Thursday, 20 May 2010


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 ?

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.


  1. Thank you very much Joanne for this. Local NHS paediatricians to me say Lyme is rife in our county and yet have very little knowledge of how to treat this horrible disease thoroughly. They seem to think it is no more harmful than a cold ! How wrong they are.
    ILADS doctors seem to have the best track record in getting children well from chronic Lyme disease.

  2. Thanks Anon
    You are lucky that they even recognise it where you are, so many people I have spoken to on Eurolyme, their doctors and consultants didn't even consider as a possible diagnosis.

    Some doctors seem to be under the impression that when the EM rash (if you even get one) fades that you are better, how wrong they are and how terrible to think children suffer the way I have and worse while doctors remain in ignorance, because HPA dictates restrictive policies.

  3. The sad truth is though, even if it is recognised, the treatment isn't necessarily appropriate. Also, despite all this awareness at Consultant level of "Lyme being rife", locals GPs know nothing about it and are very inexperienced at diagnosing or treating Lyme.Why isn't this awareness of a huge problem not being communicated to the GPs, firstly by the HPA and secondly by local Hospitals? Why does it take patients to teach GPs about this disease ?

  4. Why indeed?

    When things are not as they should be then follow the money, although in this case much seems to be down to ego's, arrogance and an unwillingness to bother to read the available information and research.