Caudwell Lyme conducted a small survey in 2016, on Lyme patients’ spending on nutritional supplements and herbal medications, in collaboration with Britain’s largest patient support group, Lyme Disease UK.
Please note: The information and contents of this report may not be reproduced or quoted without acknowledging Caudwell LymeCo charity as the source. The responses reported come directly from survey respondents and should not be regarded as a statement of Caudwell LymeCo Charity’s own opinions.
The average UK Lyme disease patient spends around £100 to £250 every month on nutritional supplements and herbal remedies, our small patient survey has found, despite the fact that about half of all patients are unable to afford any supplements at all.
Many long-term Lyme patients cannot afford private medical care, and do not feel that the medication they receive from their NHS doctors address all their symptoms, or the root cause of them. Others are helped by alternative practitioners who treat them with traditional and newer herbal medicines instead of prescription pharmaceuticals, often alongside nutritional supplementation. Therefore, we were interested to learn how much patients spend on alternative support for their general health and to tackle their infections.
The survey was conducted via social media, and 152 people responded. Respondents were recruited via the Lyme Disease UK online patient support group.
More nutrients than herbs
The survey found that more patients take nutritional supplements than herbs. In fact, only 42% of our survey respondents said they buy herbal medicines in addition to nutritional supplements.
The only reason cited by respondents for NOT buying herbal medicines was that they could not afford them.
Average supplement spending tops £180 per month
Our survey found that the average patient spends in the range of £30 to £73 pounds a month on herbal medicines each month, and £81 to 181 each month on nutritional supplements.
The median total spend is £183 each month.
Nearly half of patients cannot afford supplements
Despite these high average totals, close to half the survey respondents said that they buy no supplements of any kind, because they are completely unable to afford them. A few respondents commented that they had not found any benefit from the supplements they had tried, whilst others said they took supplements periodically, as and when they could afford them.
On the other hand, 8% of survey respondents said they spend over £300 a month on nutritional supplements per month and, of these, 3% spend over £400 a month.
Similarly, 5% of survey respondents said they spend more than £300 per month on herbal remedies.
Nutritional supplement spending
Half the respondents to our survey spend over £100 a month on nutritional supplements. Some of the most widely used supplements, mentioned in comments on the survey include vitamin C, Omega 3 Oil, Vitamin D and magnesium.
Herbal medication spending
The distribution of patients’ spending on herbal remedies dips deeply in the £200 to £300 range.
We think this may reflect that fact that the patients at the lower end of the spending range select a few herbal remedies to manage various symptoms, whereas those at the highest end of the spending range are following one of the complete herbals protocols, such as the Cowden protocol, the Buhner protocol or the Lyme Plus protocol, which tend to have a significantly higher monthly cost.
However, we would need to conduct a more detailed questionnaire than this brief survey to find out more objectively. It would also be revealing to survey a high number of patients to establish whether this is simply an anomaly in the data resulting from the relatively small data set surveyed.
All in all, we think this survey reveals several patterns in Lyme patients’ attitudes.
Despite the very large quantity of prescription medicines they receive from their NHS doctors (the results of a separate survey to be published soon), UK Lyme patients feel they need additional support to manage their symptoms, to try to support their immune functionality and to tackle their infections.
Many survey respondents observed that they would like to take more nutritional supplements, but were unable to afford them – indeed, around half are unable to afford them.
A small percentage of patients spend significant amounts of money per month on herbal medicines and nutritional supplements. The sums of money involved make us wonder if patients who have a regular income may be over-represented among this group. This begs the question whether herbal therapies and nutritional supplements may indeed be an effective method of managing the illness, if a complete (and therefore more costly) treatment protocol is used.
We therefore plan to conduct a larger and more detailed survey among patients to find out their overall level of health, which therapies they use, and which they feel have most contributed to their improvement in health.
With many thanks to Louise Dean and Natasha Metcalf of Lyme Disease UK patient group for facilitating and publicising this survey among their members