In May 2014 a gentleman named Jay asked this question on my Pyroluria Questionnaire blog: “have you come across a connection between pyroluria and focal musician’s dystonia (musician’s cramp)?
I responded saying “I have not and until I looked it up I was not aware of this condition. I’m curious why you’re asking? Do you or someone you know have symptoms of pyroluria and focal musician’s dystonia?”
I’m a very curious person and always turn to the research and like to look for connections. I started to dig and came across the The Dystonia Society, a UK based organization that provides support, advocacy and information for anyone affected by the neurological movement condition known as dystonia. They have this definition on the About Dystonia page:
Dystonia is a neurological movement disorder. Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures.
The various types of dystonia are listed and they discuss managing symptoms and say:
Remission from symptoms does sometimes occur but is rare – occurring in around 5-10% of cases.
I posted some feedback, starting a dialogue (both in the comments and via email) that led to me learning a whole lot more about dystonia and the finding out there does seem to be a connection to pyroluria, a social anxiety condition that is not well-recognized in the medical or mental health community. Symptoms include inner tension and discomfort in big groups. Many introverts relate to the symptoms of pyroluria too.
In the process Jay saw wonderful results, we heard from Dave and his success. And we’re getting to share this information in the hope of helping others like him and Dave.
Much of the information is buried in comments on various blogs so I’ve decided it needs a separate blog post – with the connections and research I discovered and some of the inspiring feedback from Jay and Dave.
This is most of what I originally posted (with a few slight revisions).
I do see some overlaps with dystonia and mood so it’s possible there is a connection between pyroluria and musician’s dystonia:
(1) The Dystonia Society is a wealth of information and has this on their mental health page: “it is now thought that people affected by dystonia are more likely to experience mental health conditions such as depression, anxiety and OCD even before the physical symptoms of dystonia appear. It is not known why this is – but it appears that whatever causes dystonia may also affect mood and behaviour in some way.” Now I wonder how common social anxiety is for those with dystonia?
(2) “An additional relation between dystonia and mental health conditions is that some drugs used to treat psychoses can cause tardive dystonia / dyskinesia. With the new generation of these drugs (called dopamine receptor blockers) this is much less likely than it used to be – but unfortunately a small risk remains.” (this is also from the above dystonia page)
(3) The drug treatments they recommend are also often used for anxiety and depression. I’d suggest assessing for low GABA, low serotonin and low catecholamines first (using the amino acid questionnaire and determining if targeted individual amino acids may give the same relief. I would avoid benzodiazapines – Dr. Catherine Pittman shared the many side-effects and withdrawal effects during the Anxiety Summit.
(4) If you have pyroluria, you’ll also have low levels of zinc and vitamin B6, key co-factors in making serotonin and GABA and other neurotransmitters which affect anxiety and depression.
(5) Depression, anxiety, pyroluria and dystonia have a possible autoimmune/gluten/diet connection. This paper “Movement disorders in autoimmune diseases” discusses how “Tremors, dystonia, chorea, ballism, myoclonus, parkinsonism, and ataxia may be the initial and even the only presentation of these autoimmune diseases.” And here is a case study where the dystonia resolved on a gluten-free diet: “She had complete resolution of her neurological symptoms with introduction of a gluten-free diet.” We know gluten can damage the gut and lead to low levels of nutrients such as zinc and also cause low serotonin.
(6) Wilson’s disease (a serious condition of high copper/low zinc) can have symptoms of dystonia. This 2012 paper states: “The clinical manifestations of neurologic Wilson’s disease include variable combinations of dysarthria, dystonia, tremor, parkinsonism, ataxia, and choreoathetosis.”
I’m so pleased Jay asked this question. I learned a lot by looking in to this initially and since then have learned a great deal more.
And take a look at the fabulous results Jay and Dave saw when they implemented only the pyroluria protocol (the starting dose I use with clients is 100mg vitamin B6 and 30mg zinc and 1300mg Evening Primrose Oil):
From Jay in June 2014
I started taking B6 (Pyridoxine Hydrochloride) 120mg and Zinc USP 60mg 2 weeks ago and do find some relief already. As you may have guessed, I have had dystonia for a long time and had to put a professional musician’s career on hold, and when I read your site, I found that I have a large number of symptoms from your list – I am hopeful.
From Jay in September 2014
I think it is, at this point, safe to say that the pyroluria treatment is, at least in my case, the cure for pyroluria and dystonia. 90%+ of my symptoms have disappeared, I am working extensively on repertoire and I am thinking about getting back into performing.
Dave in September 2014
just writing here to say that i too have battled focal dystonia over the past 8+ years. actually started as writer’s cramp and then worked it’s way into my guitar playing. about 3 years ago i noticed symptoms lessened based on different things i ate and shortly after came across pyroluria. in all questionairs i answer yes to most if not all questions.
anyway, for the past 2 years i’ve been on zinc and b6 and have had vast improvements. for me, the muscle disorders don’t go away without retraining, but the b6 and especially zinc make retraining much more successful. however, sometimes i do hit the jackpot and my hands work almost normal without the efforts of retraining. my dose fluctuates between 25-60 mg zinc and 50-100 mg b6 which i seem to have more trouble taking. i also experimented with methyl b12 but that led to a very painful rash.
the funny thing about all of this is that i feel nowadays that focal dystonia was only the canary in the coal mine for other symptoms that paid little or no attention to because i was only focused on being a musician. as a result of taking supplements most of those other symptoms are much better and i’m soooooo close now to having proper movement in my fingers.
it’s really great to see what you and jay have posted here because it really validates what i’ve been doing. i too believe there are many that can be helped by this.
Jay in October 2014
I am so happy to read this dystonia related success story! After my own experience, I still say an experience akin to rebirth as a musician and also as a person, this was the reason for me to post on this blog – to help get this out to musicians who are victims of dystonia and inadequate medical treatment.
We’re hoping we can generate some interest from various dystonia organizations/groups/forums and help more musicians find symptom resolution – certainly more than the 5-10% the Dystonia Society reports. The more people reporting success, the more likely approaches like this will be studied, accepted by the mainstream medical community and included on sites like the Dystonia Society.
If you relate to any of this please do comment and let us know what your results have been.
If you know someone with musician’s dystonia (or another form of dystonia) and pyroluria/social anxiety please do share this with them.
I tested positive for pyroluria(high). My blood work shows I’m extremely high in b6, but my organix test showed I’m deficient. So this is why I’m taking p5p.My question would be ….what dosage of p5p would you recommend? I have all the crippling symptoms of pyroluria, and believe this is why I’ve had inner tension since childhood.
Thanks so much Trudy for all the time you spend educating us all 😉
Hi Carolyn
I can’t offer specific advice for you but can say that if I was to have my client start on P5P I’d have them use 25mg and then go up to 50mg based on dream recall (they should be pleasant and you should remember them every night) and reduction in social anxiety and inner tension.
And you’re so welcome!
Trudy
Trudy, another great article. I just love how you are so dedicated to your business. It’s so clear you love what you do and you are AWESOME at it!
When you’re passionate about something Tandy, it’s easy to be dedicated!
How fascinating Trudy – I had never heard of this before either. Good on you for having the curious mind to go down the rabbit hole and search for answers that can help others in future!
It’s what I love to do Heidi – dig, read, find the research and share it! and seeing results like this makes it all so worthwhile!
Wow!
I took the pyroluria questionnaire and realized I answered yes to a lot of the questions.
Now this article clinches it, because about 20 years ago I was diagnosed with spastic dysphonia after a long bout of laryngitis and low grade fevers. Then about 6 years ago diagnosed with Hashimoto’s and more recently with histamine intolerance.
Can pyroluria be the start of it all? I feel as though it’s a dominoe effect on my health.
I have started taking B6 and Zinc Glycinate. I have hope this will help.
Thank you so much for this info!
Hi Linda
Thanks for sharing here. I am not terribly familiar with spastic dysphonia except from what I know from hearing Diane Rehm (host of the Diane Rehm show on NPR) and from a colleague who has it.
I was also not aware it fell under dystonia but just found all this on wikipedia (http://en.wikipedia.org/wiki/Spasmodic_dysphonia)
(1) “Spasmodic dysphonia (or laryngeal dystonia) is a voice disorder characterized by involuntary movements or spasms of one or more muscles of the larynx” (vocal folds or voice box) during speech [this is really for other readers who may not know what dysphonia is]
(2) “According to the National Institute on Deafness and Other Communication Disorders, research has revealed increasing evidence that most cases of spasmodic dysphonia are in fact neurogenic or having to do with the nervous system (brain and nerves)”
(3) “is a neurological disorder rather than a disorder of the larynx, and as in other forms of dystonia, interventions at the end organ (i.e. larynx) have not offered a definitive cure, only symptomatic relief”
(4) it mentions a number studies showing psychiatric comorbidity i.e. mood issues seem to be common
(5) “but many investigators into the condition feel that the psychiatric comorbidity associated with voice disorders is a result of the social isolation and anxiety that patients with these conditions feel as a consequence of their difficulty with speech, as opposed to the cause of their dysfluency”
(6) Stress often makes the muscle spasms more severe
I find this all very encouraging for you, plus histamine imbalances are common with pyroluria, stress makes both pyroluria and dysphonia worse, gluten sensitivity can be a trigger for Hashimoto’s and is common with pyroluria (plus it could lead to leaky gut and further deplete nutrients like zinc, B6 etc), low zinc could have affected immunity leading to the long bout of laryngitis. What I’m trying to say is that it’s hard to know what the start is and it’s likely a combination of factors.
It’s wonderful when you put the puzzle pieces together and I would love to hear how you do with the pyroluria protocol (don’t forget evening primrose oil too as it enhances zinc absorption) and how it helps the dysphonia.
Would you mind sharing your pyroluria score now? And did you also do the introvert questionnaire? And finally, were the social anxiety/pyroluria symptoms there before the dysphonia? The wikipedia info implies it’s the dysphonia that leads to social anxiety.
I’m very intrigued by all this and will be digging deeper and learning more. I so appreciate hearing from my community and blog readers, so again, thank you!
Trudy
Thank you Trudy!
I forgot to add that I’m 65 years old. My new doctor did put me on a hormone biest cream with DHEA and testosterone which made me break out like a teenager. After adding 40 mg of zinc glycinate my pimples subsided. I’ll try the primrose oil as well.
As far as the questionnaire, I answered yes to 22 of the questions.
I did not take the introvert questionnaire, because I’ve always been shy. I believe the dysphonia made social interacting worse for me because when I am nervous with strangers, I think comes across through my voice which makes me feel transparent and more nervous. My voice gets tremor like or whispery. When I’m not nervous, my voice will be hoarse or squeaky sometimes because of certain foods or dehydration. People always think I have allergies or a cold. It’s kinda a no win situation. I also know that it’s probably not as bad as I think, we’re always our worst critics!
There may be another piece to the puzzle. I’ll be taking a blood test next month for the MTHFR gene mutation. That may explain a lot of my problems and with the right supplements hopefully clear away some of the debris.
Linda
Hi Linda
Thanks for coming back and letting me know how much your scored and more clarification on your voice. I agree, we are our own worst critics. But I do hope this pyroluria protocol helps so you can feel more comfortable in social settings – with speaking and just in general!
There do seem to be many pyrolurics who have the MTHFR polymorphism. I like 23andme so you also get information on other polymorphisms that can have mood impacts.
Also I’d watch the DHEA and testosterone even if the zinc helped – the pimples are a sign that it’s too much
Trudy
Trudy, you are such a wealth of knowledge and help so many people!
Trudy,
You are clearly in love with what you do!
Imagine how many people you are assisting
by sharing your wealth of knowledge.
Dear Trudy,
Thank you so, so much for this particular post. It inspired me to respond! I am also a professional (classically-trained) musician who has pyroluria and I have appreciated the conversations you have had with Jay and Dave, including both your research and their ongoing feedback. Jay and Dave, this is absolutely helping me, a fellow musician, and thank you for posting about your struggles.
A bit about me: I graduated from a music conservatory two years ago, and returned home to my husband – 1,000 miles away – after four years of study. The stress of being away from home, all alone, and the rigors of pursuing a masters degree and a post-masters-level Performer’s Diploma left me physically & mentally exhausted. Mild depression and anxiety had become constant companions and deep, restorative sleep was impossible to attain. I had no other choice but to rest and recuperate… …except, sleeping, resting and “not-doing” was not helping.
Trudy, I first posted to your website last May. Based upon reading your blog and book, I started pyroluria supplements; I had 23 positives – 17 of them the most common signs – on your pyroluria test (https://www.everywomanover29.com/blog/pyroluria-questionnaire-from-the-antianxiety-food-solution/). Based upon your recommendations, I also read the works of Joan Mathews-Larson, Julia Ross (“The Diet Cure” and “The Mood Cure”) and Dr. William Walsh (“Nutrient Power”); and I am voraciously reading everything about pyroluria I can find on the web. My research has led me to the work of the first doctors to diagnose pyroluria: the orthomolecular doctors Dr. Carl Pfeiffer, Dr. Humphrey Osmond, Dr. Abram Hoffer, Dr. William Walsh. (Here are the free, searchable archives of the Journal of Orthomolecular Medicine: http://orthomolecular.org/library/jom/index.shtml).
Recognizing and treating this (possibly) genetic disorder has had an amazing and positive effect upon my health. The last 9 months has been both enlightening and a struggle as I attempt to reclaim my former levels of energy, concentration, patience, focus, drive and dedicated love which are all needed to pursue a career as a classical performer and music teacher.
I have slowly dosed myself up to 100mg of opti-zinc; 200mg of B6; 50-100mg of P5P; 1,300mg of evening primrose oil; and 10mg of manganese. I also take a multi B vitamin, 50mg 2x a day. Vitamin C and pantothenic acid support adrenal healing. Niacinamide helps with serotonin production. Chromium supports blood sugar stability and fermented cod liver oil gives vitamins A and D3. I avoid copper in supplements & high-copper foods. I jumped in on amino acids and used your book/research to start taking GABA and tryptophan, as well as DLPA. Melatonin and Calmes Forte (homeopathic) have helped with sleep. I also use a lightbox during the winter months.
Nine months before I started treating pyroluria I had started the GAPS (Gut and Psychology Syndrome) diet, and, as well, joined the paleo world, particularly focusing on auto-immune (AIP) paleo diets (like Dr. Natasha Campbell-McBride, Dr. Terry Wahls and Phoenix Healing, http://www.phoenixhelix.com/). So, I was already gluten-free / grain-free and had begun to stabilize my gut with daily ferments, my own 24-hour yogurt, kombucha & water kefir, bone broths and L-glutamine …and added in grass fed/finished red meat, which I absolutely thrive on! But, all this wasn’t enough. Your research on pyroluria and amino acids was an ESSENTIAL piece for me.
You have given me a way to heal – with data which you have tested in your practice and shared with us – thus, power and control. I now understand that having pyroluria means I am not able to handle (expected or unexpected) stress / change well. I now have the tools to heal the effects of the major life stressor of graduating (successfully!) from music school. I can be proactive when planning life changes and flexible, not rigid, when life stress just happens. Thank you!!!
I have had good, steady, slow results. …and also LOTS of struggle and setbacks and “two-feet forward, one-foot back.” Because, in addition to pyroluria, I clearly have auto-immune stuff going on.
Right now, I am exploring the possibility that I have high copper (thanks for pointing out Louise Gittleman’s book, Why Am I Always So Tired?). I had a nonstop headache for the last 8 days and am guessing that high copper or copper dumping *may* be the cause. I also believe my B6 levels are still not high enough. I have positive data that my zinc went up (the taste test was initially like water, now it is almost spit-outable. I gained back my sense of smell & taste, in spades! Yahoo! I don’t need as much HCL cuz I think the zinc is now doing its job in the stomach.)
But, I still cannot recall dreaming, so I am going to try upping the B6. Are there any other clues that will tell me when B6 is reaching normal levels?
Since there are no doctors in my area who have even heard of pyroluria (and I don’t have decent health insurance and all they do is throw meds at you anyway), your dedicated research, writing and sharing the knowledge you gain by working with patients (any by living with pyroluria yourself) is a lifeline. So, again, Trudy, thank you!
So, could I be dumping copper? Or is the fermented cod liver oil a no-no for me cuz its got omega 3s? (I did run out of evening primrose oil…) I will keep on self-testing …and researching …and listening …and reading.
Trudy, it is truly a wilderness out here for those of us with pyroluria!
Let me share two resources I just found that are not generally “out there” in pyroluria posts on the web …and ask one music-related question:
1. This interview is from an orthomolecular doctor who trained with Dr. Carl Pfeiffer and has had a practice for 40+ years, Dr. Philip Bonnet. He, himself, has pyroluria and has had recent success with including homeopathy in his own pyroluria self-treatment. He has a practice near Princeton, NJ: http://www.thehealingpartnership.org/pdf/pyroluria_handout.pdf.
2. This is an excellent overview of the problems with high-copper (which pyrolurics are bound to have with their low-zinc levels):
http://www.coppertoxic.com/
3. My question: Last year, I posted to your blog about stage fright or performance anxiety, which many, many musicians suffer from. Many routinely take beta-blockers pre-performance, but these meds have side effects. You supported the idea of trying GABA which might proactively prevent the effects of performance anxiety, if taken pre-performance. Could we talk more about this here? Jay and Dave, can you pipe in? Do you have stage fright?
Trudy, isn’t this yet another manifestation of the “social anxiety” which plagues people with pyroluria (many of whom are, statistically, artistic / actors / musicians / writers / scientists / creators)? What can be done to help us musicians so instead of fear, fright, high-anxiety, dry mouth, sweaty palms, faulty breathing, heart-racing, I-want-to-curl-up-and-die, stomach-in-knots, WHY did I EVER decide to be a musician??? (backstage), we can welcome an audience (on stage) with the very best and most beautiful, heartfelt, moving, tender, exciting, emotional music which our hours and months (and years) of dedicated practice & rehearsal have created.
Trudy, I would LOVE it if you might consider a blog post on performance anxiety!
Trudy, thanks ever so much!
Laura
Hi Laura
I do recall our earlier “correspondence” via the blog – thanks for coming back and sharing! It’s wonderful to read how all this has had and amazing and positive effect upon your health. I love reading about all your food changes and that you thrive on red meat and ferments – yeah!
Thanks for sharing the link to the searchable archives of the Journal of Orthomolecular Medicine – it’s a wonderful resource. Interestingly I connected with Dr. Philip Bonnet late last year and hope to learn more from him – I am not familiar with his homeopathic approach.
To answer your questions:
(1) Low B6 – you should be remembering your dreams and may need more vitamin B6 – watch for peripheral neuropathy and consider a GGTP test – less than 10 can indicate low vitamin B6.
(2) I would suggest a fatty acid test to see where you are with your omega3s and 6s
(3) Re stage fright – when I read “fear, fright, high-anxiety, dry mouth, sweaty palms, faulty breathing, heart-racing, stomach-in-knots, WHY did I EVER decide to be a musician” I think low serotonin more than low GABA. When I read “I-want-to-curl-up-and-die” I think low catecholamines if there is negativity with it and poor focus/fatigue. Also, getting to complete pyroluria solution will likely be a big factor. I have had one client address this and be able to perform with none of this. Here is a blog I did on fear of public speaking and pyroluria https://www.everywomanover29.com/blog/overcome-your-fear-of-public-speaking/
(4) And yes, copper toxicity may be a factor but since your zinc seems to be good, possibly not
I have 2 questions for you – what instrument do you play? and do you have any joint issues or signs of dystonia, now or before you started the pyroluria protocol?
I wish you all the success you deserve in your career as a classical performer and music teacher – I just love the last paragraph where you describe your love for what you do!
Trudy
Trudy, thank you for pointing me in new directions and for your very helpful feedback!
If you have contact with Dr. Bonner, let us know anything about his homeopathic treatments of pyroluria. Maybe you could interview him or invite him to your next summit? In the interview, cited above, he states:
“My continued study, research and interest in the topic, stems from my personal diagnosis of pyroluria. I have maintained a dosage of about 1500mg. of B6 for years. Only recently, when I expanded my practice to include homeopathic remedies, have I experienced such a remarkable improvement that I now maintain a dosage of 250mg. of B6.”
Exciting information!
The stage fright AKA performance anxiety only occurs for me (and only sometimes) just prior to going onstage to perform (or just before a graded jury) …literally when I am standing in the wings; it does not manifest during private practice or rehearsals. Once I am onstage and have begun, it disappears. It is an immediate, fast-moving and very uncomfortable physical reaction (my stomach is filled with butterflies, heart pumps strongly, breathing is shallow and gets out of my control, dry mouth, sweaty palms…), with concurrent negative thoughts racing through my head (here is doom; the worst is about to happen to me; have I prepared enough?, no, I haven’t; am I going to lose fine motor control of my fingers and at which measure is that likely to happen?; is it too late to get out of this? where is the nearest exit? will I totally embarrass and humiliate myself in front of a roomful of people?)
I experience NO fear of *speaking* in public and am, in fact, quite calm and relaxed when I do so.
I expect I could experiment with pre-concert dosing with either tryptophan or DLPA or GABA and see what happens… (Trudy, where can I locate, is it just DPA not DLPA?)
I will say that performing for a graded jury in a music school setting is WAY worse than performing for the general public. You can, quite literally, fail.
Once I get past any initial stage fright, after I step onstage (it literally starts to melt away after the first few phrases), I really enjoy both my time presenting to people who simply love to hear & experience live music-making and the realtime, active, energy-filled communication happening between me and my music colleagues onstage, next to me!
I can create some of the physical feelings of performance anxiety if I *imagine* an upcoming concert in my head. It always seems to start in my gut with butterflies.
In this age of CDs, MPEGS, i-tunes, instant music downloads, etc., (pre-recorded music which you buy) live music-making (music which you create yourself) is becoming a rarer and rarer commodity in our culture. I support, whole-heartedly, my students who begin this journey, at whatever age – children, young adults, pre-professionals and adults who want a second chance at learning & mastering an instrument – and who develop the courage needed to present their music in realtime to an audience of real people. This is a gift we performers (at whatever level & age) all share with our friends, neighbors, families and our local communities. We truly enrich our community thereby.
My instrument is the family of recorders, so I am a woodwind player. You can understand that my breathing is a crucial part of performance! No, I have never had any joint issues or dystonia, thankfully, knock on wood (so to speak!) However, there is a wealth of physical issues which various types of musicians deal with…
Laura
I’d love to interview Dr Bonner – stay tuned on that one
For your stage fight, I’d do a trail of tryptophan (more of the in the head anxiety) and GABA (more of the physical anxiety). DLPA may be too stimulating and based on your description it doesn’t sound like DPA would be needed.
Glad to hear you have no dystonia
Trudy,
An addendum to my post, above…
Musicians with pyroluria and metal imbalances, take note. Dr. William J. Walsh (“Nutrient Power” and orthomolecular doctor/researcher who researches & treats pyroluria) was the leader of the team which had the privilege to be allowed to test Beethoven’s bones to try to determine why he was ill, why he went deaf and if there was metal toxicity. See: Beethoven Research Summary, W. J. Walsh PhD (Director of the Beethoven Research Project): http://www.walshinstitute.org/uploads/1/7/9/9/17997321/beethoven_research_summary.pdf.
There is a riveting story about Beethoven’s struggles with illness, disability & deafness and the subsequent 20th c. testing of his (verified) hair in a book called “Beethoven’s Hair” by Russell Martin. Beethoven was only 56 when he died. It was his wish that his remains be used to figure out why he had such terrible physical struggles, illnesses and had lost his hearing …so that he could save other people from his pain. That wish was granted in 1995, 167 years after Beethoven’s death, by hair analysis and confirmed – seven years later by Dr. Walsh and his team – by bone analysis.
It was, indeed, metal poisoning. (I won’t spoil Martin’s fascinating story for you by revealing which metal.)
Beethoven wrote about his pain & despair in the Heiligenstadt Testament:
“It [the Heiligenstadt Testament] reflects his despair over his increasing deafness and his desire to overcome his physical and emotional ailments to complete his artistic destiny. Beethoven kept the document hidden among his private papers for the rest of his life, and probably never showed it to anyone. It was discovered in March 1827, after Beethoven’s death, by Anton Schindler and Stephan von Breuning, who had it published the following October.”
http://en.wikipedia.org/wiki/Heiligenstadt_Testament
Here is the beginning of Beethoven’s “Heiligenstadt Testament,” written to his two brothers, wherein he documents his despair over (what we now know was heavy metal contamination) his illnesses and the probability of his losing his hearing, the one faculty a musician cannot do without.
“…O you men who think or say that I am malevolent, stubborn or misanthropic, how greatly do you wrong me, you do not know the secret causes of my seeming, from childhood my heart and mind were disposed to the gentle feelings of good will, I was even ever eager to accomplish great deeds, but reflect now that for six years I have been a hopeless case, aggravated by senseless physicians, cheated year after year in the hope of improvement, finally compelled to face the prospect of a lasting malady (whose cure will take years or, perhaps, be impossible), born with an ardent and lively temperament, even susceptible to the diversions of society, I was compelled early to isolate myself, to live in loneliness…” Ludwig van Beethoven
(English Translation: http://en.wikisource.org/wiki/Heiligenstadt_Testament)
Now, take the time to go and listen to his ninth symphony (and its 4th movement, the “Ode to Joy”)…whose premiere ended with wild audience acclaim and with Beethoven, present and onstage, being fully deaf, and unaware at its conclusion that, behind his back, the audience clapped and stood and honored him.
Beethoven’s granted wish – to save others from his pain – is actively manifesting in the lives of musicians who struggle with and heal pyroluria & metal issues and who read his words, who listen to his music and who learn from his struggles …and follow – and implement in their daily lives – the dedicated work of people like William Walsh, Joan Mathews-Larson, Louise Gittleman, Julia Ross and Trudy Scott.
Sustaining hope is crucial to this process, so thanks for the hope, Trudy!
Laura
Laura
This is so interesting – thanks for sharing! I wonder where his lead exposure came from? How sad that he suffered so much.
Thanks for including me in the line-up with William Walsh, Joan Mathews-Larson, Ann Louise Gittleman and Julia Ross. They are all heroes and mentors of mine and it’s an honor!
Trudy
I went back and re-read Russell Martin’s 2000 book, “Beethoven’s Hair.” The *likely/possible* (not conclusive) source of his illnesses was stated as high amounts of lead. It IS conclusive that testing revealed he had “…forty times the contemporary norm.” (p. 239) It is *possible* that he had one toxic exposure to lead when he was 27 (the age at which he became symptomatic). The author additionally states that a review of Beethoven’s personal belongings – which were sold after his death – showed that he owned dishes (earthenware) that likely had lead glazing, his china, as well; “tin” and “iron” pots were also a possible cause (p. 238). Beethoven had turned to drinking wine to ease his pains, and it is known that some wine (especially cheap wine), at the time, had lead added to it to relieve its bitterness. (One wonders if he drank his (fermented, acidic) wine from lead crystal, which – even today, we are warned – can release lead.) Water pipes were soldered with lead at the time; but the author states that, “It seems unlikely, given his many residences, that lead-soldered water pipes poisoned Beethoven severely yet somehow spared the remaining citizens of Vienna…” (p. 238).
Russell Martin states that Dr. William J. Walsh was hired by the owners of Beethoven’s hair – Ira brillian and Che Guevera (not the activist Che Guevera) – to test it, after an initial doctor, Dr. Werner Baumgartner, had completed his testing. Walsh was hired because “…[he] had become the leading expert on hair analysis in the United States…” (p.218) and he had “…been able to establish the world’s first standards for trace-metal concentration in human hair, as well as reference normals based upon a 100,000-sample database. In a collaboration begun in 1982 with Carl Pfeiffer … [an] expert on biochemical imbalances … Walsh had become increasingly convinced that such deficits and overloads could be successfully treated with minerals, vitamins, and amino acids.” (p.220)
The testing team and the hair owners agreed that they could not positively identify the source of this lead contamination nor could they state that this was, conclusively, the cause of Beethoven’s deafness and severe illnesses. However, they met their goal of adding new information to that already known about Beethoven’s life, illnesses and death.
It was Walsh who recommended the testing of Beethoven’s bones, which, he felt, would scientifically serve to support the findings of the hair analyses. Hence, the 2005 Walsh team report which I cited, in the post above.
Searching IMDB revealed that a TV movie was made based upon Martin’s book called, of course, “Beethoven’s Hair,” with Walsh starring “as himself.” I have not seen it and I cannot locate a copy of this movie at the library, on Netflix or Amazon.
In reviewing the symptoms which Beethoven himself documented in his Heiligenstadt Testament, as well as reading original source materials (medical as well as personal) from the 19th century, quoted in Martin’s book, I was instantly drawn to do a comparison between his symptoms and your list of pyroluria symptoms. There are many similarities! Beethoven’s Heiligenstadt Testament statement that he was “…compelled early to isolate [himself], to live in loneliness…”, mirrors reports about the secluded lives of both Emily Dickenson and Charles Darwin one reads about in pyroluria articles & research (and who likely had low zinc/B6).
Beethoven lived with his debilitating & ever-worsening symptoms for close to 30 years …and was still composing music very close to the time of his death!
Trudy, if you ever get a free weekend, read this book! It is a riveting mystery & adventure story, as we follow the ownership of this lock of hair over the decades and centuries. How did it end up from Beethoven’s tousled and famous mop in 19th c. Vienna, to a 20th/21st c. lab in Illinois? (Oh, so close to the (albeit fictional) adventurer Indiana Jones’ home state of …Indiana!) How did it end up in Denmark …survive the Nazi war years and an Atlantic Ocean crossing? Why is Sotheby’s involved? How did Walsh and the team locate some of Beethoven’s bones? …and how do we KNOW that they are Beethoven’s bones?
Walsh’s December 2005 report, “Elevated Lead in Beethoven Bone Fragments” states: “…in a letter to a friend, he expressed the wish that after his death, researchers would use his remains to help determine the cause of his illness so that others would not have to suffer as he did.” I dearly want to know more! Which friend? What else did he confide in this letter? Are there other letters in which he talks about his disabilities and his need to know the causes? Can we know more about the deep human compassion his wish expresses: to relieve the pain of others? What are Walsh’s emotions as one of the researchers who granted Beethoven’s wish?
How amazing it is that Beethoven is, in a fundamental way, the creator of this hair & bone analysis journey! Here is a man whom we know considered ending his own life …and who did not; he chose to suffer with ill health for the sake of his art. He had inner tension, he suffered with social anxiety, he had major digestive issues, he had mood disorders. Yet he utterly changed the course of western music and left us all a monumental opus of music to explore.
Would that he could know the results of this research.
Your training and experience would assuredly cause you to see many parallels between the health struggles Beethoven had and those of your patients/clients. Lead and zinc/copper are certainly different metals, obviously, but symptomatically this incredible musician struggled with many of the same autoimmune / metal imbalances with which many with pyroluria struggle today.
Reflection upon Martin’s / Brilliant’s / Guevera’s / Baumgertner’s / Walsh’s, et. al. research has made me all the more convinced that I should review the copper content of the water I drink and bathe in; the ingredients in the glazing of my crockpot; the contents of the vitamins I take that may be produced in China and the lead content of “organic” vegetables I buy from our co-op which are grown in China. Beethoven may have been poisoned by the kitchen dishes he used every day of his life, by food & drink that exposed him to poison(s) his body could not detoxify.
Of course, in the early 19th c. they did not recognize lead poisoning nor could they identify sources of contamination. 167 yeas after his death, Baumgartener, Walsh and the owners of Beethoven’s hair, Ira Brilliant and Che Guevera were able to supply a viable reason for his illnesses. Is it possible that high lead caused him to go deaf? Yes. But Beethoven could not avail himself of a healing protocol, as is provided by your research and passionate dedication, and that of others in the field.
I am so thankful that Russell Martin took the time to research and write down this story! (Note: I used the Broadway Books paperback edition from 2001 entitled “Beethoven’s Hair” as a source.) I first read this book as a diversion from music studies & practice while going through my masters program. Re-reading it today, knowing now, as I did not know then, that I may have pyroluria and issues with metal imbalances (zinc/copper) has been enlightening, to say the least.
Now I am going to have to read this book – sounds so fascinating! I’m also so interested in metal imbalances
Poor poor Beethoven. It’s quite amazing what he was able to achieve despite all this!
Very interesting. I have a friend with this disorder, and plan to send her this article. Thanks!
Thanks Miranda – I hope it’s helpful for her. I appreciate you sharing it!
Good sleuthing work Trudy! 🙂
Good word Lauchlan: “sleuthing” – I love to dig and make connections and am so pleased I did in this instance !
Trudy,
Very informative. I’m going to share this with some of my musician friends. I know they will appreciate it.
Write on!~
Lisa
Thanks Lisa – I appreciate it!
Glad the regime worked in reducing symptoms.
Dear Trudy,
I live in Toronto, Canada and I’ve found that are few integrative psychiatrists in this area. My life has been dotted with prolonged periods of depression, anxiety and panic. Through testing, I was found to be an undermethylator with high histamine and low zinc levels.
I’d like to consult with a doctor on the east coast of the U.S. (due to relatively short flight times).
I hope you’re in a position to recommend or at least supply a short list of integrative psychiatrists.
Last year I was ready to fly down to the Boston area for a visit with Dr. James Greenblatt but was informed that he was no longer concentrating on private practice.
Lately, I’ve been intrigued with all that I’ve read about Dr. Philip Bonnet and I’m considering arranging an appointment with him.
Trudy, I would be grateful for any insight or direction you can offer!
Sincerely,
Bob N.
Bob
I have 2 great practitioners for you in the Toronto area – Dr. John Dempster and Dr. Jonathan Prousky. I’ve interviewed both on prior Anxiety Summits – https://www.everywomanover29.com/blog/anxiety-heavy-metals-chelation-mercury-lead/ and https://www.everywomanover29.com/blog/anxiety-summit-tapering-psychiatric-drugs-dont-ruin-life/
Can’t wait to see what it does for me. I have played banjo since I was 12 and I started having my index “picking” finger get dystonia. My father also had the same problem. I just found out today I have borderline pylori (14.5)
I can’t wait to see if it resolves and I can play Foggy Mtn. Breakdown at full speed again!
Patti
I look forward to hearing how you do! Keep in mind that I reply more on symptoms that urine pyroluria results.
I’m curious how you found this article!?
Hi Trudy,
My name is Megan. I’m a singer songwriter living in San Diego. I just had a couple questions for you regarding your experience with pyroluria and dystonia. I was diagnosed with Spasmodic Dysphonia 2 years ago and it has greatly affected my career so I’m trying to find a way to heal. I saw your YouTube videos and was very interested! When you had that vagus nerve issue it reminded me a lot of what happens to me with dysphonia! The words get cut off and it seems like a diaphragm spasm almost. I also have hoarseness, and throat tightness. A gluten free diet has helped but I still feel like my words speaking and singing are strained and sometimes much worse than others. The gaba helps me speak semi normally for a little bit. I am looking for a long term solution for this and wondering if pyroluria May be a culprit so I took the urine test yesterday. We will see. I also have chronic low body temperature. A lady who is now my friend had SD and it went away 100% when she was able to raise her body temperature to normal using T3. Any help on this issue would be amazing. Really inspired by your work!
Megan
I’m sorry to hear about your issues with your voice. It’s encouraging to hear a gluten-free diet helps – keep in mind, that many people suffer nutritional deficiencies as a result of eating gluten so addressing these after going gluten-free is also important. This is where addressing pyroluria may come into play especially with the connection we’re seeing between pyroluria and dystonia. Keep in mind that I use the pyroluria questionnaire and response to supplements as the testing can be false negative.
Good to hear about your friend who addressed her thyroid issues – hoarseness, and throat tightness and low body temperature (plus the gluten issues) are all clues to look at thyroid health. The zinc from the pyroluria protocol helps support the thyroid too and vitamin B6 reduces inflammation.
I always build on what works with my clients so if GABA helps a little we increase to see if we can get better results (especially if physical anxiety is also an issue). Did you see the blog on my story? As well as the vagus nerve breathing exercises I also used nutritional support – more here https://www.everywomanover29.com/blog/vagus-nerve-rehab-gaba/
Thank you for your reply! I don’t have any anxiety. I did as a teenager and it turned out to be a b deficiency. Although I don’t remember it may have been b 6. But I have good, vivid dream recall now. I would just love to be able to sing freely again. All of my thyroid blood work came back normal even antibody tests but my body temp still doesn’t get up to 98 degrees. So weird!
Hello!
So I was wondering if my Zinc and B6 levels are tested great in my blood work, if I could still have pyroluria? I am a little confused though because my Iron levels are high. Not sure what this means.
Megan
Zinc and B6 in blood are not reliable. High iron does need to be addressed.
I was diagnosed with pyroluria 20 or so years ago, moderate case (mauve score 28.) I still take the zinc and B6, and if I don’t, the symptoms I associate with the pyroluria return, light sensitivity being the most easily discerned.
I have developed task-specific focal dystonia three separate times that I know of; first in 1969 as a college violin major (that stopped that pursuit; they did not know what it was at that time.) Secondly I developed it when I tried to learn how to play tennis (could not get my stroke smooth, ball went everywhere.) Thirdly after I took up a brass instrument, got to be quite competent, but at the 11 year mark developed embouchure dystonia. The embouchure dystonia developed *after* being on the pyroluria treatment, and I have never been able to overcome it even with expert help with retraining.
So I do not agree that pyroluria is a cause of musician’s dystonia. I think the cause is a way of learning/doing of physical tasks, that is simply the way some people approach learning and doing physical tasks, plus a mindset of “overcoming physical problems with extreme continuous effort.” That effort works well with intellectual tasks, at which I am extremely good, but does not work well with physical tasks. I believe those who overcome musician’s dystonias are those who are able to change their mental approach.
Mystic Tuba
Thanks for sharing your experiences with dystonia and pyroluria, and contributing to the discussion. What is interesting is 3 instances of dystonia and confirmed pyroluria so there is the correlation. I recently came across this paper https://clinicalmovementdisorders.biomedcentral.com/articles/10.1186/s40734-016-0047-6 so it may be worth exploring low catchecolamines and low GABA too.
Apologies for the delay on your comment approval and my response. We had a computer glitch where a large number of comments were hidden from view in a spam folder. It mostly affected new folks who were commenting for the first time but it’s hopefully resolved now.