In the July 2013 article, “How I Found My Long-Lost Energy,” ProHealth’s Fibromyalgia Editor, Karen Lee Richards, shared her dramatic experience taking high-dose B-1. Since the publication of the article, readers have expressed interest in what high-dose B-1 could do for them.
In response to reader inquiries, last month ProHealth conducted a survey on high-dose B-1.
You can view the results here.
Out of 50 respondents, 81% had been diagnosed with Fibromyalgia, and 45% with ME/CFS. Of these, the vast majority had been ill more than six years, with 30% reporting illness of more than 20 years. Most patients (68%) rated themselves as moderately/severely to moderately ill (3-5 on a scale of 1-10).
Roughly a third of the respondents had just begun to take B-1 (less than a week). But at the other end of the spectrum an equal number had taken B-1 for more than 6 months, which means for that group, at least, benefits were felt.
Surprisingly, very few of the respondents had taken high-dose B-1. The majority (68%) either were currently taking, or had taken, 500 mg/day or less. (High-dose B-1 refers to a therapeutic dose of more than 600 mg, and can rise to 1500 mg/day.) Only 12 respondents reported taking more than 500 mg/day.
For those who had tried high-dose B-1, the results were mixed. As with most other treatments, more than 50% reported feeling no effect. Twenty-three patients reported mild benefits, and seventeen patients reported substantial benefits for fatigue, stamina, pain and other symptoms. One patient with chronic Lyme said that high-dose B-1 had put her into remission. Others reported improvements in cognition, digestive problems, and blood sugar swings.
Some patients, however, reported feeling much worse. Eleven patients reported side effects of nausea (at 2000 mg/day), insomnia, flu-like symptoms, migraine, feeling “hyped,” eczema, and morning stiffness. Four patients reported that lowering the dosage helped reduce side effects, but the majority of those who experienced side effects did not try lowering the dose.
As to their overall rating of high-dose B-1, 17 respondents said that their experience was “excellent” and that they would continue taking it indefinitely. Eleven said their experience was “good” and planned on taking it from time to time. Nine respondents said they would never try it again.