WHY DO MY SYMPTOMS IMPROVE ON ANTIBIOTICS BUT DETERIORATE WHEN I STOP?

Why does my arthritis get better when I take antibiotics but deteriorate when I stop?
Why does my muscle weakness get better on antibiotics but deteriorate when I stop?
Why does my fatigue and Fibromyalgia get better when I take antibiotics but deteriorate when I stop?
Why do my chronic symptoms improve on antibiotics for urinary tract infection and then deteriorate when antibiotics stop?
Why do my neurological symptoms get better on antibiotics and deteriorate when I stop?

I hear these questions all the time from people with RA, ME/CFS, Fibromyalgia, MS, Parkinson's - read any Facebook site for these illnesses and you see it over and over.

Well in my case it turned out that I had Lyme Disease but no doubt there are other bacterial infections that are not cleared by just a couple of courses of antibiotics.

Biofilms is one reason why Borrelia ( Lyme Disease) can persist despite long term antibiotics. 

Dr MacDonald pathologist and researcher of Lyme Borreliosis gives us a good lesson on Biofilms of Borrelia- from Lymenet Europe here


We now have entered a third era in Lyme Borreliosis - namely the Biofilm Era. 
Biofilms of borrelia burgdorferi were undreamed of until year 2006 and proven to exist in vitro and recently In ViVO in human skin biopsies of Erythema Migrans and in living Ixodid Tick midguts.
Biofilm science is radically different from Planktonic microbiology. Biofilms are part of the 
repertoire of over 99.9% of microbes. Biofilms form from planktonic microbial forms, but
biofilms provide mechanisms for microbial survival under adverse conditions which would eliminate
planktonic microbes. Biofilms explain Chronic antibiotic resistance. Biofilms are the mechanism
for Chronic Infections of many organ systems. The diagnostic names - infected artificial medical
device, bacterial endocarditis, Helicobacter pylori chronic gastritis, Dental root canal infections,
and may more- have the concept that these infections are solely due to biofilmsand the persistence of 
biofilms in humans despite administration of antibiotics/
In biofilms the microbes {planktonic forms} undergo specialization and are no longer
identical to Planktonic [single free living microbes]. Biofilm microbes are biochemically specializing
(ie have a different biochemistry, different cell wall structure, have cell to cell intercommunications
[nanowires and nanotubes] which enable cell to cell communication between the cytoplasmic compartments, and form water channels to facilitate the flux of nutrients and the removal of waste
from the biofilm community. An envelope of Extracellular matrix invests biofilm communites. This matrix is derived from once living --now dead members of the biofilm community. For Borrelia biofilms
the matrix investment includes Sloughed Outer Surface Membrane {slime layer} of Bb, Extruded 
DNA [eDNA], alginate-like material, and liposomes {micro vesicles} [blebs].

Biofilm communities may be and often are POLYMICROBIAL.

Biofilm communities spread from their sessile site of naissance to the body sites by
two mechanisms:
1. pieces of the Sessile community [Matrix invested specialized microbes] actually break apart
from the parent community and METASTASIZE to other sites.
2. Planktonic Showers rain from the sessile community from time to time and these
planktonic showers re-establish new communities in the mammalian host.

So in the year 2102, we have now entered into the 3rd era of Borrelia pathobiology;
namely the Biofilm Era.

Implicit in the biofilm concept is the ability of DNA transfer/exchange
[lateral DNA Transfer/ horizontal DNA transfer] among specialized members of the biofilm.
With DNa exchange, there is a mechanism for transfer of new virulence factors and new
modalities in antibiotic resistance. Persistence of biofilm infection in mammalian hosts
is in part due to PERSISTER microbes, which may reside within biofilm communities or which may reside intracellularly, or which may reside in so called "Sanctuary Sites"

The clinical spectrum of Lyme borreliosis continues to expand into areas of medicine
in which NAMED diseases of unknown cause [idiopathic diseases] are now incorporated within
the Lyme borreliosis disease complex. The number of skin conditions which are now Lyme disease
cutaneous manifestations has increased, thanks to the work of Dr Klaus Eisendle and Dr Bernhard Zelger to include many new entities, [ and more to be added with the use of FFM techniques]
I summarize these in my lecture on the International Cutaneous and Molecular Dermatopathology
of Lyme Borreliosis [attached , Boston Mass , Date November 4,2012]

In parallel with the expansion of cutaneous Borreliosis conditions, is the expansion of lymphoid
neoplasias linked to chronic Borrelia infections [ analogy with Helicobacter pylori induced
Malignant Lymphomas], Sarcoidosis in China as a borreliosis infection, Idiopathic lethal fibrosing
illnesses [Retroperitoneal Fibrosis, and Mediastinal fibrosis], borrelia to human Tranfections
mimicking human spontaneous gene mutations, Cardiomyopathies secondary to chronic Lyme borreliosis, giant cell arteritis [temporal arteritis] due to borrelia infection, Abdominal aortic aneurysms due to borrelia aortitis, and various intra-ocular inflammations {uveitis, optic neuritis},
Demyelination syndromes secondary to borrelia infections, and transplacental transmission of borrelia with possible lethal outcomes in the fetus in untreated conditions. The list above is only partial and will be added 
to as future medical research utilizing molecular Tools such as DNA probes fleshes out the full spectrum of
Lyme borreliosis and related co-infections.

It is truly a great time to be alive.

With all good wishes,
Alan

An earlier post on biofilms and Borrelia here

Dr Alan B MacDonald has already earned a Nobel Prize several times over in my view for the services he has done to the science and medicine in the field of Lyme Borreliosis I hope I am still around to see him recognised for those services.

LYME DISEASE SYMPTOMS - COMPREHENSIVE LIST.

Most doctors are unaware of the many ways that Lyme Disease can affect patients so I am copying and posting this open letter that Dr Alan B MacDonald sent to Carter Blakely on Wellness Guidelines which includes a comprehensive list of conditions that can be related to an infection of Lyme Disease. Thanks to Dr MacDonald for posting on Lymenet Europe link here

Carter Blakey

I write to support the inclusion of the ILADS Lyme Disease
Objectives for inclusion in Healthy People 2020.

ILADS is an international society of physicians, researchers,and concerned
health care professionals whom are expert in the theory and in the practice
of Lyme Disease and Related Disorders ( Co-Infections which exist simultaneously
in some Lyme Patients). Lyme Disease has the potential to cause tissue 
in multiple organ systems of the human body. The first systems to be recognized
namely skin [Erythema Migrans], Joint [Lyme arthritis] , nervous system 
[Borrelia meningitis and Borrelia induced Bell's {facial nerve} Palsy], and 
Cardiac [ Borrelia induced Bradycardias and Tachycardias- with or without
Atrioventrio-ventricular conduction system "Heart block"] were all described
in the Pre Spirochetal Era [ in the era 1975-1980] before Dr Willy Burgdorfer
described the etiologic infectious agent of Lyme disease, namely Borrelia
burgdorferi. The expansion of Medical complications of Lyme disease
has burgeoned in the Post-Spirochetal Era to now include such diseases as
Mononeritis mutiplex, a Lyme Multiple Sclerosis-like demyelination illness,
a Lyme Amytrophic Lateral Sclerosis-like Motor Neuron Disease, Lyme 
disease in pregnancy with transplacental transmission of the spirochete
across the placenta from Mother to unborn fetus causing Miscarriage , stillbirth
at term pregnancy, and linked to several congenital malformations in the 
developing fetus, Lyme disease associated Neurocognitive disorders including
a Lyme disease Dementia closely resembling Alzheimer's disease, Lyme Disease
Parkinson's disease like illness, Lyme disease Cardiomyopathy, Lyme disease
Temporal arteritis-like illness with blindness, Lyme disease of the Eye with Uveitis,
Optic neuritis, and Ossifying myositis of the extra ocular muscles of the eye,
Lyme disease related Malignant lymphomas [similar in evolution to the
Lymphomas consequent to chronic Helicobacter pylori infection of the gastric 
mucosa] , Lyme disease Autonomic Nervous System Dysfunction, Lyme Disease
Endocrine dysfunction, Specially prominent in the thyroid gland and in the
Pituitary Adrenal Gland systems, Lyme Disease related Chronic Fatigue Illness,
Lyme Disease Myalgic Encephalomyelitis, Lyme disease Transverse Myelitis,
Lyme disease Muscle wasting Illness,Lyme Disease related Hepatitis, Lyme disease associated Hepatitis, Lyme Disease associated Destructive and deforming arthritis, Lyme Disease associated Squamous cell Carcinoma as a consequence of Acrodermatitis chronica Atrophicans, and Lyme Disease Neuropsychiatric Disorders.

Investigators in China have published evidence that the Lyme Disease spirochete
[chinese strain] is recoverable from some cases of Sarcoidosis in Chinese patients.
Investigators in Europe have published evidence that Lyme disease associated
Abdominal Aortic aneurysm exists in Europe.

Lyme Disease is more properly called Lyme borreliosis, because a variety of Borrelia
strains from all continents [except Antarctica] are now isolated, each with a different
strain name and each with a different potential to cause disease and or death
in human and mammalian patients.

Babesia infections [similar to Malaria- but tick transmitted] are co-travellers with
Lyme borreliosis. Borrelia exist as different strains, each with a potential to threaten
the safety of the human blood supply. Babesia infections may be diagnosed by blood smear examination by an expert pathologist. Alternatively, the detection of
antibodies which are specific to each of the strains of Babesia is possible if and only
if the test kits utilized are a perfect match for the suspected Babesia strain,based
on the geographic location where Tick transmitted Babesia infection was acquired.
For example, in the United States of America, Babesia infections on the East coast
are usually Babesia Microti, and on the West Coast Babesia duncani. In Missouri, babesia infections are Babesia strain MO. In Europe, Babesia infections may be due to a number of strains such as[but not limited to] Babesia strain Eo, strain divergens, and strain bigemina. In detection of blood antibodies - which are strain specific, the use of the proper test kit [ kit specificity restricted to one strain at a 
time] is essential to avoid missing the diagnosis of Babesiosis. For example,
test kits designed to detect antibodies to Babesia microti will produce NEGATIVE
results if the patient has Babesia Duncani in his/her blood. Undetected Babesia in Blood bank units , when transfused into human hosts may produce Fatal results. A
Registry of human fatalities due to Transfusion transmitted Babesiosis is on file
at the Centers for Disease Control and prevention. Over 100 cases of transfusion
transmitted babesiosis with a Fatal outcome in the recipients have been recorded
in a 10 year interval by the CDC.Ongoing surveillance for contamination of Blood
donor units from Asymptomatic Blood donors is aggressively being conducted
in New York State . Other States in the USA may have an unrecognized
threat to the blood supply because Babesiosis screening programs are not
in place in All of the 50 states. It is well known that residents of the USA
relocate their residence to other states every 6-7years. It is therefore a real concern that Babesia infections acquired in one state may produce potential blood supply
safety issues when Blood donors relocate their residence.

In addition to Babesiosis ,other Lyme Disease complex co-infections include:
Anaplasmosis,Human granulocytic Ehrlichiosis, Human Monocytic Ehrlichiosis,
Bartonellosis (various strains), and for the Amblyomma american tick [Lone Star Tick] vector: Francisella tularenesis {Tularemia}, Rocky Mountain spotted Fever, Coxiella burnetti infection.

Tick Transmitted infections to man are the fastest growing category of
infectious diseases in the United States of America today. The Statistical 
compilation of such infections, by the CDC, is admittedly an underestimate
of the true numbers of Tick tick transmitted infections in USA citizens and
in immigrants to the USA.

Respectfully,

Alan B. MacDonald MD, FCAP, FASCP
November 9,2012

inmacdonald

 

Posts: 522

Joined: Fri 13 Jan 2012 22:32

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SUCCESSFUL TREATMENT OF MOTOR NEURONES DISEASE, ALS, LOU GEHRIG'S

Dr. David Martz -- unedited footage from Bev Feldman on Vimeo.

Dr Martz was diagnosed with Motor Neurones Disease ( Amyotrophic Lateral Sclerosis, ALS, Lou Gehrig's Disease) in 2003.

Above he talks about his journey in being tested for Lyme Disease but repeated negative serology until eventually a positive DNA test in Urine.

He was treated with aggressive IV antibiotics, he says the change was dramatic.

'Within 1 month the body pain that had required oxycodone had disappeared, the arthritis that had required Intramuscular Methatroxate had totally disappeared.

Within 1 month my energy went from half an hour to with 4 to 5 hours stamina.

By 2 months I was able to cross my legs without using my arms to assist them.

By 3 months I could get up out of a chair myself without anyone having to pull me up.

By 6 months my Neurological findings had disappeared.

I did not return to absolute complete normality but did return to about 70% of my base line self and was subsequently able to open a new practice to see if my response to antibiotics might be shared by others stricken down with the usually fatal diagnosis of ALS ( MND). 

Rocky Mountain Chronic Disease Specialists was opened in 2005 and we saw approximately 900 patients over the next 2 1/2 years.

 About 100 of them had ALS ( MND) we did identify that some patients did respond to antibiotic therapy regardless of the positivity or negativity of their Lyme Disease testing by any laboratories.

We found about 15% of people clearly got functionally better and probably 20- 30% had their disease stabilized, without progressing further.

This is unheard of and we are in the process of preparing this information for publication.'

________________________________

An earlier post on Dr Martz here

DO YOU HAVE SYMPTOMS THAT MIGRATE - Arthritis, Myalgias, Neuropathic pain inc tingling and numbness?

Do you have symptoms that migrate? Such as Arthritis, Myalgias, Neuropathic pain (inc tingling, numbness)

Is your pain influenced by hormonal cycle ? ( worse flairs before, during or after cycle) - sorry to the men

Is your pain resilient to 

standard treatment modifiers (NSAIDS, SSRI's, Neuroleptic mediators, Narcotics)?

Does antibiotic use increase or decrease pain (ie. Jarisch-Herxheimer reaction)  given for such as sinus or UTI infections ?

Is you pain associated with multi-systemic symptoms?

Then you are probably looking at a Muti-Systemic Infectious Disease Syndrome - MSIDS

Watch this presentation by a leading doctor in this field Richard I. Horowitz, MD at a hearing 

hosted by Congressman Chris Gibson

 - starts at 18 mins in .

NB. RA and Lupus Rheumatoid factor correlates with antibody titres against Borrelia - Lyme Disease, something most Rheumatologist don't yet recognise.

In an earlier presentation By Dr Horowitz at the 2010 London ILADS conference DVD available through Lyme disease Action charity  Dr Horowitz mentions that Plaquenil plus  Minocycline often used in treatment for RA patients as a disease modifier regime - actually begs the question are they treating an underlying infection perhaps Lyme Disease and Mycoplasma.

I posted links to this hearing previously, Dr Horowitz presents in Part 1  here   

Watch live streaming video from skidmorevideo at livestream.com

RESEARCH BY SURREY UNIVERSITY COULD HELP PEOPLE IN GUILDFORD AS IT ENCOURAGES AUTHORITIES TO RAISE AWARENESS OF THE DANGERS OF CATCHING LYME DISEASE

Guildford is a delightful town, the County town of Surrey UK. It is situated in a gap in the north Downs and is surrounded by beautiful countryside which is enjoyed by  many - walkers, dog walkers and cyclists.

The University of Surrey was involved in research with the Forestry Commission and Oxford University into 'Assessing and Communicating Animal Disease risks for countryside users.' here 

Abstract

Management of zoonotic disease is necessary if countryside users are to gain benefit rather than suffer harm from their activities, and to avoid disproportionate reaction to novel threats. We introduce a conceptual framework based on the pressure-state-response model with five broad responses to disease incidence. Influencing public behaviour is one response and requires risk communication based on an integration of knowledge about the disease with an understanding of how publics respond to precautionary advice. A second framework emphasizes how risk communication involves more than information provision and should address dimensions including points-of-intervention over time, place and audience. The frameworks are developed by reference to tick-borne Lyme borreliosis (also known as Lyme disease), for which informed precautionary behaviour is particularly relevant. Interventions to influence behaviour can be directed by knowledge of spatial and temporal variation of tick abundance, what constitutes risky behaviour, how people respond to information of varying content, and an understanding of the social practices related to countryside use. The frameworks clarify the response options and help identify who is responsible for risk communication. These aspects are not consistently understood, and may result in an underestimation of the role of land-based organizations in facilitating appropriate precautionary behaviour.

David Uzell was the team member from the Psychology dept at University of Surrey, Guildford. This is a pdf from that research 


'Making sense of unfamiliar risks in the countryside: the case of Lyme
disease'
Afrodita Marcu, David Uzzell, and Julie Barnetta



'These results suggest that policy makers and countryside authorities should not shy away from providing information on possible health risks as it is unlikely that this would act as a barrier against countryside use.'


Thank you David Uzzell, here is hoping that in time this will encourage organisations to take a proactive approach to warning the public of the possibilities of tick borne diseases.


My immediate concern is for people visiting Guildford because there is a growing number of ticks in this area and a growing incidence of cases of Lyme Disease.


I have spoken to people with Lyme Disease who have been infected from tick bites in their gardens, Woodland, Downland and along the River Wey. 


Several cases of Lyme Disease have been diagnosed in Merrow,  myself and 3 others within 200meters of my house, all our gardens side onto woodland, the other side of this woodland Pheasants ( competent hosts for Borrelia, Lyme Disease) are bred in Clandon Park. The woods and our gardens have ample hosts to feed the nymphal ticks before the ticks seek out their preferred host a deer, also found in abundance. 


Thankfully local doctors surgeries are becoming aware and hopefully more cases will be treated in the early stages and prevent others from suffering years of a chronic illness because the doctors missed those early signs of bites, rashes, summer flu' and migrating arthralgias. 


I have recovered on long term antibiotics. 


How many patients living around the Guildford area suffer from symptoms of Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal Disease, Polymyalgia Rheumatica not to mention so many other health problems, heart block, neurological problems, psychiatric problems and have never been properly assessed to see if it could be caused by Lyme Disease. With 50% not seeing the tick as the smallest is the size of a poppy seed, 40% don't get the Bulls eye rash, and blood tests can miss 50% of cases it is so important to raise awareness.


Sadly at present patients are the ones who drive awareness campaigns and not the Authorites. Guildford Borough do now have something on their website to warn people but not many of us would think to check their website  if we do not know Lyme Disease can be caught from tick bites in the Guildford area. here 

MORE LYME DISEASE AWARENESS IN AUSTRALIA

Thanks to Dr Mualla McManus for this excellent Video posted on the Karl McManus Foundation website here

Cases have been misdiagnosed as Arthritis, Multiple Sclerosis, Motor Neurone's, Parkinson's, and as in my case Polymyalgia Rheumatica, Fibromyalgia, ME/CFS and the list goes on.

Australia have been advocating hard recently and here is a link to several programs presented on TV in Australia here 

Many thanks for all their work in bringing more awareness to this dreadful disease which can more easily be treated in the early stages but capable of causing such horrendous ill health if left to develop into a Chronic Illness.

Our Health Authorities ought to be ashamed of their lack of efforts to understand this disease in it's chronic form.

Update more news from Australia here 

ARTHRITIS, MUSCLE WEAKNESS ANTIBIOTICS, MONKEY BUSINESS - WHO KNEW WHAT AND WHEN?

The recent Embers study on persistence of Borrelia Burgdorferi in Rhesus Macaques following antibiotics treatment  here is opening up much needed debate.

Recently Lyme Policy Wonk has been running a series of posts about this research available here 

The comments are well worth reading to the latest post on the above link.

So many questions need answering and Philip Baker doesn't seem to be convincing many in his answers.

Hopefully this Embers study proving persisters will start the process of who knew what and when?

No matter that Baker says 'Furthermore, the significance of the results reported by Embers et al. with respect to human disease are far from clear and remain to be established. Sufficient information was not provided to indicate that the antibiotic regimen used was adequate to clear the disseminated infection, specially since ceftiofur — not ceftriaxone — was used. Since ceftiofur differs significantly from ceftriaxone in structure, one can not assume that it has the same PK/PD properties or even the same MID. Furthermore, ceftiofur has not been approved for use in human studies and its efficacy for the treatment of borreliosis — in humans and/or in animals– has not been established. More important, no evidence is provided to indicate that “persistors” — even those taken up by ticks in the xenodiagnosis experiments are infective and cause disease.'
There has been an amendement to the original study saying that in fact it was Ceftriaxone that was used not Ceftiofur see PLoS ONE here 
He might argue about the subtle differences of Ceftiofur and Ceftriaxone but he cannot argue over the fact that 60 days of Doxycycline followed 30 days of Ceftiofur and even with that was unable to clear persisters. Here in the UK even if you are lucky enough to be diagnosed you rarely get prescribed more than one or two weeks antibiotics.


Furthermore he questions if persisters -----are infective and cause disease. Patients are sick and some of us respond well to antibiotics given long term we didn't have time to wait for research to prove how and why.


Most importantly the study itself says 'Finally, the use of variable and pulse-dosing regimens of antibiotics may improve efficacy [43] and this warrants testing in an appropriate model.'


 Allen Barbour  one of the authors of this study is sufficiently convinced in the persistence of this organism that he quotes it in his applications for vaccines '[0145]“This mechanism of genetic switching appears to be different from any other antigenic variation mechanism described in bacteria or protozoa and has important implications in Lyme disease. By combining different regions of the silent vls cassettes, it is possible for many different vlsE serotypes to coexist the same patient. It may be impossible for the host to mount a protective response against any one of these clonal populations, because of the small number of each type. Even mounting a response against one serotype would not protect against rapidly evolving, new serotypes.”
Application number: 12/853,019
Publication number: US 2010/0317026 A1
Filing date: Aug 9, 2010


Anyway less of my comments go to Lyme Policy Wonk  here to get an idea of who knew what and when. 


What has allowed this research to be suppressed for 12 years whilst patients have been denied treatment?


Here in the UK there are a growing number of patients being diagnosed with Lyme Disease and yet what efforts have been made by our Department of Health to raise awareness of this disease which can be avoided with simple precautions and can be treated more easily if caught in the early stages?


I was lucky my arthritis and muscle weakness responded well to antibiotics and led my GP to consider Lyme Disease as a differential diagnosis. I recovered, how many patients with Arthritis and muscle weakness get better on just oral antibiotics.


I was diagnosed with Fibromyalgia, ME/CFS, Musculo Skeletal Disease Polymyalgia Rheumatica none of the medications given for those illnesses made much difference thankfully antibiotics did.


How many more people will suffer while those responsible for our health play 'monkey business' with the science?

UPDATE OF MY LYME DISEASE

This blog is not really about my Lyme Disease but more about raising awareness  looking back I realised that I needed to give a brief update.

My story is in the right hand side column of this blog but was posted  here 

It was about February 2011 that I again stopped taking antibiotics, so far none of the Arthritis or muscle weakness symptoms have re appeared and although some symptoms continue such as facial tingling and sinus problems (which may or may not be Lyme related) I am doing really well. Apart from a couple of weeks clarithromycin for ear infection September time, I have not needed any medication since February 2011.

How many people so disabled with Arthritis and muscle weakness that they get retired early on Ill health grounds make such an amazing recovery on just oral antibiotics?

Winning the Lottery is nothing compared to regaining my health and life.

Daily I am thankful for all those Lyme Advocates who have helped raise awareness of the controversy of Lyme Disease that leaves our Health Departments in ignorance of the science that supports ILADS view and opposes the restrictive Guidelines produced by the IDSA ,  leaving so many patients Worldwide without diagnosis and treatment that can help them.

ANGRY

'ANGRY'


Written in September 2011 by Lyle from London.

I am sure I am repeating what many people feel, but I wanted to say this:

I am angry that the combined forces of the world's medical and pharmaceutical
powers haven't seen fit to carry out concerted research to establish a test that
provides a 100% proof of the existence or non-existence of Borellia bergdorferi
in the human body

I am angry that that same vastly wealthy, knowledgeable and powerful collection
of people has done little effective research into finding a drug or treatment
that definitively removes borellia bergdorferi

I am angry that significant numbers of the world's medical profession do not
even know of the existence of Lyme diease, and would not recognise a bulls-eye
rash as a definitive diagnosis of Lyme disease, let alone consider Lyme disease
as a diagnosis for the multitude of other symptoms it can cause

I am angry that significant numbers of the world's medical profession adhere to
the belief that 2-4 weeks of docycycline will remove borellia bergdorferi from
the human body despite the massive and continually increasing evidence that this
is not true

I am angry that there are doctors in our supposedly enlightened culture who
disdain their patients when they express the concern that they may have Lyme
disease

I am angry that multitudes of doctors believe that the results from simple tests
for the presence of Lyme disease are 100% accurate, despite evidence and
statements to the contrary from the organisations carrying out those tests

I am angry at the ignorance of medical practitioners who believe that Lyme
disease only exists in limited geographic areas, despite extensive evidence that
ticks will attach themselves to any warm blooded creature, including birds who
are self-evidently not limited to specific geographic areas

I am angry that my joints are unbelievably painful if challenged by any but the
most mundane movements despite one month of intra-muscular penicillin and oral
Cefuroxime supported by Allicin, Banderol/Samento in sequence and a mass of
supplements

I am angry that there is not a clear path that can be taken by all suffers from
Lyme disease that will clear their symptoms and allow them the lives they used
to lead - therefore saving society/insurers/government the vast ahnd rapdily
growing amounts of money required to help alleviate their pain, inability to
work, need for support

I am angry that there are people far worse off than me who have struggled for
years to return to some semblance of a quality of life and I can do nothing to
help

I am angry that my healthy and active life has been taken away from me and the
only avenue back is a long, very slow, very expensive and very painful clawing
back using drugs and supplements that both I and my doctors hope will work,
because none of us really knows for sure what the answer is or what the problem
is - we just know that 2-4 weeks of docycycline is not the answer

I am angry that there are thousands of people out there who cannot afford the
same treatment and have to stumble along without the medical help they so sorely
need

I am angry that there are people on this earth, let along doctors governing
medical organisations, who cannot see the tsunami that is growing around us all
and who insist on prosecuting the medical professionals who are trying to help
us get well

To those doctors I say the following:

- The current tests for Lyme disease are known to be inconclusive - why are you
not urging your profession and academe to focus on research to develop effective
testing regimes?

- If Chronic Lyme disease does not exist then please tell me and thousands of
other sufferers, what it is that is causing our symptoms - we are not depressed,
and we are not imagining them.

- In the absence of conclusive tests - why do so many of your profession blame
the patient rather than treating the symptoms?

- Evidence exists that long term antibiotic treatment has been successful in
large numbers of cases. Why do you not pursue that path? Why do you attack it
when the 'accepted' path has not demonstrated success? The 'accepted' treatment
for ulcers was reduction of stomach acid until Barry Marshall and Robin Warren
proved in 2005, by infecting and then treating themselves, that ulcers were
caused by helicobacter pylori. Does this not suggest that we could face a
similar situation with Lyme disease?

- Why are you wasting even a moment of your lives attacking doctors who are
trying to treat us when you could be focussing on helping us, the patients who
suffer every day?

Thank you Lyle from London for giving permission to re post your comment which you posted on Eurolyme.

Your experience was not dissimilar from my own, a history of my illness is in my right hand side bar of this blog.

Your recent post 'Improvement there is hope' starts by saying 'Six months ago I couldn't put my socks on or sit down without pain. When I stood up it was like a 90 year old creaking out of a chair, hobbling along for a while until the joints loosened up again.' 

ending :-
'Just wanted to say that the right treatment really does seem to work - if I continue to improve at the very slow but steady pace of the last two months then the future is bright. Yesterday I ran up the stairs - haven't been able to do that for the last 8 months!
Lyle'

How many patients with arthritis and muscle weakness and many other symptoms could in fact be suffering with an undiagnosed case of Lyme Disease and like you and I and many hundreds of others get well on long term antibiotics. It is like winning the lottery but actually even better what price can be put on regaining a healthy, pain free and without disability body.

THERE WAS NO MORE INFLAMMATORY DISEASE WHEN THE BACTERIA WERE ELIMINATED

In some genetic backgrounds of mice, acute inflammation is sufficient to fight off infection and resolve disease. In other mouse strains, the pathogens, or in this case the bacteria, get past TLR-induced inflammation and remain symptomatically undetectable in cells and tissues (Barthold, etc); Barthold et al. have found that no matter how severe or mild the disease in any of the genetically inbred strains of mice, there was no more inflammatory disease when the bacteria were eliminated. If bacteria find a new disguise, and then come out of hiding, does the process start over again, resulting in chronic, or relapsing remitting, symptoms of inflammation, until the pathogen finds a new disguise or a new hiding place? Or, even if the Borrelia remain dormant, does exposure to a different pathogen that also produces TLR agonists re-trigger the expansion of latent pro-inflammatory cells that were initially stimulated by Borrelia TLR binding proteins?

From Dr Karen Newell Rogers presentation at 2011 Lyme and Tick borne Diseases National Conference details here

ENGORGED TICK

Look what I found crawling on my kitchen floor today!

An engorged tick not something you want to find when you have spent years suffering with Lyme Disease and years regaining your health.

I suspect it has dropped off our dog Beth a Springer spaniel and not my husband or myself.

Beth has been struggling with arthritis although she is an elderly lady. As she has often had ticks attached and engorged I suspected her arthritis like mine could be as a result of Lyme Disease although the blood tests were negative but I guess as they do an ELISA only then no surprises there to get a negative result.

I couldn't face another battle with vets for antibiotic treatment

so just in case a few months ago I tried her on Samento. What a difference she bounces around now as she did a few years ago with not much sign of arthritis and no need for anti inflammatories.

So here's hoping that if this tick was attached to her and infected her Samento will take care of any infections.

I will be keeping an eye on myself and husband too.

Just shows you can never be too careful even when you are Lyme aware.

DO YOU HAVE SYMPTOMS OF LYME DISEASE?

Lyme Disease masquerades as many different illnesses you may have it and not know it.

My symptoms were migrating arthralgias, arthritis, muscle weakness, peripheral neuropathies, but many others suffer cognitive difficulties, depression, confusion, neurological illnesses.

I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, muscle Weakness, musculoskeletal Disease, Polymyalgia Rheumatica before finally after 4 years Lyme Disease. Patients I am in touch with here in the UK have been diagnosed with depression, MS, Parkinson's, Motor Neurons before being diagnosed with Lyme Disease.

Turn the Corner has done and is doing research on our behalf and training doctors so that others can be diagnosed earlier and treated adequately and not have to go through years of hell living with this dreadful disease.

Thank you Turn the Corner, visit their website here

IDSA GUIDELINE AUTHOR ON FAILURE OF LYME DISEASE TESTS

Alan Barbour's patent tells the tale

This one statement is powerful, contradicting the stance that Barbour and the IDSA Lyme Disease Guideline supporters have made for years.

Alan Barbour in one paragraph summarizes strain variation, immune system evasion, persistent infection, failure of Lyme tests and the uniqueness of Borrelia amongst other pathogens.

"This mechanism of genetic switching appears to be different from any other antigenic variation mechanism described in bacteria or protozoa and has important implications in Lyme disease. By combining different regions of the silent vls cassettes, it is possible for many different vlsE serotypes to coexist the same patient. It may be impossible for the host to mount a protective response against any one of these clonal populations, because of the small number of each type. Even mounting a response against one serotype would not protect against rapidly evolving, new serotypes."

Read an excellent report on this patent by Camp Other Blog, helpful for those who are not able to understand the technicalities, at the link here

To access the full patent click here

Another extract:-

[0006] These organisms are closely related and cause similar manifestations with multiple stages: an expanding rash at the site of the tick bite (erythema migrans), fever, lymphadenopathy, fatigue, and malaise; effects of disseminated infection, including carditis, meningoradiculitis, and polyarthritis; and chronic manifestations including arthritis and neurologic disorders. Lyme disease is often difficult to diagnose because of shared manifestations with other disorders, and it can also be refractory to treatment during late stages of the disease."

My Chronic symptoms of Arthritis, Muscle Weakness, Fatigue and peripheral neuropathies turned out to be Lyme Disease and on long term antibiotics have all resolved, how many more patients with similar symptoms as a result of a tick bite could be helped on just simple antibiotics?

I posted earlier on Barbour here

LYME DISEASE IN THE NEWS

Lyme Disease in the news thanks to Total Essex covering a story on Ruth Black. here

As many local newspapers do not keep these stories on line indefinitely I will copy and post below.

HUTTON: Mum Ruth Black left virtually bed bound as NHS 'fails to identify illness'
By editorial@gazettenews.co.uk

A WOMAN has accused the NHS of ruining her life, after medics failed to identify a debilitating illness which left her virtually bed-bound.
Mum-of-two Ruth Black, 34, spent eight months battling the symptoms of Lyme disease, but only diagnosed the condition after research on the internet.
She is now receiving treatment for the disease but fears it could take her up to a decade to recover.
"My experience with the NHS was horrific," Ruth said.

"They have cost me my health and left me with a chronic condition which could have been easily treated if it had been diagnosed earlier.
"I was a very lively, healthy woman before I became ill.
"It has completely devastated my life."

Ruth, who lives in Hutton with husband Cliff and sons Jamie, 6, and Lewis, who is 20 months old, fell ill in March 2010.

This prompted a series of visits to her GP over the next few months and trips to hospitals in Romford and Basildon.

Ruth said: "My first symptoms were just general tiredness.
"I felt exhausted and disorientated and was coming out in fevers. Then I started to get bad back pain, but I didn't think about it as I thought it was due to my carrying Lewis around."

However, as the weeks wore on, her symptoms became worse.
"I started itching like crazy and I had severe pain in my muscles.
"My skin was burning and it felt like I had been doused in petrol."

After a range of tests, including a brain scan and blood tests, Ruth gave up on the NHS and decided to visit a private hospital.

But she still could not get a diagnosis and so decided to turn to the internet for help.

"The more I researched, the more my illness seemed to fit a condition called Lyme disease," Ruth said. "The bizarre thing was that I had already been tested for Lyme disease via the NHS and privately."
During her research, she found the tests used by the NHS to diagnose Lyme disease are "very disputed".

She also eventually found a private clinic in Hertfordshire which diagnosed her with the condition in November last year.

However, because of the time it took to identify the illness, it is now chronic, meaning Ruth could take a long time to recover.

"It is a very, very slow process," she said. "I know people that have been on treatment for ten years and they are still not right."

Ruth is now taking antibiotics but, in another blow, is not eligible to receive them free on the NHS.

As a result, she now has to spend around £350 a month on drugs and other supplements.

She said: "The fact I am now left paying for all the treatment is a very bitter pill to swallow."

Cliff, 51, added: "It is difficult enough for people to battle against this horrendous illness without having to battle the establishment as well.
"This has impacted on our family, and I cannot understand how people are subjected to the lack of care and understanding that is required from our so-called health professionals."

Dr Kannan Athreya, 44, has been a GP at The Surgery in Mount Avenue, Shenfield, since 1996.

He told the Gazette that the internet could be a "useful tool" for helping people diagnose their illness, but stressed that it could also have its pitfalls.
"It is a very useful tool provided you know how to use it," he said.

A spokesman for Queen's Hospital, in Romford, said: "We have not had any contact from Mrs Black regarding the treatment she received.
"Lyme disease can be very difficult to diagnose, with tests often only showing an infection once the disease is advanced.

"If Mrs Black chooses to contact us we will, of course, look into her complaint."

A spokesman for Basildon Hospital said: "All patients brought to A&E as emergencies are given thorough investigation and treatment according to the symptoms they present.

"Sometimes it is appropriate for A&E to treat patients for immediate symptoms and then discharge back to their GP."

Meanwhile, NHS South West Essex, which runs GP services in Brentwood, said: "We cannot comment on this case without a review of the patient's case notes."

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However perhaps even more telling are the comments left on this article:-

I had no idea this was such a big problem but the messages on this website would seem to suggest so. Very interesting and I'm glad it has been brought to my attention.
Unamit, Chelmsford
commented on 11-Feb-2011 01:01

Lyme (Borrelia) infection is usually caught from infected ticks, which are found everywhere, as they are carried by birds and all domestic animals and wildlife. Hosts for ticks can be any small animal, like hedgehogs, so allotments often comprise hot-spots for Lyme.

Even if you remove the tick before it has time to transmit Lyme, you can still get serious co-infections from the tick, such as Bartonella ("cat-scratch fever"). Babesia is a malaria-like infection. There¿s a list of other infections including Ehrlichia, Mycoplasma and others which may not yet be recognised in the UK like Tick-Borne Encephalitis.

Lyme Disease can be transmitted by other biting insects like stable-flies, fleas, lice, mites - and can be transmitted from a mother to her offspring, either via the placenta or through the milk. Or like its cousin syphilis, by sexual contact. It appears to be a major cause of autism in children and also Alzheimer's.

The scary thing about Lyme (Borrelia) infection is its effects on the body. It can mimic virtually every other disease. The bacterium itself is the most sophisticated known to man. Being a corkscrew-shape spirochaete it resembles its relatives like Leptospira (Weil's Disease) caught from rat's urine, and Syphilis, but it has many more genes and plasmids to generate its outer surface proteins (OSP's) so it can change its coat to avoid detection by the body's immune system. Which is a reason why we get negative blood tests, as our current blood tests (serology) are very primitive and only pick up antibodies generated by our immune systems in response to OSP's presented to it.

Simple bacteria often move around by being driven by a rotating filament attached to one end, that acts just like an outboard motor, spins and moves the bacterium. Borrelia has a bundle of flagellae wrapped around its cellular contents, which act like an "inboard motor" and drive the bacterium in a corkscrew manner which enables it to penetrate every cell in the body.

Classically it penetrates the cartilage of joints and causes an arthritis that appears to move from joint to joint, so-called "migratory arthritis", and which occurs even in young children. In fact it was first characterised because of an outbreak of arthritis in children. Its main effect is to penetrate nerves and disrupt them, technically "neuro-borreliosis". Facial nerves are attacked and you get classic Bell's Palsy with droopy eyelids and jaw. This can spread to the intestine and cause signs of constipation and colic, known as Bell's Palsy of the Gut. It can affect nerves feeding glands so there are many effects like diabetes & thyroid problems. Many people recover from allergic situations when treated for Lyme.

If a suspected Lyme infection is treated within the first few (4 to 6) weeks of the actual infection, with reasonably high doses of even simple penicillin, it may be eliminated. But many people don't know whether they've been bitten, let alone when, as they may not have the classic tick-bite "bull's eye" rash, said to be unique to Lyme.

Once the bacteria have penetrated deep into the tissues - they prefer the low oxygen levels found in cartilage, tendon, etc - they can be difficult to reach with antibiotics. High doses and long courses are absolutely essential. Rotating antibiotics can help.

The bacterium can also hide away in the form of cysts, coccal and CWD (mycoplasmal) forms, and in biofilms where they are neither recognised by the immune system nor touchable by antibiotics - just the same as Syphilis and Tuberculosis. But once established, you may have the infection for life, and you can only control, perhaps never cure it, even with repeated courses of antibiotics.

One myth is that all antibiotics have potentially serious side effects, such as you may develop an allergy to penicillin. None of the side effects are unconquerable and are often worth the risk considering the life destroying effects of Lyme Disease.

It is normal to prescribe long-term antibiotics for certain well-known diseases like TB, Brucellosis, Syphilis and even acne. Lyme is at least as important as these.

The problem of resistant bacteria, like MRSA in hospitals, has everything to do with the hospital environment and hygiene and very little to do with the use of antibiotics.

In fact, it is "under-treatment" of infections by doctors that has allowed resistant organisms to survive. If they used higher doses and longer courses in the first place, the organisms would not have had a chance to develop resistance.

Drug resistance in Lyme doesn't seem to be a problem when antibiotics are rotated properly - it's co-infections like Babesia that cause the problems. Rarely does Borrelia come on its own. Ticks often transmit other bugs, called "co-infections". Babesia is a malaria-like parasite that only responds to anti-malarials.
Laurence Swift (retired vet), Herne Bay, Kent, ENGLAND
commented on 10-Feb-2011 19:40

For anyone struck down with the many and varied symptoms of this debilitating disease it can be a very frightening experience excerbated by the ignorance about diagnosis and required treatment which varies considerably across the country. Fortunately when I was struck down,bedridden and finally hospitalised in 2008 I was in the right area to get a confirmed diagnosis and treatment to enable my to regain nearly but not all my pre illness health.

This illness should not be a postcode lottery for if diagnosed and treated in the early stages it prevents the extreme and debilitaing symptoms which for some can be permanent.

It needs to be recognised across the board no matter which part of the uk you live in.

My own local authority have a web page dedicated to tick awareness, Lyme disease and associated issues and yet my county council appear ignorant because on a secret shopper phone call to them I hit a brick wall- I ask how can this be.?

Every organisation, health authority, outdoor workers employer, countryside user, park control authorities, etc etc etc needs to be clued up on lyme disease ,the risks, the precautions and what to do if you think you may have had a tick bite regardless of whether the tick is carrying the borrellia bacteria. ( even IF you see a tick attached, many are seed size,it won't tell you it carries the bacteria!)

Simple precautions can help to eliminate the risk from contracting lyme disease but unfortunately it is often long after a bite, which a victim may not even been aware of, before symptoms start and they may not always be associated with lyme and a tick bite.

Finally to the gentleman who in a earlier comment wrote 'oh shut up' I sincerely hope you/family member/friend never get infected by lyme because I can assure you it would definately make you change your attitude.
Sue Mitchell, West Sussex
commented on 10-Feb-2011 19:02


Thank you to Ruth and the Essex Chronicle. Ruth's story is very similar to my own. I had decades of illness before I finally got the right diagnosis.

Years ago I started to get episodes of flu-like illnesses and a sort of brain fog and fatigue that rest or sleep wouldn't shift. I'd recover from each one and feel fine, but a few weeks later I'd be ill again. Doctors told me I'd probably picked up a virus, or I had post-viral syndrome, or it was caused by stress, or I was working too hard and needed a holiday. As the years went by my health very gradually deteriorated further. I saw numerous GPs and I was referred to different specialists in the NHS, including an infectious diseases specialist who told me I was suffering from anxiety and I wasn't ill at all.

Each time I was prescribed a short course of antibiotics I felt much better, but when I finished it I'd become ill again.

At one point I was admitted to hospital and given a blood transfusion when my blood count suddenly crashed for apparently no reason, but no diagnosis was offered.

I carried on trying to lead as normal a life as possible, but eventually I became so ill I could barely function and I was diagnosed by the NHS with CFS. By then I was also having repeated migraine and vomiting attacks, dreadful cramps in my legs and feet, I'd developed loud tinnitus, I seemed to have become dyslexic and my balance was poor. I was very weak, but out of desperation I managed to do a little research on the internet and kept coming up with Lyme Disease as a match for my symptoms.

I found the Lyme Disease Action, BADA-UK and Eurolyme websites and they have been a great source of information and support. I discovered a specialist private clinic that treats Lyme Disease and it's through their expertise that I discovered I have 3 strains of Lyme Disease and 2 other infections ticks often carry.

My health is finally improving for the first time in years thanks to their treatment, but it will take a long time for me to regain anything approaching normal health after so many decades of untreated neurological infections.

My life has been completely derailed by this awful illness. I'm paying for my treatment myself, having sold my home, as the NHS has declined to fund my treatment costs. It is indeed a bitter pill to swallow.
Lesley, Hertfordshire
commented on 10-Feb-2011 11:25

do shut up George
Anon, Maldon commented on 10-Feb-2011 08:20

I too have Lyme disease, confirmed by blood tests from laboratories in the USA and Germany. I cannot access care for my condition on the NHS and like Ruth have to pay privately for my treatment and antibiotics.I have now been in treatment for nearly 2 years and still have days when I am overwhelmed by fatigue and have to stay in bed. However, I am also now having days when I can function well.

The neglect of patients with Lyme disease is disgraceful.

I worked for the NHS for 14 years and was proud to do so. However, I now feel completely let down by the organisation I once thought so highly of.

The NHS needs to educate their staff about Lyme disease and get up to speed with accurate diagnosis and treatment.

The numbers of infected patients are increasing year on year.
Catherine, UK
commented on 09-Feb-2011 20:36

Another one, thank you very much to Ruth and Essex Chronicle for publishing this story.

One day, just one day, someone will eventually join the dots and realise this is a major problem.

How many people are trying to 'manage' their symptoms under the ME, CFS, Fibromyalgia, etc. labels when really they should be continuing to look for the cause and treating that?

If there are any doctors reading this, I would be very grateful if you would take some time to look up the many reams of research from very well-respected experts out there and stop assuming we don't have Lyme in the UK. Your patients will thank you for it.

So, stop hiding away from it just because it's political, let's get it out there!
Jan, Ipswich
commented on 09-Feb-2011 15:53

Is there no Dr House in the house ?
George, Chelmsford
commented on 09-Feb-2011 15:17


Ruth's story is like so many more here in the UK and sadly that also includes children who after all are the most vulnerable.

There is not one Paediatrician in the UK who has bothered to throughly understand this disease.

Our doctors are advised by the HPA who say that the IDSA guidelines are authoritive and yet there is a considerable body of evidence on this emerging disease that contradicts those guidelines. http://www.ilads.org/lyme_disease/lyme_slides.html

Ben Luft's research sequenced the Genome and he found that some strains of Borrelia are simple and easy to cure whilst others are more complex and harder to treat.(Of course in the UK we have other species which further complicates things)

Then Ben Luft says about the many co infections that can also be transmitted by the bite of the tick.
(We need to stop and consider that in their early stages these ticks will have fed on vermin and other small mammals before injecting that blood and infections into us.)

Luft presented at the following Workshop. Congress mandated the NIH to hold a workshop on the state of the science in Lyme Disease and other tick borne illnesses this was held by the Institute of Medicine and can be watched at the videocast here
http://www.tvworldwide.com/events/iom/101011/

This leaves those watching in no doubt as to the complexities of tick borne illness, it is far too early to be imposing restrictive treatment practises.

I was fortunate in having a very thinking GP although it took 5 doctors and 3 Rheumatologists 4 years to diagnose me with Lyme Disease.

It was a chance course of antibiotics which improved my symptoms and led GP to suspect Lyme Disease, I had attended the surgery at the time of bites, bulls eye rashes, summer flu and migrating arthralgias ( all red flags for Lyme Disease).

As my symptoms progressed I was diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculoskeletal Disease and then Polymyalgia Rheumatica and unfortunately put on steroids which are contra indicated if you are fighting a bacterial infection.

There have been several other patients diagnosed with Lyme Disease now at my surgery and in my locality near Guildford, once doctors start to look they will find.

I am 100% recovered now but it has been a very long struggle, I was Retired early from the Civil Service on Ill health grounds, at my worst I had difficulty standing from a chair and walking across a room and for 3 1/2 years had difficulty walking up or down stairs properly now I have no pain or disability and can garden and cycle again. How amazing is that.

There is important information available through UK charity at www.lymediseaseaction.org.uk

This is a Medical disgrace of International proportions because everyone cow tows to a small group of biased doctors who wrote the outdated and much contested IDSA Lyme Disease Guidelines, guidelines which were based more on the opinions of those who receive significant financial rewards from their involvement with Lyme Disease and not on all the scientific evidence available.

The makers of the test kits used in the UK Trinity Biotech say that a negative test can not be used to rule out Lyme Disease, it's an antibody test!! and yet Doctors are not made aware of this and therefore say to patients you can't have Lyme.

What they fail to know is that the tests can miss up to 50% of cases.

Imagine spending the rest of your life with a painful, debilitating and crippling illness when just simple oral antibiotics can restore your health if it is found to be a bacterial infection Lyme Disease and co infections.
Joanne Drayson, Guildford Surrey
commented on 09-Feb-2011 14:48

The situation with Lyme disease is dreadful, and not just in the UK, although perhaps our country has had the worst deal in Europe as far as warning signs to the general public go.

At least in Germany and other EU countries, GPs surgeries have warning posters. Why don't we?

In the Netherlands, 65,000 people signed a petition last year demanding treatment for chronic sufferers, and a public health strategy to combat new infections.

Here in the UK a similar petition is under weigh, here at:http://www.ipetitions.com/petition/uklymepetition/and I urge everyone to take a look at the signatures and comments, and see that Ruth's story is being repeated all over the country. And please sign to support us!

Only those with private funds are being treated properly.

Many people with Lyme don't know they have it - but they may be diagnosed as having Multiple Sclerosis type symptoms, ME or Chronic Fatigue Syndrome, Parkinson's type symptoms, jaw and dental symptoms, strange optical problems, even dementia, and mental health problems.

Lyme was first recognised as being endemic in the UK in 1989, but only a few people know what a tick looks like or that its bite is painless and the newly-hatched baby ticks are as small as a poppy seed.

Why this has been kept so hush-hush is very puzzling, as each day there will be more people infected because they had no idea that Lyme is in Britain.

My own GPs practice head said "It's only in deer ticks" and that such ignorance exists in GPs is incredible - Lyme is carried by the sheep tick, and by vole ticks and mouse ticks and bird ticks, and you can get bitten in your own back garden or a park in a city.

A big "Thank you" to Ruth and your paper for bringing this state of affairs into the public eye, because each article like this, in the absence of a government strategy, may help hundreds or thousand of people to learn about Lyme.

I myself was left for 20 years before I had a diagnosis, being labelled instead as having post viral fatigue then ME and Fibromyalgia. I am now trying to survive on state benefits having sold my house long ago, and I cannot afford any treatment at all.

I worked and contributed until I was 38 years old, paying my taxes and National Insurance, only to be left infected with a disease worse than AIDS and syphilis and TB combined.

The symptoms seem to move around the body, and many people have Fibromyalgia pains, but some might have palpitations, or even a stroke or heart weakening as a result of Lyme and the other bacteria and viruses carried in ticks.

The infection can lie dormant for a month or even longer after the bite. It's a hard disease to diagnose, but the health services are doing none of us any favours by playing down the fact that Lyme is not rare at all, and by also saying their tests are 100% accurate, when all of the scientific literature has said again and again that the tests are very variable and just cannot be relied on to say whether the person has the disease or not.

Even the test kit manufacturers say this. But the Lyme testing labs do not pass that information on to any doctors, not even the top infectious disease doctors as far as I know.

This is a scandal which has been simmering under the horizon for 40 years and it needs top thinking directed at the problem rather than the pretence that there is no problem.

Denise Longman MSc, Lowestoft Suffolk
commented on 09-Feb-2011 12:17