“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.
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.