Lyme Disease & Chronic Fatigue Syndrome - A Patient-Researcher's Perspective

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Lyme Disease & Chronic Fatigue Syndrome - A Patient-Researcher's Perspective

http://www.immunesupport.com/library/showarticle.cfm?id=8199 & T=CFIDS_FM &

B1=EM080807F

by Anonymous

ImmuneSupport.com

08-01-2007

 

 

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,

Fibromyalgia, and a host of other illnesses Lyme is known to mimic. Though the

focus is on issues in the UK, 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, a CFS 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.

 

-- They can exist in several different forms including a dormant cyst, a

motile spirochete, and intracellular cell wall deficient forms.

 

-- 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.

 

-- 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, 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.

 

-- 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 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.

 

Symptoms

 

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.

 

-- 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 ME/CFS 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 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.

 

-- 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 blockade.

 

-- Magnesium deficiency is also often present, which can give rise to several

symptoms.

 

-- 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:

 

-- 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 Borrelia.

 

-- 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.

 

-- There are more strains of Borrelia that can cause illness than those

defined to cause Lyme disease.

 

-- 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 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:

 

-- Borrelia infections cause malfunctioning of the immune system.

Co-infections only add to this.

 

-- The infection can go into cyst form, which reduces the immune response.

 

-- 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

test.

 

-- 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.

 

-- Recent infection - before the immune response has taken hold.

 

-- The disease is in the late stage. Those who are chronically infected very

often have negative antibody tests.

 

-- Recent treatment with various drugs, including antibiotics and

anti-inflammatories.

 

-- Factors which cause immunosuppression.

 

-- 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.

 

The only decent tests you can do at the moment are private. These are costly

and include:

 

-- 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/lab/content/view/18/33/.]

 

-- 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.

 

-- 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.

 

-- 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. [The AcarusTM

laboratory is the University of Bristol’s dedicated laboratory for the

PCR-detection of arthropod-borne infectious diseases in companion animals (see

http://www.bris.ac.uk/acarus/welcome.htm). Arthropods are biting bloodsuckers

such as

ticks, mosquitos, and sand flies.]

 

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.

 

-- http://health.Eurolyme - for patients and

professionals.

 

-- http://health.ME-CFS-FMS_infections

 

Other useful sources of information on borreliosis/Lyme are:

 

-- http://www.lymenet.org - this site [sponsored by The Lyme Disease Network

of New Jersey] is actually recommended to UK doctors.

 

-- http://www.ilads.org - for health professionals [iLADS stands for

International Lyme and Associated Diseases Society - a multidisciplinary medical

society].

 

Treatments

 

Details of possible treatments are all in the files of EuroLyme. " Diagnostic

Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses "

http://www.ilads.org/burrascano_0905.html 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 Patientsâ€.

http://www.immunesupport.com/library/showarticle.cfm/id/7937 ]

 

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 "

http://www.autoimmunityresearch.org/lyme-disease/ - which can be found in the

EuroLyme files, also covers this

protocol.

 

Discussion

 

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.