REMOVE THE TICK PROPERLY!

PHOTOGRAPH ANY RASH! 

Get copies of all test results. It is your right to get copies, don't take no for an answer! Keep a folder with all medical records. Put all requests to the school or doctor in writing, date them and keep a copy.

Please Read This Disclaimer: I am not a medical doctor. The purpose of this site is not to diagnose or cure any disease or malady, but is presented as food for thought. What you read on this site is based on my own history and ideas. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information presented in this website.

Is It LYME????? Symptom list and more

Tick-Borne Diseases- Lyme is not the only pathogen spread by the bite of a tick.
http://www.lymesite.com/co-infections.htm

The ABC's of Lyme Disease http://www.lymediseaseassociation.org

The Invisible Disabilities Site
http://www.invisibledisabilities.com/rings.htm

Dr. Charles Ray Jones, a TRUE saint http://www.wildernetwork.org/LDpediatricfund.html

FDA Medical Bulletin * Summer 1999 * Final Issue/ Lyme Disease Test Kits: Potential for Misdiagnosis
http://www.fda.gov/medbull/summer99/lyme.html

Art Doherty's Children and Lyme
http://www.geocities.com/HotSprings/Oasis/6455/children-links.html

Children Find Relief From Migraine Through Biofeedback And Relaxation Training
http://www.intelihealth.com/IH/ihtIH/EMIHC000/333/333/308130.html

Working With Families of Suddenly and Critically Ill Children 
http://archpedi.ama-assn.org/cgi/content/abstract/154/11/1127

Advocacy in Action
You Can Advocate for Your Child!
http://www.ldonline.org/ld_indepth/parenting/cec_advocacy.html

SPECIAL HELP FOR STUDENTS WITH CHRONIC LYME DISEASE

www.dailyitem.com
Lyme disease turned 180-pound son into 130-pound little boy
By Joanne Troutman
Staff reporter

The nightmare began in September 1997 for then 13-year-old Matt Peters of Northumber-land. It was, at first, the dizzy spells the presumably healthy football player started experiencing. We thought he was having an allergy problem, recalls his mother, Helen Peters.
When the dizziness subsided, Helen and her husband, Monte, didn't think there was anything to be concerned about.
Then, just before Christmas, the cough started.
Matt's parents took him to their family physician, who placed Matt on a series of different antibiotics for a few weeks to treat what he diagnosed as bronchitis.
When the cough persisted, the family and doctor became worried and decided it was time to take a more aggressive approach.
The next stop was an examination in February 1998 at Hershey Medical Center, where Matt was hospitalized for a few days.
It was not long before doctors there told Matt the cough was all in his head, Helen says. They took him off the antibiotics and prescribed Zoloft, an antidepressant medication.
That's when things really took a turn for the worse. Matt walked into Hershey and we had to wheel him out, Helen says, matter-of-factly.
Within a few days, walking became so laborious that it took Matt 15 minutes to get from his hospital room to the end of the hallway, a distance of only 20 to 30 feet. And it didn't get any better. His knees began to swell tremendously, and he wouldn't open his eyes or eat. He soon began needing a walker when he wasn't in a wheelchair.
The Peters decided to take Matt to a local hospital, Geisinger Medical Center in Danville, hoping physicians there would do something for their son.
The doctors performed several tests on Matt. The teen was bounced from department to department, with doctors trying to determine exactly what was wrong. The only test that came back abnormal was a spinal tap, Helen says, with an increased protein level suggesting a possible infection. One doctor did recognize that the reason Matt wasn't opening his eyes was because they were sensitive to light.
But none of the blood tests showed anything out of the ordinary. After another series of tests, including an MRI, Geisinger doctors concurred with the diagnosis at Hershey Matt was severely depressed.
They said the cough was coming from a chemical imbalance in his brain, Helen says.
It wasn't that they weren't trying, she says about her despair in the diagnosis. But they kept saying this was in his head. I could tell he was in pain.
They just didn't recognize that he was feeling real pain and he needed help.
The doctors increased the antidepressant medication and sent him home.
In March, Matt stopped going to school. He was having panic attacks and was routinely dehydrated from refusing to eat or drink. His father had to carry him up steps because he couldn't walk.
He spent a lot of time in bed sleeping, Helen said.
In the meantime, Matt's behavior had become out of control. His parents started taking him to a counselor in Lewisburg.
It was when we saw the counselor that she thought there was something more to this, Helen said.
The counselor was the first to suggest Lyme disease.
Lyme disease is a tick-borne infection caused by Borrelia burgdorferi bacteria, a spirochete similar to the bacteria that causes syphilis. The Borrelia bacteria is typically carried by ticks that embed themselves in deer.
The disease is passed on to humans when deer ticks embed themselves in human skin to feed, subsequently causing a variety of symptoms.
It was first discovered in the United States in the 1970s when Dr. Willy Burgdorfer began researching a cluster of patients diagnosed with juvenile rheumatoid arthritis in Lyme, Conn.
However, the disease is thought to have been around for more than a century worldwide.
The counselor in Lewisburg told the Peters family that Lyme bacteria could manifest itself in the brain, causing many of the neurological symptoms Matt was experiencing.
The Peterses weren't sure what to think of the suggestion.
I didn't see a tick on him, and he didn't have a bulls-eye rash on him that we knew of, Helen said.
Plus, Matt had previously had all the usual blood tests recommended by the Centers for Disease Control for reporting Lyme disease, and none indicated Lyme under the guidelines.
But the counselor suggested a different test and a different doctor.
They needed to do something.
They thought their son was dying.
We saw him rolling up into a ball, Helen said. Everything was shutting down in his body ... I had this very active football player lying in bed in pain. There was something wrong.
His bowels and kidneys no longer functioned properly. He constantly had a severe headache and rarely opened his eyes because light hurt them too badly.
A healthy 180-pound middle school football player had become a feeble 130-pound little boy in a matter of months.
The family sent a urine specimen to Pittsburgh for analysis through a urine antigen test. The results came back borderline for Lyme disease.
The Peterses then scheduled an April visit to a pediatric doctor in New York who specializes in Lyme.
It was at her office that the Peterses learned that the rash Matt developed after cutting weeds in the family's rural Northumberland backyard a few years before was symptomatic of the disease. It was a rash that looked like poison ivy with a black mark in the center.
We didn't know there could be other rashes, Helen said.
Although the ELISA and Western Blot blood tests, as well as more direct tests such as the urine antigen screening, all came back borderline, the New York doctor clinically diagnosed Matt with advanced Lyme disease.
She placed him on antibiotics immediately. By the end of May, with the help of a local family doctor and Hershey Medical Center, Matt was receiving antibiotics intravenously.
Then we started a life with IV antibiotics that lasted a very long time, Helen says.
Matt's behavior continued to be a problem. He says he can't remember much of what happened while he was very sick. His mother won't elaborate on specifics, but she said he would do anything with food but eat it.
He wouldn't get angry, he would get furious, Helen says.
Throughout the summer, Matt had to wear sunglasses for light sensitivity. And the teen was still using a walker and wheelchair regularly. By this time, the muscle tone in his thighs decreased from inactivity, causing his knee caps to drop. He had to go to physical therapy to regain his strength.
He managed to get through seventh grade by doing his work at home. When eighth grade began, he went to school half-days and gradually increased to full days. He couldn't play football, but his teammates convinced the coach to allow him to wear a jersey and stay on the sidelines.
He was getting better. By March 1999, Matt was well enough to stop the IV antibiotics. He continued taking pills for a few months.
His last test for Lyme in June showed that there was less bacteria than was previously detected. And now, he's feeling better than ever. He has been in school full-time and he even played football last fall.
But there are still the emotional issues to deal with.
Helen says Matt kept a journal throughout his illness and refuses to look at it.
And he got really upset if any of us looked at the journal, she says. There were a lot of things in there I'm sure I wouldn't want to know.
Matt doesn't say much about his illness. But the expression on his face when you ask him about the pain says it all.
There was a lot of stuff I wanted to do, but I couldn't, he says, his eyes welling up with tears.
Matt doesn't want pity. What he does want is to be a normal 15-year-old boy who gets recognition for a disease that could have ruined his life and did so briefly.
(People) just don't understand, Matt says. They think it's no big deal ... but it is.
Neuroimaging in Neuropsychiatric Lyme Disease: Uses, Abuses, and the Future

Neuroimaging in Neuropsychiatric Lyme Disease: Uses, Abuses, and the Future
Brian A. Fallon, MD, Columbia University College of Physicians & Surgeons
Structural Brain Imaging

MRI scans among patients with neurologic Lyme disease may demonstrate
punctate white matter lesions on T2 weighted images, similar to those seen in demyelinating or inflammatory disorders, such as multiple sclerosis, systemic lupus erythematosus or cerebrovascular disease. In early neurologic Lyme disease, hyperintensities may be seen in as many as 50% of patients with evidence of meningitis or encephalitis. Comparable to meningo and cerebrovascular syphilis, European authors suggest that CNS micro- and macrovasculitis may cause both clinical symptoms and MRI changes in patients with CNS Borreliosis.
The usefulness of MRI scans in American chronic Lyme encephalopathy is less clear, with abnormalities seen 15% to 41% of the time. After treatment, roughly half of the patients may show resolution of the signal hyperintensity. In late stage encephalomyelitis, MRI scanning often
demonstrates focal areas of inflammation, most commonly in the white matter and occasionally in the cortical and subcortical gray matter of the brain.
Combined MRI and PET studies can help to examine the pathophysiology of these hyperintense areas (perfusion, reactivity to hypercapnia, metabolism)
and whether they have prognostic significance. Do these hyperintensities represent demyelination or perivascular inflammation? Is the disease
process underlying the hyperintensities primarily neuronal metabolic or vascular? FLAIR sequence and magnetization transfer techniques can be used to maximize the yield on identifying white matter hyperintensities.
Functional Brain Imaging
Single photon emission computerized tomography (SPECT) and positron emission tomography (PET), provide a dynamic picture of the brain's
functioning: metabolism, blood flow, and chemistry. In comparison to SPECT scans, PET scanning is able to provide better spatial resolution images
(4-6 mm vs. 6-9 mm) and can be used to provide an absolute quantitative assessment of regional perfusion or metabolic abnormalities. SPECT studies of patients with Lyme disease reveal multifocal areas of decreased perfusion in both the cortex and the subcortical white matter. Logigian
reported that patients with definite Lyme encephalopathy had significantly more perfusion deficits that patients with possible LE who in turn had significantly more deficits than normal controls. After treatment with one
month of IV ceftriaxone, a partial reversal in brain perfusion deficits was observed, raising the question of whether longer antibiotic therapy may
have resulted in even fewer perfusion deficits.
Hypoperfusion defects visualized on SPECT scans may result from any process that alters the radiotracer distribution, including vascular delivery to neurons, transport of the tracer into the cells, and retention of the radioactive tracer in the cells. Problems may arise secondary to direct
infection of neurons, from cellular dysfunction due to the indirect effects of neurotoxic immunomodulators such as cytokines, or from decreased perfusion through arterioles secondary to vasculitis. In other words, areas of hypoperfusion may result from a cellular-metabolic and/or a vascular problem.
How may clinical SPECT scans be useful? First, a scan with diffuse abnormalities may confirm that an objective abnormality is present in a
patient considered to have a factitious disorder. Second, a normal scan in a patient with prominent neuropsychiatric symptoms may suggest that a
psychiatric disorder is the primary cause of a patient's distress and not Lyme disease. Third, improvement after treatment provides objective
evidence of physiologic change.
How may clinical SPECTs be abused? One cannot conclude from a SPECT scan that a patient has Lyme disease, as similar patterns of abnormality may be seen with other diseases as well. Other disease processes that demonstrate a heterogeneous tracer uptake include vascular dementia, chronic fatigue syndrome, CNS Lupus, HIV encephalopathy and chronic or acute stimulant abuse.
Future Studies
Studies combining MRI and PET technology, MR Spectroscopy and functional MRI will each contribute significantly to our understanding of the
patholophysiology of chronic neurologic Lyme disease.  

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