LYME DISEASE TREATMENT NHS

Lyme Disease treatment on the NHS has been a very controversial area for those patients who fail the usual couple of weeks antibiotics usually given by NHS doctors following the HPA guidance. That is when they are treated in the early stages of the illness, because so many of us missed that window of opportunity despite seeking medical attention for tick bites, bulls eye rashes, summer flu' and migrating arthralgias.

Lyme Disease Action charity has been working with the James Lind Alliance reviewing the available research on diagnosis and treatment of Lyme disease looking for areas of uncertainties. 

The James Lind Alliance is funded by the National Institute for Health.

Links to the Lyme disease Action website here

Links to more than 39 uncertainties here

Doctors and patients or their carers can vote on the top ten priorities for research before the 9th December 2012 here

Hopefully this research will be brought to the attention of doctors who frequently fail to even recognise the certainties of Lyme Disease such as the EM Rash -

'Does EM provide an ‘accurate’ clinical diagnosis of LD? 

Yes it does. See Stanek G, Fingerle V, Hunfeld K, Jaulhac B, Kaiser R, Krause A, et al. Lyme 
borreliosis: clinical case definitions for diagnosis and management in Europe. Clinical 
Microbiology and Infection. 2011 Jan;17(1):69–79.

In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'

I look forward to more information about these uncertainties being relayed to our treating doctors and consultants and changes to existing guidance from the Dept of Health via the Health Protection Agency reflecting that there are many uncertainties, instead of the current restrictive guidance based more on opinion than scientific data. 

By identifying uncertainties in the research hopefully in time research will be directed into these areas that need more detailed investigation. 

RAPID TRANSMISSION OF INFECTIONS FROM A TICK BITE

Regurgitation Transmission of Borrelia burgdorferi to humans ; The Rapid pathway
as contrasted with Salivary gland transmision ( the Slow pathway)

Ticks and Tickborne Bacterial Diseases in Humans: An Emerging Infectious Threat

Ticks are currently considered to be second only to mosquitoes as vectors of human infectious diseases in the world

Clinical Infectious Diseases Year 2001 vol 32: 897-928
(an Official publication of the Infectiious Disease Society of America) link here 

An ongoing debate in the Lyme community is over how long it can take to be infected by a tick. I read an interesting post by Dr Alan MacDonald on the subject on the Lymenet Europe forum  which I share.

'Salivary gland processing of Bb is an accepted pathway to transmission of infection to the mammallian host.
The Minimal Infective Dose ( Minimal Infective number) of properly conditioned Bb
from an infected tick is not known with certainty, although estimates or outright guessing of 
Minimal tick attachment time for tranmission of infection are bandied about in the literature.

Overlooked in Tick transmission of infection to mammalian hosts is Regurgitation Transmission.

Regurgitation Transmission is a reallity which is discussed in the attachment.

In essence,the Rate of delivery of borrelia from tick to mammalian host via the salivary route
is slow. In Contrast, with regurgitation transmission, the rate of delivery of borrelia to the
mammalianhost is high.. A Huge bolus of ifectomes is delivered with a single episode of tick vomitus.

Regurgitation transmission explains cases of Erythema migrans which develop rapidly,
even those cases of EMgreater than 5cm diameter noted with the tick still attached to the center of the EM lesion.

Walter Reed's collegues solved the mystery of Yellow Fever transmission in Cuba
by "sticking out his arm" and allowing the mosquitos to feed.

If there is commentator confidence that short term attachment produces no human Bb infections
then let those experts "stick out their arm" and allow the Infected Ixodid nymphs to feed .

Food for thought...stand behind your expert statements....by stickingout your arm.'

Thank you Dr MacDonald 

There is not much humor involved with reading about patients chronically ill with this disease but a mental picture of some of the most ardent deniers of Chronic Lyme Disease standing in line 'sticking out their arms' amused me today. Of course these deniers of Chronic Lyme Disease know far more than they let on about the complexity of this disease to do anything so fool hardy, as a trawl through patent applications will soon confirm. here

MORE QUESTIONS IN THE HOUSE OF LORDS ABOUT LYME DISEASE

HOUSE OF LORDS 


Questions on Lyme Disease from the Countess of Mar details can be found here 


The Countess of Mar to ask Her Majesty’s Government what epidemiology data exists for the historic and current population densities of Ixodes ricinus ticks in England and Wales; whether it shows an increase in tick numbers; what proportion of ticks carry Borrelia burgdorferi sensu lato; and what measures are in place for future monitoring. [DH] HL138 


The Countess of Mar to ask Her Majesty’s Government, with regard to the freedom of household pets to travel in Europe, what surveillance measures exist to detect the arrival of tick-borne encephalitis and other tick-borne diseases that are not currently endemic in the United Kingdom; and what measures exist to inform United Kingdom residents of the risks of those diseases when they travel to Europe and the United States and the need for vaccination for tick-borne encephalitis. [DH] HL139 


The Countess of Mar to ask Her Majesty’s Government what testing is carried out in addition to Borrelia burgdorferi sensu stricto and Borrelia afzelii for tick-borne diseases including Bartonellosis, Ehrlichiosis, Borrelia garinii, Babesiosis, Louping ill and Q-fever, that occur in the United Kingdom, and for other zoonoses such as tick-borne encephalitis, Boutonneuse fever, Tularemia and Rocky Mountain spotted fever to which United Kingdom residents can be exposed when travelling to Europe and the United States. [DH] HL140


The Countess of Mar to ask Her Majesty’s Government, with reference to the "new test" to be used by the Health Protection Agency (HPA) Lyme Unit at Porton Down for Lyme borreliosis, what data they hold for the sensitivity and specificity of the test kits for the local genospecies of Borrelia in England and Wales; what testing has been carried out by the HPA or other body to confirm the sensitivity and specificity of the test kits for the local genospecies in England and Wales; and, if testing was carried out, what were the sensitivity and specificity results. [DH] HL141 


The Countess of Mar to ask Her Majesty’s Government what plans they have to enhance the current regulations defined by European Union Directive 98/79 to ensure proactive verification and certification of medical devices; and what data they possess for the performance characteristics and limitations of the ELISA and Western blot serology tests, including the test to be used at the Porton Down laboratory that is required from the manufacturers in accordance with Annex III of Directive 98/79. [DH] HL142 


The Countess of Mar to ask Her Majesty’s Government when the transfer of the Lyme Reference Laboratory to the Rare and Imported Pathogens Laboratory at Porton Down is expected to be complete and whether the Health Protection Agency will include Lyme on its list of Reference Services published on its website. [DH] HL143


It is good to see the Countess of Mar asking very pertinent questions of our Government and it is beholden of the Government to seek accurate and informative answers from the Department of Health not the fobbing off that has been the pattern so far, as evidenced by the 30ish letters to me from MP Anne Milton on the subject of Lyme Disease, although Anne says she has many concerns about this puzzling disease.

Pr LUC MONTAGNIER ON LYME DISEASE AUTISM AND BORRELIA

Interview in French (with English subtitles) of Professor Luc Montagnier, Nobel Prize for medicine in 2008, on the importance of detecting infections which may be at the root of chronic illness.

Pr Montagnier on Lyme Disease, Autism and chronic infections.

 'Chronic illnesses are not only illnesses of elderly people'

 'So it is an illness that has to be taken very seriously'

'I don't want to compare it to AIDS but it's almost like AIDS, in fact this bacteria is a close relative to the Syphilis spirochete, they are in the same family, of course Syphilis is a lot rarer these days but it has now been replaced by Lyme Disease which is not sexually transmitted but through tick bites or from mother to child and there are probably other means of transmission that we are not aware of.'

He calls for a changes in the way the public, doctors and politicians think about chronic illness and the benefits of changes which although initially costly will in the long term reduce health care costs for such illnesses as Alzheimer's, cancer and AIDS.

A further interview conducted following the first but in English and with slightly different conversation.

LYME DISEASE FIGURES UP IN ENGLAND AND WALES

The Health Protection Agency is advising people to take care when visiting areas where ticks are present, to prevent tick bites and reduce the risk of catching Lyme disease.

Latest provisional figures from the Health Protection Agency (HPA) show there were 953 laboratory-confirmed cases of Lyme disease reported in England and Wales in 2010. The majority of these cases were acquired in the UK rather than overseas, with two-thirds of cases identified among residents in the South of England.

According to Centres for Disease Control in USA and Dr Ho Yen from HPA in Scotland the actual figure of people infected by Lyme Disease is more likely to be in the region of 10x that of serological positive tested cases so nearly 10000 cases in England and Wales last year. I don't have the figures for Scotland yet.

Advising people on the HPA website to take care of being bitten by a tick is just not good enough more publicity needs to be done by our Health Authorities.

Currently it is the patients and the UK charities that are raising awareness of this debilitating and often painfull disease. Thank you to BADA UK for the latest drive for Tick Bite Prevention Week and for getting information into various newspapers recently including

The Independent 'Lyme disease nearly made me come indoors,' says Ray Mears and

The Daily Mail Survival expert Ray Mears reveals how simple tick bite nearly ended his career

Shame on our Health Protection Agency for their failure to raise public awareness.

MY LYME DISEASE IS NOT THE IDSA LYME DISEASE

My Lyme disease is not the IDSA Lyme disease

In response to various articles in the Chicargo Times and other newspapers found here
a number of patients posted their experiences with the above heading.

Blogger Lymenaide: says this:-

Do a Google search for "My Lyme Disease is not the IDSA Lyme Disease". See what pops up! Keep writing and posting your stories. Let's get the first few search pages to be filled with our stories. Keep the existing stories at the top of the list by reading them, commenting and sharing them with your friends and family.

Below is what I added to my side bar of both my blogs.

LYME LIFE

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks, 4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. I have been retired early from the Civil Service having lost my job not to mention my earning potential.

My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said, but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer at the time I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area.

Thus started my very lengthy search about Lyme Disease leading me through http://www.lymediseaseaction.org.uk/ to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite the Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work.

Life is such a joy.

Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses.

Look at UK charity http://www.lymediseaseaction.org.uk/ if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one.

One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.
ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

Monday, 25 January 2010
ME/CFS, FIBROMYALGIA, LYME DISEASE UPDATE

An update on my journey from ME/CFS, Fibromyalgia, Arthritis and Muscle weakness, Polymyalgia Rheumatica, to Lyme Disease and a cure for my illness which started in 2003.

I have details of my story on the right hand column on my blog and decided it was time to post an update.


I originally started Joanne's Cottage Garden as a record of my garden, I was able to enjoy gardening once again after an illness of 6 years. Those who followed that blog will notice my mention of my ongoing Lyme Disease symptoms, mainly in my legs.

A few months ago I started Looking at Lyme Disease blog in order to post information that interested me.


Over the last year my symptoms have continued to improve. My scariest symptom was swallowing problems which improved on Doxycycline but returned on Amoxycillin and improved again on a combination of Amoxycillin and Clarithromycin. I tried many times to reduce the Clarithromycin and always my arthritis and muscle weakness would deteriorate but by week three the worst symptom, the swallowing problems were the ones that would push me back into taking Clarithromycin again.


In November 2009 I stopped antibiotics. I still had some symptoms in knees, feet and facial tingling and twitching, I was never sure what was just muscle problems and what was peripheral neuropathies. My GP had discussed the Chief Medical Officers letter with me (details of this on Lyme Disease Action website). I had mistakenly thought she was going to refuse any further prescriptions and so decided to stop antibiotics whilst still having some in hand for emergency (Lyme patients would understand this, others not familiar with the problems getting treatment may not).


It is now week 13 since stopping antibiotics. So far my symptoms have deteriorated, weeks 4, 8 and 12 being the worst and symptoms picking up in between. Symptoms have appeared in a variable way in calf muscles, knees, wrists, feet, face and rt hip. So far I am delighted that my immune system seems to be coping and within a few days of any new symptom appearing, my immune system seems to get on top of it. This is what we are aiming for the immune system in control.


I did see my LLMD and he confirmed I still had Lyme like symptoms and at some point more or less definitely would need antibiotics again, but not just now. He advised me that many of the USA Lyme doctors would treat more aggressively and for longer. This I know, many would treat with cyst busting drugs, we discussed this and decided not to do so at present. The reason for my cycling symptoms is thought to be the dormant infection (which goes into cysts) replicating usually on a 4 weekly cycle.


So at present I am not as well as I was when last on antibiotics, fatigue being another of my problems but not the chronic fatigue that doesn't improve with rest. I am delighted not to be popping pills and delighted that generally my health is still improving so fingers crossed.


Discussing my situation with my GP she is as always very supportive and if the time comes when I need further treatment I am fortunate to have both my doctors there to support me.


I have to say that I have been very very lucky, so many Lyme Patients are far sicker than I ever have been even though there was a time three years ago when I did not want my life to go on because of the endless unremitting pain. It has been a very long and difficult recovery nearly three years of antibiotics, I suspect the 20 months of steroids given for the Polymyalgia Rheumatica Diagnosis would have compromised my immune system and made my recovery more protracted.

For now it is a joy to be pain free and no longer on any medication.

As of December2010

Sadly after a 5 month break off antibiotics my symptoms deteriorated sufficient for me to once again start antibiotics. Some of these symptoms are those described as Peripheral Neuropathies, facial, tingling and twitching, problems with vision, flashing lights and blurred vision, and tingling and numbness in legs and feet. Thankfully they responded well to antibiotics and whilst remaining on them I remain virtually 100% with only one or two remaining symptoms that have continued to improve month on month.

335 EMERGING INFECTIOUS DISEASES SINCE 1940-60% ZOONOTIC

A Systems Approach in Understanding Tick-Borne Diseases: People, Animals, and the Ecosystem
Richard Ostfeld, Ph.D. Disease Ecologist
Cary Institute of Ecosystem Studies

'We live in an age of emerging infectious diseases. A recent study by Jones et al demonstrates that no fewer than 335 new infectious diseases of humans have emerged since 1940.

Of those Infectious Diseases about 60% of them are Zoonotic, meaning that the pathogen replicates within and is transmitted from non humans vertebrate species to humans.

Of these Zoonotic diseases about 72% are from wildlife with the remainder coming from domestic animals of various kinds.

Fully 30% of the newly emerging diseases are vector borne including most of the Tick borne diseases we will be talking about today and tomorrow and throughout the 20th Centuray and into the 21st Century the rate of emergence of new Infectious Diseases of humans has increased.'

The above were the opening remarks by Richard Ostfeld at A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term

To view and listen to the whole presentation click here

*****************************************************************************
Much of the controversy over diagnosis and treatment of Lyme Disease comes back to the old problem of definition of Lyme Disease and it is interesting to see how the ILADS conferences (London and USA) moved away from that narrow definition of Lyme Disease, (Dr Bransfield's presentation of the Decade of the Microbe) as they are finding many of their patients are multiply infected with different organisms.

Dr Richard Horowitz interviewed for a TV program here refers to MCIDS - Multiple Chronic Infectious Diseases Syndrome found through CALDA website here

********************************************************************

I was lucky that my Chronic symptoms of Arthritis and muscle weakness which developed following tick bites and Bulls eye rashes responded so well to long term antibiotics although it took 4 years for my GP to realise the connection to the tick bites.

I never tested fully positive on any of the two tests given but listening to the Institute of Medicine Workshop it seems that many of the tick borne illnesses have problems over testing and many of the available tests are not given to patients like myself who are chronically ill.

Through Eurolyme I am in touch with patients who have Neurolgical symptoms, some diagnosed with Multiple Sclerosis, Parkinson's and Motor Neurons who are responding well to long term antibiotics.

So whilst science is still evolving over these complex emerging diseases it is best to keep an open mind and see what works well for us as individuals.

CLINICAL CONSEQUENCES OF MULTIPLE INFECTIONS

Genotypic Variation and Mixtures of Lyme Borrelia in Ixodes Ticks from North America and Europe

From Plos One link here

Chris D. Crowder1, Heather E. Matthews1, Steven Schutzer5, Megan A. Rounds1, Benjamin J. Luft3, Oliver Nolte4, Scott R. Campbell2, Curtis A. Phillipson1, Feng Li1, Ranga Sampath1, David J. Ecker1, Mark W. Eshoo1*

1 Ibis Biosciences, Carlsbad, California, United States of America, 2 Suffolk County Department of Health Services, Yaphank, New York, United States of America, 3 Department of Medicine, State University of New York at Stony Brook, Stony Brook, New York, United States of America, 4 Laboratory of Dr. Brunner, Constance, Germany, 5 Department of Medicine, University of Medicine and Dentistry of New Jersey, Newark, New Jersey, United States of America

Abstract

Background
Lyme disease, caused by various species of Borrelia, is transmitted by Ixodes ticks in North America and Europe. Studies have shown the genotype of Borrelia burgdorferi sensu stricto (s.s.) or the species of B. burgdorferi sensu lato (s.l.) affects the ability of the bacteria to cause local or disseminated infection in humans.

Methodology/Principal Findings

We used a multilocus PCR electrospray mass spectrometry assay to determine the species and genotype Borrelia from ticks collected in New York, Connecticut, Indiana, Southern Germany, and California and characterized isolates from parts of the United States and Europe.

These analyses identified 53 distinct genotypes of B. burgdorferi sensu stricto with higher resolution than ospC typing. Genotypes of other members of the B. burgdorferi sensu lato complex were also identified and genotyped including B. afzelii, B. garinii, B. lusitaniae, B. spielmanii, and B. valaisiana.

While each site in North America had genotypes unique to that location, we found genotypes shared between individual regions and two genotypes found across the United States.

Significant B. burgdorferi s.s. genotypic diversity was observed between North America and Europe: only 6.6% of US genotypes (3 of 45) were found in Europe and 27% of the European genotypes (3 of 11) were observed in the US.

Interestingly, 39% of adult Ixodes scapularis ticks from North America were infected with more than one genotype of B. burgdorferi s.s. and 22.2% of Ixodes ricinus ticks from Germany were infected with more than one genotype of B. burgdorferi s.l.

Conclusions/Significance

The presence of multiple Borrelia genotypes in ticks increases the probability that a person will be infected with more than one genotype of B. burgdorferi, potentially increasing the risks of disseminated Lyme disease.

Our study indicates that the genotypic diversity of Borrelia in ticks in both North America and Europe is higher then previously reported and can have potential clinical consequences.

NEED FOR MORE STUDIES

Brian Fallon, M.D., M.P.H.
Director of the Center for Neuroinflammatory Disorders and Biobehavioral Medicine
Director of the Lyme and Tick-Borne Diseases Research Center
Columbia University Medical Center


Summary from Brian Fallon's talk at the IOM: here 13 mins in

A European study showed 50% Neuro Lyme pateints had persistent symptoms after 3 years compared to 16% of EM patients

Lyme does not have the same trigger points as Fibromyalgia patients

When requesting patient criteria for chronic Lyme it is pointless asking for only those with IgG positive WB as many would not match the criteria

Need more studies outside the use of antibiotics to track improvements (ie a whole management look at Lyme in line with other conditions)

Talks about doctors calling patients with symptoms after 4 weeks treatment as having a somatic disorder - says this can be down to lack of knowledge, the belief that 2-4 weeks is sufficient, lack of recognition of the chronic form of disease or just plain hostility towards the patient

Talked about various studies that showed that fatigue & pain was helped by IV treatment. Criticised a study (Krupps) that claimed that cognitive function was not improved when people were recruited for fatigue & not cognitive related issues, so he reasoned that if the subjects had little cognitive problems to start with then there's no surprise if they didn't improve anymore than the control group

What do we know about non antibiotic treatment therapies? We know nothing there has not been one study and that is absurd these patients are suffering so much and we don’t have a single study except for a few antimicrobial but nothing outside of the realm of antibiotics.


Why are there persistent symptoms?

it could be
Persistent infection
reinfection from a further tick bite
re activation of latent dormant infection
Physiologically active but post infectious spirochetes
Widely distributed effects post infectious phenomena
hypothyroidism
Neuro transmitter changes
Why might it be labeled as a somatic illness, because of the limitations of the physician believing that two to four weeks of antibiotics is always curative. Assuming any symptoms after antibiotic treatment are due to other causes.
Or a lack of recognition that post infectious symptoms can go on for years where you can have chronic fatigue cognitive symptoms and pain
Or could be that there is hostility to chronic illness because some physicians can’t deal with that.


He believes that the NIH to set up a specific sub-committee solely to look at chronic Lyme infection...

DOES IT SOUND AS THOUGH A COUPLE OF WEEKS ANTIBIOTICS WOULD CURE THIS?

Once the Borrelia Lyme bacteria enter the blood stream of a human, it is immediately susceptible to attack.

An immediate cellular response of neutrophils and macrophage will try and digest the bacteria, and also present markers for the bacteria to lymphocytes that will over the course of several weeks begin to turn out killer T-cells and B-cells that produce specific antibodies.

The first mechanism to survive is to leave the blood stream!

Borrelia can do this by either entering the blood vessel cells called endothelial cells, or transiting the blood-vessel through gaps it creates, and entering other tissues.

If the bacteria do this quickly enough, not enough bacteria will be present to cause an immune response. In other words, it tricks the immune system into thinking that there is no active persistent infection.

If the infection load in the blood is too low, the immune response is muted. But the bacteria can persist in low numbers in other tissues.

Often the first tissues the bacteria find themselves in; is back in the skin usually at the tick-bite-site.

The cellular response to attack the bacteria that is literally swimming through the skin cells, causes the redness, and the appearance of the rash.

Over time parts of the rash fade as the immune response lessens as the bacteria move away from ground-zero.

Another place Borrelia burgdorferi can hide is in the skin. We have seen in culture that fibroblast skin cells can safely harbor the bacteria, and prevent powerful drugs like IV ceftriaxone at high concentrations to have almost no lethal effect on the sequestered bacteria.

If we can’t kill the bacteria in in-vitro skin studies, why would we think we have any better luck in a living human when there are even better places to hide?

Georgilis K, Peacocke M, and Klempner MS. Fibroblasts protect the Lyme Disease spirochete, Borrelia burgdorferi from ceftriaxone in vitro. J. Infect Dis. 1992;166:440-444

It isn’t what we don’t know about Lyme disease that is causing patients to suffer. It is what we have known and chosen to ignore that is slowly killing patients by diminishing their quality of life until they have nothing left to fight with.

Once the bacteria enter the blood stream, with every beat of the heart the bacteria are dispersed throughout the body. These motile leech-like creatures use their ability to swim and their ability to attach to cells to their advantage to survive.

The above is a short extract from Lyme on the Brain (Part 3-A)
Lecture Notes of Tom Grier
Tomgrier2001@yahoo.com

The whole article can be found on Madison area support group here

TRAGIC DEATH CAUSED BY UNDIAGNOSED LYME BORRELIOSIS

This is a truly tragic case of a little boy with Lyme Disease whose doctors failed to diagnose him and then he died. This was not a case of Acute Lyme Disease the boy had been ill three years and so was suffering with Chronic Lyme Disease.

My heart goes out to the Linus' family and thank them for their efforts to ensure no other family will lose a child so un necessarily with a treatable illness such as Lyme Disease.


Below is a translation from the Swedish newspaper original can be found here

Top Photo caption: Linus parents, Lennart and Jeanette Wallberg, report the doctors who missed their son's illness. "We are doing everything that others will not be part of the same thing."

Boy's photo caption:Linus Wallberg fought against his illness a long time - eventually he died, aged 15, of Lyme.

Main body:For several years fought Linus Wallberg, 15, to their pain. Last spring, he died of neurological Lyme disease at home in the family's couch. Now they report three family physicians to Health and Medical Treatment.- I have no confidence in care longer. We are doing everything that others will not be part of the same thing, "says Lennart dad.Linus Wallberg had been sick more than three years.

On several occasions he had been given emergency leave to the emergency department in Nyköping with all-over body pain, severe nausea, and vomiting. But when the family rushed to the hospital were sent home again, Linus usually diagnosed with stomachflu or influenza.- "We believed in what the doctors said. Nobody wants to believe that your child is seriously ill, "said Linus' Mom Jeanette Wallberg.

Doctors dismissed the fears
One of the doctors gave Linus a diagnosis of asthma stomach [needclarification on dx] and said that his pain would disappear by itself overtime. And when Jeanette told the doctor that she was worried that she would one day find her son dead the doctor laughed and dismissed her concerns.

But Linus was seriously ill. Early on the morning of February 17 last year,when Dad would get Lennart Linus, he found him dead in the family's couch.

Autopsy report showed that Linus had died from complications of neuro-Lyme.

- To my knowledge, none of any doctors with Linus tested him for Lyme. Had they taken the spinal cord samples, and gave him antibiotics Linus, he would have lived today. But it felt like they did not take us seriously, "says Jeanette.

Important to the case investigated Linus' parents have now sent three doctors to the health care committee and Responsibility. One of them is Chief Diana Born Welff Stein, who is medical director of children's hospital in Nyköping.- It has stood in the records and they saw symptoms Linus and did not automatically suspect neurological Lyme disease, otherwise they would have investigated and dealt with Linus. But this is a very difficult diagnosis to make, "she says.

Have you failed in the treatment of Linus?- Yes of course I just had to say when a child dies from a treatable disease. I can understand that the family chooses to report and it is important that the case be investigated, "said Diana Stein Born Welff.

But it is of little comfort to Linus family.- They did not believe us. We will never get over this, but if notification helps other parents to avoid going through the same thing [so there is always something], "says Jeanette Wallberg.

Grey box:Facts - Borrelia Less than one in ten people who suffer from Lyme borreliosis may have neurotoxicity. Usually noticeable symptoms show between one to two months after the tick bite, but time may vary from just a few weeks up to six months.
Usually it begins as a skin infection, many notice no change in skin before they get symptoms from the nervous system. Neuro-borreliosis is common among children than adults.(Source: www.1177.se)

two other articles were here and here

Sadly doctors not taking patients seriously when they complain of the symptoms of Lyme Disease is all too common as the several thousand patients who subscribe to Eurolyme will testify to.

TICKBITE-LYME DISEASE-MOTOR NEURONS, PARKINSON'S, MULTIPLE SCLEROSIS

a2zmedia 23 August 2009
This video clip was put together to demonstrate to Norwegian broadcasters what problem Lyme Disease is and how it can affect your life if not treated. For more information about our project, please go to http://www.lymefilm.com/


Below is a translation from a newspaper article on Eivind's struggles not just with Borreliosis but with his medical Authorities.

The original article and further video can be seen here

Lived at ten years of death sentence after the tick bite
The state says Eivind Markhus (45) has the deadly disease ALS. Although he is convinced that a tick bite have linked him to the wheelchair.
ASLE HANSEN -->

Living in a wheelchair: Eivind Markhus (45) was formerly an active player on Strømsgodset A-team. This video reportage made a few weeks before the trial in summer 2007. Video: Anja Nygren Lohne
Borreliosis Lyme
The most common tick-borne disease is Lyme borreliosis. It is caused by a bacterium. The disease should be treated with antibiotics. There is no vaccine against borreliosis. • So far this year is 59 Norwegians diagnosed with severe Lyme borreliosis. • In 2007, 328 people registered with complicated borelliasykdom, in 2008 346 persons and 273 persons in 2009. • Most cases of this tick disease occurs in coastal areas on both sides of the outer Oslofjord, Telemark and Agder counties. Kilde: MSIS og Folkehelseinstituttet Source: MSIS and Public Health
annonse


Communicate via PC: The disease has weakened speech and Eivind Markhus communicate better through e-mail.



In the summer of 2007 lost Eivind Markhus compensation case he had filed against the state by Pasientskade Committee in Oslo District Court. The court did not agree that a failure treated neuro-borreliosis after tick bites have linked him to the wheelchair. Now the 45-year-old ready for the rematch in the Borgarting Court of Appeal, the appeal is scheduled in late June 2011. - Now, health-Norway to accept that I have Borrelia and ALS, "says Markhus the way he does best, via e-mail.


Former football player Within a few years the 45-year-old from a well-trained athlete, who played 13 First Division appearances for Strømsgodset in 1987, to be completely paralyzed and completely dependent on the wheelchair. Norwegian doctors have given him a diagnosis of ALS (amyotrophic lateral sclerosis), a nerve disease with fatal outcome. Foreign experts believe he has an active Borrelia infection in the body that mimic ALS. Eivind Markhus think he would have had a different health situation today if the Norwegian doctors earlier had put him on høydosebehandling with antibiotics for a long time.
Denied compensation Director Rose-Marie Christiansen in Pasientskade Committee say they maintain their argument from the court process where the board argued that it is "unlikely that the patient's disease, ALS is caused by borreliosis. If the disease still be triggered by tick bacterium, said Pasientskade Committee that the hospital acted properly regardless of the basis of available knowledge at that time. Eivind Markhus was given three, four years left to live in 2001, but has made the death sentence to shame. He lives now in the tenth year of his ALS diagnosis, without the need for breathing assistance, which is very unusual. Markhus am sure that antibiotic treatment he got against neuro borreliosis in the USA in 2003 slowed the disease and saved his life. He is optimistic ahead of the appeal, referring to an article in the Journal of the Norwegian Medical Association in May 2008 where it is established that Borrelia in rare cases can cause an "illness resembling amyotrophic lateral sclerosis. - When the experts of the Respondent now admits that Borrelia can mimic ALS, and even wrote a fagartikkel about it, I stated. This did not believe these experts last time when I said this, " From 2000 until today, the Norwegian Patients (NPE) received 28 cases concerning delayed or incorrect treatment of Borrelia / borreliosis. . It is only given under the two cases, while 26 cases are rejected.

ALS is referred to as Motor Neurons in the UK.

I have posted before about Dr Martz incredible story recovering from ALS or Motor Neurons diagnosed by John Hopkins Neurologist but found to be caused by Borrelia, Lyme disease. His presentations at the 2010 London ILADS conference were amazing as were his findings from the clinic he opened where he treated patients with Multiple Sclerosis, ALS/Motor Neurons and Parkinson's. Soon to be available on DVD. For earlier posts on Dr Martz put Dr Martz into the search box in the right hand column or click here

With my experience and knowing about Dr Martz findings I was able to encourage a local man who had been diagnosed with Polymyalgia Rheumatica like myself and then later Parkinson's, to see a specialist in tick borne diseases. He has now been diagnosed with Lyme Disease -already he is responding well to antibiotics.

PUBLIC HEALTH RISKS OF LYME DISEASE IN UK

THE PUBLIC HEALTH RISKS OF LYME DISEASE IN
BRECKLAND, U.K.: AN INVESTIGATION OF
ENVIRONMENTAL AND SOCIAL FACTORS

TRACEY V. MAWBY* and ANDREW A. LOVETT

School of Environmental Sciences, University of East Anglia, Norwich NR4 7TJ, U.K.
Abstract This paper considers the public health risks of Lyme disease, a borrelial infection transmitted to humans chiefly by nymphal Ixodes ticks. A study undertaken in the Breckland area of East Anglia, U.K., combined analysis of the spatial and temporal factors affecting tick activity at recreational sites with a survey of current levels of disease awareness among visitors to these locations. Significant re- lationships were found between densities of questing ticks and vegetation type, relative humidity and temperature. More than two thirds of the general public visiting the sites were aware ticks could carry diseases, but only 13% recognized an unfed nymph, and under half knew that Lyme disease could be contracted from tick bites. Such results need to be taken into account when formulating public health and education measures. # 1998 Elsevier Science Ltd. All rights reserved
Key words Lyme disease, Borrelia burgdorferi, Ixodes ricinus, Breckland, risk assessment

The full article can be accessed here

Thank you anonymous for your comment on my last post and I suspect for the link into the above research posted today on Eurolyme.

It is a disgrace that as you say so much research has already been done for many years into ticks their location and habitat and the public's risk and perceived risk. I was aware that there was research being done with my local University Surrey, Oxford University and the Forestry Commission on risks and perceived risks. I was rather surprised when I heard of this that money and time was being spent on such research and yet trying to get local bodies and organisations to publicise the risks is such an up hill battle. Having been in touch with 23 people suffering from Chronic Lyme Disease in my locality in and around Guildford.

I saw 5 doctors and 3 rheumatologists, attending surgery with bites, bulls eye rashes summer flu' and migrating arthralgias all red flags for Lyme although it took four years and a chance course of antibiotics given for a sinus chest infection which significantly improved my symptoms and led my then GP to suspect Lyme Disease. By then other cases had presented in the early stages and been confirmed with NHS positive tests.

I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo skeletal disease, Polymyalgia Rheumatica and eventually Lyme disease. It was only on long term antibiotics for Lyme Disease as per Burrascano Guidelines that I started to recover and now am nearly 100%, with no pain, no disability and can garden and cycle again.

I was aware of Lyme Disease but had always thought it to be something unique to the USA. I even have a second cousin who was involved in the research in the early 1980's something to do with being in charge of the blood banks at that time. He later moved into a different field and became Chief of one of the National Institutes of Health although now retired. I contacted him to see if he could help me find a specialist in the UK to assess my condition, I had no reply now I understand why. However he did say to my father that he was not at all surprised to hear that it was Lyme Disease from my description, that the blood tests were not reliable being antibody tests(something most doctors would realise if they thought for themselves)and that he was not surprised to hear long term antibiotics were helping.

The more you get involved with reading the research and talking to doctors the more you realise there is so much more known but hushed up about Lyme Disease.

I had actually asked one doctor about my migrating arthralgias if it could be due to an insect bite the answer a firm no.

Sometimes thinking about the denial and the wasted years of my life which could have been avoided with just more awareness can make me feel a little bitter but what really concerns me is the hundreds if not thousands of people who are in the same situation many of whom will not even realise their health problems are due to a tiny tick bite.

The biggest disgrace is that in not publicising awareness so that people can protect themselves and seek early medical attention they put our children at risk, that is unforgivable.

As Anonymous said 'One wonders why those who were working on ticks for decades at the University of Oxford did not have the decency to warn the UK, her government and people, about the many pathogens that ticks carry. Shame on them, and all those who oversaw their work. What honours and medals they have gained, while all the time staying tight-lipped and aloof from the scourge wreaked upon the ordinary folk. Scientists have studied ticks and the viral and bacterial diseases they carry, at Oxford and other UK labs, since the 1940s at least. May their god forgive them, because I cannot, not when I think of the agony and despair caused by this Lyme disease, and whatever else is in the mixture.'

How do they sleep at night? Knowing the risks and dangers and not raising public awareness.

Statistics are just that, if you happen to be that one person infected and suffering serious health problems it doesn't matter what the statistical chances of being bitten and infected are you need help and medical attention.

EDINBURGH TACKING TICKS- £2.5 MILLION FUNDING FROM WELLCOME TRUST

BBC NEWS EDINBURGH

£2.5m for Edinburgh University to tackle ticks.

Ticks can transmit number of severe and potentially deadly diseases to humans including Lyme disease Scientists at Edinburgh University have been awarded £2.5m to tackle the growing health risk posed by ticks.

Campers and hikers have long known the misery ticks can cause.

Now scientists at the Roslin Institute aim to find new ways to prevent diseases transmitted by the tiny insect-like creatures.

The university will establish the Roslin Wellcome Trust Tick Cell Biobank with the funding from the Wellcome Trust.

It says the biobank will house the world's largest collection of tick cell lines, enabling scientists to carry out advanced research.

The scientists hope to understand how viruses and bacteria, which are transmitted by ticks and which cause a range of human diseases, can survive for long periods of time within ticks without damaging them.

In parts of the world, ticks can transmit a number of severe and potentially deadly diseases to humans and animals, including Lyme disease, tick-borne encephalitis and Crimean-Congo haemorrhagic fever. In Britain, cases of Lyme disease are dramatically increasing each year.

In the rest of Europe, tick-borne encephalitis is now endemic in 27 countries, including Germany and Croatia.

Tick numbers are surging in Europe and scientists warn that changing climate patterns and increasing globalisation could enable them to spread into new areas.

The Tick Cell Biobank team and collaborators from seven other European countries have received further funding from the European Union to train a new generation of scientists specialising in ticks and their related diseases.

Project leader Professor John Fazakerley said: "Tick-transmitted infections are likely to be increasingly important in the future. Understanding these diseases and training scientists to undertake research on them is important for both human and animal heath". http://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-10914730

Excellent news, once again one has to ask why there are those that dismiss Lyme Disease as rare and easy to cure and then there are the over 19000 research articles written about it and then now this £2.5 million for research on Tickborne illness. I do hope those researchers are fully aware of the enormity of their task not just an interesting experiment on ticks but major World Health consequences can benefit from their research as Eva Sapi is finding from her own similar research.

In the UK alone I am in touch through Eurolyme with 2300 patients (mostly from the UK). We have all struggled to get diagnosis and struggled to get appropriate treatment that can help us. All have been diagnosed with many things as their multiple symptoms progress such as ME/CFS, Fibromyalgia, Arthritis, Muscle Weakness, facial palsies, Multiple Sclerosis and other Neurological illnesses.

I have posted before on Eva Sapi's work and entering her name in the search box on the right hand side will bring up my earlier posts, or click here

JONATHAN PEARCE CONTRACTED LYME DISEASE

BBC's Pearce Recovering From Lyme Disease

BBC commentator Jonathan Pearce contracted Lyme Disease during his time in South Africa for the World Cup. The veteran broadcaster broke the news on his Twitter account earlier this week ''Bit of bad news. Contracted lyme disease in South Africa, a tick borne paralisis. Now clearing up it seems but scary for a week or two.''There have been no further updates on this story by the media or from Pearce himself. Pearce covered 15 World Cup matches over the summer, including the 3rd place game between Germany and Uruguay.Read more: http://www.broadcasting.vitalfootball.co.uk/article.asp?a=7505199#ixzz0w822wyLX

Jonathan Pearce appears to have been lucky in that his Lyme Disease seems to have been diagnosed early in his illness when antibiotics are more effective in eradicating the infection.

Jonathan Pearce also appears to be lucky in that he no doubt will have been diagnosed either by a Bulls eye rash something that many doctors don't recognise as the hall mark of Lyme Disease and something that 40% of cases do not get, or serology which can miss 50% of cases or maybe lumber puncture which is only 17% likely to find the right spot where the infection is.

Lets hope he is also lucky in being treated long enough to eradicate the infection many treated on the two weeks low dose of antibiotics recommended in IDSA guidelines and followed by our Health Protection agency in UK find to their cost that their symptoms return gradually over the next months and years.

If this happens with Jonathan will he be told by his doctors that his remaining symptoms are all in his head or the aches and pains of daily life? or will he like many thousands of others find a Lyme literate medical doctor something particularly rare to find in the UK and dismissed by HPA who so vehemently follow IDSA restrictive and discredited guidelines.

However if Jonathan does some homework he will find that ILADS and Burrascano Guidelines recommend a 6-8 week course of antibiotics even at the Rash stage and their dosage is about twice as much as IDSA/HPA would advise.

I wonder how aware Jonathan is that Lyme is endemic in many places in the UK and can in fact be caught throughout the UK. The real problem is that patients are dismissed with many mis diagnosis and Lyme Disease is rarely considered as a differential diagnosis.

Jonathan Pearce says 'a tick borne paralysis' and 'scary for a week or two' what he doesn't know is that thousands of patients the World over suffer his scary symptoms not like I suspect he had as an Acute illness more easily diagnosed by our doctors but as a chronic insidious illness that creeps up slowly over the years but does indeed lead to years if not the rest of our lives with those scary symptoms depending on whether patients get a Lyme Disease diagnosis or not and if they do find a Lyme literate medical doctor who has treated sufficient numbers of patients to really understand the complexities of this dreadful disease.

Hopefully Jonathan will not repeat the experience of Rugby coach Mike Gregory. click here

or 'Karl McManus, died last Wednesday - three years after he was bitten by a tick she says carried Lyme disease, a bacterial infection which, if left untreated, can cause profound neurological damage' click here

A LYME WARRIOR

Dr. Joe Jemsek “Speaks the Truth” Speech

Dr. Joe Jemsek (www.jemsekspecialty.com) discusses the controversy surrounding Lyme disease and what action needs to be taken to provide patients with better care.

Lyme Disease is more generally associated with Arthritis by the general public, that is if they think about it at all. In fact my main symptoms were arthritis and muscle weakness but as my illness progressed I developed various Peripheral Neuropathies. It is interesting to read what Dr Jemsek has to say about the Disease and the Patient.

THE DISEASE
A tick bite can expose a person to a variety of bacteria and other microorganisms that may make one sick. This can occur after a single bite or through multiple tick bites. In this overview, we will focus on the particular bacteria called Borrelia Burgdorferi (Bb) that is known to cause Lyme disease and is acquired from a tick bite. If antibiotics are not taken or are inappropriately administered soon after a bite from a Bb-infected tick, the patient is at higher risk for illness, which may occur suddenly or surface at a later time.
Finding the attached tick is difficult because the tick that carries this bacterium is very small and tick bites may occur where they are not easily seen. Often times, the tell-tale rash that can result from a tick bit, called erythema migrams, does not develop. Hence, a patient may not know they were bitten by an infected tick. They may soon begin to feel symptoms such as fatigue, muscle pain and spasms, sensory aversion, gut and bladder problems, bizarre neurological symptoms and memory loss. It is not unusual for cognitive difficulties to progress to the point that patients experience the inability to find their way home from everyday places, such as the grocery store and post office.

THE PATIENTS
Most patients that come to the Jemsek Specialty Clinic have seen 5 to 15 doctors for the symptoms listed above. They have seen neurologists, psychiatrists, rheumatologists, cardiologists, gastroenterologists, and internal medicine specialists. They have often been treated for one of more of their individual symptoms without knowing the cause of those symptoms. When treatment for their symptoms is stopped, the symptoms typically re-emerge. This is not unusual if one stops taking high blood pressure medicine, the blood pressure usually rises again.

On the matter of the IDSA review

http://www.jemsekspecialty.com/shownews.php?id=30

IDSA Review Panel Results Called Highly Suspect

"There is no justification for relying on flawed science for continuing its recommended guidelines and arming insurance companies to deny health benefits to insured Lyme victims. If the panel was not prepared to recognize the studies that support longer courses of antibiotic treatment for chronic sufferers, it should have included a call for continued scientific study of this topic among its suggestions. It is time for the IDSA doctors to stop defending their reputations and get back to the work of helping sick people to get well."

Although the above video was of 2009 Into The Light Gala I had not started this blog then and it is something I wanted to post about. I remember Dr Jemsek saying that of the top 20 chronic illnesses in the USA they only know the cause of two Helicobacter Pylori a bacterial infection causing stomach ulcers and HIV a viral infection.

How many patients went under the knife for a stomach ulcer unnecessarily and how many AIDS patients died before HIV was accepted? Already Lyme disease is a greater epidemic in the USA than HIV.

BBC NEWS LYME DISEASE WARNING

BBC NEWS York & North Yorkshire

Lyme disease threat to walkers on North York Moors

Walkers on the North York Moors are being warned to check their skin carefully after being out on the moors.
Ticks, from deer and sheep, infected with Lyme disease are said to pose a serious risk to health as Peter Lugg found out.

To watch the clip click here

Ticks can be found throughout the UK so it is important to be vigilant. It is easy to miss the sometimes poppy seed sized tick and not everyone gets the bulls eye rash. Not all ticks carry Lyme Disease, Borrelia, but ticks which feed off any small mammal such as rats, mice or birds etc., can carry a multitude of infections most of which are never even tested for. We can't exactly ask the tick if it picked up an infection in it's last feed and if so which infection. By the time we are really sick it is often too late to treat as an early stage infection and if that opportunity is missed then longer courses of treatment are sometimes needed to clear the infection according to the ILADS Guidelines.

It is good to see an increasing awareness in the media but so much more needs to be done. If only I had known 7 years ago that we could catch Lyme Disease in the UK, I had thought it unique to USA. If only the doctors I saw with bites, rashes , summer flu' like no other I had ever experienced, migrating arthralgias, not to mention the doctor I asked if it could be from an insect bite, who firmly said no with the shake of her head, if only they had known.

To think that all that arthritis pain and disability, muscle weakness, dysphargia, fatigue, peripheral neuropathies could have been avoided with more doctor and patient awareness. 6 1/2 years of chronic illness could have been avoided with just a few weeks antibiotics.

Shocking isn't it but what is more shocking is the children who suffer undiagnosed and untreated and they are the most vulnerable.

Thankfully there are a growing number of doctors here in the UK who are realising there is more to this controversy over Lyme treatment than they have been led to believe. Where I live in Guildford there are an increasing number of patients I am getting to know with Chronic Lyme Disease but also an increasing number of patients who are seeking and receiving early medical attention.

For more information look at UK charity website Lyme Disease Action