Many people in the United Kingdom with M.E. who are now
being tested privately are finding they are infected with bacteria from the
Borrelia Burgdorferi species that cause Borreliosis or Lyme disease. It wouldn't
be surprising if a very significant percentage of those currently with a
diagnosis of M.E. 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 M.E.
Borreloisis & Lyme
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 bacteria. The
terminology used to define infections caused by Borrelia are 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 the term
Lyme disease was first recognised 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.
Borrelia bacteria are very large spirochaetes with a long thin
spiral type shape and are similar to those causing syphilis. They can exist in
several different forms including a dormant cyst, a motile spirochete and
intracellular cell wall deficient forms. The spirochaete is able to change to a
different form when a threat occurs (e.g. from the immune system or antibiotics)
making it very difficult to eradicate. Borrelia can rapidly invade every type of
tissue and every system in the body causing havoc in the host. 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,
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 disease, 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. Its
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 such as Africa.
It is not just ticks that can
transmit the infection. Any biting insect such as mosquitoes 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, unpasteurized cow’s milk and even found in African dust.
are 3 strains of Borrelia defined as causing Lyme disease, but there are also
other strains which are pathogenic. In the USA it is Borrelia burgdorferi sensu
stricto which causes Lyme disease, 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 coetaneous symptoms.
Ticks in the UK are infected with
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) and found 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.
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 M.E., e.g. painful joints and muscles, ‘brainfog’, memory problems,
headaches, Flu-like, neurological symptoms, stiff neck, numbness, tingling,
extreme fatigue, sleep problems, neurally mediated hypotension, noise or light
sensitivity and many more. Like M.E., there is a vast array of symptoms, but not
everyone gets all of them. Borreliosis/Lyme can also mimic other diseases such
as Fibromyalgia Syndrome, Multiple Sclerosis, Lupus and Motor Neurone
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. The
symptoms can be cyclical and they are often worse in women around the time of
menstruation. As with M.E. some of the symptoms may vary from one day to the
next in an unpredictable fashion. 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. 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 spirochaete form when the time is right, for
example when the person is stressed or immunosuppressed.
about Lyme disease often refers to early stage disease and late stage disease
(often called late Lyme). The early stage symptoms 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. Its not very clear cut though
and some people may get many more symptoms early on including neurological ones.
The spirochaete 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 recognising 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 realising
what it really is. All too often the early stage, which is so much easier to
treat, goes unrecognised 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 realise 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 tests are usually negative
by this time and it’s often the symptoms of this chronic stage that can be
misdiagnosed as M.E.
Its quite possible that those who are chronically
infected with Borreliosis/Lyme also have collateral conditions which may give
• Evidence has shown that the
hypothalamic-pituitary link is malfunctioning causing pituitary suppression.
Pituitary and endocrine abnormalities could be quite common.
• 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
• Magnesium deficiency is also often present which can give
rise to several symptoms.
• Deficiency in vitamin B12 could also be
Diagnosis & Testing
In the early 1990s the United
States Center for Disease Control and Prevention (CDC) set up a definition of
Borreliosis/Lyme for an epidemiological study into this disease.
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
The original outdated guidelines are still rigidly
adhered to in the UK. Most UK doctors, including Infectious Diseases
specialists, are UNAWARE that:-
• 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.
• Ticks in the UK can carry and transmit
• 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 coetaneous
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.
• There are more
strains of Borrelia that can cause illness than those defined to cause Lyme
• The illness should be diagnosed by clinical evidence rather
than by tests alone since these are not reliable enough.
• If a bull’s
eye rash occurs, treatment should start immediately without testing, as tests
may be negative in the very early stages.
• An active infection can exist
when there is a negative serology test.
• There can still be an active
infection when symptoms persist or recur after antibiotic
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
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 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 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 realise 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
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
Antibody tests for Borreliosis/Lyme are highly unreliable for a
number of reasons some of the main ones being:-
• Borrelia infections
cause malfunctioning of the immune system. Co-infections only add to
• The infection can go into cyst form which reduces the immune
• The infection can go into intracellular cell wall deficient
form which cannot be detected by antibodies as there is no cell wall.
The antibodies are in immune complexes, and so cannot be detected by the
• 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.
• The spirochetes are deep in the host
tissue, especially tissue with a very poor blood supply.
infection - before the immune response has taken hold.
• The disease is
in the late stage. Those who are chronically infected very often have negative
• Recent treatment with various drugs including
antibiotics and anti-inflammatories.
• Factors which cause
• Lab techniques.
• 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.
decent tests you can do at the moment are private. These are costly and
• The Bowen Research & Training Institute Inc. test in the
USA. This is an antigen test, i.e. they actually look for the Borrelia rather
than antibodies to it and they also test for co-infections at no extra
• IGeneX, Inc. tests in the USA. IgeneX do 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
• 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
• 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.
• There is also the Acarus vet's
lab in the UK which can test humans for babesia, a co-infection, as some pets
are diagnosed with this.
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 state that “there is no reliable
test for Lyme disease at this time”.
Details of tests and information on Borreliosis/Lyme can
be found on the links/files on the EuroLyme and the Infections groups for
patients and professionals.
Other useful sources of information on
Borreliosis/Lyme are Lyme Disease Network which is actually recommended to UK
doctors, and International Lyme And Associated Dieases Society for health
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 J Burrascano is a good starting point.
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 on
Samento (TAO free cats claw), an immune modulating herb, including myself.
Apparently some of us are doing well on Samento, and some are not, but its 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 www.samento.com.ec (also has
some information on Borreliosis/Lyme) or www.samento-faq.eu.kz.
The Marshall Protocol is fairly
new, so it’s early days yet, but it has potential. For this protocol benicar,
known as Olmesartan 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 M.E. are being helped by this and again some are not.
There was an article on ImmuneSupport.com not so long ago. Some are getting
benicar on the NHS some are not, it depends on the doctor. “Lyme disease
(Borreliosis). A Plague of Ignorance Regarding the Ignorance of a Plague” by
Scott Taylor which can be found in the Eurolyme files also covers this