AUTISM VIDEOS

These excellent videos from Lymenaide are a must watch for parents with children suffering from Autism.

This Spring Lymenaide and And What Productions filmed an interview with Dr Chitra Bhakta.
Dr Bhakta is a DAN (Defeat Autism Now) and an LLMD. She spoke with us about Lyme Induced Autism, Lyme disease and treatment.

http://lymenaide.wordpress.com/

'When I started testing these (Autistic) children 8 out of 10 were testing positive for Lyme and Bartonella and other co infections of Lyme Disease.'

Dr Bhakta points out that Lyme is endemic throughout the World.

Her closing words are 'the tests are not the be all and end all.' (She had already pointed out that most of the tests for Chronic Lyme will turn out negative)

'Doctors are human beings and have fallibilities.'

'The best person is to have belief in yourself.'

For earlier posts on Autism and Lyme Disease enter Autism in the search in the right column or click here

IS IT REALLY AUTISM?

Dr Jones treats children with Lyme Disease many of those children present with symptoms similar to children with Autism and several of those children had been previously diagnosed with Autism. On long term antibiotics for their Lyme Disease there symptoms improve.

Below are extracts from the Hartford Advocate a well written article by Betsy Yagla


A 7-year-old boy named Timmy came in for an appointment.

At an earlier visit with Jones, five months prior, Timmy exhibited problems like low muscle tone and no expressive speech. Another doctor diagnosed him with autism when he was 2 years old. Timmy’s mom noticed that when he was on antibiotics, his behavior became better. He exhibited fewer symptoms associated with autism. After he went off his medication, though, his symptoms returned to full force.

Jones thought the boy had Lyme disease, not autism.
At that first visit, Jones says, he put his hands on Timmy’s cheeks and looked into his eyes: “I hope I have the key to unlock your brain,” he said. Timmy then squirmed out of Jones’s lap and began to run around the room.

At Timmy’s follow-up visit, one day after Jones received his punishment, Timmy “climbed into my lap, put my hands on his cheeks and said, ‘Thank you for giving me the key to unlock my brain.’” Jones says. “Then he hugged me.”

“That’s why I stayed in [medicine],” he says.


One of the reasons Jones is so controversial is because of patients like Timmy: Jones’ diagnoses and treatments call into question those of other doctors. While other doctors see autism or mental illness, Jones sees Lyme. Jones thinks one of the reasons he’s so disliked in the medical community is other doctors’ pride.

Sitting in a leather chair in his New Haven office, 81-year-old Jones does not look like a man who arouses passionate disputes. He’s wearing a blue Adidas tracksuit with his name embroidered on the back, and the type of black orthopedic sneakers you’d expect on a man his age.
Jones didn’t start out as a doctor — he was a divinity student at Boston University in the early 1960s. As an assistant minister with the Second Church Unitarians, Jones made house calls to people who couldn’t get out to go to church. Changing professions was a decision inspired by one of those visits: “I was in the home of an 80-year-old woman who was very badly stricken by arthritis. She grabbed my hand on the way out and said, ‘Please do something to help me in a real way,’ and that was it.”
He started focusing on cancer in New York, but moved to Hamden with his wife to raise a family and start a pediatric practice in New Haven. In the late ’60s, he noticed clusters of kids — several in a family — diagnosed with juvenile rheumatoid arthritis. Many had strep throat, he says. “When we treated them [for strep] with antibiotics, they got better. That was the beginning of it,” Jones says.

He saw more as time went on.

“It infected every part of the body, including the brain and the skin. We were treating them with six weeks of antibiotics. Then another six weeks if it didn’t work. There was a little boy, about 10 or 11, who was diagnosed with rheumatoid arthritis. We did several rounds of six weeks of antibiotics and a few weeks off. He did better on them, not off. He said to me, ‘If I’m better while I’m on the antibiotics, why don’t you keep me on them?’
“‘Well,’ I wondered ‘Why didn’t I think of that?’ He was on antibiotics for three of four years and now he’s in his late 40s and is perfectly well. From that point on, I started treating with antibiotics continuously until they were better and then for two months after that.”
That attitude is what’s turned Jones into the Pope of the Lyme disease community. It also turned him into a pariah of the academic and medical community.

To read the article in full from the Hartford Advocate click here

To read more about the controversy surrounding this Pioneering doctor have a look at CLADA website and there many blogs listed on the right hand side here

To read more of my posts on Autism enter Autism in the search engine on the right hand column on my blog or click here

To look at more information on Lyme Disease and Autism see the links in the right hand column of my blog or click here

To find out more about Lyme Disease visit the many links in the right hand column of this blog.

My own Arthritis and Muscle weakness improved significantly when given a chance course of antibiotics and this led my GP to suspect Lyme Disease. Many of the patients I talk with on Eurolyme had similar experiences so it was interesting to hear what Dr Jones says in the above article that many of his patients would improve on antibiotics and deteriorate when they stopped.

How many more children's Autism could be complicated or caused by a sneaky infection of Borrelia? Certainly at present this is something not widely researched or known by those doctors treating children with Autism.

The science is still evolving with Lyme Disease, Borrelia and it's many complex associated co infections, which currently are rarely tested for.

LYME DISEASE ACTION ON FACEBOOK

It is good to see Lyme Disease Action spreading awareness of this disease through Facebook.

Below is a copy of their first post on Facebook but there are many more to read at http://www.facebook.com/home.php?#!/pages/Lyme-Disease-Action/122058224483868

Lyme Disease Action You thought the IDSA guidelines were unequivocally upheld? What no-one is telling you: LDA has issued a press release highlighting what the IDSA Review Panel actually said and how they recommended changes to the guidelines.
Lyme disease review panel : the truth is in the detail
www.lymediseaseaction.org.uk
The Lyme disease review panel of the Infectious Diseases Society of America (IDSA) has released its long-awaited final report following an enforced review of the controversial 2006 Lyme disease guidelines, which are also used in the UK.

If you have like me Fibromyalgia, ME/CFS, Arthritis, Muscle weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica diagnosis then do follow the above links and have a good read because who knows doctors could be missing other cases of undiagnosed Lyme Disease as they did with me for 4 years. Now diagnosed with Lyme disease and after many months of long term antibiotics I am nearly 100% with no pain, no disability, no Arthritis or Muscle Weakness and able to enjoy my garden again.

Lyme Disease can present as Neurological symptoms and be mis diagnosed as MS, MN, Parkinson's, Autism, ADHD, OCD.

It can also cause problems with the heart and the brain and any organ or system in the body depending where the infection goes.

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.