole levels. This is why sufferers of Pyroluria tend to get a worsening of their symptoms 24 to 48 hours after a big night on the grog or recreational drug use.

What Damage Can Elevated Pyrrole Levels Cause?

Pyrroles are classed as 'nerve poisons' (26) and as such can cause damage to your nerves, nerve cells and tissue, your brain and they can interrupt messages being sent along your nerves especially within your brain.

Heme is a substance found in your body that has an iron atom at its core. The most commonly know heme is haemoglobin, the oxygen carrying red pigment of your blood. Heme is not only found in your blood but in other areas of your body such as your liver and nerves. Your nerves metabolic activity is highly dependent on heme for their function and low levels of heme leads to a metabolic crisis occurring in your nerves resulting in neuronal (nerve) cell death (27-29). The by-product of haemoglobin metabolism, Hydroxyhemopyrrolin-2-one (HPL) or pyrrole, is believed to decrease heme levels in humans. Animal studies have shown that HPL caused a decrease in liver heme, and the heme containing detoxifying enzyme cytochrome P450, by up to 55% over a 48 hour period (30). Vitamin B6, biotin and zinc are all required for the production of heme and a reduction in these nutrients results in sub normal heme levels (28,31). Heme levels are further depressed by stress and heavy metal exposure 28) . Low levels of heme result in an excess production of the toxic free radical nitric oxide, which can cause serious damage to brain tissue and is suspected to play a role in schizophrenia, autism and Down Syndrome(38-42).

Free radicals or oxidative stress are substances that can damage and destroy your cells. Antioxidants are substances produced by your body and found in foods that protect your cells from oxidative stress or free radical damage, much like the way galvanised paint protects iron from rusting. Your body has three major antioxidant systems; Glutathione, Catalase and Superoxide Dismutase and these all need either zinc or vitamin B6 in some part to assist in their production. A marginal deficiency of vitamin B6 is associated with lower levels of Glutathione production and cell mitochondrial (cell battery) decay (32-34). Catalase consists of four protein subunits, each requiring heme, and since HPL suppresses heme, we can assume that pyroluria is associated with lower catalase levels, as is the case in schizophrenia and autism (35-37).

Additional Roles Of Vitamin B6, Zinc, Biotin & GLA In Keeping You Healthy

There are many additional illnesses and diseases that may result from a single or combined deficiency of vitamin B6, zinc, biotin and the omega fat GLA (gamma-linolenic acid).......read more

Pyroluria The Statistics

Below is a table that shows neuro-behavioural disorders and the percentages of high hydroxyhemopyrrolin-2-one (HPL) or pyrroles associated with those disorders (9).

Diagnosed Ailment % of HPL
Acute intermittent porphyria 100
Latent acute intermittent porphyria 70
Down syndrome 71
Schizophrenia acute 59-80
Schizophrenia chronic 40-50
Criminal behaviour
-Adults with sudden deviance 71
-Youths, violent offenders 33
Manic Depression 47-50
Depression (non schizophrenic) 12-46
Autism 46-48
Epilepsy 44
Learning Disabilities 40-47
ADD/ADHD 40-47
Neuroses 20
Alcoholism 20-84

The reason for the variance in some of the above figures is that it depends which study the results have come from. For example one study may have found only 20% of alcoholics had high levels of HPL whereas another study found that 84% of alcoholics had high levels of HPL.

Why Isn’t Pyroluria More Accepted By Mainstream Medicine?

Unfortunately Pyroluria falls outside the realm of mainstream medicine due to the fact that the only way to rectify the problem is by improving the sufferer’s nutritional status, diet, digestion and stress levels. Mainstream medicine relies on drugs to suppress a symptom or relieve suffering and this form of treatment will not work for a person who has a Pyrrole disorder. Sadly sufferers of Pyroluria fall through the cracks and are often misdiagnosed and given medication or drugs that do nothing to rectify the underlying problem. Unfortunately these medications can lead to further deterioration of a persons health.

What to do next?

As you can see pyroluria is a complex health issue and whereas treatment with the relevant nutrients will help to reduce the symptoms associated with pyroluria, it hasn’t addressed the underlying causes. So any treatment protocol for pyroluria needs to not only support the nutritional deficiencies caused by an elevation of pyrroles, but to also identify and treat what has caused these in the first place. The first step is to assess whether or not you are suffering from pyrrole disorder is to get yourself tested.

Pyroluria or Kryptopyrrole Test

We understand that it may be difficult for you to come and see us at our clinic so we have made it easy for you to find out whether you may be suffering from Pyroluria by ordering a Kryptopyrroles Test through our online store. We simply send you a test kit with full instructions on how to collect your urine sample and send it off to pathology for testing. Once your results are received we will analyse these and send you a detailed results report including suggested nutritional supplements and dietary advice to rectify your body’s underlying imbalances. It’s that easy.

What treatment do you recommend if I have already been tested for Kryptopyrroles / Pyroluria?

If you have already been tested we can offer the following services to you:

Pyroluria Treatment Plan - Online Download PDF (16 Page) and Audio File (mp3). Treatment plans are available for a test result of Positive or Borderline (Child or Adult Plans).

Pyroluria Combo Pack - This is a combination pack consisting of a Positive Pyroluria Treatment Plan PDF and Pyroluria Supplement Pack. The Combo Pack is available for a test result of Positive (Child or Adult Packs).

Skype Consultation - If you would like a more comprehensive overview of your health a Skype consultation can also be arranged.

References (click on link on main page)

One more section from the transcripts that I've been wondering about after watching Dietrich Klinghardt's presentation above is this (note that these are from my condensed health files -- for full transcripts do a search):

You had a dream the other night. As Ark and you were leaving the park in your dream, you looked up and saw a mosaic on the side of the mountain. It had save sharks, one above the other, the lowest being pale almost to the point of transparency, and the highest being very dark and intense in color. There was a HUGE sperm whale to the upper left, he was in the posture of whipping around, his eye had caught the sharks, and his mouth was open and he was going to swallow them all in a single gulp. Logic says to you: examine! The other part of the dream was that you disappeared and reemerged from a cleft in a rock. You were cleaning... he went to investigate... and he returned and was crying and all this water was flowing out of there like a spring... Trace minerals interact with deeply held secrets.

Regarding the clay and the montmorillonite, and the connection of the clay TO the montmorillonite, and what we once said about trace minerals unlocking secrets in some way: the question [the fact that tritium pointed to this clay, and that this clay is situated in the Rhineland, among other select sites, and alfalfa possibly grows there] is about the mind, spirit and body, and what happens hence. What is more to the point is who was assisted before, how and why. If this clay montmorillonite is in Germany, and if the implication is that the mineral causes some sort of beneficial effect, perhaps, in antiquity, somebody was using it for that reason.

I'm not sure if these have already been explained elsewhere, but it keeps coming back to me for some reason

 

[Laura]

Vitamin C may not be needed if the diet is close to ketogenic since the other Vitamin C system kicks in. Also, if there is any connection between this and iron loading, Vitamin C can make that worse.

 

[shijing]

Vitamin C may not be needed if the diet is close to ketogenic since the other Vitamin C system kicks in. Also, if there is any connection between this and iron loading, Vitamin C can make that worse.

Thanks Laura -- we'll go easy on it, and I've been trying to time usage away from meals. I'm beginning to try to figure out which pathways work normally and which are compromised (including teasing out potential cross-interactions between pyroluria and the MTHFR mutations).

I need to be a little cautious about the iron issue since my blood panel last summer showed an elevated ferritin level (205), which I've been trying to bring down with regular blood donations. Fortunately, my daughter's ferritin level from her recent iron panel was only 42, which is just a hair above what would be optimal.

 

[davey72]

Vitamin C may not be needed if the diet is close to ketogenic since the other Vitamin C system kicks in. Also, if there is any connection between this and iron loading, Vitamin C can make that worse.

What is meant by the other vitamin C system?

 

[Gaby]

Vitamin C may not be needed if the diet is close to ketogenic since the other Vitamin C system kicks in. Also, if there is any connection between this and iron loading, Vitamin C can make that worse.

What is meant by the other vitamin C system?

More info here:

Re: Ascorbic acid (vitamin C)

http://cassiopaea.org/forum/index.php/topic,13208.msg379144.html#msg379144

;)

 

[shijing]

There were two good interviews about pyroluria with Karla Maree and Trudy Scott during the recent Anxiety Summit -- below are some linked articles on Trudy Scott's blog that tie in well with the Mood Cure program that was done on the Health & Wellness show a couple weeks ago:

http://www.everywomanover29.com/blog/anxiety-summit-pyroluria-amino-acids/
http://www.everywomanover29.com/blog/pyroluria-questionnaire-from-the-antianxiety-food-solution/
http://www.everywomanover29.com/blog/anxiety-summit-pyroluria-amino-acids-acids-troubleshooting/
http://www.everywomanover29.com/blog/pyroluria-social-anxiety-introversion/

I also recently ran across an article by Walter Last on pyroluria and candida -- there's good discussion about zinc, P5P and haem production, and there are parts that may cross over with the autoimmune/infection thread:

http://www.health-science-spirit.com/pyroluria.htm

 

[shijing]

This is an earlier video presentation by Dietrich Klinghardt, divided into five shorter parts, from his website:

http://www.klinghardtacademy.com/Videos/

https://youtu.be/mo37gBO9NZA

https://youtu.be/zaxYKZqxtDA

https://youtu.be/PGAOk__TCcg

https://youtu.be/_gvaobK0inY

https://youtu.be/WyZ-Sf8HIrU

Parts 3 and 4 are the ones where he discusses pyroluria and its connection to heavy metal toxicity -- it's a good brief overview, and he describes the probable infectious origin of pyroluria, described in greater detail in the video I posted earlier in this thread and recently reposted on the autoimmune/infection thread. I had always associated Lyme disease specifically with tick bites, but I learned from another interview yesterday that Lyme can also be spread by mosquitoes, and possibly other biting insects as well.

He also touches briefly on genetic polymorphisms, discusses EMF toxicity in part 2, and emotional and psychological trauma in parts 4 and 5 -- so it's a nice little compilation of material that includes the four factors related to chronic health conditions that have been under recent discussion.

 

[Gaby]

I was reading about this topic in "Beyond Lyme Disease" by Connie Strasheim. Here are some relevant excerpts:

Many people with Lyme disease - up to 80%, by some estimates - suffer from a condition called pyroluria.

While Lyme disease may cause pyroluria, it can also be inherited or triggered by childhood trauma. When inherited, pyroluria may create a predisposition to Lyme disease by depleting nutrients from the body and causing immune dysfunction. The person becomes then susceptible to illness from tick-borne infections. As with other causes of disease mentioned in this book, it's difficult to know which came first—illness from tick-borne infections or illness from the pyroluria and accompanying immune system weakness. Yet it is important to treat both conditions, as both are major contributing factors to chronic illness.

Pyroluria suppresses the immune system by creating severe deficiencies of minerals that the body needs to fight disease, especially zinc (which plays a major role in immune function), and can lead to symptoms similar to those found in chronic Lyme disease. It also creates heavy metal toxicity, which further weakens immune function and precludes healing.

People who have both Lyme disease and pyroluria tend to feel worse during the initial phases of pyroluria treatment, which involves nutrient replacement therapy. Based on anecdotal reports of those who have undergone treatment, the "feeling worse" stage may last anywhere from several months up to a year or more. This happens because people with Lyme disease and pyroluria tend to have high levels of heavy metal toxicity. Heavy metals occupy the same receptor sites on cells as minerals. When the body is given high replacement doses of minerals, it begins to displace heavy metals form the cells. This causes a profound detoxification reaction that can continue on and off for months. The reaction is prorogued because it takes time for the body to replenish its mineral stores and displace metals, especially when mineral deficiencies are severe. People with severe mineral deficiencies also tend to have high levels of heavy metals in their bodies. It can take time to remove all of these. Once the cellular receptor sites become mostly occupied by minerals, the body ceases to release metals and there are fewer places for the metals to latch onto. Heavy metal toxicity is another major contributing factor to chronic illness, so treating pyroluria as part of a comprehensive heavy metal detoxification protocol, can help to more effectively remove metals from the body.

Regardless of whether the body has high or low amounts of heavy metal toxins, the metals that damage it the most are those that occupy mineral receptor sites on cells. The minerals that should normally occupy these sites are of critical biological importance. Displacing any heavy metals from these sites and replacing them with essential minerals is therefore crucial for healing.

When heavy metals are displaced from cellular receptor sites by pyroluria treatment, they can cause more severe detoxification reactions in the body than what would normally occur as a result of heavy metal treatments. The detoxification process is healthy, because it replaces toxic heavy metals with minerals that the body needs, but can also be dangerous if not handled properly. When toxic heavy metals are displaced from the cells into systemic circulation, they can build up in the blood to toxic levels—much faster than the kidneys, liver, and lymphatic system can eliminate them. Any metals the body cannot eliminate will then get redistributed throughout the body, where they can cause further, even irreversible, damage to the organs and tissues. To prevent this from happening, it is essential for people with pyroluria to work with a healthcare practitioner who is experienced not only in treating pyroluria, but also heavy metal toxicity.

Once the cellular receptor sites become mostly occupied by minerals, the body ceases to release toxic metals, resulting in fewer sites to which these toxins can bind. It is vital to support the body during the heavy metal detoxification process that accompanies pyroluria treatment. ...

Zinc

Zinc plays a powerful role in neurotransmitter synthesis. Since neurotransmitters regulate mood and cognitive function, deficiencies can cause depression and other mental disorders. Zinc is also strongly involved in immune function, including white blood cell production, so people with low levels of this mineral often have low white blood cell counts. This, in turn, makes the body more susceptible to infections and toxins.

Deficiencies also result in delayed wound healing, and can cause low stomach acid, diminished collagen levels, macular degeneration, dandruff, hyperactivity, loss of appetite, and bone loss. Because zinc is an antioxidant, lowered levels also lead to oxidative stress and inflammation.

Vitamin B-6 (Pyridoxine)

Vitamin B-6 deficiencies are thought to be rare among the general population; however, in those with pyroluria, they are common. B-6 deficiencies can cause insomnia, irritability, depression, cognitive dysfunction, muscle weakness, poor nutrient absorption, and anemia. Because of B-6's important role in serotonin synthesis, insufficient levels of this vitamin lead to neurotransmitter deficiencies, and to neurological problems such as depression. A lack of B-6 can also cause poor dream recall.

Biotin

Biotin deficiency, which is also found in those with pyroluria, can cause rashes, dry skin, fine or brittle hair, hair loss, conjunctivitis, dermatitis, muscle pain, and neurological symptoms such as depression, lethargy, and numbness and tingling of the extremities. Biotin is necessary for cell growth, fatty acid synthesis, and fat and amino acid metabolism. Deficiencies result in inefficient metabolic processes. Biotin deficiency is also associated with many aspects of the aging process.

Manganese

Deficiencies of manganese have been linked to ataxia (poor gait), dermatitis, weak tendons and ligaments, hearing loss, joint pain, inflammation, and arthritis. Deficiencies may also cause or contribute to the development of diabetes, Parkinson's disease, osteoporosis, and epilepsy, because man¬ganese is essential for normal growth, glucose utilization, lipid (fat) me¬tabolism, and thyroid hormone production. Because manganese interferes with iron absorption, people with pyroluria who also have iron deficiencies (including most women with Lyme disease), may also want to supplement with a food-based iron product while on a pyroluria protocol that involves taking manganese. The iron should not be taken at the same time as the manganese.

Molybdenum

Molybdenum is most highly concentrated in the liver and kidneys. It plays an essential role in detoxification, so deficiencies can disrupt or cause de-toxification processes to be inefficient. Molybdenum deficiency is indicated by liver dysfunction, and symptoms such as jaundice, nausea, and fatigue. Because the liver is constantly stressed in chronically ill people, it may be difficult to identify this deficiency through a symptom analysis alone. Moderate deficiencies of molybdenum result in sulfite toxicity, which can cause headaches, tachycardia, vomiting, and nausea. Molybdenum also helps the body utilize energy from fats and carbohydrates; deficiencies of this mineral may cause fatigue. Molybdenum also plays a role in iron utili-zation, tooth decay prevention, and in maintaining fertility, mental clarity, and blood sugar balance.

Most of the aforementioned nutrients play an important role in neurological and immune function, detoxification, and blood sugar balance.

Recommended Nutrient Doses

(Warning: The following nutrient dosages and recommendations are, in some cases, much higher than what is recommended by the FDA. Anyone who is considering taking high doses of any of these minerals should first consult a licensed health care practitioner and get tested, to determine whether and how much of each nutrient they need. Several of the nutrients described in the following sections can be toxic at high doses and create potentially life-threatening reactions when taken in excess of the body's needs).

Zinc. Therapeutic doses of zinc may range from 20-80 mg of elemental zinc, based on anecdotal reports from those who have treated pyroluria.

Maintenance doses may be 10-40 mg. Because zinc is measured according to the form in which it is processed, it is important to discover whether zinc supplement labels reflect the elemental form or not.

Confusion over zinc supplement labeling has led at least one person with Lyme disease to severely overdose on zinc, and suffer from life-threatening symptoms. Furthermore, excessive zinc intake can result in severe copper deficiencies, which can also produce life-threatening symptoms. Information on how to prevent copper deficiencies will be described later in this chapter. It is vital to test the body's zinc levels before taking any amount of zinc which exceeds the FDA's recommended daily allowances.

Some people may experience nausea when they first start taking zinc, which may be a sign of hypochlorhydria, or low stomach acid. This tends to resolve over time. Taking zinc with food may also alleviate this symptom.

Manganese. Hypothetically, and based upon anecdotal reports, the amount of manganese that should be taken during pyroluria treatment ranges from 7-15 mg per day. Again, it's best to measure how much the body needs, rather than relying upon a general guideline or one doctor's specific protocol.

B-6. Vitamin B-6 doses may range from 75-150 mg per day (on average). Most people do best by taking a combination of both B-6 and pyridoxal phosphate, (P5P), which is a more bioavailable form of B-6.

Kinesiology is also recommended in order to find the appropriate doses.

People with this condition tend to have very low levels of chromium.

Although I haven't tested specifically for this condition, I have low levels of zinc, chromium and very high levels of heavy metals.

I started taking B6 and zinc and I started to feel better. Except for biotin, my multi-mineral already contains all the other recommended supplements. My NAC also has molybdenium.

I also realized that I need to take HCl again with foods as zinc does give me nausea, specially when I'm very tired and didn't slept well. It is an eye-opener to realize how frequent this condition is among the population.

 

[riccadus]

Well, I've recently tested positive to Pyroluria. I got a normalised HPL result of 21 ug/dL. I'm not sure where that sits in the average, but I believe 10ug/dL is considered borderline.

I was surprised to find a topic on the forum already - I hadn't come across the term prior to this point and I guess the name is kind of odd and I imagine my eyes would have glanced over it in the topic list quite easily. It's hard to believe it's such an unknown condition.

This certainly answers a *lot* of questions about the various struggles in my life though, past and present. Reading the list of symptoms was almost uncanny. Here I was thinking these were all just the unique traits peculiar to me, you know the things that make me "me". But there they all were on paper, and it turns out I'm just another one of those Pyroluria dudes - dime a dozen! It's certainly an odd feeling to find out that the most bizarre experiences that shaped your life were all "just a vitamin deficiency". But this also goes a long way to explaining why all the changes I've made so far with regard to diet, while improving the situation somewhat, just didn't seem to be getting me to where I wanted to be.

I watched Dietritch Klinghardt's presentation (via one of the links above), and that was extremely worthwhile. Thanks for posting that - he certainly seems to be the authority on the matter. His treatment plan seems a little off-the-scale though - 250mg/day of zinc! Perhaps it's for more extreme scenarios? I'm not sure. I took 150mg of zinc citrate and vomited it up about 15 minutes later. I can only tolerate it after heavy meals.

I wonder how many other forum members have this and don't know about it?

I've only just started treatment, but it will be very interesting to see what kind of noticeable changes it makes in me over the coming weeks and months. I may also experiment with adding back other factors I had stopped previously as it just wasn't doing anything, such as the Lugols, and see where that leads. Probably some chelating agents as well.

Exciting times ahead!

 

[Gaby]

His treatment plan seems a little off-the-scale though - 250mg/day of zinc!

And I can barely tolerate 50mg! The less stomach acidity you have, the more gastric problems you'll have with zinc. Sometimes I take my zinc with betaine HCL just to avoid the nausea.

I've only just started treatment, but it will be very interesting to see what kind of noticeable changes it makes in me over the coming weeks and months. I may also experiment with adding back other factors I had stopped previously as it just wasn't doing anything, such as the Lugols, and see where that leads. Probably some chelating agents as well.

Exciting times ahead!

I'm glad you found out about this topic.

I haven't done any specific test, but got some indirect signs in the past: zero zinc in my urine after a challenge test and heavy metals through the roof.

I made a plan to supplement with the vitamins and minerals, and to chelate heavy metals over the span of two years. If I'm not taking cilantro/chlorella or spirulina or activated charcoal, I'm doing a low dose of DMSA or EDTA. That way I'm still in "working" conditions. I'm dealing with my stealth infections on the background. After nearly a year and retrospectively, lugol has been very helpful too.

Sometimes, we can do with all the little help we can get :)