THE CHALLENGES OF LYME DISEASE: EMERGING RESEARCH-PEDIATRIC CARE

If you click on the above you will be able to read the details.



What an impressive line up of Doctors, Researchers and Advocates.



The meeting was organised for yesterday by Eva Sapi at New Haven University



This is the New Haven Lyme research page here



Dr. Eva Sapi, a professor of cellular and molecular biology has Lyme Disease, and is researching it too.



Because of the dedication of all these people and so many more, patients like myself have been helped to get their health back.



Sadly main stream medicine is way behind on the developments of this emerging disease and so if you have symptoms that could be attributed to Lyme Disease you need to do your own investigations before discussing with your doctors.



The symptoms of Lyme Disease are many, mine were mainly Arthritis, Muscle weakness, Fatigue, inflammation, Bursitis diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica and finally Lyme disease and on long term antibiotics, not recognised by main stream medicine for Lyme Disease I have my health and my life back.



Many of the patients I am in touch with on Eurolyme a chat line have neurological symptoms and some have been diagnosed with MS. The worst of my symptoms was Dysphagia, swallowing difficulties and I did have some Peripheral Neuropathies all resolved on antibiotics.

So a big thank you to all these dedicated Lyme Warriors, hopefully the presentations will be available on DVD so that many more Doctors can be educated into helping the thousands more patients who are given symptomatic medication rather than medication fighting the cause of their illness.

TALK THE TALK

A recent published review from head of Lyme Reference unit talks the talk but does not walk the walk.

Curr Opin Infect Dis. 2010 Apr 17; [Epub ahead of print] Lyme borreliosis: current issues in diagnosis and management.O'Connell S.Lyme Borreliosis Unit, Health Protection Agency Microbiology Laboratory,Southampton University Hospitals Trust, Southampton, UK.

'SUMMARY:Greater efforts are needed to provide education for prevention and early diagnosis to avoid late complications. Further improvements in diagnostic tests would be welcomed. More research is required to assess the causes and management of post-Lyme symptoms.'

So what action to increase awareness, well so far not a lot, updating the HPA website is not exactly going to do much to raise awareness because first of all we need to be aware before even looking at the website.

Be tick aware when visiting the great outdoors

5 May 2010
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.
Late spring, early summer and autumn are peak times for tick bites and coincide with people venturing into the great outdoors for the warmer weather.
One of the measures the Health Protection Agency (HPA) has taken this year to raise awareness of tick bites has been to provide advice to The Royal Parks for their leaflet on Lyme disease. The Royal Parks are responsible for looking after 5000 acres of historic parkland in London, including Richmond Park and Bushy Park. Several of these parklands have large deer herds, one of many animals that can carry the hard-bodied tick which can transmit Lyme disease.
The Royal Parks leaflet warns of the dangers of tick bites and what visitors should look out for. Leaflets are available on the HPA and The Royal Parks websites, with paper copies available at the information centres at Richmond Park and Bushy Park.
Ticks can be found in forests, heaths, moorland areas and in suburban parkland. Any area, large or small, in which ticks are present should be regarded as having a potential risk of Lyme disease. In recent years according to HPA figures there have been around 800 laboratory-confirmed cases reported annually in patients from England, Wales and Northern Ireland, with an estimated 2000 to 3000 cases a year in total, (this includes cases that are diagnosed without the need for laboratory tests and cases that are so mild that people do not feel the need to consult a doctor).
The majority of Lyme disease cases reported in the UK are acquired here rather than overseas, often through recreational activities including walking, trekking and mountain-biking. Areas where the infection has been acquired in the UK include popular holiday destinations such as Exmoor, the New Forest, the South Downs, parts of Wiltshire and Berkshire, Thetford Forest, the Lake District, the Yorkshire moors and the Scottish Highlands. Most cases are reported as coming from the southern counties of England, especially from the south-east and south-west.
Ticks are very small (about the size of a poppy seed), and can easily be overlooked, so it is important to check regularly. Most ticks do not carry the infection. If one is found it should be removed promptly, as infected ticks are unlikely to transmit the organism if they are removed in the early stages of attachment. Ticks can be removed with tweezers or special tick hooks, pulling gently upwards away from the skin.
To minimise the risk of being bitten by an infected tick:
Wear appropriate clothing in tick-infested areas (a long sleeved shirt and long trousers tucked into socks). Light coloured fabrics are useful, as it is easier to see ticks against a light background
Consider using insect repellents, e.g. DEET-containing preparations,
Inspect skin frequently and remove any attached ticks
At the end of the day, check again thoroughly for ticks, especially in skin folds
Make sure that children's head and neck areas, including scalps, are properly checked
Check that ticks are not brought home on clothes
Check that pets do not bring ticks into the home on their fur

Notes for editorsFor further information please contact the HPA Centre for Infections press office on 020 8327 7097/6217/7080For further information about the symptoms of Lyme borreliosis and tick bite prevention visit our website: http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/LymeDisease/Lyme disease leaflets produced in conjunction with The Royal Parks are available at: http://www.hpa.org.uk/web/HPAwebFile/HPAweb_C/1271256716650Lyme disease figures are available athttp://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/LymeDisease/EpidemiologicalData/
Members of the public should seek advice about their specific travel health needs from their GP or local travel clinic.

http://www.hpa.org.uk/NewsCentre/NationalPressReleases/2010PressReleases/100505Betickaware/

' Further improvements in diagnostic tests would be welcomed.'

Is that someone acknowledging tests can miss cases of Lyme Disease? Trinity Biotech the makers of the test kits used in the UK acknowledges that a negative test does not rule out the possibility of Lyme Disease. So why are doctors led to believe it does?

'More research is required to assess the causes and management of post-Lyme symptoms.'
Durr!
well yes saying is not doing, sadly and meanwhile can we be treated on our response whilst the science is still evolving?

HELP FOR ME/CFS PATIENT RESEARCH

I read the following letter from Dr Bell a few days ago whilst enjoying a trip to Paris a treat from my daughter. We actually visited Monet's garden in Giverney and photos will appear soon on my garden blog about our trip.

This was a photo of the many steps we climbed and descended around the Montmartre area where we stayed. If you read my Lyme story you will see that for 3 1/2 years I was unable to walk up or down stairs.

Who would have believed I would have recovered sufficiently to travel and spend three days walking around sight seeing. Thanks to ILADS Guidelines I was treated for Lyme Disease and recovered. Many ME/CFS patients find they also suffer with Lyme Disease.

Thanks to pioneering doctors such as Dr Bell and dedicated teams such as the Whittemore Peterson Institute many patients have been given hope of recovery from ME/CFS. Investigations are still in progress on XMRV retrovirus but it seems our governments are not interested in investigating further they would rather thousands of patients continue to suffer horrendous chronic ill health rather than follow one of the best breakthroughs science has had throughout the history of ME/CFS.

Well what a surprise!!

So although I am late in posting this I still decided to do so in the hope that a few more people will read.

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research

David S. Bell MD, FAAPLyndonville, NY 14098May 1, 2010

To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation. Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably. In 1985 an outbreak of CFS hit Lyndonville, NY, and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that’s…I need a calculator. May 12 is our day. Lets do this. After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up. For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436. Thank you.David S. Bell MD, FAAP1.

DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

http://www.wpinstitute.org/news/docs/bell_fundraising_050110.pdf

https://www.wpinstitute.org/help/help_donation.html

UK PETITION PLEASE HELP

Lyme patients and their carers, families and friends are organising a petition to present to the UK government, asking that clinics and specialists dedicated to the treatment of Lyme and other tick-borne diseases may be established. There needs to be more research and monitoring of tick-borne infections, and more skilled treatment for those afflicted.The infections transmitted by ticks are: Borreliosis (Lyme), Babesia, Bartonella, Rickettsia, Anaplasmosis, several viruses and possibly several other as yet undetermined species/parasites.Tick-borne diseases are increasing throughout Europe. One example: Sweden has some regions where there have 400 cases per 100,000 of the population. This year, 2010, a petition by Dutch Lyme patients has collected 65,000 signatures which they are presenting to their parliament because they believe there may be as many as 500,000 people in the Netherlands, out of a population of 17 million, afflicted by the disease. We are hoping to collect many tens of thousands of signatures to have an effect on our government. Even if it takes years, we will eventually speak with enough voices behind us to be able to insist that the government and the health agencies tackle this problem.By collecting signatures, we will at the same time raise awareness of the dangers of tick-borne infections and thereby prevent many thousands of people becoming ill.How has this situation arisen, that people are infected and chronically ill and yet receive only a short course of antibiotics? There are many questions that demand answers, but which will only get answered when there is a huge increase in awareness of Lyme and the co-infections carried by ticks.

http://uklymepetition.atspace.com/index.htm

I do hope those of you who visit my blog will consider signing this petition and asking friends and family to do so too.
Although it asks for a donation it is not necessary to donate in order to add your names to the petition.

http://uklymepetition.atspace.com/our_petition.htm


Our petition

We draw your attention to Lyme disease, or borreliosis, which is increasing in incidence dramatically across Europe and the USA. Lyme disease is a real and present danger for those working or recreating in woods, parklands or even their own back gardens. We ask that the government acts now to increase public awareness of this tick-borne infection, that better diagnostic tests are designed, that specialised treatment is developed to help the many thousands suffering from the chronic effects and that the disease be made notifiable.

Every year tens of thousands of European and UK citizens contract Lyme disease and because of the difficulties with awareness and testing, many go undiagnosed and untreated. Those who receive late or inadequate treatment become partially or completely disabled, with a high cost to themselves and to society. In some cases the disease can be fatal. It is far better to tackle this problem before it gets worse; in some areas it has already reached epidemic proportions. Resources must therefore be devoted as soon as possible to improve diagnosis, treatment and public safety.

Specific demands:

1: That Lyme borreliosis be made a notifiable disease, so that the true incidence becomes apparent.
2: That better methods are actively explored, to test for and diagnose both acute and chronic infections..
3: That doctors are trained in the treatment of borreliosis and other tick-borne infections. Given the number of patients who may now be infected, we ask that special clinics are established where the diverse range of the effects of the disease can be acknowledged and treated.
4: That treatment is extended for as long as necessary, and to include the use of high dose, combination or long-term antibiotics, especially in those patients who have been ill for a long time. Even in those patients who appear to have recovered, a 5-year follow-up would be advisable to monitor the condition.
5: That medical schools and practising physicians are made aware of the research and latest knowledge in diagnosis and treatment of Lyme disease, as well as the other emerging infectious diseases carried by arthropods which may cause co-infections in patients with borreliosis. 6. That all government agencies for the Environment, Health, Sport and Tourism use their resources to make the general public in the UK aware of the potential risks from tick bites and the best ways of avoiding them.


Background Information

The first outbreak of modern-day borreliosis disease occurred in the small town of Old Lyme, Connecticut in the mid 1970s. Since then, in the US and Canada, it has become the fastest growing infectious disease, with more cases than AIDS. In Europe, countries such as Germany, Norway and the Netherlands have reported that cases have been doubling every few years. This year, 65,000 Dutch people have signed a petition to their government; they estimate that up to half a million are suffering from chronic Lyme in their country, and they know that tens of thousands are newly-infected each year.

The numbers are likely to be as bad as this in Britain, but because surveillance, diagnosis and blood tests are all proving inadequate, many Lyme patients end up being told they have Fibromyalgia, Chronic Fatigue Syndrome or Myalgic Encephalomyelitis and may suffer from a host of other chronic symptoms which can manifest as arthritis, bipolar disorder, palpitations and other heart arrhythmias, sudden onset schizophrenia, polymyalgia rheumatica, sudden weakness or even paralysis, heart failure, stroke, back pain, skin lesions etc. Lyme has been shown to pass from a mother to the unborn child and has caused stillbirths and birth defects.

When diagnosed early, antibiotic treatment stops the disease, but if treatment is inadequate, the bacteria may lie dormant, as in TB and syphilis, only to reoccur months or years later. Initial infections are missed because tick bites are painless, and the characteristic bull’s eye rash, called Erythema Migrans or EM rash, only occurs in 50% of patients and may be atypical and hidden from view or even misdiagnosed as ringworm or eczema. Other initial symptoms, such as chills, ‘flu-like fevers and joint aches and muscle pains, may be dismissed by patients and doctors.

While the disease is deemed to be rare, many cases go undiagnosed, and this will perpetuate the myth that Lyme is rare. Many patients will visit several specialists before Lyme is suspected, and this late diagnosis reduces the success with short antibiotic treatment and increases the chances of chronic, difficult to treat symptoms. When patients are undiagnosed, and untreated, the official surveillance statistics are not giving a true picture of how many people have been infected, which makes a strong case for making Lyme a notifiable disease, even though it is not as highly contagious as are other notifiable diseases.

Diagnosis is difficult. It is normally done by testing for the presence of antibodies for the Borrelia bacteria in the blood. Across Europe there is no real standardisation of tests and most of them are based on looking for 1 species, whereas there are many different species of Borrelia causing Lyme disease. Borrelia bacteria can avoid and suppress the immune system, so that patients, some of them the most severely ill, are not making antibodies. Also, there are many documented cases of other bacteria and viruses being passed on in tick bites, and this complicates the clinical picture and the treatment. Some other diseases, e.g. TB, are difficult to diagnose, and scientists sometimes take many weeks culturing the TB bacteria in the laboratory. Given the serious and long-term effects of Lyme, culture and other methods should be considered, even though they are at first sight costly and time-consuming.

Treatment of Lyme and the possible co infections carried by ticks is known to be far from straightforward. Scientific research showed as long ago as 1988 that the bacteria could survive antibiotic treatment so that the patient might relapse afterwards. There are problems in that some people bitten by ticks carry the infection without showing symptoms, so that the diagnosis and decision to treat has to be based on clinical expertise. As in TB, extended treatment with combined or pulsed antibiotics has been shown to be successful, but there is controversy over use of prolonged antibiotic therapy in borreliosis, stemming perhaps from the cost of the medicine and the cost of care during treatment, and from not knowing the end-point of treatment.

The ramifications of not solving this problem, and leaving people to suffer, are far-reaching, with serious implications for the public’s confidence in medicine and the health services, as well as the cost to society of the increasing numbers of people disabled by Lyme disease.

http://uklymepetition.atspace.com/our_petition.htm

JUVENILE RHEUMATOID ARTHRITIS

Juvenile Rheumatoid Arthritis and Juvenile Arthritis are both subjects I have posted about here and here writing Juvenile Arthritis and Juvenile Rheumatoid Arthritis in the search box on my right will show other posts on this subject.

In summary the incidents of Arthritis and Juvenile Rheumatoid Arthritis in UK and USA are increasing yet because of the problems over diagnosis and treatment of Lyme disease children and adults are not adequately assessed to see if their symptoms could be as a result of a bacterial infection Lyme Disease.

Research shows that blood tests can miss 50% of cases that's even if the child is tested for Lyme Disease.

The Institute of Medicine of the National Academies. The subject Lyme Disease the state of the science hearing.

Details of presentations are being posted on the CALDA blog click here

Especially interesting is the speech by Diane Blanchard, Co-President of Time for Lyme, who addressed the issue of scientific bias and the importance of separating fact from opinion. She also emphasized that it was important to listen to patients drawing the parallel to the discovery of Lyme by Polly Murphy, a mother in a local community. Read her speech here

Thank you Diane for your informative speech lets hope it doesn't fall on closed ears.

I suffered chronic painful arthritis and muscle weakness and was put on steroids, yes steroids did reduce the inflammation and enable me to continue part time work but my health problems continued to deteriorate. Eventually my GP considered the possibility of Lyme disease an illness grossly overlooked and marginalised here in the UK. You can read my story in the right hand column but suffice it to say that on long term antibiotics I have my health back and my life and have no pain or disability.

Many illness are ASSUMED to be auto immune and patients rather too quickly given steroid treatments, if infact the illness is a bacterial infection then even long term antibiotics can be far less harmful than steroids and yet because of the biased outdated views doctors are mis led into believing Lyme Disease tests are 100% accurate when in fact 50% is nearer the mark.

Lyme Disease was named after a town Old Lyme in Connecticut, Polly Murray was the person who alerted the Health Authorities because of an increased incidence in Juvenile Rheumatoid Arthritis in a small area in her town.

How come nearly 30 years later doctors are not paying attention to the evolving science on this complex disease?

Well the answers are there in part if you have time to look at the many charity websites links found on the top right of my side bar, but if you read nothing else do read what Diane Blanchard has to say.

DENYING A DISEASE WHILST RESEARCH IS EVOLVING LEAVES PATIENTS WITHOUT TREATMENT

The controversies surrounding Lyme Disease and ME/CFS are both paralleling each other in not dissimilar ways. This leaves thousands of patients struggling with Chronic illness the World over whilst a handful of people have control of their disease refusing to listen to all the emerging science but sticking to the same old biased views.

If you like me have Arthritis, Fatigue, Muscle weakness, Peripheral Neuropathies or like others Neurological illness and have been diagnosed with ME/CFS, Fibromyalgia, Polymyalgia Rheumatica, Arthritis, Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lyme Disease, MS, MN, ALS and the list goes on then click into the following links and read the presentations.

The first is Pat Smith speaking on the subject of Lyme Disease taken from the CALDA blog. Pat is presenting to the Institute of Medicine of the National Academies. The subject Lyme Disease the state of the science hearing.

Reading the list of speakers makes those of us knowledgeable about this illness laugh, if it wasn't so tragic, not one person speaking out from an alternative view, that of ILADS. Pat says it so well. Thank you Pat for all you do fighting the ignorance and denial of Lyme Disease which leaves so many suffering when treatments that can help are denied because those with power choose to close their minds to the emerging science.

Whittmore Petterson Institute Testimony of Annette Whittemore to CFSAC April 25th 2010

Thank you Annette for all your work in fighting for patients with ME/CFS despite our governments efforts to marginalise this terrible illness.

One day the truth will out as science finally catches up with the experiences of patients but until then doctors and researchers and those holding the purse must have an open mind.

Meanwhile as patients we need to get informed, long gone are the days when Doctor knows best, we need to steer our own way through these illnesses with the guidance of doctors prepared to listen and help us.

MEDICAL PANEL RUBBER STAMPS ITS OWN CONTROVERSIAL GUIDELINES

Once again I am disappointed in our National Media for ignoring what is going on over Lyme Disease not just in the UK but also USA, Canada and the rest of Europe.

They can't see what a medical disgrace is happening under their noses if they only took just a short time to read around the subject they would soon realise that there is something seriously wrong when thousands of patients the World over suffer chronic ill health, when simple antibiotics can be the key to their illness.

I was so lucky to have a doctor who realised that when my chronic symptoms of Arthritis and muscle weakness responded to antibiotics it was because I was suffering from Lyme Disease. I had been diagnosed with Fibromyalgia, ME/CFS and then Polymyalgia Rheumatica. I had x rays which indicated Rheumatoid Arthritis at that time the Arthritis in my hands was so bad that I could not lift a kettle even when 1/3 full and using two hands, even to blow my nose hurt my fingers. Now after long term antibiotics I have no pain, no arthritis and no disability and can garden again hence my other blog about my garden, Joanne's Cottage Garden. It took nearly 3 years of antibiotics to get well again. Something that the Infectious Disease Society of America, IDSA advises cannot be. They advocate a couple of weeks antibiotics and then a lifetime of steroids and anti inflammatory medication. No wonder our Health systems can't cope with the costs.

Thanks to ILADS and their guidelines I was treated on long term antibiotics and after 6 1/2 years of chronic illness have my health and life back.

ILADS International Lyme and Associated Disease Society gives their response to the IDSA decision to uphold it's discredited 2006 Lyme Disease Guidelines.

For Immediate Release: Judge, Jury = Status Quo:ASTONISHMENT AS MEDICAL PANEL RUBBER STAMPS ITS OWN CONTROVERSIAL GUIDELINES
Researchers on the sidelines tell thousands of sufferers that chronic Lyme doesn’t exist; no viable alternative explanations given
(Bethesda, Md)—Despite years of controversy, an antitrust lawsuit by the Connecticut Attorney General, and nine months of review, the Infectious Diseases Society of America (IDSA) double downed on its own controversial Lyme disease treatment guidelines with a status quo decision critics call “ highly suspect”.
“It’s a sad day for the health care system and for everyone who suffers from the Lyme disease epidemic,” says Dr. Robert Bransfield, President of the International Lyme and Associated Diseases Society (ILADS). “The IDSA’s flawed positions means patients will continue to suffer with incorrect diagnosis and improper treatment.” Treatment guidelines are crucial when it comes to healthcare because they may dictate whether patients can get diagnosed and treated for illnesses and whether or not insurance companies will pay for it.
Connecticut Attorney General Richard Blumenthal launched an investigation against the IDSA citing evidence that the authors of 2006 Lyme disease guidelines had undisclosed conflicts of interest that may have influenced their conclusions. He also charged that they failed to consider differing medical opinions. This landmark event represented the first ever lawsuit against a professional medical society for guidelines abuse.
The much anticipated verdict just released by a special review panel effectively rubber stamped the association’s earlier, contested guidelines. It limits treatment to three to four weeks of antibiotics. Physicians, Lyme patients and advocacy groups weren’t surprised but are dismayed that the panel decided to turn its back on the science - backed by 1300 pages of peer-reviewed articles, that proves Lyme disease can become chronic, debilitating and can be missed due to unreliable testing (as acknowledged by the CDC and FDA). Hundreds of thousands of patients and their families suffer from chronic Lyme disease. “By and large, the people on the IDSA panel who made this decision are ivory tower researchers”, says Bransfield. “They’re not the doctors on the front lines looking into the eyes and faces of these very sick patients, performing exams and then assuming long term responsibility for dealing with patients suffering from chronic Lyme.
Bransfield and ILADS point to a number of discrepancies and other concerns about the vote, including: • 68 out of 69 of the original 2006 recommendation under review were OK’d with unanimous votes. “How can there be such a total consensus with any scientific issue?” asked Bransfield. “It’s highly suspect and beyond comprehension.” • If Lyme cannot be chronic, then why did the guideline’s authors acquire 200 Lyme disease patents and receive $76 million in Federal funds to study it? • The original guidelines are not only controversial, but written in 2006, are considered old and out of date. • The CDC has also advised for many years that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate 50% of the time. • The IDSA’s decision reinforces that doctors have little control when it comes to treating diseases such as Lyme. Researchers and insurance companies remain in the driver’s seat of diagnosis and treatment.
Lyme disease has reached epidemic levels across the United States. While the CDC reports 30,000 new cases a year, it recognizes that number could be as high as 300,000, making it a larger epidemic than AIDS.
Dr. Bransfield says ensuring the integrity of guideline development processes as they were intended to be used is critical to quality health care in the United States. “Conflicts of interest on guidelines panels are now a crisis,” Bransfield says, “It is time for Americans to realize how important the issue of guideline development is. Patient lives are at stake and no one is being held accountable when guidelines abuse place financial interests above patient care.”
Dr. Robert Bransfield, MD, DLFAPA, is available for media interviews on this and other Lyme related topics. He can be reached at:
225 Highway 35
Red Bank, NJ 07701
Phone: 732-741-3263
Fax: 732-741-5308
Cell: 732-861-5548
Email: bransfield@comcast.net