The B1 therapy, also known as the High Dose Thiamine (HDT) therapy, potentially offers huge benefits for the person with Parkinson’s. With this therapy, symptoms can improve to the extent that people return to walking with a normal gait, handwriting can improve, the ability to smile returns as rigidity reduces, constipation becomes a thing of the past, mood lifts and most often fatigue is reduced and a feeling of renewed energy is felt, to highlight just a few of the benefits people have found. Of possibly even greater importance, through experiencing and maintaining these benefits over time, people report that the usual progression of Parkinson’s seems to be halted or at least slowed significantly while on the B1 therapy. There is, however, one small problem. A Parkinson’s patient needs to find the right dose for him/her to experience the benefits, and this dose varies from person to person.
I had first heard of the work of Dr Antonio Costantini, when a friend sent me an article in 2017, seven years after my own Parkinson’s diagnosis and four years after Costantini and colleagues had published their first case-study research article on HDT for Parkinson’s patients (Costantini et al 2013). Both this and a later research article, (Costantini et al 2015) with a hugely increased number of participants and over a much longer time period, went unnoticed and were largely ignored by medical communities. Dr Costantini, who sadly died in 2020, was a neurologist, not a researcher. He worked in a clinic not a research organisation. He tried to involve universities without success. The findings he was reporting, even with video documentation, appeared too good to be believed. He felt strongly, that to attract the attention of medical professionals, a rigorous, double blind, placebo-controlled study would be necessary. At the time of writing, the funding for such a study is still being sought.
At the time I heard of the B1 therapy, there was an increasing number of people with Parkinson’s who, like me, were keen to achieve the benefits which this therapy potentially offered. Their doctors, however, generally had no knowledge of the therapy and were suspicious of a therapy for which there was no proven placebo-controlled study. There were misconceptions too, including the belief that if there was no B1 deficiency, B1 was not needed. However, the ‘medicine’ for this therapy was both easily available, inexpensive, and reportedly safe. So, with no help possible from patient’s doctors, many people with Parkinson’s decided to try the therapy on their own.
It soon became clear that the B1 dose which triggered symptom improvements was very person specific. Dr Costantini suggested that age, gender, weight, duration of the disease and severity of symptoms might be relevant, but there may be other factors involved, currently unknown. If the dose is too low, then the patient will see no benefits, and if the dose is too high, there will be a temporary worsening of symptoms. Parkinson’s patients who were keen to use this therapy, therefore, had to search for their ‘sweet spot’, which lay somewhere between ‘no reaction’ and ‘over reaction’.
After personally experiencing the significant symptom improvements which this therapy could produce, I recommended the therapy to my Parkinson’s friends and helped them find their ‘right dose’. I also started to answer questions on a Parkinson’s forum and then began to make suggestions to members of a Facebook group. It soon became clear what areas people were having problems with, as I seemed to be answering similar questions day after day. This led me to the idea of writing a protocol manual, a guide, simply and clearly written for the people who were trying to find success with the therapy, the Parkinson’s patients themselves.
I had written a book before, so was confident I could complete the task. I was very aware, however, that I would be talking about a health problem, but was not a trained health professional. However, my job as author of this manual, would be mainly to report on Dr Costantini’s therapy and his protocol. Actually, as I would be explaining things predominantly to Parkinson’s patients most of whom would be non-medical, I could see certain advantages in being a lay person, and also being one who had Parkinson’s and who had experience of the therapy.
I decided that the protocol would need to be the central chapter as it was the main reason for writing the book. People needed a plan to take them through the trialling and give them a better chance of finding their ‘sweet spot’. Helping people on Facebook had given me a clear view of where people could go wrong. In fact everyone who sought my advice during that time was actually moulding and shaping the contents of the protocol chapter.
A chapter reviewing the available research was also of great importance. Many lay people were keen to read research articles to understand why this therapy worked and the chapter would also be useful to show to doctors, when patients discussed the therapy with them.
As a society we enjoy learning about the experiences of others, so I included a chapter containing people’s success stories. I hoped that it would provide an opportunity for readers to gain information, reassurance, guidance, ideas, inspiration, and lots more.
After four months of researching and writing, the English version of the book was published in March 2022. Currently the book has been translated into French, Dutch, Spanish, Italian, German and Portuguese, with a further four languages being translated. A professional audio narrator has also recorded an audiobook in English. The profits from the Royalties from book sales are being donated to fund future research and we are indebted to the translators, their proof-readers, and the audio narrator who have each generously given of their time and expertise for no payment.
The book was written with Parkinson’s patients in mind. This website, however, is directed towards the health professional. It aims to supply, in one place, detailed information about all aspects of the HDT therapy and provide answers to many of the technical questions a medical professional might ask. Our hope is that, through this website, more health professionals will hear of and understand the principles of HDT therapy.
References
Costantini A, Pala M I, Compagnoni L, Colangeli M. (2013) Case report: High-dose thiamine as initial treatment for Parkinson’s disease. BMJ Case Reports. Published online Aug 28 2013. Doi 10.1136/bcr-2013-009289
Costantini A, Pala M I, Grossi E, Mondonico S, Cardelli L E, Jenner C, Proietti S, Colangeli M, Fancellu R. (2015) Long-term treatment with High Dose Thiamine in Parkinson’s Disease: An open-label pilot study. The Journal of Alternative and Complementary Medicine. Vol 21. Number 1222, 2015, pp740-747 Doi. 10.1089/acm.2014.0353
I had first heard of the work of Dr Antonio Costantini, when a friend sent me an article in 2017, seven years after my own Parkinson’s diagnosis and four years after Costantini and colleagues had published their first case-study research article on HDT for Parkinson’s patients (Costantini et al 2013). Both this and a later research article, (Costantini et al 2015) with a hugely increased number of participants and over a much longer time period, went unnoticed and were largely ignored by medical communities. Dr Costantini, who sadly died in 2020, was a neurologist, not a researcher. He worked in a clinic not a research organisation. He tried to involve universities without success. The findings he was reporting, even with video documentation, appeared too good to be believed. He felt strongly, that to attract the attention of medical professionals, a rigorous, double blind, placebo-controlled study would be necessary. At the time of writing, the funding for such a study is still being sought.
At the time I heard of the B1 therapy, there was an increasing number of people with Parkinson’s who, like me, were keen to achieve the benefits which this therapy potentially offered. Their doctors, however, generally had no knowledge of the therapy and were suspicious of a therapy for which there was no proven placebo-controlled study. There were misconceptions too, including the belief that if there was no B1 deficiency, B1 was not needed. However, the ‘medicine’ for this therapy was both easily available, inexpensive, and reportedly safe. So, with no help possible from patient’s doctors, many people with Parkinson’s decided to try the therapy on their own.
It soon became clear that the B1 dose which triggered symptom improvements was very person specific. Dr Costantini suggested that age, gender, weight, duration of the disease and severity of symptoms might be relevant, but there may be other factors involved, currently unknown. If the dose is too low, then the patient will see no benefits, and if the dose is too high, there will be a temporary worsening of symptoms. Parkinson’s patients who were keen to use this therapy, therefore, had to search for their ‘sweet spot’, which lay somewhere between ‘no reaction’ and ‘over reaction’.
After personally experiencing the significant symptom improvements which this therapy could produce, I recommended the therapy to my Parkinson’s friends and helped them find their ‘right dose’. I also started to answer questions on a Parkinson’s forum and then began to make suggestions to members of a Facebook group. It soon became clear what areas people were having problems with, as I seemed to be answering similar questions day after day. This led me to the idea of writing a protocol manual, a guide, simply and clearly written for the people who were trying to find success with the therapy, the Parkinson’s patients themselves.
I had written a book before, so was confident I could complete the task. I was very aware, however, that I would be talking about a health problem, but was not a trained health professional. However, my job as author of this manual, would be mainly to report on Dr Costantini’s therapy and his protocol. Actually, as I would be explaining things predominantly to Parkinson’s patients most of whom would be non-medical, I could see certain advantages in being a lay person, and also being one who had Parkinson’s and who had experience of the therapy.
I decided that the protocol would need to be the central chapter as it was the main reason for writing the book. People needed a plan to take them through the trialling and give them a better chance of finding their ‘sweet spot’. Helping people on Facebook had given me a clear view of where people could go wrong. In fact everyone who sought my advice during that time was actually moulding and shaping the contents of the protocol chapter.
A chapter reviewing the available research was also of great importance. Many lay people were keen to read research articles to understand why this therapy worked and the chapter would also be useful to show to doctors, when patients discussed the therapy with them.
As a society we enjoy learning about the experiences of others, so I included a chapter containing people’s success stories. I hoped that it would provide an opportunity for readers to gain information, reassurance, guidance, ideas, inspiration, and lots more.
After four months of researching and writing, the English version of the book was published in March 2022. Currently the book has been translated into French, Dutch, Spanish, Italian, German and Portuguese, with a further four languages being translated. A professional audio narrator has also recorded an audiobook in English. The profits from the Royalties from book sales are being donated to fund future research and we are indebted to the translators, their proof-readers, and the audio narrator who have each generously given of their time and expertise for no payment.
The book was written with Parkinson’s patients in mind. This website, however, is directed towards the health professional. It aims to supply, in one place, detailed information about all aspects of the HDT therapy and provide answers to many of the technical questions a medical professional might ask. Our hope is that, through this website, more health professionals will hear of and understand the principles of HDT therapy.
References
Costantini A, Pala M I, Compagnoni L, Colangeli M. (2013) Case report: High-dose thiamine as initial treatment for Parkinson’s disease. BMJ Case Reports. Published online Aug 28 2013. Doi 10.1136/bcr-2013-009289
Costantini A, Pala M I, Grossi E, Mondonico S, Cardelli L E, Jenner C, Proietti S, Colangeli M, Fancellu R. (2015) Long-term treatment with High Dose Thiamine in Parkinson’s Disease: An open-label pilot study. The Journal of Alternative and Complementary Medicine. Vol 21. Number 1222, 2015, pp740-747 Doi. 10.1089/acm.2014.0353
