MEDIA AWARENESS

http://www.edmontonjournal.com/Lyme+disease+tricky+diagnose/3064838/story.html

Lyme disease tricky to diagnose

Number of cases may be under-reported because blood-testing not always foolproof

By Florence Loyie, Edmonton Journal May 23, 2010 10:00 PM

The number of Albertans with Lyme disease may be under-reported because the illness is often misdiagnosed, says an Edmonton board member of the Canadian Lyme disease Foundation.
Part of the problem is infectious disease specialists won't treat for suspected Lyme disease unless they have a positive blood test from an approved laboratory, said Janet Sperling, who is also a University of Alberta entomologist, and co-author of a submission to The Canadian Entomologist on the presence of Lyme disease ticks in Alberta.
Sperling said many local cases go undiagnosed partly because she believes local labs give out too many false negatives.
In 2005, her oldest son, Ed, then 15, contracted Lyme disease, likely on a family vacation in California. He was tested for a number of diseases ranging from Parkinson's to epilepsy by local doctors. Three tests done in Alberta for Lyme disease came back negative.
When Sperling and her husband sent Ed's blood to a California lab, it came back positive for Lyme disease. But local doctors remained skeptical even though Ed's condition continued to deteriorate, she said.
It was not until late 2005 that a doctor reluctantly put Ed on three months of intravenous antibiotics, followed by six months of oral medication. Ed has since made a full recovery.
Between 1992 and 2006, 19 cases of Lyme disease were reported in Albertans, all who had travelled to eastern Europe or the east coasts of Canada and the United States, where ticks carrying the bacteria are common.
Sperling said her son is not listed among the Alberta statistics even though the California lab gave him a positive result and the antibiotic regime cured him. That's because the provincial health office insists a blood test to come back from the laboratory with five positive indicators to define Lyme disease. The European standard requires three.
The disease is rarely fatal in humans but can cause fatigue, fevers, headaches, severe arthritis, abnormal heart beats and other symptoms if left untreated with antibiotics.
The first sign is often a circular rash, called a bull's-eye rash, where the tick has bitten and burrowed. The ticks start out the size of a freckle, but can balloon up to the size of a grape after a bloody meal.
In 2007, provincial health officials confirmed the western blacklegged arachnid had been found in Alberta. Unlike Alberta's moose tick and other local varieties, the western blacklegged arachnid is known to carry the bacteria that causes Lyme disease.
Last week, Alberta's chief veterinarian, Dr. Gerald Hauer, said he was informed that three ticks found by a provincial surveillance project were positive for the bacteria. One tick was found in the Ardrossan area, just east of Edmonton. The other two were found near Calgary and High River. All were collected in the last three weeks. They were tested at the Public Health Agency of Canada's Winnipeg lab.
Sperling said she disagrees with the government's finding that Alberta's first identified Lyme disease carrying tick was found in 2007. "There had been a positive (Lyme disease) tick found in Grande Prairie in 1994," she said, adding she has supporting documentation. Sperling said the foundation has waged an awareness campaign for years to get the message out that you can contract Lyme disease anywhere in Canada, including Alberta. "Alberta has been a particularly tough spot to get the diagnosis for humans," Sperling said. "This is really strange because the vets don't seem to have a problem with saying we recognize we have Lyme disease in Alberta."
Linda Laidlaw's oldest daughter, Xian, contracted Lyme disease as a four-year-old, but was never diagnosed in Canada. "We had to travel to the U.S. for diagnosis and treatment ... and spent over $50,000 to help her recover, none of which has ever been reimbursed," Laidlaw said in an e-mail. "At the height of her illness, I was told that she had an incurable degenerative neurological illness that was likely a rare form of late onset autism or an unknown genetic illness and that there was nothing more her doctors could do.
"By then she'd been ill for about six months. She had lost her ability to communicate and her cognitive skills as well as suffering from myriad physical problems," she said.
Her daughter spent a month in the Stollery Children's Hospital being tested, although never for Lyme disease, and was seen by over 20 pediatric specialists. She also spent three weeks as an in-patient in the Royal Alexandra's secured child psychiatric unit.
Laidlaw said she was sitting in the hospital reading The Journal when she read a story about Ed Sperling and decided to contact the family.
Once Xian began receiving antibiotic treatment for Lyme disease and tick-borne co-infections, her daughter began to get better and continues to improve daily. Xian is now six years old. "If only one of the many doctors who had seen her had known to diagnose Lyme or even just suggested it to me as a possibility, my daughter and our family would have been spared from the ensuing years of pain and difficulty, from which we are still trying to recover," she said.
Laidlaw said she is not sure where Xian contracted the disease but it was either in Alberta or British Columbia because she has never travelled to any U.S. areas where the ticks are found. "The irony of this story is if I had a dog with Lyme disease, I would be more likely to get treatment for it in Alberta than for my child," Laidlaw said.
Sperling said the foundation's goal is to convince the infectious disease medical community that even if a blood test comes back negative for Lyme disease, the patient should begin an antibiotic regime based on their symptoms and history.
Dr. Gerald Evans, president of the Association of Medical Microbiology and Infectious Disease Canada, said in a November 2009 news release that the organization's doctors are at the forefront of antibiotic resistance issues and are confronting the overuse and misuse of antibiotics.
"We must consider the potential serious side-effects of inappropriate antibiotic use for unproven (Lyme disease) including: Clostridiumdifficile-associated disease, life-threatening drug interactions and antibiotic resistance," Evans said in the statement, released in response to a CTV W5 investigation into diagnosis of Lyme disease in Canada.
Evans added that in 2005, the U.S. Centres for Disease Control and Prevention questioned the validity of some American laboratory tests for Lyme disease that use a diffe-ent standard for interpretation. The tests costs hundreds of dollars and are billed directly to the patient.
"This is cause for skepticism," Evans said. "Furthermore, some American doctors who claim to be (Lyme disease) specialists do so without any requirement or regulatory authority to verify their credentials or any established standards for claiming such a title."
Dr. Andre Corriveau, Alberta's chief medical officer of health, said last week he was alerting the medical officers of health throughout the province of the three ticks recently found. Corriveau said anyone spending time outdoors should wear insect repellent, long pants and enclosed shoes when walking in tall grass, woods or bush.

It is time there was more awareness in our National Press here in the UK too.

An earlier post click here
gives a link into a W5 program

Also an earlier post Research by the Sperlings click here


http://pubservices.nrc-cnrc.ca/rp-ps/inDetail.jsp?jcode=ent&vol=141&is=6&lang=eng

Abstract: Lyme borreliosis (LB), also known as Lyme disease, is emerging as a serious tickborne illness across Canada. More than three decades of research on LB in North America and Europe have provided a large, complex body of research involving well-documented difficulties at several levels. However, entomologists are well situated to contribute to resolving some of these challenges. The central pathogen in LB, the spirochete Borrelia burgdorferi Johnson et al., includes numerous genospecies and strains that are associated with different disease symptoms and distributions. The primary vectors of LB are ticks of various Ixodes Latreille species (Acari: Ixodida: Ixodidae), but questions linger concerning the status of a number of other arthropods that may be infected with B. burgdorferi but do not transmit it biologically. A variety of vertebrates may serve as reservoirs for LB, but differences in their ability to transmit LB are not well understood at the community level. Persistent cystic forms of and immune system evasion by B. burgdorferi contribute to extraordinary challenges in diagnosing LB. Multiple trade-offs constrain the effectiveness of assays like ELISA, Western blot, polymerase chain reaction, and microscopic visualization of the spirochetes. Consequently, opportunities abound for entomologists to contribute to documenting the diversity of the players and their interactions in this devilishly complex disease.

AWARENESS CHILDREN MIS DIAGNOSED

What I find most troubling about the denial over Lyme Disease is that children are failing to be treated for tick bites, bulls eye rashes and allowed to develop chronic ill health. Worst still our specialist doctors are not picking up on the Lyme Disease because of the problems over denial.



In the UK I have been in touch with several parents of young children whose children have fallen between the cracks.



I visited one whose daughter had such terrible head pain that it caused her to scream I was there during one of her episodes which was truly heartbreaking to hear. She had had three major operations on her head including one at the base of her brain in order to control these symptoms and had been ill since she was 15 . Now 10 years later she still suffers and has other symptoms of Lyme including Arthritis.



Her Neuro consultant said we would look a bunch of charlies if it turned out to be Lyme disease.



Well it did and yet even so the denial is still causing problems over treatment.



The saddest case is that of Lewis Jeynes a perfectly normal happy little boy at 2 who was bitten in France whilst holidaying there. Gradually his health deteriorated so that he can no longer use his arms, legs, is tube fed and has seizures. Diagnosed with Lyme Disease and some improvements on antibiotics but still his NHS doctors are in denial. I do hope they can get some specialist attention soon.



One mother had been told there was nothing wrong ( the tests showed this)and if she persisted with her enquiries privately they would be looking at MBP.



Specialist Lyme Doctors are finding in children symptoms can present as Obsessive Compulsive Disorder, Attention-deficit Hyperactivity Disorder or Autism.



Others parents have taken their children to the USA to see the only paediatric doctors available who know enough about Lyme Disease.



It is not safe for them to talk openly about their case because of the very real threat of MBP so I will post something I found on Google Alerts today which so highlights what many parents are experiencing.



What of the children that never get diagnosed ?



http://www.the-daily-record.com/news/article/4829726



Sentimental Journey Sophie's suffering



about 24 hours ago
The daylight was fading from the late winter sky when the phone began ringing.
"Can you talk to a woman from New York who needs help?" my dear friend, Marjorie began. "You see, my sister is the family nurse. Their little girl is very sick with Lyme disease."
How well I knew that scenario.


A few minutes later, I was on the phone with Mindy, a mother I'd never met, whose child, Sophie, was crying desperately in the background. That's when Mindy began telling me her story.


The first tick bite seemed unimportant back in 2008. A second tick found in Sophie's scalp a few months later was not unusual either. Their family physician checked the child and said not to worry. After all, the eastern seaboard is well-known for its tick population. Sophie seemed OK after the two occurrences. Sure there was a rash, but she seemed fine. Until months later when Sophie began having headaches that left her doubled over. Until she was suddenly unable to walk. What happened to their once-healthy child?


Mindy began seeking help immediately, traveling from doctor to doctor. I was not surprised that even in New York state, where Lyme disease and other tick-borne illnesses are more easily recognized, little connection was made between the neurological symptoms Sophie was experiencing and the reported tick bites. One doctor ran Lyme tests when every other test came back negative. The preliminary Elisa test came back only mildly positive. The Western Blot came back inconclusive. But by then, little Sophie was neurologically impaired. She was admitted to a psych unit when the headaches left her screaming, when she could no longer use her legs.
I was called to comfort Mindy, because only a mother knows another mother's pain.


By the time we spoke, Mindy had done her homework. A medical follow-up with an ILADS physician had been scheduled. An antibiotic had been started.


"What can I do to help Sophie?" Mindy inquired, her voice breaking.
"Follow your instincts," I began. "Your child is gravely ill. Don't stop till you have answers. And always pray to God for guidance. He will be there when everyone else walks away." I could hear Mindy crying. Her daughter had finally settled. I wiped away a tear, remembering.


Mindy and I established a routine in the next few months, on the phone and then via e-mail. We told each other our stories. The Lyme-literate doctor she consulted confirmed the tick-borne illness. After all the doctors they saw, even several neurologists, one finally listened. One properly diagnosed the child. With the strange symptoms accompanying the disease, no two cases are ever the same.


Mindy told me about the day Sophie was infected several years ago. How her hairdresser found the first tick. Her husband found the second. I thought about how that insidious, invisible pathogen slowly but surely integrated itself in Sophie's small body, how as the bacterium multiplied, the subtle symptoms were dismissed until the neurological damage could no longer be ignored.


The last time Mindy wrote, Sophie had taken a few tentative steps in physical therapy. The headaches were finally abating. The treatment: a long-term antibiotic regimen.


"Sophie laughed today," Mindy told me in that last e-mail.


I knew exactly what Mindy was thinking. Sophie's laughter, a sound she once took for granted, had become the most precious sound in the world.


Remember, May is Lyme Awareness month in Ohio. This disease has grown to epidemic proportions. Most patients don't remember seeing a tick bite or rash. But if you fear infection, contact an ILADS physician for treatment today.

AUTISM AND LYME DISEASE AWARENESS

Dr Charles Ray Jones talking on Lyme Disease and Autism.

Dr Horowitz at the Lyme Induced Autism conference.

Lyme Induced Autism Foundation can be accessed here

If your child has Autism, Obsessive Compulsive Disorder (OCD) or Attention-Deficit Hyperactivity Disorder (ADHD) you may find this post interesting. Sadly as Lyme Disease is an emerging disease the controversy is holding back awareness amongst our doctors and so children with these disorders would rarely be properly assessed for a link with Lyme Disease.

Dr Bransfield the President of ILADS has worked in this field for some years and below is an abstract from his research.

The association between tick-borne infections, Lyme borreliosis and autism spectrum disorders.
Bransfield RC, Wulfman JS, Harvey WT, Usman AI.
Department of Psychiatry, Riverview Medical Center, 225 State Route 35, Red Bank, NJ, United States. bransfield@comcast.net

Abstract
Chronic infectious diseases, including tick-borne infections such as Borrelia burgdorferi may have direct effects, promote other infections and create a weakened, sensitized and immunologically vulnerable state during fetal development and infancy leading to increased vulnerability for developing autism spectrum disorders. A dysfunctional synergism with other predisposing and contributing factors may contribute to autism spectrum disorders by provoking innate and adaptive immune reactions to cause and perpetuate effects in susceptible individuals that result in inflammation, molecular mimicry, kynurenine pathway changes, increased quinolinic acid and decreased serotonin, oxidative stress, mitochondrial dysfunction and excitotoxicity that impair the development of the amygdala and other neural structures and neural networks resulting in a partial Klüver-Bucy Syndrome and other deficits resulting in autism spectrum disorders and/or exacerbating autism spectrum disorders from other causes throughout life. Support for this hypothesis includes multiple cases of mothers with Lyme disease and children with autism spectrum disorders; fetal neurological abnormalities associated with tick-borne diseases; similarities between tick-borne diseases and autism spectrum disorder regarding symptoms, pathophysiology, immune reactivity, temporal lobe pathology, and brain imaging data; positive reactivity in several studies with autistic spectrum disorder patients for Borrelia burgdorferi (22%, 26% and 20-30%) and 58% for mycoplasma; similar geographic distribution and improvement in autistic symptoms from antibiotic treatment. It is imperative to research these and all possible causes of autism spectrum disorders in order to prevent every preventable case and treat every treatable case until this disease has been eliminated from humanity.
PMID: 17980971 [PubMed - indexed for MEDLINE]

I had the privilege to hear Dr Bransfield present on Chronic Lyme Disease and Neuropsychiatric Lyme Disease at the Lyme Disease Action Conference 2008 details here.

SEIZURES

One of the many symptoms of Lyme Disease can be seizures, below is a link into a conference in which the first one Pat Smith talks about her daughter who suffered with Temporal Lobe Epilepsy as part of her complex Lyme disease symptoms.

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=49:2008-insights-into-the-crisis-key-players-and-the-future&catid=164:lda-other-dvds-forums-a-medical&Itemid=557

http://www.lymeinfo.net/medical/LDSymptoms.pdf
Seizures page 33
"Along with or months after erythema migrans, cranial neuropathy or Lyme arthritis, the five children developed behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder." (1)
"Coma has been reported in at least five patients, and seizures of a variety of types, in at least nine: Partial complex, focal motor, and both primary and secondary generalized convulsive seizures have all been reported." (4)
"We describe a child whose first manifestation of Lyme disease was an acute, focal meningoencephalitis with signs and symptoms such as fever, headache, slurred speech, hemiparesis, seizure, and CSF pleocytosis. " (5)
"Another was a 40-year-old man presenting with epileptic seizures and MRI-detected multifocal lesions, which disappeared after repeated courses of antibiotics."



Details of presentations to the review panel of the IDSA Lyme Disease guidelines can be found at http://www.ilads.org/

These presentations leave you in no doubt of the fact that current blood tests for Lyme Disease can miss up cases and that for some people long term antibiotics are required.

With the controversy over the current guidelines how many people suffering seizures are ever properly assessed to see if Lyme Disease could be the cause.

An interesting case study - Tremor, Seizures and Psychosis as Presenting
Symptoms in a Patient with Chronic Lyme
Neuroborreliosis (Lnb) here