Prelude
In writing my review and recommendation for Daphne Bryan's new book below, I realized that some scene setting was required in order to underscore the value and importance of her work for the community. There is a need to fill in some of the background, both in terms of the current state of medical treatment of Parkinson's Disease, and also in terms of the position where I am personally coming from.
Once upon on time, I tried just about every supplement under the sun, desperately seeking relief from my physical symptoms. These days, I have all but stopped looking for miracle cures in the form of chemicals, for two major reasons.
Firstly, my research into, and real world lived experience of, Idiopathic Parkinson's Disease lead me to the conclusion that no permanent chemical cure is ever going to be possible. Indeed, I have come to understand that, even if a drug or supplement was found tomorrow, which relieved all of the symptoms, it would just be "papering over the cracks", because it would not be addressing the real root causes.
Unless and until we address those root causes, that, to my mind, involves changing much of the ways we attend and present to the world which make us vulnerable and susceptible to disease in the first place, we will just eventually fall back into illness and disease, perhaps with a different disease label, and new and old symptoms will eventually once again emerge.
That is, I believe that the real root causes lie in habitual patterns of living in defensive nervous system, and left-brain hemisphere overactivated, states of being. Ultimately, therefore, change is the only real possibility for a long term “cure”. Thus, I don't believe that nutritional deficits are causal of disease, but instead that a lifetime of living in these defensive states leads to depletion of various life-giving compounds in our brains and bodies.
Secondly, despite trying everything, I have never found any supplement that actually "worked" for me, and indeed, many that made my physical and mental symptoms even worse. The one exception, like for many people with PD diagnosis, being l-dopa supplementation, i.e. orally taking this chemical building block of dopamine.
Both the pharmaceutical grade, synthetic l-dopa, and the naturally occurring l-dopa from concentrated mucuna pruriens beans "work" for me: these two forms are exactly equivalent, in my experience, in that I find no difference, including of the side-effect profiles, between one 125 mg capsule of Madopar (100 mg l-dopa), a pharmaceutical grade version, or one of 250 mg Biovea's Mucuna Dopa naturally sourced capsules (40%, and hence also 100 mg, l-dopa).
Thus l-dopa is the only "natural" substance I've ever found that provides relief from my symptoms, at least temporarily, but at a significant cost: like all addictive substances, and what can be more addictive than the precusor of dopamine itself, the body quickly becomes acclimatized to it, meaning more and more is needed to bring any relief.
The mechanism for this acclimatization is likely to be the sequestering of the dopamine cell receptors, away from the surface and into the body of neurons, making the brain less and less sensitive to dopamine, meaning more and more is needed - see my article about the book "Dopamine Nation" by Dr Anna Lembke. Until, finally, so much is needed, that it comes with very serious side effects such as uncontrolled large flailing movements (dyskinesia), hallucinations, and shorter amounts of time for relief, followed each time by a bout of worsened symptoms.
Thus, as it stands, l-dopa is only a temporary fix, which ends up causing more problems than it solves. L-dopa does not stop or slow the progression of the disease, and evidence indicates it can actually accelerate it. Indeed, like anything, in high enough doses it is toxic, and I myself ended up in hospital in part due to over-dosing on medically prescribed dosages.
Yet, doctors currently have little choice in prescribing this potentially toxic, and very addictive substance, because since it emerged since the 1960s as a treatment for PD, no better pharmacological alternative has yet been found. Indeed, l-dopa supplementation remains the "Gold Standard" of medical interventions.
This poor outcome is why people with PD desperately continue to search for supplements or natural solutions, either for replacing the need for l-dopa, or to reduce its side-effects, or just to make it work better.
Included in the supplements I tried for this, was vitamin B1, or Thiamine. I had been encouraged by stories of people with PD getting significant symptom relief from high dose B1 supplementation, including from friends, first hand. These anecdotes included stories of helping the l-dopa work better, or producing less side-effects, and the removal of the need to continually up the dose of l-dopa as the years progressed.
Indeed, for some years, the PD internet groups have been abuzz with people claiming significant benefits from a "protocol" called High Dose Thiamine supplementation, popularized by an Italian doctor, Dr Costantini, who had first noted tremendous benefits from thiamine injections in his PD patients. To this day, I am frequently asked if I am aware of HDT, and whether I've tried it.
When I tried thiamine as a supplement before, alas, as usual for me it failed. If anything, I would say it made my symptoms worse, and so my hopes once more were dashed. Yet given all the first hand success stories from fellow people with PD I was receiving, perhaps I had tried the wrong dose, or the wrong type, or brand, of B1?
Yet, when I started to investigate the "protocol", and all the anecdotes, more deeply, it was a big mess. There seemed no one-size fits all solution, and reported results using identical regimes varied from significant symptom reduction for some, to worsening for others. This situation had been made worse by death of Dr C. in 2020, as much of his received wisdom, learnings and knowledge of HDT, had died with him. In particular, there was now no-one medically qualified to guide individuals on their own journey with his protocol.
Review of “Parkinson's and the B1 Therapy”, by Daphne Bryan.
What was needed was for someone to gather and review all the research done on HDT for PD so far, collect all the anecdotes of what has and hasn’t worked for individuals with PD, and to resurrect as much of Dr C.'s knowledge, experiences and wisdom as possible. Then to pull it together and come up with a working plan or a guidebook for other people with PD to follow in order to try to optimize HDT the potential benefits of for themselves.
This is precisely what Daphne Bryan, author of the previous book “Music as Medicine, particularly in Parkinson’s” has achieved in this short book.
Daphne follows Dr C.’s story, and covers the clinical research which has been done so far. As part of this, she explains why HDT still isn’t on the radar of the mainstream medical narrative, and how surprised the good doctor and his team were at not being able to get the funding for double blind randomized clinical trials for this very promising research.
Unfortunately, getting funding for non-patentable, cheap therapeutics is very difficult, as there is no profit in it, while University scientists can’t make a name themselves nor advance their careers from studying natural therapeutics, and may even be actively discouraged from pursuing such ideas.
Nevertheless, Dr C.’s team are still trying to fund robust clinical trials, now via a gofundme campaign, and Daphne gives details of how to support this.
Daphne then explains about the different types of vitamin B1, and the different delivery mechanisms (injections, oral, sublingual) and the pros and cons of each. She covers why the need for the “High Dose” is mainly the case when taking oral supplements, due to the poor absorption/bioavailability of B1 through the gut. This is particularly the case for people with PD, who tend to have significantly disrupted gastric and digestive functions.
The injection and sublingual versions actually require a lot less of a dose. Detailed instructions of how to optimally take the sublingual version, which Daphne favours, are also given.
Daphne goes on to explain how there is currently no one size fits all solution, and how what works for one person may not work for another. Indeed, she explains there is not really a “protocol” per se to follow currently, but what she provides is road map for individuals to trial HDT for PD.
Starting slowly, being patient, heeding the warning signs, stopping and restarting if necessary, and so forth, in order to seek to optimize the potential benefits. She explains that, as well as underdosing (no noticeable effects), overdosing is also significant an issue, which may manifest as a temporary worsening of PD like symptoms (perhaps due to depletion of magnesium?). More of a good thing is not always better.
When overdosing occurs, the symptoms lessen again by stopping for a couple of weeks, and one can try again at a lower dose.
Daphne also underlines the need to make “before and after” videos, because the benefits of the therapy, once optimized, may be profound, but only accrue slowly (over some months), and so people tend not to notice these changes in themselves. Only by revisiting the “before” pictures do they realize how far they have come.
Following Dr C.’s teaching, Daphne makes clear the point that HDT is by no means a cure, miracle or otherwise, and does not even replace the need for l-dopa supplementation (PD medication).
Indeed, Dr C. often prescribed l-dopa alongside thiamine injections. The point of the therapy is that it supports the efficacy of other interventions, prevents or postpones the need for ever increasing amounts of l-dopa, and decreases the side effects such as dyskinesia. Indeed, optimized HDT seems to halt the progression of the disease, and also stops the need for ever increasing amounts of l-dopa.
Daphne then provides a collection of anecdotal stories from other people with PD who have tried HDT, who explain what did and didn’t work for them, what process they followed, and any benefits they noticed. To my mind, such real world, lived experiences of people with PD themselves, is as valuable as any clinical trial.
From my perspective, as someone who aims to ultimately fully recover and reduce the need for any l-dopa, it would seem to me that optimized HDT may provide a window of opportunity for those of us who are already on high levels of l-dopa, in order to reduce the side effects and the drug wear off times, and hence allow the space to put other interventions and therapies in place for progressive symptom reduction.