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.

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

PROBLEMS WITH TESTING

'Therefore using only ELISA as a screening test or for diagnosing Lyme borreliosis seems debatable.'

Well that is an understatement, but a step in the right direction, if only our Health Authorities would listen.


Arch Immunol Ther Exp (Warsz). 2011 Jan 22. [Epub ahead of print]

Serodiagnosis of Borreliosis: Indirect Immunofluorescence Assay, Enzyme-Linked Immunosorbent Assay and Immunoblotting.

Wojciechowska-Koszko I, Mączyńska I, Szych Z, Giedrys-Kalemba S.
Department of Microbiology and Immunology, Pomeranian Medical University, Powstańców Wielkopolskich 72, 70-111, Szczecin, Poland, IwonaKoszko@interia.pl.
Abstract
Lyme disease is an infectious, multi-system, tick-borne disease caused by genospecies of Borrelia burgdorferi bacteria sensu lato, characterized by remarkable heterogeneity. In this situation choosing an optimal antigen array for diagnostic tests seems problematic. The serological tests for borrelia routinely done in laboratories often produce ambiguous results, which makes a proper diagnosis rather complicated and thus delays the implementation of an appropriate treatment regimen. Thirty-seven outpatients and eight inpatients with suspected borreliosis diagnosis hospitalized at the Clinics of the Pomeranian Medical University (Szczecin, Poland), participated in the study. In order to detect the antibodies against Borrelia sensu lato three kinds of serological tests were used: indirect immunofluorescence assay (IIFA), enzyme-linked immunosorbent assay (ELISA), and immunoblot. The IIFA and immunoblot tests conducted on 45 patients (100%) produced positive results for both the IgM and IgG antibody types. In the case of ELISA, positive or borderline results were observed in only 24 patients (53.3%). The immunoblot test for IgM most frequently detected antibodies against the outer surface protein C (OspC) antigen (p25), and, in the case of IgG, against the recombinant variable surface antigen (VlsE). The IIFA screening test used for diagnosing Lyme borreliosis produced the highest percentage of positive results, which were then confirmed by immunoblot, but not by ELISA. Therefore using only ELISA as a screening test or for diagnosing Lyme borreliosis seems debatable.
PMID: 21258869 [PubMed - as supplied by publisher]


http://www.ncbi.nlm.nih.gov/pubmed/21258869

In fact there has been a considerable body of research over many years showing the problems over testing for Lyme Disease and not just the Elisa but also the Western Blot.

See Steven Phillips presentation to the IDSA review panel 25 studies on seronegativity and persistent infection. here

Interestingly Steven Phillips highlights on 18 occasions were the authors of the discredited IDSA Lyme Disease guidelines were involved in those studies but failed to include in their guidelines. When asked why by the Chairwoman at the end on the hearing Steere replies that he has changed his opinion. Yes OPINION is what is driving the IDSA guidelines for Lyme disease.

The recent Institute of Medicine workshop on the state of the science for Lyme Disease and other Tick borne diseases leaves the listener in no doubt that testing is just not reliable in any of these illnesses and that for some long courses of treatment are needed to deal with some chronic tick borne diseases.

The Video casts are still available to watch here

One of the most significant presentations was that of Ben Luft who recently Sequenced the Genome for Borrelia here he points out the difficulties over testing because of the various different strains of Borrelia but he also emphasises that it is a relapsing illness. You can read a phonetic translation of his presentation here

How many thousands of patients have had negative test results for Lyme Disease and been told by their doctors they don't have Lyme Disease, when in reality they do but the poor testing has missed the result.

Interestingly Doctors are not warned about the possible seronegative results even though here in the UK the makers of those test kits Trinity Biotech say-

'Negative results (either first or second-tier) should not be used to exclude Lyme disease.'

How many patients with Fibromyalgia, ME/CFS, Arthrits, Muscle weakness, Polymyalgia Rheumatica, Neurological illnesses like Multiple Sclerosis, Motor Neurons, Parkinson's and many more health problems are properly assessed for Lyme Disease or other tick borne diseases?

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.

DOCTORS MUST LISTEN TO THEIR PATIENTS

Peter Demitry, a physician, former Navy test pilot and father of ill children received a standing ovation from the audience when he spoke emotionally of the contrast between the early health-filled years of his family and the nine years following his teenage son’s tick bite.

He said

“Lyme moms” and his own patients “taught me more in two years than I’d learned practicing orthodox medicine in twenty.”

Dr. Daniel Cameron, former president of the International Lyme and Associated Diseases Society, estimated a chronically ill Lyme patient’s annual medical costs for treatment of Lyme and co-infections to be $16,200, bringing the total cost to Virginians to about $67 million annually.

Virginia Governor Bob McDonnell’s newly appointed Lyme Disease Task Force held an expert testimony hearing Tuesday, November 30 at Patrick Henry College in Purcellville. for more information click here

-------------------------------------------------------------------------

Of the 5 doctors and 3 Rheumatologists I saw the biggest problem was that they did not listen to me describing my symptoms.

One Professor of Rheumatology who works at our top London Hospital examined me. He established that I had bursitis in my right hip although two years earlier my local Rheumatologist established I had bursitis in my left hip, infact there was little to choose between the pain in both hips throughout that two year period.

The Prof. also established I had problems with hips which he said was osteo arthritis they were very painful when he manipulating my legs. (since long term antibiotic treatment they are now completely recovered no pain no signs of arthritis or stiffness)

He examined my shoulders, ankles and knees which were also painful and said there were signs of arthritis.

I had been referred to him by my GP because I had arthritis in virtually every joint and muscle weakness in many muscles. I had been on steroids 20 months for Polymyalgia Rheumatica diagnosis but when given antibiotics for a chest infection my arthritis and muscle weakness significantly improved and led GP to suspect Lyme Disease. ( her computer confirmed times I had visited the surgery with bites, rashes, summer flu' and migrating arthralgias)

This Prof. was recommended to GP by the 'expert' at HPA as being someone with an interest in Lyme Disease.

He examined my wrists last and his comment to me was 'what have you done to sprain your wrist?'

I think at that point I realised I was wasting my time with him he clearly was not listening, I had said that I had pain and stiffness in virtually every joint many of which he had already confirmed so why when he got to my wrists did he question if I had damaged them somehow?

He said that the blood tests for Lyme being negative he was assured by the 'expert' at HPA meant I did not have Lyme Disease. ( This was so clearly a false premise as I had been on steroids for 20 months which suppress the immune response and that is what is measured with a Lyme Disease test the immune systems ability to produce antibodies. Since having access to the Internet the abundance of research available shows that these tests so relied upon by our doctors are missing at least 50% of cases.)

The Prof.'s diagnosis was Lyme Neurosis from reading too much on the internet about Lyme Disease. (Little did he know at that time I did not have access to the Internet and it was in fact my GP who suspected Lyme Disease. ) He wrote this to GP and said I had ME/CFS and should try antidepressants and CBT.

Thank goodness my GP had listened to my symptoms had seen my incapacity and many signs of inflammation and improvements and she continued to treat me following ILADS guidelines and most importantly I continued to improve in health.

Until the science which is still emerging in the field of tick borne illness is more widely disseminated amongst our doctors it is important to do our own research so we can best advocate for what treatments help us.

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.

RESEARCH GAPS IN TICKBORNE DISEASES

Congressional Record
111th Congress (2009-2010)

ISSUES REGARDING LYME DISEASE -- (Extensions of Remarks - September 29, 2010)
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:

[Page: E1872] GPO's PDF
---SPEECH OF
HON. CHRISTOPHER H. SMITH
OF NEW JERSEY
IN THE HOUSE OF REPRESENTATIVES
WEDNESDAY, SEPTEMBER 29, 2010

Mr. SMITH of New Jersey. Madam Speaker, as chair of the congressional Lyme Disease Caucus and a person who has been closely involved in Lyme disease issues for over twenty years, I want to bring to your attention extremely troubling issues regarding Lyme disease.

Lyme disease is the most common of all vector-borne infections in the U.S., with approximately 290,000 new cases in 2008. With the increase in Lyme cases, problems due to poor diagnostics and ineffective treatments for Lyme disease have become almost overwhelming--affecting larger numbers of people over longer periods of time.

Many patients are angry because progress in addressing Lyme disease has been impeded by entrenched bias and a lack of accountability in the science of tick borne diseases. It is critical that we identify biases and impediments that are constraining the science on Lyme and to open up the dialogue to honest and transparent debate. The scientists who have long been marginalized, the treating physicians who have felt intimidated and threatened, and most importantly the sick patients and their families need our help.

My main purpose here today is to introduce for inclusion in the Congressional Record the following statement ``The Patient Perspectives on the Research Gaps in Tick Borne Diseases,'' written by three of the Nation's largest Lyme disease advocacy organizations, who represent tens of thousands of patients. I believe that this statement provides important perspectives that need to be heard and taken to heart.

PATIENT PERSPECTIVES ON THE RESEARCH GAPS IN TICK BORNE DISEASES

(Submitted by Time for Lyme, the national Lyme Disease Association, and the California Lyme Disease Association on behalf of our patients across the United States)

In December 2009, Labor HHS 2010 appropriations language, signed into law by President Obama, encouraged the National Institutes of Health (NIH) to ``sponsor a scientific conference on Lyme and tick-borne diseases ..... the conference should represent the broad spectrum of scientific views ..... and should provide a forum for public participation and input from individuals with Lyme disease.'' The language also requires NIH to identify research gaps to understand the ``mechanisms of persistent infection.'' The passage of this language represents a significant opportunity to summarize and solidify the issues that prevent scientific progress for a disease recognized here for 35 years, if, and only if, this process occurs without bias. Progress can be accomplished if the stewards commit to the elimination of predisposition by key decision makers.

It is not clear why the NIH elected to subcontract this issue to the Institute of Medicine (IOM), given that the existing NIH conference structure contains the best process to address the appropriations language requirements. According to the NIH Consensus Development Program, which explains the two relevant types of conferences offered by NIH, ``when the available evidence is weak or contradictory, or when a common practice is not supported by high-quality evidence, the State-of-the-Science label is chosen.'' This conference format would appropriately address the research gaps that exist for Lyme and tick-borne diseases as it provides a ``snapshot in time'' of the state of knowledge on the conference rather than a policy statement of the NIH or the Federal Government.

In Lyme disease, there are two distinct disease paradigms, each providing science to support its claims. One paradigm views the disease as ``hard to catch and easy to cure'' and denies the existence of chronic Lyme disease--persistent infection with Borrelia burgdorferi, the spirochete that causes the disease. Under this paradigm, the state of the science for patients with chronic Lyme disease is closed. Any treatment is considered too risky because practitioners are unable to determine the cause or extent of patient symptoms, or they view the symptoms

[Page: E1873] GPO's PDFas insignificant and write off the patients' complaints as psychiatric in nature. This leaves seriously ill patients without any viable therapeutic avenues. It also shuts the door on future research necessary to get patients to a state of wellness.

The alternative paradigm says that the science is too unsettled to be definitive and there can be one or more causes of persistent symptoms after initial treatment in an individual who has been infected with the agent of Lyme disease. These causes include the possibility of persistent infection, or a post-infectious process, or a combination of both, with the Lyme bacterium itself driving the autoimmune process. This paradigm allows doctors the ability to exercise their clinical judgment and provide therapies that are helping their patients.

Patients with Lyme disease need a research agenda that reflects outcomes that matter to patients, namely effective diagnostic tools and effective treatments that restore them to health. The reason there are two disease paradigms in Lyme disease is because central pieces of the puzzle are missing or are inadequate. The first area of concern involves testing.

There are no reliable biomarkers of the disease.\1\ Current diagnostic tests commonly used do not detect the spirochete that causes Lyme disease, rather, they detect only whether the patient has developed antibodies to the pathogen. Antibody production, if it registers on the tests at all, takes weeks to appear, thus rendering the current tests ineffective in the earlier and more easily addressed stage. Additionally, the Lyme antibody has been shown to form a ``complex'' with the bacterium itself--and tests cannot detect ``complex'' antibodies. Once triggered, antibody reactions may remain long after an infection has been treated, also clouding the diagnostic and treatment picture.

The two-tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) is very specific for Lyme disease (99%), so it gives few false positives. But the tests have a uniformly low sensitivity (56%)--missing 88 of every 200 patients with Lyme disease. By comparison, AIDS tests have a sensitivity of 99.5%--missing only one of every 200 infected patients.\2\ Sensitive AIDS tests were developed less than 10 years into the disease, while archaic Lyme tests remain unreliable 35 years later. There is a critical need for research exploring newer technologies such as polymerase chain reaction (PCR), which is used with many other diseases, and cutting-edge proteomics. Strain variations and co-infections with other organisms, often transmitted by the same tick bite, obscure the diagnostic picture further.

A vast number of strains of Borrelia burgdorferi have been identified. Variation in strain may cause differing symptoms or severity of symptoms as well as determine the appropriate antibiotics and duration of treatment needed to clear the infection.\3\ Different strains may also express different proteins. Preliminary research shows that proteins need to be examined to find the ones most often expressed, then using microarray technology, doctors may be able to diagnose patients using a chip which contains the proteins.

Research is needed concerning the role of mutation on persistence. Some research indicates that bacteria can exchange genetic material, probably contributing to its ability to invade different systems in the body--some may have a proclivity for the heart muscle, others for the brain, and some for muscles and joints. By exchanging genetic material, bacteria may be able to form a symbiotic relationship to avoid detection by the immune response or to further invade the body.

To date, every NIH-funded treatment research study has been designed using the inaccurate diagnostic test results as part of the entry criteria. The entry criterion in these studies excluded the vast majority of Lyme patients and created sample sizes too small (less than 220 patients to date) to detect clinically important treatment effects or generalize to the clinical population. Moreover, Lyme has not attracted industry funding for treatment approaches, which places the disease at a considerable research disadvantage. To detect clinically relevant treatment effects requires much larger treatment trials with sample populations that reflect those seen in clinical practice.\4\

One thing that past research has demonstrated is that patients with Lyme are a heterogeneous population. Hence, the course of illness and responsiveness to treatment may vary depending on the duration of onset of the disease to its diagnosis and treatment, the presence of co-infections, comorbid factors, other genetic characteristics of the patients, and the virulence of the strain(s) with which the patient is infected. Research sample populations must reflect those seen in clinical practice to yield clinically relevant results.

As advised by the Appropriations language, research on the pathophysiology of Lyme disease is necessary. Research projects need to be designed which determine the course of the disease from inception, and which utilize treatments that effectively interfere with the mechanisms that allow the infection to persist. Little to no government sponsored science has been dedicated to the effects on persistence of the different forms of the Lyme bacterium (cyst vs. flagellar), the role, if any, of biofilms, sequestration of the organism from the immune system, the exchange and mutation of genetic material of the spirochete, and the role that components of the bacterial genome may play in protecting it from eradication by the immune system or antibiotics. Understanding the pathology of the organism can greatly enhance targeted diagnostics and treatment modalities.

Patients also need studies that explore a range of treatment options. The ideal antibiotics, route of administration, and duration of treatment for any stage of Lyme disease are not established. No single antibiotic or combination of antibiotics appears to be capable of completely eradicating the infection in all patients, and treatment failures or relapses are reported with all current regimens, although they are less common with early aggressive treatment.\5\ Treatment failure rates suggest the need to re-examine the effectiveness of the currently recommended monotherapy as a treatment approach. Studies need to explore combination treatments and longer term treatment regimens, which have been critical to the successful treatment of AIDS and tuberculosis.

Patients need the type of outcomes research advocated by the IOM to examine how well treatments are working in actual clinical practice.\6\ While not all patients with chronic Lyme disease have returned to a state of wellness, many have, and we need to find out how and why. This information can then be applied to other patients and used to establish a research agenda for treatment that has a likelihood of success, rather than abandoning patients based on limited treatment trials.

The IOM process does not allow these research ideas to be heard in an unbiased and transparent fashion with balanced divergent viewpoints. While the NIH process precludes bias on the part of panel members, the IOM does not. Four of the six members of the IOM panel that have been selected belong to IDSA, a medical society that has a known bias against chronic Lyme disease diagnosis and treatment. Rather than providing curative treatments that restore health, the IDSA would provide costly and long term palliative treatments, presumably for life. While the NIH requires participation by major stakeholders (including patients and treating physicians), the IOM does not.

The summary of the IOM proceedings will reflect this pervasive lack of objectivity, undermining its integrity and credibility. Additionally, much IOM deliberation is done behind closed doors and an anonymous panel will be permitted to comment on the written record. Because of such flaws in the IOM proceedings, the three largest patient interest groups who were offered a brief opportunity to speak (TFL) at the IOM October 2010 meeting and an opportunity to provide a commissioned paper--CALDA, the LDA and TFL--pulled out of the conference in protest.

From a research perspective, strongly held paradigms can create a closed loop, and experiments may be designed, implemented and interpreted to support a particular viewpoint.\7\ The antidote to bias is to balance scientific perspectives and to ensure that all scientific viewpoints are being heard and explored. Given the extraordinary stream of federal funding granted to researchers who support the closed paradigm which was created and is supported by the Infectious Diseases Society of America (IDSA) and their vested interest in maintaining the status quo, it is not reasonable to expect this group of researchers to serve as neutral arbiters of scientific debates over competing scientific paradigms. For example, Lyme related panels dominated by IDSA have time and time again excluded opposing viewpoints from participating or controlled the review process to ensure outcomes that reinforce the IDSA paradigm. If past is prologue, it is obvious what the future holds for panels dominated by one group.

Worse, the small treatment trials that have been conducted have been given an undue amount of weight by IDSA researchers and in its guidelines and used to apply a degree of certainty on the science that far exceeds the limitations of the small sample sizes of the studies. Further, they claim that the state of the science is sufficient to determine with certainty that chronic Lyme disease does not exist, is not treatable with antibiotics, and that no further research on this topic is needed. Sample size affects the strength of the conclusions that may be drawn from them: ``Providing definitive answers in the face of low event rates and small-to-moderate treatment effects necessitates sample sizes in the thousands or tens of thousands. ..... Funding for such mega-trials is very limited, and is often restricted to industry sources.'' \8\

For that reason, the Connecticut Attorney General antitrust investigation into the development process of IDSA Lyme guidelines found exclusionary practices and suppression of divergent viewpoints on the part of IDSA panels that crafted IDSA 2000 and the 2006 Lyme disease guidelines. Although IDSA settled the investigation with the Attorney General by agreeing to review its guidelines with a panel without conflicts of interest, the control of the process was in the hands of IDSA, which again selected a panel consisting almost exclusively of IDSA members and excluding treating physicians who held divergent viewpoints.

It was patients who pressed for the language in the Appropriations bill that called for a review of the state of the science of Lyme disease. However, patients need that process to occur in a transparent manner, without bias, and with the participation of all stakeholders. Albert Einstein defined insanity as ``doing the same thing over and over again and expecting different results.''

[Page: E1874] GPO's PDFThis process is a perfect example of that insanity.
Patients want research which will restore their health. Their voice and the voice of the clinicians must be given the necessary weight to legitimize the research agenda and the research process. Truth in science can be achieved through open debate in an independent process free from bias and conflicts of interest. The scientific process fails when one side of a debate controls the arena and sets the rules to ensure that its viewpoint prevails.

Lorraine Johnson, JD, MBA, Chief Executive Officer, California Lyme Disease Association.

Patricia V. Smith, President, Lyme Disease Association, Inc.

Diane Blanchard/Deb Siciliano, Co-Presidents, Time for Lyme, Inc. ENDNOTES

\1\ Steiner I. Treating post Lyme disease: trying to solve one equation with too many unknowns. Neurology 2003; 60:1888-9.

\2\ Stricker RB, Johnson L. Lyme wars: let's tackle the testing. BMJ 2007; 335:1008.

\3\ Weintraub P. What we don't know about Lyme. Experience Life Magazine June 2009.

\4\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.

\5\ Hunfeld KP, Ruzic-Sabljic E, Norris DE, Kraiczy P, Strle F. In vitro susceptibility testing of Borrelia burgdorferi sensu lato isolates cultured from patients with erythema migrans before and after antimicrobial chemotherapy. Antimicrobial agents and chemotherapy 2005; 49:1294-301.

\6\ Institute of Medicine (Committee on Quality of Health Care in America). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press, 2001.

\7\ Ernst E, Canter PH. Investigator bias and false positive findings in medical research. Trends Pharmacol. Sci. 24(5), 219-221 (2003).

\8\ Guyatt GH, Mills EJ, Elbourne D. In the era of systematic reviews, does the size of an individual trial still matter. PLoS Med, 2008; 5:e4.

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

For detailed information leading to the above Speech see CALDA blog at Lyme Policy Wonk

TIPPING POINT IN THE SCIENCE SURROUNDING LYME DISEASE?

Evolution and Distribution of the ospC Gene, a Transferable Serotype Determinant of Borrelia burgdorferi

Alan G. Barbour and Bridgit Travinsky

http://mbio.asm.org/content/1/4/e00153-10

The full article is available through the above link and something I felt was highly important was

'Nevertheless, we doubt that the observed antigenic diversity of OspC is merely epiphenomenal to functional differences between proteins. The range of pairwise sequence distances among family of surface proteins of the relapsing fever agent ospC alleles nearly matches that of the highly polymorphic Borrelia hermsii immunity (4). Possibly, both immune and niche selective forces are in play, but their relative contributions remain to be determined.'

I was alerted to this through the comments from

Microbe World

Lyme Disease Bacterium Collaborates with Accomplices to Evade Immune System

submitted by Merry Buckley on September 29, 2010

http://www.microbeworld.org/index.php?option=com_jlibrary&view=article&id=4903

Warning: the bacterium behind Lyme disease is collaborating with its accomplices to construct a gene that can defeat your immune defenses.

Although this work supports much that Ben Luft has been studying for some years and has been found by other researchers over the last 20 years, the significance as I see it is that Barbour an IDSA doctor has long since supported the IDSA Guideline Authors stance and this very clearly is a move towards what ILADS doctors have been saying for years.

Are we at last at that long awaited tipping point in the science surrounding this emerging disease?

I previously posted the Tom Grier lectures, links in my side bar an extract from lecture number 4 below shows that Pachner had already published on similar findings.

PACHNER MOUSE BRAIN MODEL

1) Normal uninfected mice are inoculated with Borrelia burgdorferi in the tail vein.

2) One month later, blood is isolated from the tail of the same mouse, and the bacteria are isolated for tests.

3) The bacteria are also isolated from the brain of the same mouse, and kept completely separate for testing.

4) The antibodies from the mouse’s blood recognize and attack the bacteria that were isolated from the blood of the mouse.

5) The same antibodies fail completely to recognize the bacteria that were isolated from the same mouse’s brain; it is as if these bacteria were completely invisible to the mouse’s immune system.

What has happened to the bacteria in the mouse brain?

Once the bacteria were isolated within the brain, it was then cut off from the peripheral immune system.

This allowed the bacteria to change with each new bacterial division, and without the mouse’s immune system recognizing the changes; it is just like a criminal getting a face-lift and wearing a disguise.

The immune system kept up with the bacteria trapped in the blood, but could not make antibodies to the Lyme bacteria trapped within the brain.

The antibodies that were being produced no longer recognized the bacteria because it was still looking for the original strain, and what were now in the mouse’s brain were several generations away from the strain that Dr. Andrew Pachner started with.

Basically in crude terms, the Lyme bacteria that became isolated within the brain, mutated.

The Lyme spirochete we started with that was originally injected into the tail, is no longer the same isolate that Dr. Andrew Pachner found in the brain of the same mouse.

You now begin to see how current Lyme tests that are created using a laboratory strain of bacteria; a strain not even found in nature, can hardly be expected to keep up with the over 200,000 possible variations that Borrelia are capable of producing.

These findings give reasons for:-

the problems with seronegativity,

the problems in finding effective vaccines

the reasons why the immune system and antibiotics combined have difficulty eradicating the infection especially the longer it is allowed to get established.

Public awareness and Doctor awareness is an immediate concern to prevent others un-necessarily being infected and allowed to progress into a chronic health problem for which there is no known definitive treatment cure.

HOW TO LEAVE SICK PEOPLE SICK

How to leave sick people sick- ignore everyone with a different opinion.

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 Outcomes
details here

On first reading this, most Lyme Disease patients would think, good at last all will be put out in the public domain and discussed openly.

Not a bit of it, even to the uninitiated it is not difficult to see that none of the ILADS doctors are presenting.

Yes those doctors around the World who are involved with treating Thousands of patients for Lyme disease most of which improve on their treatments, are not included. ILADS doctors do not just treat Lyme Disease but the many co infections that IDSA members conveniently ignore.

Many patients who fail the short courses of treatment doled out by IDSA doctors just move along and find a good Lyme literate doctor who is prepared to consider that for some ILADS treatment guidelines are needed.

How will the IDSA doctors ever learn if they close their ears and minds to alternative views?

Has science stopped evolving when it comes to Lyme Disease?

When you have been in so much pain and disability, from in my case Arthritis and muscle weakness and after months of antibiotics clawed your way back to nearly 100% health is it any wonder the patients advocate for a more open process.

Below is a letter to the IOM from the President of ILADS.

**********************************************************************
IOM panel and selected speakers for Lyme Disease and Other Tickborne Diseases: The State of the Science


Dear Dr. Coussens: I am writing on behalf of the International Lyme and Associated Diseases Society (ILADS) to express our disappointment with the lack of balance in the selection of the IOM panel and speakers for the “State of the Science” review of Lyme disease.

The science in Lyme disease has been a topic of great debate and polemic viewpoints. The two viewpoints are reflected in Lyme guidelines from the Infectious Diseases Society of America (IDSA) on the one hand and the Lyme guidelines from ILADS on the other, both evidence-based.

It is of great concern that four of the six panel members selected by the IOM are IDSA members because IDSA is known to have a strong institutional bias in its interpretation of the science in Lyme disease. In addition, IDSA has been investigated by the Connecticut Attorney General, who found extensive conflicts of interest and suppression of scientific evidence in the guideline development process. The fact that IDSA ultimately vindicated its own guidelines through a self-selected review panel that excluded treating physicians and was comprised almost exclusively of IDSA members should be no surprise given the bias of the review panel.

There is a significant disconnect between IDSA and the community of physicians who treat Lyme disease. There is also an urgent need for transparency in recognizing the limitations of the existing Lyme research. The bulk of the research on Lyme treatment has been controlled by IDSA researchers. Their research is based on sample populations that do not reflect those seen in clinical practice. These researchers then apply their interpretation of their own research (in which they have a vested interest in terms of personal reputation, academic careers, and commercial interests related to diagnostic tests, vaccines, and expert witness fees) to clinical care through guidelines, resulting in enormous harm to patients.

Dr. Willy Burgdorfer of the National Institutes of Health and discoverer of the Lyme spirochete, puts the research into perspective: “The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people that have for the past 30 years produced the same thing— nothing.”

In particular, we have grave concerns that:

· The speakers do not include any physicians from ILADS, many of whom have published in peer-reviewed journals, conducted clinical research, and are extensively familiar with the science related to Lyme disease;

· Dr. Wormser, who authored the IDSA guidelines and ran the guidelines panel that suppressed non-conforming evidence, is the only person addressing the state of the science and gaps, and as the first speaker he will frame the issues for the conference without opposing viewpoints being presented;

· Dr. Aguero-Rosenfeld, who, until recently, worked for Dr. Wormser until recently, is the key speaker on laboratory testing, and opposing viewpoints on this topic will not be presented;

· Seven of the speakers were either members of the IDSA guidelines panel or were included on copycat guidelines generated with members of the IDSA guidelines panel;

· Over 70% of the physicians awarded the key 25 minute speaking slots are either members of IDSA or sat on the IDSA guidelines panel or were included on copycat guidelines generated with members of the IDSA guidelines panel;

· Researchers and physicians who are more open-minded in terms of understanding the treatment implications of research for chronic Lyme disease were either excluded from speaking, relegated to topics that are not their specialty, or placed on panels where their time to speak will be severely limited.

We do not believe that the selection of the “State of the Science” panel or the speakers reflects the diversity of scientific viewpoints in this highly controversial area. This lack of balance and diversity will necessarily erode the integrity of the process and the results. We encourage you to revamp the process to address these issues.

Sincerely yours,
Dr. Robert Bransfield, MD, DLFAPA
President, ILADS

see details on CALDA blog also here here and here

BRAVO LE MONDE, SENSE AT LAST

Published yesterday in Le Monde the French National newspaper here

Translated with Google Translate apologise for the inaccuracies but far better than my ability to translate and sufficient to understand that for once a decent summary of the situation with Tick borne Disease, Borreliosis including Lyme Disease.

The last two paragraphs which I have highlighted in blue is the best I have read in a National newspaper yet.

There is not enough awareness of the dangers of Tick borne Illness. I thought Lyme Disease was unique to the USA until after 4 years of chronic arthrits and muscle weakness my GP suspected that it was caused by Lyme Disease. I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica but finally recovered my health on long term antibiotics following ILADS guidelines. If I had been left treated following the IDSA guidelines which our Health Protection Agency insist our doctors follow, despite considerable evidence and research which supports ILADS, I have no doubt I would have remained chronically ill.


Tick-borne diseases, dilemmas and controversies

by Sylvie Rinaudo , Dr. Engineer, eco-consultant
26.08.10

The summer and the holidays we confront massive small as the attackers are the biting insects and arachnids. Among the arachnids, ticks, which thrive at the expense of warm-blooded animals, which includes humans. Ticks wait on blades of grass or a calf shank passes nearby to grab hold of, and locate their prey to the heat, and smell.

Is it global warming that increases the number of ticks, which does not die during winters become too soft? Is the increase in forest wildlife due to the decrease in consumption of game, which leads to a proliferation of deer and wild boar? The fact is that ticks are more numerous, and the number of bites increased accordingly.

During blood feeding, they are likely to transmit diseases to their host, the best known in our climate is the disease (borreliosis) Lyme.

What happens to those infected? If they develop a rash around the bite, and consult a doctor, they are likely to be diagnosed carriers of Lyme disease, and benefit from antibiotic treatment. However, we know statistically that about half of those infected by this disease do not develop this sign warning Pathognomonic.

The disease may then persist and spread throughout the body. She is particularly fond of the joints and the nervous system, but the whole body is potentially parasite. If the notion of tick bite is present, the doctor may use a serodiagnosis, which will highlight possible contact with the infectious agent of Lyme disease.

This is where the dilemma begins, because Serodiagnostics borreliosis are far from reliable ones are used, for example, to detect HIV. This means that a significant number of people may be falsely reassured, while patients without a diagnosis. Ideally, physicians compensate for this lack of reliability of Serodiagnostics asking a clinical diagnosis, from all the patient's symptoms.

New dilemma: Lyme disease mimics many other diseases, and many practitioners have never met a direct and certain. Difficult for them to identify a clinical presentation that differs from the archetypal taught, so they may miss in good faith a real patient of Lyme, the more easily it will present a doubtful serology.

The more the disease is detected late, it is more difficult to treat. This is where two opposing currents medical, because in addition to the dilemmas previous medical controversy. The famous Infectious Diseases Society of America Infectious Diseases Society of America (IDSA), which has an undeniable dominance in international medical publications on infectious diseases, says that several weeks of antibiotic treatment sufficient to rid of those infected with Lyme disease. If, according to the IDSA, the patient is not cured at the end of this short course is that it suffers from something else, or a "post-Lyme syndrome", body wave and incurable .

Another American ( mistake it is actually International) Medical Society, the International Lyme and Associated Diseases Society (ILADS) recommends treatment longer for older cases, and taking into account other illnesses that may have arisen in the course of the tick bite, and denies the notion of post-Lyme syndrome, which she said would only be the result of inadequately treated Lyme disease.

The IDSA complains that long-term antibiotics are treatments that can cause side effects,

ILADS argues that the damage caused by the disease, if it is poorly or inadequately treated, are irrelevant in terms of severity and disability, with the side effects of antibiotics.

However, it appeared that among the experts who drafted the guidelines of the IDSA treatment for Lyme disease, mainly applied in the U.S., many had conflicts of interest. Some doctors engaged as consultants for private medical insurance who refuse treatment cost time, others have participated in developing patents for vaccines antiborréliens, as shown in the excellent documentary "Wilson" Under Our Skin

The Attorney General of the State of Connecticut, seized by the U.S. Lyme disease patients, has investigated the IDSA , And noting the shortcomings and conflicts of interest, requested that the medical society to change its treatment guidelines for Lyme disease, so far without success.

What have we, the French, to do with this dark affair medical pharmacofinancière, which seems purely American?

Unfortunately, everything.

Indeed, French treatment guidelines Lyme disease, established in 2006 a few months after those of the IDSA, follow these closely.

That is to say that the U.S. guidelines for medical treatment, defendants in their country by people suffering from this disease and some practitioners who care for them, indicted by the Attorney General of the State Historical pathology (the town of Lyme, which gave it its name, is located in Connecticut), have so far been applied in France, officially the French Lyme patients.

These guidelines have the merit of French exist and to encourage treatment. However, for old cases of Lyme disease, they incur the same criticism that their American counterparts.

In his book entitled "The Hell of Matignon, Raphaelle Bacqué, journalist at Le Monde, quoting Laurent Fabius, former prime minister Francois Mitterrand, speaking about the contaminated blood scandal:

"Must exist in society and state, sensors, enabling the political authority to make good decisions, even if these are not decisions that are recommended by the scientific community. Thus, at the time, those who held the truth have not been heard. But there must, in society and the functioning of the state sensors to a young researcher who says the opposite of a big shot, but we'll see five years later he was right can be heard. "

The France would do well by taking into account the two existing systems of medical guidelines, which would treat the few hundreds (thousands?) French Lyme patients left behind by the only system of guidelines being applied. Ultimately, it would probably be cheaper for health insurance, and incomparably less costly in human terms.