A UK-based patient/researcher offers information on borreliosis (Lyme disease), and a perspective on the difficulty of accurate testing for its presence - particularly for those currently diagnosed with 'chronic fatigue syndrome' (ME/CFS), fibromyalgia, and a host of other illnesses Lyme is known to mimic. Though the focus is on issues in the UK, and though the US case definition of Lyme is currently under review, much of the information is of international relevance. The author, diagnosed with ME/CFS several years ago, and recently with borreliosis, “is a highly intelligent anonymous sufferer whose research is endorsed by myself,” notes Dr. Sarah Myhill, MD, an ME/CFS/FM specialist who features the article on her website (DrMyhill.co.uk).*
Lyme Disease and CFS – The Practical Aspects
Many people in the UK with ME/CFS who are now being tested privately are finding they are infected with bacteria from the Borrelia species that cause borreliosis or Lyme disease. It wouldn't be surprising if a very significant percentage of those currently with a diagnosis of ME/CFS are actually infected with Borrelia or similar bacteria. An e-mail group poll showed that 80% of those with a diagnosis of borreliosis or Lyme disease had a previous diagnosis of ME/CFS.
Borreliosis and Lyme Disease
Borrelia is the name of a group of bacteria, of which there are many species, over 300 I believe, some of which are pathogenic. Borreliosis is the name of the disease caused by infection with these bacteria. Lyme disease has a narrower definition and can only be caused by 3 strains of Borrelia, so it can exclude many people with long term illness caused by the other strains of the bacteria.
The terminology used to define infections caused by Borrelia is not clearly defined. Lyme disease and borreliosis are often wrongly used interchangeably in the literature and sometimes the terms "Lyme borreliosis" and "neuroborreliosis" are used. Although the term "borreliosis" would be far more appropriate, it is seldom used in the UK, which is why I often refer to it as "borreliosis/Lyme".
Lyme disease was first recognized in the USA in 1975, when an outbreak occurred in Lyme, Connecticut, USA. The Borrelia bacteria were only discovered in 1982, which is one of the reasons why many people, including doctors, don't know much about it.
Some people who have borreliosis/Lyme have co-infections with other tick-borne pathogens such as babesia, erlichia or bartonella, and these cause illness too. Babesia are malarial-like protozoa which infect red blood cells, while the others are bacteria.
More About Borrelia
Borrelia bacteria are very large spirochetes with a long thin spiral type shape and are similar to those causing syphilis.
n They can exist in several different forms including a dormant cyst, a motile spirochete, and intracellular cell wall deficient forms.
n The spirochete is able to change to a different form when a threat occurs (for example, from the immune system or antibiotics) making it very difficult to eradicate.
n Borrelia can rapidly invade every type of tissue and every system in the body causing havoc in the host.
n Many symptoms are caused by Borrelia as it causes the immune system to produce cytokines (chemical messengers that help to regulate the immune response) and it produces many biotoxins, mainly neurotoxins, which are attracted to many areas of the body such as the central nervous system, peripheral nerves, muscles, joints, lungs, etc.
A main source of Borrelia infection is by a tick bite from an infected tick. Just one bite is all you need from an infected tick - this is only the size of a pinhead and may go unnoticed by the victim. If you read the literature on Lyme, it often refers to the American Deer Tick as being the source of infection, but in the UK the main vector is the Sheep Tick.
It's small creatures like mice and birds which are natural reservoirs for the infections in the UK, and it is they who provide the first meal for the newly hatched baby ticks. However, any animal could have ticks which carry Borrelia, including pets. Migrating birds can carry all sorts of bugs and infected ticks from other countries and continents, such as Africa.
It is not just ticks that can transmit the infection. Any biting insects such as mosquitos and fleas are now believed to be able to carry and transmit Borrelia, too. It is possible that Borrelia bacteria can sometimes be transmitted from mother to baby via the placenta, in breast milk, between sexual partners, and also by blood transfusions, though this is not yet widely accepted and more evidence is required. Borrelia has been isolated in human body fluids such as semen, tears and urine, in unpasteurized cow's milk, and even found in African dust.
There are 3 strains of Borrelia defined as causing Lyme disease, but there are also other strains which are pathogenic.
n In the USA it is Borrelia burgdorferi sensu stricto which causes Lyme disease,
n While in the UK and Europe it is B. burgdorferi ss, B. garinii or B. afzelii.
B. garinii is thought to cause more neurological symptoms than B. burgdorferi ss, and B. afzelii is thought to cause more cutaneous [skin-related] symptoms.
Ticks In the UK Are Infected With Borrelia
Many UK doctors don't know that you can get infected with Borrelia from ticks in the UK. The Natural History Museum tested many of its UK specimen ticks (PCR testing, which stands for Polymerase Chain Reaction testing of tick DNA), and found that between 8% and 97% were infected depending on the species of the tick. Some of the specimens were 100 years old. Another study from Swansea showed 30% of ticks in woods in South Wales were infected with Borrelia and 7% with a co-infection erlichosis.
It can only take one tiny tick bite from an infected tick for a human to become infected - a bite that goes totally unnoticed more often than not.
Some people get a bull's eye rash after a tick bite, which is a classic symptom of Lyme disease, but not everyone does. The symptoms of borreliosis/Lyme can be the same as ME/CFS; for example, painful joints and muscles, brain fog, memory problems, headaches, flu-like, neurological symptoms, stiff neck, numbness, tingling, extreme fatigue, Fibromyalgia, sleep problems, neurally mediated hypotension, noise or light sensitivity, and many more.
Like ME/CFS, there is a vast array of symptoms, but not everyone gets all of them. Borreliosis/Lyme can also mimic other diseases such as multiple sclerosis, lupus, and motor neurone disease.
n Some people get symptoms of borreliosis/Lyme within a few days or weeks of a tick bite, but for some it is much longer, even years.
n The symptoms can be cyclical, and they are often worse in women around the time of menstruation.
n As with ME/CFS some of the symptoms may vary from one day to the next in an unpredictable fashion.
n Some people get the illness more mildly or more severely than others. If it is left untreated some people may go on to develop long term or life-long severe debilitating illness.
n Some people can go into remission after a period of time, only for the disease to recur at a later stage - this is because the bacteria can change into a dormant cyst form and then change back again into the spirochete form when the time is right, for example when the person is stressed or immunosuppressed.
The literature about Lyme disease often refers to early stage disease and late stage disease (often called ‘late Lyme’). The early stage may have fewer symptoms such as flu-like, malaise, headaches, joint and muscle pain and/or fatigue and with or without a bull's eye rash. This rash is called localized erythema migrans and may occur a few days before the other symptoms. It’s not very clear cut, though, and some people may get many more symptoms early on, including neurological ones.
The spirochete has been shown to enter the central nervous system within 12 hours of entering the blood stream. If the illness is left untreated, it can progress and become a chronic multisystem disease within a few weeks or months. Some people, however, may just develop the symptoms of this late stage without having or recognizing an early stage. For example, some may only have mild early stage symptoms and just think it's a cold or a bout of flu, without realizing what it really is.
All too often the early stage, which is so much easier to treat, goes unrecognized and untreated, as some people do not get a rash or do not notice the tick bite. In fact, even if a tick bite is reported to a doctor in the UK, the doctor may well not realize its importance. Some people may go into remission after the early stage, even if it is left untreated, and maybe just forget about it.
The illness, however, can recur in its chronic late form weeks, months, or maybe even years later. It's the late stage of the disease that all too often goes undiagnosed in the UK, as standard NHS [the UK’s National Health Service] tests are usually negative by this time, and it's often the symptoms of this chronic stage that can be misdiagnosed as ME/CFS.
It’s quite possible that those who are chronically infected with borreliosis/Lyme also have collateral conditions which may give additional symptoms.
n Evidence has shown that the hypothalamic-pituitary link is malfunctioning, causing pituitary suppression. Pituitary and endocrine abnormalities could be quite common.
n It is possible that the cellular hormone receptors may be blocked. For example, thyroid receptors could be blocked resulting in symptoms of subclinical hypothyroidism. This implies that blood testing may not pick up the hypothyroidism, as there will be more thyroid hormone in the blood and less in the cells due to the receptor blockade.
n Magnesium deficiency is also often present, which can give rise to several symptoms.
n Deficiency in vitamin B12 could also be present.
Diagnosis and Testing
In the early 1990s the US Centers for Disease Control and Prevention (CDC) set up a definition of Lyme/borreliosis for an epidemiological study into this disease.
These narrow rigid criteria have been followed throughout the world ever since. More recently, the CDC revised these guidelines, which now clearly state that these criteria are NOT intended for diagnostic purposes and that patients must be primarily diagnosed by clinical symptoms. Despite this, the new advice seems to have gone unheeded, resulting in many cases going undiagnosed, especially late/chronic ones.
The original outdated guidelines are still rigidly adhered to in the UK. Most UK doctors, including Infectious Diseases specialists, are UNAWARE that:
n The illness can be spread by factors other than ticks. This is not indicated in the new guidelines as it is not widely accepted yet.
n Ticks in the UK can carry and transmit Borrelia.
n Different strains of Borrelia which are defined as causing Lyme disease can give different disease expressions. One of the common strains in the UK, B. garinii, tends to cause more neurological symptoms, while another common strain found in the UK, B. afzelii, tends to cause more cutaneous symptoms when compared with B. burgdorferi ss, which tends to cause more arthritic symptoms. Although this is mentioned briefly in the CDC guidelines, much of the literature about Lyme disease refers to symptoms caused by B. burgdorferi ss, which is commonly found in the USA.
n There are more strains of Borrelia that can cause illness than those defined to cause Lyme disease.
n The illness should be diagnosed by clinical evidence rather than by tests alone, since these are not reliable enough.
n If a bull's eye rash occurs, treatment should start immediately without testing, as tests may be negative in the very early stages.
n An active infection can exist when there is a negative serology test.
n There can still be an active infection when symptoms persist or recur after antibiotic treatment.
Most NHS doctors do not understand the pathophysiology of borreliosis/Lyme and seem unaware of its extremely diverse symptoms. The illness is fairly new in the medical world and so is poorly described in medical textbooks.
In some Eastern European countries where it is endemic, they diagnose borreliosis/Lyme by symptoms, but in the UK doctors won't normally do that; in fact most wouldn't even know what to look for. NHS doctors in the UK rely on highly unreliable two-tier antibody tests to diagnose borreliosis/Lyme. First they do the Elisa test [Enzyme-Linked ImmuneSorbent Assay, used to detect presence of an antibody or antigen in a sample] and if that is negative, the patient is deemed not to be infected - end of story.
If the patient is fortunate enough to get a positive Elisa test, a Western Blot test [method of detecting a specific protein in a sample by ‘probing’ with antibodies specific to the target protein] is then carried out - this is just as unreliable as the first test and excludes even more infected patients! Some people may be positive for the Western Blot but not the Elisa, but they would never be tested.
Apparently, the UK Western Blot tests don't test for every strain of Borrelia, even all those pathogenic strains found in the UK let alone those contracted overseas, but many doctors, even Infectious Diseases specialists, don't realize this. The UK tests may pick up some cases, but would miss many many more - maybe more than 90% are missed. There are many people who have been found negative with NHS tests and positive by other private testing.
The above indicates that there could be many misdiagnosed cases of borreliosis/Lyme in the UK, especially chronic ones. All too often people with chronic active infection are fobbed off as having post-Lyme disease or ME/CFS. Antibody tests for borreliosis/Lyme are highly unreliable for a number of reasons, some of the main ones being:
n Borrelia infections cause malfunctioning of the immune system. Co-infections only add to this.
n The infection can go into cyst form, which reduces the immune response.
n The infection can go into intracellular cell wall deficient form, which cannot be detected by antibodies, as there is no cell wall.
n The antibodies are in immune complexes, and so cannot be detected by the test.
n The spirochetes can be encapsulated in host tissue (lymphocytic cell walls) and thus hide from the immune system. I've seen them described as wolves in sheep's clothing.
n The spirochetes are deep in the host tissue, especially tissue with a very poor blood supply.
n Recent infection - before the immune response has taken hold.
n The disease is in the late stage. Those who are chronically infected very often have negative antibody tests.
n Recent treatment with various drugs, including antibiotics and anti-inflammatories.
n Factors which cause immunosuppression.
n Lab techniques.
n The lab does not test for the strain. The UK Western Blot does not test for every pathological strain, even all those found in the UK, let alone those found abroad.
The only decent tests you can do at the moment are private. These are costly and include:
n The Bowen test in the USA, http://www.bowen.org. This is an antigen test; that is, they actually look for the Borrelia rather than antibodies to it, and they also test for co-infections at no extra cost. [Note: Apparently refers to The Lyme Antigen Test by Flow Cytometry, now provided by the Central Florida Research Laboratory, which reports the test service is available to physicians/practitioners all over the world and is covered in the U.S. by Medicare and major insurance companies – see http://centralfloridaresearch.com/lab2/index.php?option=com_content&view=article&id=50&Itemid=58.]
n The Igenex tests in the USA, http://www.igenex.com. Igenex does a Western Blot test that may sometimes give a false negative as it looks for antibodies, but it is far better than the UK Western Blot and may sometimes help convince doctors that you have borreliosis/Lyme, though not all will believe it. They also do PCR [polymerase chain reaction] tests.
n There is also private blood microscopy to test for Borrelia-type bacteria done in the UK. I think there is a considerable waiting list for this.
n Someone in the UK is trying to set up PCR tests (looking for DNA fragments of Borrelia) and cultures - these will be a while yet - private again I'm afraid. It is very very difficult to culture Borrelia, which is why it isn't detected by NHS bacterial culture tests.
Testing is important so you know what infections you've got, so you can at least begin to get doctors to believe you have a treatable disease. However, if tests are negative the illness should not be ruled out if you have the symptoms. The CDC states that "there is no reliable test for Lyme disease at this time."
Information on Borreliosis/Lyme
Details of tests and information on borreliosis/Lyme can be found on the links/files on the EuroLyme [European Lyme Disease Support Group] and Infections [ME/CFS, FMS, Lyme and Hidden Infection] sites.
n http://health.groups.yahoo.com/group/Eurolyme - for patients and professionals.
Other useful sources of information on borreliosis/Lyme are:
n http://www.lymenet.org - this site [sponsored by The Lyme Disease Network of New Jersey] is actually recommended to UK doctors.
n http://www.ilads.org - for health professionals [ILADS stands for International Lyme and Associated Diseases Society - a multidisciplinary medical society].
Details of possible treatments are all in the files of EuroLyme. "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" by Dr. Joseph J. Burrascano, MD, is a good starting point. [Note: Released by ILADS in early 2004, this 40-page article is an evidence-based comprehensive set of Lyme Disease Treatment Guidelines to assist physicians, public health officials and organizations involved in the evaluation and treatment of Lyme disease. The Lyme Disease Association, a national U.S. organization, and the California Lyme Disease Association endorsed the Guidelines, which were then peer-reviewed and made available to professionals and to the public.]
There are various antibiotic treatments for borreliosis/Lyme; what suits one may not suit another. The illness is much easier to treat in the early stages, the longer a person has had the illness the harder it is to treat. It may not be completely curable in long term chronic cases, but there are a growing number of people much, much improved after treatment with long courses of antibiotics. Some people are lucky and can get their GPs to prescribe the antibiotics, but many have problems and have to pay privately. All too often, especially when prescribed by NHS doctors including infectious disease specialists, the antibiotics are given for too short a time or too low a dose to eradicate the bacteria fully.
Some people who have babesiosis as a co-infection (similar to malaria) need an expensive antimalarial drug costing approximately £700 a month for several months, and the NHS are refusing treatment on the grounds of cost. A consultant was willing to prescribe drugs privately to one person with Lyme disease, but not on the NHS.
At the moment there are a few of us, including myself, on Samento (TAO-free cat’s claw), an immune modulating herb. Apparently some of us are doing well on Samento, and some are not, but it's early days yet. Some people need to take the herb for quite a long time before symptoms start to improve. More information on Samento can be found on http://www.samento.com.ec (also has some information on borreliosis/Lyme) or http://www.samento-faq.eu.kz. [See also “Study Tests Promising Herbal Protocol for Chronic Lyme Patients”.]
The Marshall Protocol is fairly new, so it's early days yet, but it has potential. There is a website, http://www.marshallprotocol.com. For this protocol, [the prescription drug] Benicar, known as olmesartan [generic name] or Olmetec in the UK, is given in high doses to suppress inflammation, which allows antibiotics to work better and be given in lower doses.
Some people with CFS are being helped by this, and again some are not. There was an article on http://www.immunesupport.com not so long ago. Some are getting Benicar on the NHS, some are not, it depends on the doctor. The article by Dr. Scott Taylor, DVM - "Lyme Disease (Borreliosis). A Plague of Ignorance Regarding the Ignorance of a Plague" - which can be found in the EuroLyme files, also covers this protocol.
Many people get bitten by ticks in the UK; therefore the studies showing that many ticks in the UK are infected with Borrelia, together with the possibility that Borrelia may be passed on from person to person imply that every year in the UK there could be thousands of cases of borreliosis/Lyme, a treatable disease with similar symptoms to ME/CFS and for which the NHS has very inadequate testing and diagnostic techniques.
The problem in the UK is that most NHS doctors will usually only go by highly unreliable UK NHS tests. Even if you get a positive result from a reputable private test, most NHS doctors will just ignore this, although a few may go by it. Even if you have a positive result from a UK test, it’s quite possible you won’t be prescribed antibiotics by an NHS doctor for a sufficient length of time to completely treat it. There are many reasons why antibody tests may not give a positive result. They don't rely just on antibody tests to diagnose other infections such as syphilis and TB, so why should they for borreliosis/Lyme? They don't mind treating those with antibiotics, why not this infection?
Borrelia bacteria are prevalent in temperate climate zones, and borreliosis/Lyme is known to be endemic in some other European countries and also other parts of the world. The UK has a temperate climate, so surely it is quite possible that it is endemic here. After all, ticks, insects, birds, and animals do not understand geographical boundaries. Also many people go on holiday abroad, and now the pet passport has been introduced, pets go abroad too.
Two CFS research studies done by MERGE [ME Research Group for Education and Support - a national UK charity at http://www.meresearch.org.uk] showing vascular abnormalities and increased neutrophil apoptosis also support the theory that those with ME/CFS could have an ongoing infection.
Private testing in those with ME/CFS can also pick up treatable infections, other than those caused by Borrelia and its common co-infections, that are not picked up by standard NHS testing. For example, infections caused by mycoplasma, rickettsia, protozoa, onchocerca, and many more.
What we need is for research to be done to show that those with ME/CFS have an infection - NOW. People should not be having to pay for their own treatments and tests. Once it is proven many people with ME/CFS have an infection, hopefully all the psychobabble stuff will fall out the window.
The author has had ME for several years and has been recently diagnosed as having borreliosis.
* This material is reproduced with permission from Dr. Myhill’s patient-information website (http://www.DrMyhill.co.uk). R Sarah Myhill Limited, Registered in England and Wales: Reg. No. 4545198.
Note: This information has not been evaluated by the FDA. It reflects personal interpretation of research and opinion by an anonymous patient author, and is not meant to prevent, diagnose, treat, or cure any illness, condition, or disease. It is essential that you make no decision about additions to or changes in your healthcare plan or regimen without first researching and discussing it in collaboration with your professional healthcare team.