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

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Lyme Disease & Chronic Fatigue Syndrome - A Patient-Researcher*s

Perspective

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1=EM061709F_

(http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=13020 & B1=EM\

061709F)

 

 

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

interchange

ably 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.

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.

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_ (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=art

icle & id=50 & Itemid=58_

(http://centralfloridaresearch.com/lab2/index.php?option=com_content & view=articl\

e & id=50 & Itemid=58) .]

n The Igenex tests in the USA, _http://www.igenex.com_

(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.

n 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_

(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.

n _http://health.Eurolyme_

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

professionals.

n _http://health.ME-CFS-FMS_infections_

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

Other useful sources of information on borreliosis/Lyme are:

n _http://www.lymenet.org _ (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_ (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_

(http://www.samento.com.ec/) (also has some information on borreliosis/Lyme)

or

_http://www.samento-faq.eu.kz_ (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_

(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_

(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_

(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_

(http://www.drmyhill.co.uk/)

). R Sarah Myhill Limited, Registered in England and Wales: Reg. No.

4545198.

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