From Leonie:
“You ask about the old Dominic? He was basically debilitated and had been for 20 years or more. He forced himself to get up each morning if he had to work; otherwise, he tried to avoid facing the day by staying in bed as long as possible. This was his worst time (he called it the ‘morning horrors’) and he was only really communicative and relaxed by 7pm onward in the evening. Even then he was still consumed with anxiety, it was just better than it was in the morning.
He wore a look of distraction most of the time and struggled to be engaged because all of his energy went into simply fending off his Anxiety which he said was so bad it was virtually ‘exquisite’ in its severity. He had no lust for life. No dreams. No goals. He was just getting by – attempting to ‘look’ normal. To fit in. He had mastered the ability to cover up (to the unobservant) but living with him I saw and heard his ongoing anguish.
He ate healthily, meditated 1 hour a day and exercised daily. Managed to hold down a part time job. It had taken 13 years for his excellent psychiatrist to help him find a combination of drugs that gave him some semblance of a life, not a life of joy or energy but the bare minimum to attempt at least looking normal and having a part time job so he didn’t have to try to survive on the Disability Support Pension alone. When I met him, he’d been 20 years on medication with the combination tried over the previous seven years having been mildly helpful. I guess to Dom, it felt like a big success, to be able to study and to have a job out of that. He wasn’t living though.
After dating a few months, I suggested he try weaning off his medications. I was a mental health worker at the time and I was concerned about the long term side effects. I wondered if perhaps he was overmedicated, or perhaps under the meds, he was better but he just didn’t know it. He agreed and started the process of slowly weaning off. It was not good. I watched him slowly descend into madness. He became dangerously unwell with nightmarish, constant reoccurring thoughts about poverty and anguish in the world. Most of us are compassionate about other people and want to contribute to the world, but for him, it was as though a starving, war torn victim was directly in front of him, at the dinner table. On the lounge. In our home.
There was no buffer between him and all the evils and suffering of the world. These thought branched out into ethical living and helping others and donating tonnes of money, but I have to emphasize, he was CONSUMED day and night. I was able to talk him down sometimes, and normalise those thoughts temporarily, but within hours he was back there, a tortured soul ranting about suffering. I started to feel like perhaps I was the unwell one; I wondered how come I was not consumed by the suffering of others, maybe I was a horrible person and he was a saint, maybe he was going to leave and live in sackcloth and ashes and spend the rest of his days feeding the poor and hungry. It forced me to look at myself. I considered where the healthy point lay. The point at which a person is driven and passionate about helping others and the other extreme where people are wilfully disinterested in anyone but themselves.
I decided that a healthy person was passionate and driven to help others but it seemed pointless if there was no joy in it. I deeply believe that when we find our purpose no matter how hard it is, we can work in the most difficult of conditions and yet still find joy in it. I said to Dom that you cannot serve from an empty vessel, you can’t help the poor by becoming one of them and you add nothing to the world by not being grateful and joyful for what you have already. Dom knew and accepted this at a rational level but his illness pulled him in the other direction.
It was becoming apparent that he needed to go back on his meds. We broke up for a short time as I was finding the relationship extremely difficult, his lack of motivation, his basic lack of wellness. We were not apart for long, I need to tell you that underneath that unwellness is a heart of pure gold, a great humanitarian and a wealth of desire to get better. Dom is the brightest most intelligent man I have ever met and coupled with that is a humble outlook, and an openness to try new things.
As I mentioned earlier, I worked in Mental Health and I had heard some clients saying that since they got diagnosed with Pyrrole Disorder, they were much better. One had severe Anxiety and Depression and the other had Schizophrenia. The client with Schizophrenia raved about the effects but sadly she was not consistent with her supplements and became unwell after stopping her medication abruptly. I worked for the Medicare Local Partners In Recovery program and I asked for some funding to get other clients tested. Sadly, they declined.
I asked Dom if he would get tested, and I gave him some information. Dom was open but HIGHLY sceptical!. He did a lot of research (and there’s not much out there) before committing to going. I am sure it was only because he loves me a lot that he agreed, however, he is not the sort of person to shut off to things either. I was excited he agreed, so I thought, “strike while the iron’s hot!!” and in quite uncharacteristically pushy behaviour for me, I booked an appointment for him and sent him the details of how to get there! I said to him, lets at least rule out the physical side. I had wondered if it was a spiritual thing also or if he needed acupuncture, or a hypnotist. I was obsessed and desperate to see him well.
Dom went along to the appointment, and came back mildly interested (but not terribly convinced). He attended the second appointment and got his results back Pyrrole levels 46!! (5 is considered normal and 15 is high) and under-methylated. He bought the supplements recommended and made sure I knew they were “very expensive”!!!! Especially on top of the doctor’s appointment and the blood tests. It’s true they were expensive, it all was. But I said, “well what have you got to lose?” He completely agreed.
It was 2 weeks later that amazing changes started to happen. His outlook brightened, he was lighter and less troubled. He was smiling more (I’ve been with Dom just over a year and I never saw him smile widely enough to notice he had a gold tooth!!!!!) and the biggest indicator, was one morning, I was having my morning cuppa around 5:30am (I’m an early riser) Dommie usually gets up as late as he possibly can, around 10 or 11, anyway, I was sitting there when I noticed he was standing in the door way. I was immediately alarmed. I said, “OMG, what’s wrong?? Are you ok?” He replied, “I FEEL GREAT!!!” lol.
He no longer struggles to get out of bed, he smiles and laughs easily. He is still a huge Humanitarian but it no longer consumes him, he simply lives his life doing what he can to give back, but being able to maintain his own happiness also; prior to that he wouldn’t allow himself happiness while others were suffering. The changes just kept coming. He had more energy. He was enthusiastic and positive and he told people, “I feel like I’ve just woken up from a nightmare”. As he started to get used to this new feeling, and the novelty of feeling ‘normal’ lasted a good two months, he started to get angry. He was better simply from vitamins and minerals.
He had been seeing psychiatrists, psychologists and Medical Doctors for years. He said, “I’m bloody angry, now I know I’ve suffered unnecessarily for two decades”. This drove him to the Internet. He told his story to everyone he knew. Some people were interested but most weren’t, many were sceptical and thought he was selling something. He got kicked off /r/anxiety at reddit.com for spamming!
One of his closest friends who suffered from Bipolar saw the change but refused to get tested herself which was hugely disappointing. People came out and said it was just a ‘placebo’. It was insulting and discouraging. I said to Dom “save your story for the people who want to hear it. Don’t throw your pearls to swine”. Dom decided after much research that he wanted to become a Medical Doctor himself and specialise in Biochemistry as one of those who treated him.
It turns out Dom had passed the Mensa test many years ago, but never became a member. I asked him why and he said, “Well, if people knew I was in the top 2% of the brightest people in the world, they would then say, – and what has he done with his life?? And I wouldn’t have had an answer”. Now filled with passion, purpose and energy, Dom was able to put his intelligence to good use. He applied and got accepted into Sydney University and is now studying towards becoming a Doctor. He spends the rest of his spare time, doing his own research, setting up this website, as well as encouraging other people online who are suffering.
The only real down side of PD treatment, is the struggle with bouts of ‘copper dumping’, this causes occasional ragey moods and flu like symptoms. He’s only just started taking supps for that and the UM, so we will see how that goes. He still says it’s a tiny price to pay for gaining his life back, which is now unrecognisable to what it used to be.
I know he is eternally grateful to me for suggesting he get tested and reclaiming his life back, but what goes around comes around. I was ignorant of how very effective it could be and now I have been tested positive for PD and my children also. I suffer mild anxiety (mostly with tiredness and constant exhaustion) but my daughter has pretty bad anxiety which present as behavioural issues. I may never have thought to get her tested if I had not seen firsthand Dom’s amazing transformation.
I hope this helps others, Love to you all out there and I hope you find an end to whatever you are suffering from.
This is not the end, only the beginning….”
From Dominic: Please write your own story in the comments below. A potential drawback to sharing your story is that there must be some way of authenticating that it wasn’t just dreamt up by me. This would entail at least using an email address or something else that can be traced to an IP or account which I have nothing to do with. If this is an issue I’m sure there can be ways to maintain public anonymity at least by using a non-identifying email address.
UPDATE
My test results.
Commentary on the chart:
From diagnosis in October 2015 to October 2018: The aggressive antioxidant/stress management/dietary regime I’m on seems to be reducing my HPL (light blue). The copper, on the other hand, seems to be having difficulties exiting the system. I’ll be hopefully writing an article at some time on copper overload which will go into the mechanisms of this and why it may be the case in my situation.
January 2019: The copper seems to be exiting and my toxic unbound copper is lowering despite a small drop in the binding cerulopasmin. Zinc also seems to continue rising to lower the copper/zinc ratio favourably. The rise in HPL can be attributed to a great deal of turmoil in my personal life due to unresolved accumulated earlier issues coming to the fore. The mental clarity still persists since the initial tests and treatment results, despite the reading being so much higher than those tests. This would confirm the value of the HPL reading as a marker for oxidative stress rather than symptom severity as symptoms seemingly are managed effectively by the treatment.
January 2020: The turmoil in my life has abated, and this seems to show in the HPL levels as a measure of oxidative stress. Likewise zinc has improved, copper has lowered. The ceruloplasmin test was missing from this round but it is assumed in the general improvement that it has improved somewhat as well to an estimate from which the % free copper improvement is derived.
January 2021: I had reduced my intake of antioxidants since the last tests and I had moved home 6 months previously (major stress) and I think this shows in the increased HPL. Back to aggressive oxidation management! Ceruloplasmin (Cp) is still improving despite the increased oxidation and static copper, so the % free copper is decreasing further. An increase in zinc also means a continued decrease in the copper/zinc ratio thankfully.
Better Living Through Biochemistry 
True story! x
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My daughter got her reading back of 80 on Thursday (8yrs old)…my learning journey is about to begin. Any help/support/advice will be willingly received.
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Hi Lucinda,
It seems strange to congratulate someone on getting a diagnosis for a disorder, but at least now you know what’s wrong you can have a hope to actually see some real improvement. There’s an Australian Facebook support group for Pyrrole Disorder, https://www.facebook.com/groups/Pyrrole.Disorder.Australia/ It’s a closed group so you have to join, but there are a lot of people there who can give you help and advice. There is a lot of confusion out there even among people who know about it (which is why I feel I have to put this website together) and so you have to be careful about who you listen to and what you read, but you’ll see a common thread emerge. Did you get your test through a professional? If so, and they know about this, I’d say trust them unless you feel you’re not getting any benefit. If not, there are a quite a lot of practitioners in Australia who do this, even medically trained doctors and psychiatrists. We’re lucky in Australia that we have the highest number of practitioners per head of population in the world who know about this. I’d also look at methylation, and copper toxicity, which can exist independently of PD amongst other issues.
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Wishing you all the very best on your journey Lucinda! It is so worth it! Low and slow is out mantra! (And I am sure Dominic will agree)!
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Been tested myself Dom, after stumbling on a reply in the Whirlpool Forum when I was looking up the herbal ingredients in the METAGENICS NEUROCALM recommended by my wonderful Phycian trained Naturopath. Some guy replied to heaps of people complaining about their symptoms of anxiety by asking had they ever heard of PYROLLE Disoder. This led me to search it out (avid researcher of anything to help with anxiety/depression). Mentioned it to my Doctor on next visit and to my amazement, she said “yes I’ve heard good reports of people being treated for that”. I wondered why she hadn’t told me about it, seeing she was writing me scripts for an SSRI, and I had told her I had been on Anti-depressants for the last 30 yrs and had been suffering since childhood, probably born with it, plus unhappy childhood. I digress! ANYWAY, she gave me script for KPU test, my Number was 17.
New nothing, and no nothing more about it except what I read on the PYROLLE Group site which confuses me greatly as people talk about all sorts of letters and numbers I haven’t got a clue about. Doctor gave me script for Compound Chemist: “KPU THERAPY 200 X caps (Zinc picolinate 40mg, Vit B6 100mg P5P 50mg, Biotin 1000 mcg, Magnesium 100mg) Take TWO capsules WITH BREAKFAST as directed by your doctor”. Cost – $160! Have been on them for two weeks. Headaches, edgy at times very irritable and nauseous. To top it all of I was diagnosed with this very recently @ 81 yrs of age, suffering all my life (described by my mother as ” poor Jeanne, the worlds against her” on her death bed. I never thought that, I thought no that’s not right, my thoughts, my family wasn’t for me. Also last year @ 80 discovered via this iPad (which I am teaching myself with great difficulty!) after typing in “fat legs” the word LIPOEDEMA (look up http://www.lipoedema-simplified.org – if interested). so you see Dom and your lovely supportive partner I have a bit to contend with, plus a list of other chronic illnesses, nearly immobile, but fighting it. I have a gem of a husband of 57 yrs and four good adult children and 7 grandchildren, so have been richly blessed. I just wish I hadn’t been so depressed anxious and terribly negative for a lot of my life. Totally exhausted now, so must stop. So good to read your story Dom, related to so much. Happy for you that life is looking up and you have a wonderful supportive partner like I have. I live in Australia. God Bless you both. Jeanne.
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Hi Jeanne,
I’m sorry to hear about your many problems. I responded so well to treatment that it’s easy for me to forget that not everyone does. I think the reason for my success was that I didn’t have any other major health complications, and I had already changed my lifestyle to optimise my diet and stress levels which I believe are key to any kind of recovery. I have to caution people who start out that some react badly to B6, some react badly to P5P, and zinc will displace excess copper which can lead to a temporary aggravation of copper ‘toxicity’ symptoms. This could be the cause of any of your symptoms. Current research indicates that higher HPL levels are a result of oxidative stress (overwhelming amounts of free radicals), which is caused any kind of physical, mental, or emotional stressor including illness. This oxidative stress interferes with, among countless other body functions, metabolism of B6 and zinc which leads to the symptoms associated with Pyrrole Disorder and which increases stress and results in a vicious circle. I really have to get my act together and actually finish writing my article on this subject because that’s what this website is for.
You may have to start slow and only take one capsule to begin with. The problem with compound supplements is you can’t vary individual supplement quantities. With a level of 17 (ug/dL?) the HPL may be just an indicator of the effect of your other conditions. I tested as an undermethylator as well which causes a lot of mental illness symptoms, and high (40%) unbound ‘toxic’ copper which has its own effects as well. These are just some of the possible other causes of mental health problems. For more information I recommend looking at the website of the people who trained my Doctors in this and with whom I intend to train if I ever get to be one myself http://www.walshinstitute.org/
I wish you the best of luck.
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Hi
what a beautiful testimonial. Thank you both, Dom & Leonie. And i wish you both well on your journeys, both individually and together.
My son (25) and I were both tested last year (by a biomedical dr) and came back “borderline”(which may have been to do with the time of day of our urine tests. We have both been on different supplements tailored to our individual needs. I have been ok with them, but perhaps some of the symptoms my son is having means he needs an adjustment to the prescription. But he is still attending the doctor, so all should be fine. My next blood test is tomorrow.
I decided to wait until we had been on the supplements for a few months before i sent info about pyrroles and our story to family and friends who have ASD diagnoses. Only one so far has replied to me saying she will follow it up – her daughter actually had an appointment with the same doctor coming up, so they were going to add that to the mix. I haven’t yet heard the outcome. I am disappointed that the others haven’t followed through, but you can lead a horse to water….
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Thanks Marion,
Well, to me the ultimate proof is if you actually see an improvement, and other people see it too. You have to ask yourself how much that improvement is worth the expense. I consider myself extremely luck in that I responded so well to my treatment, and we can barely afford to keep it. I’ve been told I’m “shilling” for someone. Maybe Big Vitamin, maybe the people who are conducting the clinical research in the treatment method which led to my recovery. The people I intend to train with as a Medical Doctor. I’ve yet to see the big bucks.
If all else fails, just eat well and let that be your medicine. I wish you the very best of luck in your recovery, keep me posted how it goes. Cheers,
Dom
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DEAR Dom you are on the same biochemical FB page
I have been sick for 5 years spend over £30000 on therapists psychotherapists chiropractics homeopaths and fringe alternatives. I had extreme stress during 2012 a realisation my daughter who had gone to university was actually estranged and didn’t return a brief break up with my partner my job as a Special Needs teacher for24 years all took its toll and one night I went t bed and woke with symptoms of hell extreme despair and anxious depression.. it has been like this the past five years. I look ok though tests I have had show oxidative stress dysbiosis candida I also have fibromyalgia poor gut absorption low ferritin and more . My GP has no clue done the basic test thyroid etc all came back normal except this week my liver function alkaline phosphate was low. the GP said they only worry when it is high but I checked out why and it is linked with malnutrition low zinc low p5p. I had tried treating pyrolluria in th e past with zinc and p5p but I must have been copper dumping because my symptoms actually got a great deal worse and I gave up.. Basically any stress, particularly dysfunctional family stress and there is a great deal of this can send me into a suicidal despair causes worsening of symptoms. I cant travel far I have so many panic anxieties. What interested me was the way you were more relaxed in the evening. Noone I have asked in the past can explain how until 5pm I have suicidal depression and then slowly the veil lifts and I am pre illness relaxed and comfortable about 70pc of evenings are like this. I am working on healing my gut have started charcoal this week and increased fibre . I am already having no gluten sugar dairy alcohol etc. I pray do yoga which really helps with fibro and stress and walk a lot. I also practice an attifude of gratitude. I was struck to by the similarity with the humanitarian stuff it effects me right into my soul and impacts in increased stress.. at worse I had to stop watching and reading news ..im back to tat again at the moment . I look forward to hearing about what you think about my story and what you think about mitosynergie to help with the copper.
Bless you and your lovelywife
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Hi Lottie,
I’m really sorry to hear about your many problems. When I started university in Australia I was under a huge amount of stress, compounding previously high levels from various situations. At that time I developed a nasty candida bowel infestation as well as the severe worsening of the symptoms of what would later be diagnosed as depression, anxiety, and OCD. The infestation eventually seemed to resolve, but the symptoms never did. My understanding is that the stress, candida, and the symptoms which can be ascribed to the eventual Pyrrole Disorder, undermethylation, and copper overload diagnoses, are all related. I’ll have to talk about that more in other articles.
My symptoms largely cleared after 2 weeks of biochemical/nutrient/orthomolecular therapy with supplements. I was treated by a Doctor who had done extensive testing and prescribed an elaborate supplementation protocol based on that using their training by the Walsh Research Institute (see my article on Pyrrole Disorder). This is highly recommended for best results, as B6 and zinc are the basic supplements for treating PD but there are other cofactors involved, and there may be a combination of issues as is my case. Even then, I became aware of terrible “copper dumping” symptoms 2 weeks after that. Basically, that involved terrible inner rage, anxiety, and buzzing sensations in the torso, around the solar plexus area as well as the odd non-acne pimple. It was a struggle not to let this spill over into my relationships, but I also was extremely grateful about not being depressed and my new-found zest for life made it bearable. I eventually found that molybdenum and very large doses of vitamin C were useful in dealing with this, as when I started these 4 months into dumping the symptoms went away and have stayed that way. When I was retested recently, my HPL (“pyrrole”) level was down to 29.7 ug/dL from 46.5 ug/dL and even though my serum copper had gone up (expected when you are dumping) my ceruloplasmin also had so my toxic “unbound” copper also had gone down from 40% to around 26%.
Apparently, it is a common trait of PD that sufferers are terrible in the morning, easing as the day progresses. At my worst I’d lie in bed feeling unable to face the day for as long as possible, extending into the afternoon. Morning nausea was frequent, especially when brushing the teeth. I’d stay up as late as possible to enjoy the lessening of the symptoms, knowing that the next day the cycle would be repeated. I make a joke that with the aversion to light common in PD (which I still suffer from at least visually), the pale skin resulting from associated excess peroxide, low iron, the preference for evenings, and the mental disturbances, there may be a historical basis to the vampire legends after all. PD is supposed to be related to porphyria, which can have similar but worse symptoms as I understand.
I find in my case that it is imperative to live a lifestyle emphasising stress avoidance and management. That includes nutrition, supplementation, exercise, and meditation. A sense of spiritual connection and at least some form of gratitude are also beneficial, but these are personal issues which cannot be forced. The strategies you are pursuing are those which I would recommend to anyone. As far as Mitosynergy copper supplementation is concerned, I’m not convinced by the marketing (nor the science presented to justify it) that is is necessary at least in most cases like this. My understanding is that copper from organic food sources is safe and beneficial, while the culprit is the mineral copper from water, pipes, cookware, additives, and most cheap supplements. I’m simplifying terribly, but that’s why you need a properly trained professional advising you in these matters. I wish you the best of luck and hope you get the relief I did.
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Just a quick response to your wonderful healing but I will post more later – my son at age 4 was diagnosed whith bipolar, we
Lived a nightmare for years until we found Mensah Medical. I also wrote a story about his amazing healing… I will send it soon!!
My son is a severe undermythelator; had mild pyroluria; elevated copper and low zinc. Life was horrible until he was tested and treated with his biochemical plan.. we saw numerous doctors, psychiatrist’s and others who all recommended meds and said he had bipolar. Well they were all wrong!! Love to you for sharing your blessed story – I feel the same as you and also share to help others!!
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Great to hear! I’m looking forward to it. In their defense, they may not have been wrong per se. The diagnosis from symptom clusters alone would have been right according to the DSM but this paradigm considers the possible biochemical causes which are theorised from clinical research and diagnosed from objective testing. It’s a bit apple-and-oranges to compare them.
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Someone else shared their story in one of the Facebook support groups I’m in, here’s the link http://www.biomedheals.com/2017/03/pyroluria-difference-treatment-can-make.html
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Dominic,
Your story is so inspiring and gives me hope!! I have been on antidepressants for 20 years, sadly….I still have major episodes once every 4-5 years….I had one in June of this year that just will not let up. I did find out I have Candida and Leaky gut so I know thats part of it but its the anxiety thats just stripping my life away. I did the PR test, actually hoping I have it, but my number came back as 8,6…I guess normal is up to 10 :(. I think my copper / zinc ratio may be off….zinc is 100 and copper is 111. I am just hoping that maybe by detoxing the copper I can get better? I have a phone consultation with Mensah soon…..
Thank you for sharing your story. Its nice to hear a happy ending for once.
Heather
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H Heather, I really feel for you in your journey.
I did have a major Candida infestation around the time my Pyrrole Disorder (PD) symptoms really took off. In line with current research in the matter, I would say both the yeast and the PD were expressions of the severe stress I was under at the time, for various personal reasons. I suppose I carried a chronic yeast problem ever since, even though the major symptoms had disappeared. Yeast is known to be a zinc leech in the gut.
From what I have learned over the last few years yeast, stress, and other factors including diet are a major source of gut dysbiosis. This is the breakdown of the proper gut microbe ‘ecosystem’ which is increasingly being shown to be essential for good health, including mental health through the gut-brain axis. Intestinal permeability, or “leaky gut” is another expression of this dysbiosis and leads to multiple physical problems including inflammation which can also affect the brain. There is a lot of research in the effects of this on brain function that I know of, starting with Dr Abram Hoffer whom I consider the ‘father’ of this branch of the nutrient approach to Mental Health.
All of this is to say that as HPL (“pyrrole”) levels are really an indicator of the oxidative stress you happen to be under at the time (this is in the article I wrote on PD which is on this website) and which are now theorised to be the cause of what is now known as PD, you may still be needing some supplementation for this. 8.6 is still high, as 10 is the elevated end of the spectrum. This is for the trained practitioners to decide though. Similarly, there are other Biochemical issues known to affect mental health including copper overload, methylation problems, as well as the aforementioned gut dysbiosis and inflammation, which can occur independently of PD though their symptoms lie on the same spectrum.
It may well be that ridding yourself of excess copper not bound to ceruloplasmin under proper Medical supervision could provide you with a great easing of your problems, and I wish you the best in this. I do find from my experience that it is best not to rely upon one single solution as good as it may be, as it seems taking steps to improve one’s general physical and psychological health using a variety of strategies together tends to multiply the results you would get from each separately.
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I am on the Walsh Protocol with a Walsh Trained Physician. I am no longer diagnosable with many of the mental health concerns I USED to have. Thank you Dr. Walsh.
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Thanks for your comment James. If you would like, could you please keep us posted on how you’re doing? I’m also curious what your diagnoses were, both from the standard psychiatric DSM and the biochemical testing points of view.
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Hi Dominic. Yes I will post on how I am doing. However I am not comfortable sharing diagnosis and treatment. Reason being I am going to be M.D. someday and don’t want to disclose until possibly sometime in the future after I become Walsh Trained.
Healthy regards
James
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That’s great to hear! I’m exploring financial avenues which would enable me currently at the tender age of 48 to study full-time in an MD program for this same purpose here in Australia, assuming the other selection factors which would go with my good University Medical Admissions Test result might qualify me for entry in the first place.
If I’m unable to do this for any reason, I’ll stick with the part-time Medical Science studies and engage in research later in this field if I’m not too old! I look forward to meeting one day in some professional capacity but in the meantime I wish you the best in your studies and continued Recovery.
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Yes I am sure we will eventually meet professionally at some point! Your not to old to do what you want to do! I’m 35 and just starting life for the first time. The Walsh Protocol has produced miraculous results for me. I am very excited to become a doctor and heal mentally ill patients. It is what I am on earth to do. I wish you much success in any direction you go in.
Healthy Regards
James
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I have a great success story with PD. Treatment fixed my chronic fatigue syndrome in three days!
Full story on my website
http://www.80percentperfect.com/my-story-part-i/
Love your site Dominic
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Thanks! It’s a work in progress, as time permits. Wonderful to have your story, and to hear someone got better even quicker than I did!
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I started the Walsh protocol in October 2015 for Generalizide Anxiety Disorder. I had struggled for about 4 years with it on and off having never suffered with it before the age of 32. I have no idea the cause but my best guess is it started when I had my Gallbladder out and with the exercising everyday and dieting I did before my wedding.
After I got married I started worrying about things that I would normally brush off and eventually I started having extreme anxiety and Panic attacks. Of course I tried antidepressants but they did not suit me long term and had lots of side effects. Eventually I found the nutritional approach but with someone who was not Walsh trained and I did not respond well but she did give me the book that changed my life! Nutrient power and I went to the only trained Walsh practitioner in the Uk.
I saw results straight away, in the fact almost immediately the panic was cured but it did take a year to feel completely as I was before it all happened. It seems I’m an undermeythlated with High copper and low Zinc. The Zinc seems to be the key issue for me and I do wonder if I’ve been low in it all my life and just the large amounts of exercise, diet and stress of getting married tipped me over the edge.
I am still on the Walsh protocol now and I will be for the rest of my life as I have no intention of ever having one day of anxiety again in my life. I am so glad to say for me it was a complete cure!!
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That’s great Kirsty, I’m really glad it worked for you eventually. I hate to sound like I’m advertising for the WRI but they have decades of clinical research data in this, and when it comes to Mental Health I don’t think anyone can come close. I wish it were more widespread and that circumstances didn’t make it that they have pretty much a monopoly on the most advanced research, such as it is.
I used to tell everyone I was “cured” too, and it really felt like that, but I realise that if you have to take supplements for the rest of your life then I suppose it’s best to say that you’re “cured of symptoms” at least. “Relieved” is a better word, but to me it doesn’t really convey the full force of the relief! Dr Walsh does say that as long as the expensive scientific studies haven’t been done to confirm the effectiveness of the treatment, then all they can say confidently is from the published data is that people are able to reduce their medications long-term, sometimes completely. I am grateful that I’d be one of those, and I’m happy it seems you are too.
I look forward to the day if ever I may be able to not rely on my supplements, but I’m happy they’re working. Medications aren’t really meant to be taken long-term if possible. They did work for me somewhat, but it was nothing like this and the side effects were intolerable to me. I hope it stays a “complete cure” for you too, all the best!
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Hi Kirsty, good to read your story. I am looking for a Walsh-trained practitioner in the UK for my daughter. Could you let me know the name of yours? Thank you, Ann
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Hi Ann sorry it took me so long to approve the comment. I’m still working out if it is appropriate to be giving recommendations (or otherwise) on individual practitioners on this site. Is there some way this can be done privately?
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Here’s our story (it turned into a bit of a novel). 😉 I hope it’s helpful to others on this journey.
Our son was extremely challenging from the age of 2 on. As a toddler/preschooler, he was hyperactive, “sensory seeking” (would crash into people, furniture, walls, etc.), oppositional, and aggressive. At age 4, he was kicked out of three preschools in one year because they were unable to deal with his behaviors. Despite being exceptionally bright and having the language/communication skills of a much older child, he refused to participate in any of the activities at school, randomly lashed out and attacked the teachers and other children, and spent most of his time in “time out” in the preschool director’s office. Because of his inability to function in a school environment, we decided to homeschool him. I left my corporate career to stay home with him full-time when he was 5. At age 7, he was diagnosed with Asperger’s Syndrome (high-functioning autism). However, none of the typical therapies (i.e. ABA, occupational therapy, etc.) really seemed to help him. Around this time, we had him tested for food sensitivities, which identified a number of foods he was “reactive” to. We put him on a diet free of his reactive foods (in his case, gluten, dairy, soy, eggs, peanuts, almonds, shellfish, as well as MSG, HFCS, and all artificial colors, flavors, and preservatives). This helped for awhile, but didn’t resolve his behavioral issues completely. He took various supplements that were touted as helpful for kids with neurodevelopmental/behavioral issues but none targeted to his specific biochemistry (these helped somewhat). He continued to be incredibly oppositional, defiant, and argumentative with occasional aggression and mood swings (but relatively manageable compared to how things had been before).
He was doing fairly well on the above diet/supplement protocol until about 4 years ago. At that point (age 10 – likely the onset of puberty) he once again became extremely aggressive, had very little frustration tolerance, became more oppositional (way more than he had been) and would lash out at the slightest provocation. He also became violent, especially towards me and his little sister (and to a lesser extent, my husband). He had never been kind to his little sister (4.5 years younger than him) but at this point, he started hitting, choking, and otherwise torturing her every time we weren’t watching. We could not leave them together unsupervised during the day, and had to move her into our bedroom at night (because he started attacking her at night after we went to bed). She ended up sleeping in our room for 2 years. He would also attack me multiple times a day. Anything that could be used as a weapon, was. We had to lock everything up (kitchen knives, hammers and other tools, baseball bats, gardening tools, etc.). He has always been a big kid, and was my same height/size at this point. We rarely took him out in public during this time, because he was so unpredictable. He constantly threatened to run away, and frequently did. We spent hours every week looking for him in our neighborhood. Whenever we drove somewhere, he would try to jump out of the car at stop lights and run off. At stores and restaurants, he would try to escape. He started becoming delusional and was plagued by bizarre ideas. He developed a fascination with fire, and started trying to set fires on our property every afternoon (we live on 5 acres in the middle of a thick forest). When we removed all matches, lighters, and other fire starters, he was out there with a magnifying glass trying to use sunlight and pine needles to get a fire started. We were constantly on alert and never able to relax around him. We never knew what would happen next. There was much more, but the bottom line is that he was completely losing touch with reality (definite schizophrenia symptoms), and was a danger to himself and others. Age 11-12 was the most difficult year of his (and our) lives, which included multiple interactions with police and culminated in a state-mandated (M1 hold) stay at inpatient psychiatric facility a few weeks before his twelfth birthday.
Long story short, we were desperate to find answers. A few months after his hospitalization, I learned about pyroluria. We ordered the pyroluria test/metabolic panel from DHA Laboratory in late January 2016. The test results came back positive for pyroluria and high histamine/undermethylation. We began treatment in February 2016, and started seeing incredibly positive results (elimination of delusions/psychosis, reduced aggression/violence, overall happier/calmer disposition, less oppositionality, etc.) within 2-3 weeks. A few months later, we also ordered the Organic Acids Test from Great Plains Laboratory, which identified low serotonin and high oxalates. Treating for the latter resolved some lingering issues that the pyroluria protocol was not able to resolve. Since we began treating my son’s biochemical issues we’ve seen an incredible turnaround. All of the issues that made life so difficult for him and us for over a decade are either completely gone or reduced to an insignificant level. He’s still a bit moody at times and there’s some lingering oppositional behavior – but he’s 14 now, and it’s within the realm of normal for a teenager IMO. Most days, he’s happy, calm, cooperative, and finally able to enjoy life in a way that was impossible for him before. Also, for the first time since preschool, he’s now enrolled in school. He started 9th grade at a local “hybrid” program (attends school two days a week and still homeschools the other three) this year and he’s doing great! Not a single complaint from his teachers (they all love him!) and he’s enjoying it as well. I still have to pinch myself to make sure I’m not dreaming, as this truly feels like a miracle. 🙂
This is an incredibly condensed version of our story, but I hope that I’ve shared enough to provide hope to other parents of kids like mine, and adults who may be experiencing these symptoms themselves. Identifying and treating pyroluria and other biochemical imbalances quite literally saved my son’s life. If you’re reading this, my wish is that you’ll experience the same complete healing and return to wholeness. ❤
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I’ve heard stories like this before on the Facebook groups, but nobody has ever written one so powerful to me here before. From my own experience, I can imagine the liberation and relief he must be feeling. Hearing about grown people getting better is great, but there’s something special about knowing that it looks like a child has been spared a future of illness, alienation, and the suffering these bring to themselves and those around them. I really hope this continues for the sake of everyone involved.
How is the treatment being formulated? Whatever you’re doing, it looks like it’s working, but I really hope he’s getting the best care he can under the supervision of a properly trained professional. My bias towards the Walsh Research Institute as a source of training in this is more than just due to the fact my own MD was trained by them. From what I’ve seen they have the most extensive, up-to-date, and scientifically rigorous databases of clinical research outcomes of anyone, inheriting the work of other pioneers beginning from the 1950s.
I really wish there were funding to conduct the proper trials to help make the treatment more acceptable and effective so people don’t have to get as desperate as you and I did before this avenue is considered, with the potential pitfalls arising out of a lack of official recognition and the standards that come with that. Thankfully it appears some is coming through in dribs and drabs from academia, which is why I’m now planning to go down that route and make my own contribution towards this if all goes well.
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Hi, thank you so much for sharing your story – this is all very new to us but this is the first testimonial I’ve come across that discusses the extreme psychological effects of pyroluria. I really feel for what you have gone through. My daughter is 16 and has always struggled with anxiety. When she started high school she became severely depressed and isolated (she experienced bullying, eating disorder, self harm etc) – to the point where we let her leave school in grade 10 as soon as she got a job. She began improving tremendously, although anxiety, hypoglycaemia and some moodiness was still an issue. Then 6 weeks ago she experienced a severe emotional trauma, and 2 weeks later was hospitalised for the first time. Last week she was given a clinical diagnoses for pyrrole disorder, possible methylation and copper issues and she is experiencing various types of seizures, delusions, hallucinations, fainting, attempts to seriously harm herself etc. We have had an MRI and are waiting on an EEG and ECG (detected some potential heart issues) and will be doing the pyroluria test this week, and starting treatment soon after. We are already making changes to diet. At present, Doctors are using Olanzapine and Diazepam to ‘control’/reduce impact of seizures and self harm episodes until treatment gets underway. However her symptoms are escalating and are extremely debilitating. How do other people manage these extreme symptoms until treatment kicks in?
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Hi Natasha,
I’m extremely sad to hear about what you daughter is continuing to go through. I have no doubt she is getting the best Psychiatric and Psychological care available but I do hope that the Medical attention she is getting with respect to the Biochemical issues is from a practitioner who has been properly trained in this to ensure optimal results. My experience in this has been under the care of those with Walsh Research Institute training and it’s no secret what a fan I am of them. I also hope that she improves no matter what the causes, as it’s not guaranteed that these are even due to the issues covered by this paradigm.
The methods people use to manage symptoms are as varied as the people themselves. I can’t go into them all but I can speak from my own experience. Although my own symptoms were nowhere near as dramatic I eventually found solace in what I called the “two Ms”, meditation and medications. The medications themselves were not effective until my Psychiatrist and I (I look upon it as a therapeutic partnership) found a combination which offered some relief. Olanzapine was one of them and it was a blessing but came with severe side effects which made its use problematic, as was the case with the clomipramine. The meditation was wonderful as a way of abiding through what I labeled “psychic pain” and which I imagine is also what is referred to as “psychache”, but you can’t stay sitting on the couch with your eyes closed all day.
Prior to the relief from the medications and later the meditation I took refuge in what is known as “self-medication” through the use of alcohol and cannabis, with a greater preference for the latter. As my dependence upon this method of distraction from the pain grew, I am grateful I was able to obtain and use the cannabis rather than the alcohol. Although the side-effects of smoking large amounts of illegal modern-day cannabis with its attendant toxicities (including from tobacco) had their own impacts, they ceased when I was not compelled to use it as much when the medications finally had the desired effect. My use of this tapered off after I was able to taper off the medications themselves, and for a while now I have thankfully been free of all of these. I have found that meditation, on the other hand, is a gift that keeps on giving and my practice of this has deepened and grown while I feel I have as well along with it.
Had alcohol been the only available escape I imagine my physical health would have been impacted permanently to the point where I would not be able to function with the vigour I am blessed to have found again after so many years. Therein lies a lesson not only as to why so many people find themselves dependent on the bottle, but also that it is imperative that there be less harmful alternatives for use to those who find themselves so compelled. I understand that there are varieties of ‘recreational’ drugs which are safer and less damaging to society than what was available to me at the time, though it is sad indeed that this would be even considered a manner of dealing with problems like these in the first place.
All I can conclude is that until there is some form of effective treatment combination which addresses all aspects of the person, I imagine it would be best to let the person themselves decide the manner in which they would keep themselves distracted from their personal horrors while encouraging the ones which are safest and socially acceptable. Creative pursuits are good at this, as are aesthetically stimulating ones I have found. I was very fond of listening to music (loudly) and dancing, cooking, and writing computer code. Intoxication enhanced the first two, and the enjoyment of the third, but these are dependent on the state of mind of the person themselves. I wish your daughter well in her journey to find the same relief I did, however that may eventuate.
Dominic
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Thank you for your prompt response. I am actually a bit relieved to know that olanzapine has been prescribed to other people, as we are quite concerned about the adverse effects. We live in a regional area and the local hospital initially put this down solely to mental health issues, but we couldn’t understand how an anxious but otherwise healthy 16 year old could suddenly develop so many serious neurological and psychological issues within a matter of days. Then they saw these seizures first hand and sent us to the regional hospital and a team of doctors from various disciplines assessed her. Luckily for us one of them was aware of pyrrole and methylation disorders and referred us to a qualified integrative pharmacist who has been fantastic. We have been really fortunate that our local GP is very open minded, and the local hospital has come on board and are liaising with the integrative practitioner and regional hospital. They initially advised to give the olanzapine ‘as required’ (ie during a seizure or agitated episode) which was working, but a few days ago it began escalating (up to 12 seizures and fainting 7 times in one day for last 3 days), so they have modified that to a more pre-emptive approach and suggested controlled small doses a couple of times a day, then additional olanzapine only if required (maximum 10mg total a day). For the moment this is helping, but we realise this isn’t a long term solution. Just trying to hold on a few more days until testing is done and we have some definitive answers and can develop a treatment plan with the help of all the fantastic medical professionals we have met in last few weeks.
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You’re welcome. I’m intrigued how Pyrrole Disorder/Pyroluria (PD) and methylation problems may be tied with seizures, but I do know that PD is thought to be caused by excessive oxidative stress which can have a sudden trigger. This oxidative stress is capable of damaging DNA or making harmful epigenetic changes which would have unwelcome long-term effects and perpetuate the PD, from my understanding. I wasn’t aware olanzapine is used for seizures, as an antipsychotic I found it useful in managing my anxiety. I do hope you get some answers which will be useful in helping your daughter.
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In my daughters case, they believe case conversion disorder is in play – that is, when she has an ‘extreme’ panic attack, the mind/body becomes overwhelmed (extreme fight or flight mode) and generates an atypical physical response:- non-epileptic seizures, temporary paralysis, fainting. She has a lot of insight, remarkable for her age, and doctors believe she is fighting back against the extreme symptoms and urges, and when it becomes too much, her mind temporarily shuts down. The olanzapine controls the anxiety, which in turns reduces/prevents seizures and other psychological symptoms.
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That’s fascinating. I do know from my own experience that in severe anxiety and panic attacks the mind freezes to the point where rational thought becomes impossible and one gets stuck in a kind of mind paralysis. Perhaps this is the physical equivalent? I found that I still suffer from this occasionally when I attempt out of habit to ‘force’ the train of thought, meditation has taught me to simply observe the blockages and wait for them to pass. I find things go much smoother that way in regaining ‘flow’ and it is subsiding with practice. I recommend it to anyone, especially these kinds of problems. I wish her well.
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This week has been epic!!! For my 7 year old son. Pyroluria IS A BIG HUGE PIECE OF MY SONS PUZZLE! I can’t stress this enough! We had been doing zinc and b6 for 3 years prescribed by his MAPS doctor. And my son was healing from autism and eventually considered very mild on the spectrum. In the borage of supplementation involved in autism I had gotten away from b6 and zinc and not knowing why my son started backtracking, speaking less, less happy, then after 6 months of no b6 and zinc gross and fine motor skills started to decline then tremors started when he was happy or excited. This went on for 12 months and I would post and people would say maybe epilepsy.
One month ago we got the results of the $88 urine test and it showed up as Pyroluria which is a zinc and b6 deficiency
We are 3 weeks into the base supplementation (loading) and he is back to very mild autism. Tremors gone, talking more, showing off a lot, dancing and singing. Playing basketball, great bike riding. Better comprehension, reading aloud instead of being Oppositional. And wanting to write and draw, this was his least favorite thing now he is constantly asking me for paper a markers!
I am not up to the recommended dose yet because you have to work your way up slowly!
I am very happy and excited about this!!! And tomorrow I get the results of the full metabolic workup from DHA Laboratory. I want thank you Dominic for all your help!!!
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Again, that is absolutely wonderful to hear. Everything I said in the reply to the last comment applies here as well. From what I’ve seen it seems that issues like Autism, OCD, ODD, and even ADHD share many common biochemical traits, along with Depression, Anxiety, and Schizophrenia. An understanding has evolved that the diagnostic labels generally applied are really only a way of pigeon-holing clusters of symptoms which are just visible signs of different common underlying biochemical conditions in combination. With regards to Autism in particular, I myself have been diagnosed lately as having a form of ASD which would seem to fit in well with theories from the perspective of this paradigm. http://www.walshinstitute.org/uploads/1/7/9/9/17997321/walsh_the_bermuda_triangle_of_autism.pdf
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So amazing to find your site Dominic! Struggling with two children with pyroluria symptoms (long story). This is relatively unheard of in the UK. Desperate for rigourous evidence and support for myself and others I put together a website (www.vamfew.org). Aimed at awareness raising, thinking about the future research and a peer-support community. I was about to launch and reach out for posting on the peer-support community. Through a blog comment I found the international Facebook group (there are many empty pyroluria groups on Facebook so I had not realised this before!) and your website. Turns out you are a couple of years further down the line on the same mission!
I already feel so much more informed with your discussion on oxidative stress and how the zinc and B6 binding theory is proposition rather than research. I had done some lit review. It is so difficult to be discerning with the information out there.
My idea is that we (sufferers or family of sufferers) need to effectively mobilise so we can lobby donors. The Facebook comments run in disparate threads. The testimonials you have are great but few. If we can reach out to sufferers via Facebook and any other means and organise our experiences effectively to get clearer messages together it should be easier to get funding. We could potentially crowdfund between us also.
My research idea was to start at the beginning which is proving that this is a ‘thing’ before we rush into proving treatments. My research idea was to gather testimonials from people who had tested for high HPL and see if we could present a better picture of what this is.
The main problems that I see with pinning this down:
• Wide range of symptoms
• Condition affects different individuals differently
• Symptoms come and go over different time periods
• Each symptom may have many other causes
I’m not sure that organising testimonials will help with this but it seems a sensible step forward. I was hoping to raise funds to do this in a formal way but it strikes me now that doing this informally online may be a good step forward in getting the funds to do something more scientific.
I need to revise the purpose of my website (maybe for data collection?) or not bother with it since it largely aims to do what you are doing. I hope you are interested in working together on moving forward with this somehow. We should put our ideas together. I was on a lonely journey trying to convince people about this and feel so encouraged that there are others out there like me.
Best wishes, Laura
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Hi Laura,
It’s really heartening to see more people get involved in the push to see this taken more seriously. In my limited experience with this I find testimonials to be more useful for people who are desperate enough to be wanting to try this, if they have no experience of it themselves. I read some of the negative articles on this out there when I did my own preliminary research, as Leonie has testified already I think. It was only because Leonie personally had witnessed positive outcomes in her work, as she recounts, that I was willing to go to the expense of testing and treatment. It also gave me some hope, but I just wasn’t prepared for the size of the effect.
Skeptical people such as who wrote those flawed negative articles won’t be swayed much by testimonials, no matter how sincere. These are “anecdotal” evidence and the only way to get interest in funding for validation studies is through the publication of clinical outcome studies, or building on existing published research. The Walsh Research Institute has been attempting to get funding through the former[1], and Prof Julia Rucklidge has been making a great contribution with the latter[2] in Academia[3]. The second option is my own optimal chosen path, in the time left to me at my relatively advanced age.
I think combining efforts with collating and sharing verifiably legitimate and uniquely identifiable testimonials is a great idea. I’ll also address the issue of those negative articles and studies you have linked to on your own website[4] as it is important to understand why they are flawed and therefore irrelevant to the Mauve hypothesis, since it seems they have such a wide impact on the consideration of funding and treatment as mentioned previously.
Cheers,
Dominic
[1] http://www.aph.gov.au/Parliamentary_Business/Committees/House_of_representatives_Committees?url=ee/mentalhealth/subs/attach01.pdf
[2] https://canterbury.qualtrics.com/jfe/form/SV_9tuUrGVhcTveHEp
[3] https://www.researchgate.net/project/Incidence-of-pyroluria-in-anxious-people-A-Randomised-Controlled-Trial
[4] https://biochemicalhealth.org/pyrrole-disorder-aka-pyroluria/
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What an incredible story! I am so happy for you Dominic! Good on you Leonie for supporting Dominic through the process as well.
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Thanks Brett. The journey never ends. After this wonderful honeymoon period a year later I had to deal with the backlog of the psychological stresses and traumas which had caused the biochemical imbalances in the first place, and which had also been piling up due to my inability to cope. I have recently been diagnosed with Aspergers, this late in life, and that can’t have helped but it certainly explains a lot.
I’m thankful that I’ve been in a position to deal with it all due to my newfound clarity, despite the rollercoaster of emotions, with the help of very good therapists. Leonie was trained as a counselor, but this was too big a job for her unfortunately and I’m thankful for all the help I’ve received from everybody including her. I may yet be in a second honeymoon.
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Awesome read Dominic! I am so glad for you to have found success. I found out about you on Phoenix Rising and it brought me here. My history is very similar. 20 years of anxiety and just getting by and attempting to look normal but still having the inner tension and recent panic. I am 55 now and recently got the Pyroluria test through Mensah Medical with a 12.51 score. Mensah has me on 200 mg b6 and 100 mg p5p and 70 mg zinc as well as Molybdenum, NAC, Evening Primrose, Vitamin C and Inositol. I was told by Mensah that the B6 is stored as backup since the p5p get absorbed quickly and is excreted quickly which is why they prescribe both forms for treatment.
Hope all is well,
Best,
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Hi and thanks, Andy. My friend was right that it was only the beginning, new challenges have come about due to the long preceding years of darkness (and their causes) which now have to be reckoned with. As I still say, it’s an upward trend even if it’s not a fast one. I’m glad I’ve been eloquent enough on the Phoenix Rising forum to give someone the idea this may be truly useful.
I hope you get at least some similar results to me. Perhaps reading more of the information I have presented here may give you some insights about this, especially why I think Nutrient Therapy alone will be like swimming against the tide if general lifestyle, psychological, and nutritional issues aren’t addressed. Keep me posted, Dominic.
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Thanks Dominic. I am continuing to eat healthy and exercise (love bicycling). But have also added meditation and Heartrate Resonance Breathing from Forrest Knutson on youtube as well as cold morning showers. I’m seeing a doc that also uses functional genetics blueprint to see how that affects my health. https://yourgenomicresource.com/
Are you still on the Walsh regimen or on a maintenance dose level (I recall you mentioned 3 years on therapeutic dose) now like 25 mg p5p and 50mg B6? I’m hoping I won’t have to be on the regimen for more than a year. We shall see.
Thanks,
Andy
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No worries Andy. All good strategies which I’m following in a similar way, but I find it impossible to step into a cold shower in the morning. It’s bracing enough to rinse off with cold water after lathering up in nice hot water, especially on a cold winter start. The mindfulness certainly comes in handy in times like these! It turns out I’m COMT heterozygous which explains my problems with things like adrenaline amongst other catecholamines.
With my emphasis on the effects of oxidative stress and how that drives Pyrrole Disorder as I see it, I’m maximising the antioxidant side and trying to minimise free radical exposure and metabolism of Reactive Oxygen Species through stress management, extra supplements, and a low carb/keto lifestyle (it’s not a ‘diet’). I’m hoping this will help reduce my need for the Walsh regimen.
If you look at the chart below my own testimonial, perhaps I’m being successful and could look at reducing these in the future. Given the spike in HPL during a really stressful period, this may be optimistic. https://biochemicalhealthdotorg.files.wordpress.com/2020/07/dom-biochemical-test-progress-2020.jpg?w=768&h=542
These days I’m the main moderator for a FB group around the topics closely related to stuff in the Nutrient Power book. Care to join us? https://sites.google.com/view/nutrient-power-group/home
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