“It’s the cancer of our time,” says naturopath Oliver Barnett, an integrated medical practitioner and leading health expert in the UK. Barnett speaks for an estimated 45,000 people who suffer from Lyme disease in the UK annually, as well as 85,000 people in Europe and 300,000 in the US. Celebrities such as Bella Hadid, Ally Hilfiger, Avril Lavigne, and Ashley Olsen have been vocal about their struggles with chronic Lyme, but there is yet to be real medical recognition of this illness. Doctors continue to believe that persistent symptoms do not validate a diagnosis of chronic Lyme, yet millions of people continue to suffer. How has an illness comparable to cancer become the disease swept under the rug?
Lyme disease is a tick-borne infection that affects millions of people worldwide. Initial flu-like symptoms can appear shortly after being bitten by a tick, which can be quickly and effectively treated. However, if unnoticed and left untreated, the infection can develop into a much more dangerous condition. This is known as chronic Lyme disease, or “post-treatment” Lyme disease. Symptoms that occur in the later stage of the disease include neurological problems, such as poor concentration, memory, and confusion, extreme fatigue, headaches, muscle and joint pain, swollen glands, night sweats, and much more. Many doctors refuse to believe that Lyme disease can persist after the initial round of antibiotics, and often think it is no longer Lyme if symptoms continue. In an article for the BBC, consultant microbiologist at Public Health England’s Rare and Imported Pathogens Laboratory, Matthew Dryden, stated: “There is no consensus over whether chronic Lyme actually exists.” Camila Ruz writes in this article, “There are plenty of diseases that can, rarely, lead to similar long-term symptoms from flu to Glandular fever”. However, patients who test positive for Lyme initially can still become chronically ill with the disease after treatment that is expected to be successful.
Many patients who know they have been recently bitten, often from spotting a bulls-eye rash, are more likely to have positive blood test results and get successfully treated. Is it possible that, because of the patients whose conditions improve upon receiving treatment, doctors are more adamant that the chronic condition does not exist?
The testing for Lyme is outdated, inaccurate, and unreliable, and more doctors are turning towards a clinical diagnosis rather than relying on test results that more often than not come back negative. These false-negatives could be because Borrelia (Lyme bacteria) is hard to identify and will not always show up in the patient’s blood, or because the patient has a different strain of Borrelia than what the test is looking for. There are some laboratories, such as Armin Labs in Germany, that are more accurate in identifying tick-borne infections through blood tests that have been overlooked by other labs. Because not all labs correctly identify cases of Lyme and co-infections, and many doctors only treat based on these standard blood tests, an increasing number of patients are now turning to alternative methods for treatment.
Many doctors who refuse to acknowledge that this disease is real just tell patients that their illness is “all in their head”. According to a survey conducted by John Caudwell’s Caudwell LymeCo charity, 69% of those interviewed had Lyme symptoms for over two years before receiving diagnosis, and 274 out of 500 patients received a psychiatric diagnosis such as anxiety or depression before receiving a Lyme diagnosis. Yolanda Hadid, Real Housewives of Beverly Hills star and mother of models Bella and Gigi Hadid, has even compared Lyme disease to HIV. “We all pull together so beautifully for HIV. Lyme is three times more prevalent right now, it’s a world-wide epidemic, the first case was diagnosed in 1972…and yet we haven’t done anything about it.”
Oliver Barnett, who is a natural medicine practitioner at his practice, London Clinic of Nutrition, explains that England takes after America in their treatment of the disease. The Centers for Disease Control and Prevention (CDC) is the leading public health institute in the US, and they do not fully recognise chronic Lyme. In the film Under our Skin, it is shown that people on the Lyme board of the CDC are being paid by insurance companies to say that chronic Lyme doesn’t exist, only acute Lyme exists. “So they don’t get people the antibiotics they need, and England follows America’s suit, so the GPs in the UK don’t think it’s a problem. In my opinion, and in a lot of people’s opinion, that is the real truth,” says Barnett.
What doctors fail to understand is that their denial of the condition severely affects millions of people. The CDC website offers vague solutions, such as recommending patients with persistent symptoms to receive treatment for Fibromyalgia or Chronic Fatigue Syndrome. Barnett explains why this isn’t helpful for patients, because it does not offer a solution. “Chronic fatigue tells someone that they have a lot of fatigue and that it’s chronic and it’s a lot of the time, Fibromyalgia just tells someone they’ve got pain in multiple places. But it doesn’t tell anyone the underlying cause, whereas often Lyme is the underlying cause of these things.”
Barnett refers to Dr. Richard Horowitz’s practice in the US, which has had success treating patients with an integrated approach. Dr. Horowitz has treated over 12,000 chronic Lyme patients, combining classic and complementary techniques. He uses what he calls the “Horowitz questionnaire” to determine the likelihood of someone having Lyme. This questionnaire includes a long list of symptoms, which the patient assigns a number based on severity, and the total of these numbers is added together to determine the probability of them having a tick-borne illness. A collective approach to treat all of the patient’s symptoms will address the underlying cause, rather than just labelling them with something such as Fibromyalgia.
“Targeting one particular area will not be enough for getting well,” says Barnett. “I think having a very collective approach to wellness if the most important thing.”
Natasha Metcalf, co-founder of Lyme Disease UK, had to travel to California to receive special treatment after doctors in the UK refused to consider the possibility of her having Lyme. “I received a lot of psychiatric labels,” says Metcalf, counting at least eight or nine different diagnoses before Lyme, including psychiatric diagnoses that she didn’t have symptoms of. When the treatment for these diagnoses failed to improve her condition, doctors weren’t supportive. “They just said we can’t do anything, and I found that really shocking,” she says.
Metcalf started feeling ill when she was sixteen years old, but didn’t receive a correct diagnosis of Lyme for 12 years. Her symptoms included night sweats, swollen glands, horrible headaches, poor concentration, and more. “My brain shut down. It’s like becoming stupid overnight. I couldn’t concentrate, I couldn’t follow conversations properly. Suddenly I just became so withdrawn. I didn’t feel safe in my own body.” Not only did her symptoms affect her studies, but also her social life, where she went from being outgoing and social to being very secluded. “I didn’t want to speak to anybody. At lunchtime I would just go and hide in my room. I wasn’t eating properly because I couldn’t bear to be in the cafeteria, there was just too much stimulus,” she says.
Years of patients’ suffering could be taken away if GPs are correctly trained to identify Lyme, and aren’t led to believe chronic Lyme isn’t real. “There’s a lot of politics surrounding it,” says Metcalf, of reasons why doctors refute the idea of a chronic Lyme diagnosis. Although Metcalf was able to receive treatment under a US doctor, her life is still not back to normal. “I’m a lot better than I was,” she says, “But I have a long way to go. I’m still pretty withdrawn. I don’t feel safe enough to drive, I’m still not working full time as in paid work, I don’t feel well enough to be in an office. It’s not a full life, and it’s not really enough.”
Alister Monro, who is the managing director of Breakspear Medical, says that some of the controversy may be around the fact that Lyme patients aren’t just ill with Lyme, but rather multiple co-infections that need to be looked at as well. Breakspear Medical is a family business treating environmental illness, and has treated many patients for Lyme and co infections. “We have in the last 12 years or so treated more than 1,000 people with Lyme and other infections, and it’s been very successful,” he says. “We rarely find a patient that has only got Borrelia burgdorferi (Lyme bacteria). In fact, in the past couple of years, I don’t think we’ve had a single patient that has tested positive for Lyme that has only got Borrelia. They normally have two or three other infections as well, and that may be a contributing factor to the controversy.”
Monro recalls a conversation with Dr. Tim Brooks, who is the clinical services director and consultant microbiologist at Porton Down, a military science park that conducts Lyme screenings. If a patient receives a positive result from a basic ELISA test, a blood sample can be sent to Porton Down for another Lyme test. According to Lyme Disease UK, this is “A slightly better test but may still miss cases”. There is controversy surrounding Porton Down, which Oliver Barnett explains: “More often than not, even if you get a positive western blot (another Lyme test), which is rare, when you come back for your results from Porton Down, you find that it’s negative again. I think they are trying to play down how large the problem really is”. Monro explains his conversation with Dr. Brooks, saying, “He knows his tests are not the best, but he also said they are not the worst; they are comparable with the testing protocols of all other developed countries”. Still, this is not good enough.
Meanwhile, patients who are suffering from Lyme continue to receive negative results, to which their GPs find no solutions to. “People are told they probably have ME or CFS or any number of other chronic conditions. They don’t generally get treated,” Monro says. “One of the major confusions is that they’re not just treating one infection, they’re treating a group of infections, including viral infections. Those aspects aren’t being considered by mainstream GPs, or even by infectious disease specialists.”
Common co-infections often found in patients with Lyme include Epstein-Barr Virus, Babesia, Bartonella, Candida, and Ehrlichiosis, to name a few. “It’s not just one bug,” Monro explains. Because a short course of antibiotics doesn’t work, “They don’t know what to do with those people, hence you’ve got this new term, ‘post-treatment Lyme disease syndrome’. They’re not offering any solutions for that group of people”.
What solutions can be offered? What progress can be made to ensure that those infected with Lyme receive adequate treatment and recognition? A basic step forward should be requiring GPs to be better trained to identify Lyme, both chronic and acute cases. They should be familiar with symptoms and a variety of treatment options. Doctors also need to use a clinical diagnosis as long as no accurate blood tests are introduced. “There needs to be less pressure on doctors,” says Metcalf. “A lot of them are scared of loosing their licenses if they treat more than two to four weeks. Some doctors say they want to treat for longer, but their hands are tied. There needs to be some lifting of the restrictions for doctors to use their clinical judgement.”
Doctors should treat on a case-by-case basis, catering to each individual patient’s symptoms and needs, rather than assuming all patients’ symptoms are in their head. This can result in a lot of patient trauma, which adds to the severity of the disease. Both Metcalf and Monro mentioned a free online training course from the Royal College of General Practitioners that teaches how to identify Lyme. It only takes 30 minutes, but only 2% of GP’s have completed this short course. “Most of the public have never heard of Lyme disease before, and most GPs don’t think of it. More needs to be done,” says Monro. With better tests and more GP training, the traumatising journey a Lyme patient often endures can be reduced or even eliminated. “So many patients seeking help at Breakspear have had a terrible time with private doctors as well as their national health insurance team. I think because not enough is known,” Monro says.
Oliver Barnett is opening the UK’s first treatment centre for Lyme disease and similar conditions in central London. Barnett says that it will be a collaborative practice. “When people come see us, they initially see one of my team, but then we work out with the patient what’s going to be the most appropriate treatment for them, and we have that all under one roof”. The idea is that by using a collective approach, patients will come in two or three times a month to receive a couple different treatments.
As far as creating a universally accepted and accurate Lyme test, Alister Monro says he wishes the laboratories “Would all just hold hands and compare results. The tests are so poor, I think a lot more work needs to be done by the labs”.
On a more general note, the public needs to be aware of the danger of ticks. “I live in the countryside,” says Monro. “I walk my dogs in the woods every day. I absolutely sweat when I see children running around in the long grass wearing short trousers and short dresses. People don’t recognise when they have a tick bite or when they have caught an infection.” When in the woods or grassy areas, people should wear long trousers tucked into socks and long sleeve tops. Because ticks are so small, everyone should thoroughly inspect their bodies for any ticks after being exposed to these areas.
Most importantly, doctors need to work harder to treat this debilitating condition. “I think they need to read some of the literature,” Monro says of doctors who deny the existence of chronic Lyme. “It saddens me that they’re not even open minded, often, to the possibility of long term infection.” Barnett says it comes down to complacency, lack of knowledge, and training. Lyme needs to be a disease that all doctors are familiar with – one that they learn about and understand before beginning their practice.
Ultimately, doctors need to listen to their patients. Many patients who have developed anxiety and depression due to the questioning and treatment of their suffering have known there is something wrong when their doctors didn’t. Although it is a disease that is not thoroughly understood, this does not mean it is not real. Millions of people are suffering, and change needs to be made to help improve these lives.
As Oliver Barnett explains, “Richard Horowitz gives his metaphor about having 16 nails in your foot, and to have a happy foot you have to remove all 16 nails. I think for people with chronic health problems, you just have to work out what those 16 nails are and remove them, and then health is going to be better”.
London Clinic of Nutrition is based in central London and Hertfordshire. Along with treating Lyme disease, they treat autoimmune diseases, cardiovascular health, IBS, sports nutrition, women’s nutrition, energy and metabolism, and more. Find them at: http://londonclinicofnutrition.co.uk.
Breakspear Medical is based in Hemel Hempstead. They focus on allergy and environmental illness, and treat conditions such as Asthma, Chronic Fatigue Syndrome, IBS, Multiple sclerosis, chemical sensitivity, and more. Find them at: http://breakspearmedical.com.
Lyme Disease UK is a non-for-profit patient support network for Lyme sufferers in the UK. Their website posts news and information about Lyme disease, including patient support groups, public events, and conferences. If you think you may have Lyme disease, more information can be found here. Find them at: http://lymediseaseuk.com.