Lyme disease, also known as Lyme borreliosis, is an infectious disease caused by Borrelia infection transmitted by ticks. The most common early sign is an expanding area of redness beginning at the site of a bite about a week after a tick-bite. Fever, tiredness and headaches often follow. Later stages are characterised by more severe and remarkably variable illness.
Patients with medically unexplained or vague symptoms are sometimes told that they suffer from Lyme disease. These patients are commonly targeted by providers of alternative therapies who promise hope by claiming that their particular brand of quackery is effective for this chronic condition.
A recent review was designed to identify and characterize the range of unorthodox alternative therapies advertised to patients with a diagnosis of Lyme disease.
Internet searches using the Google search engine were performed to identify the websites of clinics and services that marketed non-antimicrobial therapies for Lyme disease. Subsequently the PubMed search engine was employed to identify any scientific studies evaluating such treatments for Lyme disease. Websites were included in this review, if they advertised a commercial, non-antimicrobial product or service that specifically mentioned utility for Lyme disease. Websites with patient testimonials (such as discussion groups) were excluded unless the testimonial appeared as marketing on a commercial site.
More than 30 different alternative treatments were identified. They fell into several broad categories: these included oxygen and reactive oxygen therapy; energy and radiation-based therapies; nutritional therapies; chelation and heavy metal therapies; and biological and pharmacological therapies ranging from certain medications without recognized therapeutic effects on Borrelia burgdorgeri to stem cell transplantation. The review of the medical literature did not substantiate efficacy or, in most cases, any rationale for the advertised treatments.
The authors concluded that providers of alternative therapies commonly target patients who believe they have Lyme disease. The efficacy of these unconventional treatments for Lyme disease is not supported by scientific evidence, and in many cases they are potentially harmful.
Being a bacterial infection, Lyme disease can be successfully treated with oral or intra-venous antibiotics. But, of course, patients need to have the infection in order to benefit from antibiotic treatment. Those patients who don’t are easy targets for charlatans promising help from bogus treatments. It seems that an entire, profitable industry has developed around this situation.
10 Responses to Lyme disease (imagined and real): an easy target for charlatans
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Such a review could probably be done on various other diseases or sets of symptoms with a similar result.
It always makes me wonder if it is really that hard to design some law that would punish these sorts of charlatanry – given the existance of an agreed upon, working mechanism to distinguish between quackery and real medical help. The latter shouldn’t be too hard to find.
Is NHS care for Lyme Disease somehow inadvertently encouraging desperate patients into the hands of charlatans?
I’ve heard complaints of unreliable tests, and denial of ‘chronic Lyme’ (from patients).
The hysteria about undiagnosed Lyme is global btw, if you look at patient activist groups in Australia and USA.
“Patients with medically unexplained or vague symptoms are sometimes told that they suffer from Lyme disease.”
Wouldn’t ‘misdiagnosed’ be better than ‘imagined’, especially given some of the prejudices that surround MUS?
I think the patient concerns about not being offered testing at all, and then worrying that the NHS tests are ‘inaccurate’ are also relevant. There’s plenty of potential to exploit the desperate with so-called ‘more accurate’ tests ie those more likely to give a positive result.
Why did this group need to put effort into writing this paper? Why did they not acknowledge that there is genuine uncertainty in diagnosis and treatment of Lyme disease? Or as Martin says, that most other conditions, including that of good health, are targeted by alternative practitioners? Why write an unbalanced paper?
As a patient advocate organisation we try to not jump to conclusions but it appears that they wish to add weight to the side of the argument promulgated by the Ad Hoc International Lyme Group which was established to maintain that chronic Lyme does not exist and that patients are “anti-science”. It is unhelpful and simply stokes a fire.
The NHS tests are generally as good as they could be, but there is no perfect test for Lyme disease: researchers around the world are working on it. If you are a patient told by your doctor that your negative test result could not possibly be due to early, short treatment for cellulitis or facial palsy, and you know that is not true, you lose trust in the doctor. As Cathy says, we cannot be surprised that ill patients fall into the sympathetic arms of the quacks.
There is a middle ground and it is a pity that people who should be more responsible refuse to recognise it. This paper is in a medical journal and will be read by clinicians and by allying Lyme disease with CAM it will bolster their view that chronic Lyme disease is “in the patient’s head”. What is the result? More trade for the quacks.
Are there actually any accurate tests for Lyme or chronic Lyme?
There is currently no blood test that can confidently rule out Lyme disease. The standard blood test detects specific antibodies which may or may not have been generated in sufficient quantity for various reasons. A PCR test will detect the RNA/DNA of the bacteria, but after a few weeks Borrelia have migrated to tissues, and what do you biopsy?
IgeneX lab in Palo Alto CA is considered by many to have the gold standard test. Not conclusive but better than the standard commercial tests. It’s just one data point to use.
Besides, treating complex chronic illness is not just about collecting data on infections. You have to address toxic load, environmental exposures (e.g. toxic mold), emotional factors, nutrition, immune sys function, dental toxicity, etc.
I feel ill several years ago and was dx’d with Lyme. I was previously exceedingly fit and healthy. I am now debilitated. Mainstream medicine has no answers. No clue even. I remain a certain skepticism about the dx, but it seems to fit and explains a lot.
I know dozens of people in similar situation who have made significant progress with a wide range of interventions, ignoring the propaganda and corruption spewing forth from IDSA. That IDSA were investigated for anti-trust violations by the Conn attorney general tells you something. Why, as a very sick patient, would I trust them or the docs who follow their guidelines?
The MDs and NDs and herbalists that are so cynically and derisively attacked here, and by other self-appointed psuedo-science skeptics, are helping people in large numbers. I have seen it firsthand. I don’t trust them implicitly, but they are miles ahead of the mainstream.
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There are many SCAM- healers like Buhner👍
But strangely enough, the world-renowned self-proclaimed expert on medicinal plants and author of numerous books could not treat his pulmonary fibrosis himself. Where was his expertise?
https://www.lymedisease.org/herbalist-and-healing-lyme-author-stephen-buhner-has-died/
The German doctor and SCAM journalist recently advertised his translation by Buhner in the nature magazine “Die Allgäuerin”.
https://www.dieallgaeuerin.de/fileadmin/archiv_200_x_258/2021-02/2021-02_Inhalt.pdf
“Anyone who develops a feeling for herbal therapy can successfully control the healing of infections with successful means.” 🤣
https://www.isbn.de/buch/9783946245056/lyme-borreliose-natuerlich-heilen
🤷♀️ Why should I send my sample to IgeneX lab? 🤷♀️
👍
Here is a statement from the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) about the unreliability of IgeneX testing.
https://lymescience.org/igenex-lyme-disease-testing-nih/
“These 21 blood samples were analyzed and compared with those from 10 healthy volunteers who had no history or symptoms of Lyme disease.”
“At least one urine fraction from each of the 10 samples examined tested false-positive.
Replicates for the eight remaining samples examined were a mixture of positive and negative values, making it impossible to conclude that they were positive or negative.”
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If you’re really interested in the latest recommendations…
https://pubmed.ncbi.nlm.nih.gov/30528068/
👉 IgeneX testing has also been cited as problematic by the FDA.