Updates for TickTips4Kids.com http://www.ticktips4kids.com/blog/index.php http://www.ticktips4kids.com/blog/index.php?entry=20
My hope for this website for Devin is that Lyme and tick-borne illnesses get the exposure they need. It is such a controversial issue within the medical community. Whose right and whose wrong is immaterial. This is not a moral debate, but a health problem. We all need to be educated to take the best possible care of ourselves. We need answers and solutions starting with research for accurate testing, treatments and cure. For everyone reading this, I hope that you will take the interest needed to help solve this dilemma.

Controversy is nothing new to the medical profession. It was not too long ago that the medical community was wrong about what caused ulcers. Ulcers were believed to be caused by stress and dietary factors. In 1982, Australian physicians Robin Warren and Barry Marshall first identified the link between Helicobacter pylori (H. pylori) and ulcers, concluding that the bacterium, not stress or diet, causes ulcers. It wasn’t until 1997 that the CDC, with other government agencies, academic institutions, and industry, launched a national education campaign to inform health care providers and consumers about the link between H. pylori and ulcers. It took 15 years for the medical community to embrace this discovery. That’s why there is research. New things are discovered every day.

Here is to you making a difference in the world, Devin. Keep up the good work! I love you and I am so very proud of you!]]> http://www.ticktips4kids.com/blog/index.php?entry=19 The Children of Lyme Disease
Charles Ray Jones, MD Pediatrician, Private Practice, New Haven, CT

Current research indicates that the Lyme disease bacteria, Borrelia burgdorferi, can be transmitted within hours after an infected tick attachment. Failure of parents and teachers to recognize Lyme disease early in its course can result in a child developing a chronic difficult to treat infection in the brain, eyes, joints, heart and elsewhere in the body.


In my experience treating 7,000+ children birth to 18 with Lyme disease, 50% have no tick attachment history, 10% or less have an erythema migrans (bullseye rash) history, but all have a history of living in or having visited a Lyme endemic area and have a decline in the way they play and perform in school.


They are tired, wilt easily, have dark circles under their eyes and are sick. Lyme disease has a profound negative impact on a child's life, cognitive function and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work. Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills, joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions as well as a feeling of being overwhelmed by schoolwork plague a child with Lyme disease. Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material.


Although Lyme is usually transmitted by Ixodes scapularis (deer) and Amblyomma americanum (lone star) ticks, it can also be transmitted in utero and through breast milk. These children, frequently floppy with poor muscle tone, are irritable and ill early in their lives with frequent fevers, increased incidence of ear and throat infections, pneumonia, joint and body pain. They have gastroesophageal reflux, small windpipes (tracheomalacia), cataracts and other eye problems, developmental delay, learning disabilities, and psychiatric problems.

All respond to months or years of continuous antibiotic therapy.

When Lyme disease is a possible diagnosis, the children should be evaluated by a Lyme knowledgeable physician who will continue antibiotic therapy until all Lyme symptoms resolve. In most circumstances, Ixodes scapularis tick attachment should be treated with one month of antibiotic therapy.]]> http://www.ticktips4kids.com/blog/index.php?entry=18


WHO: Everyone! We need 1,000 email letters to go to Forbes now!



WHAT: Contact Forbes.com



WHERE: You can use any of the following contact methods:



1.Contact form (click the link) http://www.forbes.com/story/mag/comments_form.jhtml?title=The

2.Email link (click the link) editors.

3.Email to (click the link or cut & paste email address) readers@Forbes.com

4.Call 212-366-8900



WHEN: As soon as possible



WHY: A serious personal attack has been made on our Lyme treating physicians. The Forbes.com article “Ticks aren't the only parasites living off patients in borreliosis-prone areas,” presents a biased viewpoint, a blanket condemnation of Lyme treating physicians as profiteers and worse. We cannot allow these charges to go unanswered. The physicians who have the courage to treat patients despite the obstacles they face from medical boards and insurers, jeopardizing their careers, do not deserve to be portrayed in this manner.



The article also places them at greater risk from those quoting this article or those believing it to be true. Bottom line, we need our physicians to be able to treat without this kind of unwarranted, unsubstantiated attack from a supposedly reputable publication.



We want to get 1,000 emails to Forbes ASAP.

(for article, click link & then sign in http://members.forbes.com/forbes/2007/0312/096.html)



ACTION (500 words is all Forbes will accept) Take 5 minutes to defend your treating doctors!



1. Use the following information and write your own letter if possible.

2. If you cannot write your own, highlight, copy and paste this letter in the email.

3. Your name, address must be on letters or Forbes will not accept them.

4. Do not use ANY physician name(s) in the letter.



SAMPLE LETTER (382 words)

I’m deeply disturbed that Forbes’ magazine would purposely print a one-sided and inaccurate article which tries to paint a picture of doctors who treat chronically ill Lyme disease patients as individuals whose main goal is to make a profit.



My experiences with Lyme treating physicians do not reflect that picture. These doctors often see patients for two hours or more on the initial visit and a ½ hour or more otherwise. The reason for this visit length is the complex nature of Lyme disease which is often accompanied by one or more additional tick-borne diseases such as babesiosis and anaplasmosis. The prices they charge are not any different and are often less than any other specialist charges on an hourly basis. The number of patients they can see in a day is often less than conventional physicians who see their patients at 10-15 minute intervals.



These same dedicated physicians spend much of their free time attending conferences and providing programs for the public and other physicians on Lyme disease since there is very little accurate information in mainstream medicine. Additionally, they are burdened with helping patients fight the bureaucracy of treatment reimbursement for a disease where biased science is the accepted "standard of care." They also have a long history of helping patients regain their health or they wouldn't be in such demand and have long waiting lists.



The worst insult is the fact that on a daily basis, many of these doctors are dealing with medical board harassment because a handful of their peers have decided that chronic Lyme patients should not be treated for their ongoing infections and all treatment should be stopped at an arbitrary cut off point, whether the patient is well or not. Research studies have proven Lyme disease to be a chronic, disabling disease if not properly treated.



Something is wrong when very sick people are abandoned by the medical profession and when infectious diseases specialists deny medical treatment, insurance companies deny reimbursement, and medical boards harass our treating doctors. Something is terribly wrong when Forbes prints an article without exploring the entire picture and learning where the real vested interests lie. When the interests of insurers drive medical societies, the health care of our citizens is being sold to the highest bidder. When a major medical society sides against patients, Forbes should be asking why, not joining in against the patients. Name, Address, Email


Pat Smith
President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 Toll free info line
732-938-7215 (F)
LymeDiseaseAssociation.org]]> http://www.ticktips4kids.com/blog/index.php?entry=17 Charles Ray Jones, MD Pediatrician, Private Practice, New Haven, CT

Current research indicates that the Lyme disease bacteria, Borrelia burgdorferi, can be transmitted within hours after an infected tick attachment. Failure of parents and teachers to recognize Lyme disease early in its course can result in a child developing a chronic difficult to treat infection in the brain, eyes, joints, heart and elsewhere in the body.


In my experience treating 7,000+ children birth to 18 with Lyme disease, 50% have no tick attachment history, 10% or less have an erythema migrans (bullseye rash) history, but all have a history of living in or having visited a Lyme endemic area and have a decline in the way they play and perform in school.


They are tired, wilt easily, have dark circles under their eyes and are sick. Lyme disease has a profound negative impact on a child's life, cognitive function and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work. Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills, joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions as well as a feeling of being overwhelmed by schoolwork plague a child with Lyme disease. Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material.


Although Lyme is usually transmitted by Ixodes scapularis (deer) and Amblyomma americanum (lone star) ticks, it can also be transmitted in utero and through breast milk. These children, frequently floppy with poor muscle tone, are irritable and ill early in their lives with frequent fevers, increased incidence of ear and throat infections, pneumonia, joint and body pain. They have gastroesophageal reflux, small windpipes (tracheomalacia), cataracts and other eye problems, developmental delay, learning disabilities, and psychiatric problems.

All respond to months or years of continuous antibiotic therapy.

When Lyme disease is a possible diagnosis, the children should be evaluated by a Lyme knowledgeable physician who will continue antibiotic therapy until all Lyme symptoms resolve. In most circumstances, Ixodes scapularis tick attachment should be treated with one month of antibiotic therapy.]]> http://www.ticktips4kids.com/blog/index.php?entry=16
Please pass this information along to everyone. Thank you!




Dr. Jones next hearing-

THURSDAY, January 25, 2007

University of CT Health Center
263 Farmington Avenue
Farmington, CT
In the Keller Auditorium
9:00 AM


From Bradley International Airport Follow Route 20 to I-91 South to I-84 West in Hartford. Follow I-84 West about 7 miles to Exit 39 which is after 39A. Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.

From Farmington Center Stay on Route 4 East/Farmington Avenue. As you drive up the hill toward I-84, stay in the right lane and follow the signs as Route 4 East/Farmington Avenue loops to the right and crosses the I-84 access road. At the fourth traffic light, turn right to enter the Health Center campus.

From West Hartford Center Stay on Farmington Avenue/Route 4 West. The Health Center is about 3.3 miles on the left.

From Route 44 Canton/Avon Proceed on Route 44 eastbound through Avon. Turn right onto Route 10 South/Waterville Road. Turn left onto Talcott Notch Road and continue to Farmington Avenue/Route 4 West. Turn right; the Health Center is a 1/4 mile on the left.

From I-84 Take Exit 39 (if coming from I-84 West, Exit 39 is after 39A). Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.

From Northbound Route 9 Take Exit 32 (left exit) onto I-84 West and stay in the right lane. Take Exit 39 (first exit). Turn right at the first traffic light onto Route 4 East (Farmington Avenue). At the third traffic light, turn right to enter the Health Center campus.

To Return to Route 9 From the Farmington Avenue entrance on the Lower Campus, take a left onto Route 4 West/Farmington Avenue. At the second light, take a left onto South Road. At the first stop sign, turn right and follow the signs to Route 9 South (you will enter I-84 East briefly prior to exiting onto Route 9 South).

To Return to I-84 East or West From the Farmington Avenue entrance on the Lower Campus, take a left onto Route 4 West/Farmington Avenue. At the third light, take a left towards the highway entrance ramps and follow the signs staying right for I-84 West or staying left for I-84 East.

Parking

Observers will have to park in Shuttle Lot 3. Once they turn into the Health Center from Farmington Avenue, take the 1st left and then take 2nd left to Shuttle Lot 3. There will be a shuttle bus providing transportation to the Main Building.

Keller Auditorium

Come in through Main Entrance into the lobby. On the left past the volunteer desk there are escalators. Take these to the ground floor. Turn around and Keller Auditorium will be directly in front of you.

--------------------]]> http://www.ticktips4kids.com/blog/index.php?entry=15 By Mike Levine

Times Herald-Record
January 14, 2007

Wednesday, May 3, 1989 - This is a busy man here, this Abe Genen. This is a
substantial citizen. He holds an important job with the state attorney
general's office in the World Trade Center. He's an exuberant family man,
devoutly religious, an active volunteer firefighter.

Does a little deer tick stand a chance with such a man?

One of those little suckers almost leveled Abe in August. The 51-year-old
Blooming Grove resident felt dead tired. He made frequent typing errors at
work. He began having trouble putting words together.

His doctor asked Genen if he had noticed a small rash a few months back? A
tick bite?

Maybe he had a rash, said Abe. Maybe not, who knows? It was summertime.
Insects are always biting.

The doctor took blood. A week later, the results came back.

``You have Lyme disease,'' the doctor told him.

Soon, Abe Genen's blood pressure began skyrocketing. His heart started
palpitating irregularly. He was on his way to intensive care at Arden Hill.

* * *

Really, there's only so much of ``the world's a dangerous place'' stuff we
can take. This gives you cancer, that gives you high blood pressure, this
fruit is sprayed with poison. After a while, we just shut it off.

So when health officials warned mid-Hudson residents a year ago that Lyme
disease was spreading in the region, few of us, including Abe Genen, paid
attention.

We were told Lyme disease is caused by infected deer ticks. The ticks,
carried by mice, deer, birds, dogs and squirrels, have been around a long
time, but they've only recently become infected.

We were told we could get Lyme disease anywhere, from a suburban front lawn
to a wooded thicket. The early symptoms are often flu-like. Many people get
a ring-like rash.

If detected early, Lyme disease can be successfully treated with massive
doses of antibiotics. If you are not treated, Lyme disease can eventually
cause heart damage, blindness, paralysis, arthritis and meningitis. It is
sometimes misdiagnosed as multiple sclerosis.

They told us we can take precautions. Whenever possible, wear long sleeve
shirts and long pants. You can spray an insect repellent containing the
chemical DEET. Keep the grass short. Because children play outside a lot,
they are especially vulnerable.

Who listened? What were we going to do, run around with long pants all
summer? Get crazy with worry? A lot of people concluded this was just
another scare.

By year's end, 64 people discovered Lyme disease is no idle threat. Cases
were up eightfold from a year ago.

Already this year, 13 cases have been reported in Orange County, running way
ahead of last year at the same time. The infected ticks are spreading from
Westchester County, which had 1,400 cases in 1988. This year, they are
running six times ahead of this pace. Lyme is not yet as active in Sullivan
and Ulster counties, but it is gaining a foothold.

The peak season begins this month through July. Health officials are hoping
people finally get the message.

* * *

Abe Genen went through hell. He was in intensive care for four days. He had
so many tubes stuck in him, his 4-year-old son thought he was Robo Cop.

Genen was an outpatient for months, suffering terrible arthritic pain.

Abe Genen has no lectures, just a message: ``Take this seriously. If you're
in the garden, wear long pants, tuck them in your socks, check for ticks.''

Sure, we're all tired of hearing the world's a dangerous place. It is even
more dangerous if we don't pay attention.

To protect yourself and your family, you can write to the Orange County
Health Department, 124 Main St., Goshen, N.Y. 10924. You will receive
important Lyme disease information. Slide shows are also available for
groups and schools.

Record Online is brought to you by the Times Herald-Record, serving New
York"s Hudson Valley and the Catskills.]]> http://www.ticktips4kids.com/blog/index.php?entry=14
1. Hearing session scheduled for Thursday, January 18th: This will begin at 9:00 a.m. at the Dept. of Public Health Complex, 410 Capitol Avenue, Hartford, CT, Conference Room C in Building 470. The room holds 100 people (note that this is a different location than where the last several have been held, but is nearby);

2. Hearing session scheduled for Thursday January 25th: This session also will begin at 9:00 a.m. Location to be determined. We should know this by mid-week. Please watch for more information.

CRITICAL DEVELOPMENTS IN DR. JONES' CASE:

The Connecticut Medical Board has stepped up its assault on Dr. Jones: they have dug up additional cases which involve divorced or estranged parents fighting over their kids' medical care, and want to add them at this late date to the current charges. The Board also is bringing the father in from Nevada, in the hopes of discrediting his ex-wife, who is the mother of the two children in the current case. It is likely he will try to paint a Munchausen-type picture of her, to negate the powerful testimony that she gave during her appearance at the hearing.

In response to these developments, it is time for the Lyme community to mount a powerful, visible, vocal, yet respectful response. The Connecticut Medical Board (and the Department of Public Health) must hear that Dr. Jones has been a highly valued practitioner whose dedication and expertise with pediatric Lyme disease has been a blessing and a lifesaver to thousands of children and their families.

It is critically important to support Dr. Jones not only because of his direct contributions to children with tick-borne disease and their families. If the CMB is allowed to prevail, it will pave the way for similar charges to be brought against other physicians who treat Lyme comprehensively in Connecticut and, ultimately, elsewhere. This situation, together with the recent publication of the newly revised, draconian IDSA guidelines, poses another direct threat to availability of appropriate care and patients' right to informed consent in the area of tick-borne disease. The Lyme community must express a unified, coherent and powerful message regarding our presence and determination with regard to these issues.

WHAT TO DO:

1. Attend one or both of the upcoming sessions: Offer rides and organize carpools. Bring your family and friends, as well as your children. Some of us who have helped to publicize the previous sessions are going to be away on one or more of the next two hearing dates. This, together with the uncertainty of winter weather conditions, increases our concern about ensuring strong attendance at these next two sessions.

2. Media Coverage: We are now seeking as much media coverage as possible for these hearings - newspapers, TV, etc. Is this an arena that you or anyone you know could help with? Please come forward if you do. Your ideas and contacts are vital!

3. Help to spread the word: Please do what you can to support Dr. Jones and to get the word out that attendance is more crucial than ever, etc.

4. Formal Protest: Some of us are investigating the possibility of a formal, indoor demonstration at one or both of the hearings. This is complicated and time is short, however. We are awaiting word regarding the legal requirements, including a permit. In the meantime, please plan to attend the hearings themselves - if we pack the room and overflow into the hallway, this will serve as an informal, de facto demonstration. Wear comfortable shoes, bring chairs and healthy snacks, just in case.

5. Donations to Dr. Jones' Legal Defense Fund: The cost of Dr. Jones' legal defense has been astronomical. We are lucky that Dr. Jones has promised that he won't quit, and is determined to defend both his license and the right to treat Lyme comprehensively. This could entail a lengthy appeal process and even wind up in civil court. If we want him to prevail, we must remember that his fight is our fight: this is about much more than one physician's medical license.

To donate to the Charles Ray Jones, M.D. Legal Defense Fund, please go to http://www.lymesite.com/Dr-Jones_please_send_a_contribution_to_th.htm

For information on current/ongoing fundraisers for Dr. Jones' legal defense fund, go to http://www.lymesite.com/LLMD_FUNDRAISER.htm]]> http://www.ticktips4kids.com/blog/index.php?entry=13 Sullivan fought through disease

By Jim Sheahan
Poughkeepsie Journal

David Sullivan had put in the time to get his 6-foot-1, 265-pound body ready
for his senior year of high school football.

Still, at the end of last winter, things didn't feel right. He was getting
blind spots in one eye, he was having trouble concentrating at school, and
he was feeling numbness in his hands.

He was tested over and over for numerous maladies, but nothing was found.

Finally, a simple blood test revealed that Sullivan had Lyme disease, and
the symptoms he had, which were neurological in nature, were treated with
intravenous antibiotics.

By April, after a month of antibiotics, his symptoms returned.

"I started thinking that maybe I was going to miss the preseason," said
Sullivan, a senior at Our Lady of Lourdes High School in Poughkeepsie. "Then
they wanted to try one more month of antibiotics. Then another month. So I
was thinking maybe I'd be OK to play in the third or fourth game."

With an IV port surgically implanted in his chest for daily antibiotics,
Sullivan was barred from anything as physically demanding as football.
Still, he attended every practice and every game. Projected to be a starter
on both the offensive

and defensive lines for Lourdes, Sullivan carried water, taped ankles ...
and did anything else he could to support his teammates.

"He did anything asked of him," Lourdes coach Mike Lindberg said. "Watch
film, retrieve balls for the kickers, anything. It was really tough on him
and his family. You don't realize how much you love to play until you
can't."

The low point came during Lourdes' Senior Day ceremonies.

"I saw all my friends in their uniforms, running out on the field with their
pads on," Sullivan said. "I said 'I want to be out there.' But I knew I'd
never play in another game."

He was right. It wasn't until two weeks ago that the port came out of
Sullivan's chest. Just last week he resumed normal physical activity, taking
part in a practice with the Lourdes swim team.

Some of the more upsetting symptoms, like the lack of concentration, have
improved. Others, like the numbness in his hands, have not. It may stay that
way.

"Lyme disease is not like getting a cold," Sullivan said. "People don't
realize some of the damage can be permanent."

Before the illness, Sullivan's average at school was in the mid-90s. Before
treatment, his grades sunk into the mid-80s.

"I'd read a line, then read it again, then read it again - I felt like I was
reading Chinese," Sullivan said. "I just couldn't comprehend what I was
reading. First I'd get confused and then mad."

With his grades back in order and the pain of missing his entire senior year
of football behind him, Sullivan has a new outlook on his life. It was
prompted by his experience with Lyme disease.

"My eyes have been opened by how all the sciences work together in a
situation like this," Sullivan said. "I really like the sciences area.

"The last year has been a struggle," Sullivan continued. "What I've learned
is that I'm not going to change the last year. I think I've learned more
from the disease; the glory is great, but it's not everything. It helped me
overall, and I think it will help me tremendously through life, when
obstacles get in the way."

Sullivan doesn't have plans to play football in college. He's played his
last game.

He's OK with that.

Jim Sheahan can be reached at jsheahan@poughkeepsiejour nal.com

Copyright © 2006 PoughkeepsieJournal.com]]> http://www.ticktips4kids.com/blog/index.php?entry=12

The National Lyme Disease Memorial Park Project has announced the opening of the first phase of the project to the public. The Lyme Memorial web site was created for those who have been touched by Lyme and associated tick borne diseases -the patients who struggle to recover, the family and friends who love them, the advocates, activists and researchers fighting to make necessary changes and the physicians who provide help with steadfast and extraordinary courage.

The National Lyme Disease Memorial Park Project’s founder and Executive Director, Melanie Reber of Redwood City, CA, welcomes guests and encourages everyone to take a few minutes to visit the XonlyX {NEW} web site that honors and remembers those who have passed away from Lyme and associated tick borne diseases. They will not be forgotten.

www.LymeMemorial.org]]> http://www.ticktips4kids.com/blog/index.php?entry=11 Blumenthal subpoenas national doctors group over treatment guidelines

Business New Haven
11/27/2006

In an unprecedented move, the state attorney general has waded into the
controversy surrounding the diagnosis and treatment of Lyme disease by
launching an antitrust probe into the practices of a national doctors'
group.

Attorney General Richard Blumenthal announced on November 16 that he had
issued a subpoena to the Virginia-based Infectious Diseases Society of
America (IDSA) over its recently issued Lyme disease guidelines.

The organization, which represents 8,000 disease specialists, says Lyme
disease can be diagnosed from a discrete set of symptoms and recommends
treatment with a limited course of antibiotics.

"These guidelines may have a serious anticompetitive effect, insofar as they
prevent competing forms of diagnosis and treatment," Blumenthal says.

The IDSA was singled out because it convened a panel without representatives
from the "Lyme-literate" community, which advocates a much broader
definition of Lyme and long-term, intravenous antibiotic treatment for
ailment. The IDSA has countered that long-term antibiotic treatment can be
harmful and breed resistant "superbug" bacteria.

The IDSA guidelines will discourage doctors from using alternate diagnoses
and treatment, Blumenthal says, adding, "That possibility has profound and
important implications for insurance coverage."

The IDSA has not received any kind of subpoena in recent memory but is
"cooperating fully," says spokesperson Diana Olson.

"We stand behind the method we've used to develop those guidelines," Olson
says. "They are based on science - they represent what our experts believe
are the best that science has to offer."

"Our guidelines are voluntary," Olsen adds. "No guidelines can be a
substitute for a clinician's judgment."

Blumenthal's move drew kudos from activists who want a broader definition
and more wide-ranging treatment of the ailment, which was named for the town
of Lyme.

In a related matter, on November 16 the state's Medical Examining Board met
to hear the case of New Haven pediatrician Charles Ray Jones, who may lose
his license for prescribing antibiotics to treat Lyme for two children he
hadn't examined.

The board will meet again next month to consider Jones' case, says Bill
Garrish, spokesman for the state's Department of Public Heath.

Jones' case has attracted nationwide media coverage and Lyme activists have
started a legal defense fund for the doctor.]]>