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Thursday, September 18th, 2008

Subject:Food plan
Posted by:virginiapaints.
Time:4:06 pm.
My future son-in-law has just gotten to see the Lyme guru of Chester County PA and has been put on a new food plan. It's a glucose-free diet resembling holistic chemo-therapy. All sugars in all forms are removed from the diet to "starve" the spirochetes.
Is anyone familiar with this food plan? Are there cook books? Lists of acceptable foods or substitutes? Any help will be greatly appreciated.  My daughter is in a panic as to what to cook and what to buy.  Thanks for any and all advise.
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Monday, July 21st, 2008

Subject:New at this
Posted by:virginiapaints.
Time:11:53 am.
Mood: helpless.
I am new to this community and to the realities of Lyme disease.  I am from Chester County in Pennsylvania and the incident rate of Lyme is staggering.  The disease has never been an issue for me personally until my daughter fell in love with a man with chronic Lyme.  In the process of learning more to help my future son-in-law I am becoming more and more outraged at the difficulties they are facing with proper diagnosis, treatment, hearing it's "all in his head", or "sorry, we don't take insurance".
ANY and ALL information is welcomed. 
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Friday, December 1st, 2006

Posted by:motherfuckit.
Time:7:54 pm.
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Saturday, August 6th, 2005

Posted by:2morrows.
Time:9:11 pm.
Lyme disease is the most commonly diagnosed vector-borne disease in the United States, with over 99,000 cases reported to the Centers for Disease Control and Prevention from 1982 to 1996. During that time, the incidence of reported cases increased by at least 32-fold (LYMErix, 1998).

It is also currently the fastest growing infectious disease in the world (Vanderhoof-Forschner, 1997): between 1991 and 2000, the incidence of Lyme Disease in the United States nearly doubled and the 17,730 cases reported for the year 2000 was higher than any other previous year (Schwan, 2003). Lyme disease even surpasses AIDS as one of our nation’s fastest growing epidemics (Lang, 1997).

...to learn more about tick-borne diseases and to discuss how they affect the economy, environment, and individuals: join tickedoff
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Sunday, July 31st, 2005

Subject:Unrecognized epidemic creates problems for many
Posted by:wilder_network.
Time:10:09 pm.

The Gazette
Southern Maryland
July 21, 2005

Unrecognized epidemic creates problems for many

by Stephanie Stevens
Special to The Gazette

It is hardly ever talked about, and most who have the disease don't even realize
it, even if they have been tested. Lyme Disease is a major medical problem in
the US, according to the Lyme Disease Association of Pennsylvania.

The problem with Lyme Disease is that the testing for it is not very reliable.
Many will have the test done and it will come back negative. Doctors will then
treat the patient for something else, and the problems will only get
consistently worse.

Fortunately for Carrie Ortiz of Mount Airy, her test had come back positive when
she was tested. She was treated with antibiotics for several weeks. More testing
was done, and the unreliability of the testing was showing.

"My tests were coming back with some positive and some negative," said Ortiz.

Ortiz was diagnosed about five years ago, and has actually had symptoms for
about six years now.

"A negative blood test does not completely exclude the disease," said Dr. Nathan
Wei, a rheumatologist in Frederick. "And a positive test alone does not confirm
the disease."

According to Johns Hopkins University Arthritis Center, Lyme Disease is a
bacterial infection usually contracted from a tick bite. The symptoms are very
similar to the flu and if untreated can cause severe damage or even death.

The most common symptom is a bull's eye rash that will develop around the
initial spot of the bite.

Sometimes symptoms will show up right away, sometimes they will begin slowly and
other times they will take weeks to show up. One sign that should be taken with
precaution is flu-like symptoms in any season besides winter.

Ellie Bonde of Mount Airy had noticed a bull's eye mark across her shoulder and
after 48 hours the mark was gone completely. Fortunately she went to the doctor
the same day she noticed it. The mark was so obvious, no testing was done, and
it was verified by both a dermatologist and doctor that she had Lyme Disease.
She was immediately put on 100 milligrams of Doxycycline twice a day for three

"I was really lucky to have it in a place where I could see it," said Bonde of
her bull's eye.

Bonde keeps a chart of all symptoms she is developing to give to her doctor.
This is recommended by Johns Hopkins for people who are experiencing similar

An infected deer tick must be attached for 24 for 48 hours before it can
transmit Lyme Disease, according to Dr. Wei.

The problem with testing is not all doctors are as knowledgeable as they need to
be to treat the disease. According to Dr. Wei, Lyme Disease is a form of
arthritis because it affects the joints and muscles. The symptoms of Lyme are
very similar to those of rheumatoid arthritis.

"Lyme Disease is one of over 100 different types of arthritis," said Dr. Wei.

One Lyme patient, who has asked not to be named, was treated for rheumatoid
arthritis for about 10 years before it was proven that he was actually suffering
from Lyme Disease. The body and muscles aches along with the fatigue he was
suffering are some of the same beginning signs of rheumatoid.

Along with the disease, other diseases referred to as "co-infections" can be
carried with it. Some of the common co-infections are Ehrlichiosis, Babesiosis,
Bartonella, and Rocky Mountain Spotted Fever.

The patient who has asked not to be named is also suffering from Babesiosis
along with the disease.

His treatment for his infections is a little different than the treatment Ortiz
is receiving. He has what is referred to as a pick-line in his arm. It runs to
his chest to send the antibiotics through his body. The worst part is that the
tube must stay in all the time because his testing is done five times a week and
it is impossible to keep taking the tube in and out.

When Ortiz was diagnosed, she had trouble finding a doctor in the Maryland area
that was knowledgeable enough to treat her correctly. Both she and her husband
have the disease. Together, they make a 12-hour round trip to Hermitage, Pa.,
where they receive treatment once a month. They are coming up on their 14th
month of treatment. Although they are doing much better than they were last
year, they both still have symptoms.

"The bacteria changes shape to hide from the antibiotics," said Ortiz. This
makes it hard for it to be treated because the antibiotics won't recognize the
disease and won't be able to fight it.

Although there are more doctors in the area now who specialize in the disease,
Ortiz pays for all of her treatment out of pocket because insurance doesn't
cover all the procedures and testing that need to be done. It would cost them
more than $1,000 to be re-tested by a new doctor in the area and it would have
to be out of pocket.

The problem with many doctors who aren't specialized in the field is that "they
try to follow the Center for Disease Control (CDC) guidelines and won't think
out of the box," said Ortiz.

"The disease is not recognized as the epidemic it is," added Ortiz.

"Since Lyme Disease may look like many other types of arthritis, the diagnosis
is not always an easy one to make," Dr. Wei said. "Over-diagnosis is probably
more common than under diagnosis."

Ortiz and her husband have developed a support group in Mount Airy at the Mt.
Airy Bible Church. They meet on Friday, sometimes Saturday depending on the
calendar, once a month.

It is a place for people to come and just talk to each other and know that they
aren't the only ones out there feeling this way.

"With the way we were feeling, we figured people needed support," said Ortiz.

Some visitors to the group may not have the disease, but know someone with it or
have information on it to share with those at the meetings.

The important matter for people to realize is that many are walking around with
Lyme Disease and not getting properly treated because their doctor may not use a
reliable test. The best test to use to find an answer is the Western Blot Test,
which is recommended by Johns Hopkins. It is important to find a lab that makes
a special effort to focus their testing on tick-borne diseases and have the
procedures available to make the tests more reliable.

If a tick is found, it is possible to save the tick in either a plastic bag or a
bottle and take it along to the doctors, according to the Lyme Disease
Association of Pennsylvania. There is testing that can be done for a price, but
it is a precaution that may be worth the money.

For more information about the support group, please contact Carrie Ortiz at

Information about Lyme Disease was from the Johns Hopkins Arthritis Center,
www.hopkins-arthritis.com and The Lyme Disease Association of Southeastern
Pennsylvania, Inc. Their website is www.lymepa.org. They are a non-profit
corporation that is an affiliate of the Lyme Disease Association, Inc. Also,
information is available at www.webmd.com and www.intelihealth.com.
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Saturday, July 30th, 2005

Subject:Hide and seek - Lyme disease symptoms often mistaken for other illnesses
Posted by:wilder_network.
Time:5:25 pm.
“ Ensfield and Survilla hope heightened awareness means doctors will look for the disease in
patients and patients will be more proactive in recognizing potential symptoms.”


Record Eagle
Traverse City MI
July 27, 2005

Hide and seek
Lyme disease symptoms often mistaken for other illnesses

Record-Eagle staff writer

TRAVERSE CITY - Janice Ensfield and Michael Survilla started their crusade to educate people
about Lyme disease in an unlikely place.

The friends met in a local chronic fatigue syndrome support group after struggling for years
to pinpoint the cause of their life-altering symptoms. Both of them have since been diagnosed with
Lyme disease, whose wide-ranging signals often masquerade as other conditions like chronic

"At some point in time we've probably been diagnosed with just about everything," said
Survilla, who estimates he saw at least 25 medical specialists before testing positive for Lyme.

Infected deer ticks transmit Lyme disease, which can affect every organ and aspect of
everyday life. Early stage signs include flu-like illness, extreme fatigue and joint aches, and later
stages can spur neurological problems. Common misdiagnoses include fibromyalgia, multiple sclerosis
and a host of psychiatric disorders.

Ensfield and Survilla hope telling their stories will help other people who are unknowingly
living with Lyme.

Ensfield first became seriously ill in 1990, but looking back she believes she contracted
Lyme disease in 1987 when a deer tick bit her in her yard. A second tick bite in 2001, also at her
home in Traverse City, transmitted a co-infection.

Even when her debilitating symptoms brought her "near death" in November 2001, Ensfield had
still not heard of Lyme disease. Her turning point came in 2002 when her husband was at the
doctor's office and encountered a Lyme patient, who recounted similar symptoms.

"I got tested the very next day," Ensfield said.

Survilla doesn't know where and when the infected tick bit him, but he knew something was
wrong the day in 1989 when sudden exhaustion and shakes forced him to pause his round of golf.

"From then on it was never the same," he remembered.

Survilla, who lived in Kalamazoo when his illness emerged, was just recently diagnosed with
Lyme but like Ensfield had gone years without hearing about the disease. Both take antibiotics -
the typical treatment - and see a Saginaw doctor who specializes in Lyme.

Linda Lobes, president of the Michigan Lyme Disease Association, said diligent awareness is
the best defense. That means knowing how to detect and properly remove ticks no larger than the
period at the end of this sentence and looking out for symptoms, which include but are not limited
to the distinctive "bull's-eye" rash.

"The only way to remove a tick is with tweezers, getting as close to the skin as possible,"
Lobes said, noting that using a lit match or other methods can agitate the tick and exacerbate the

Not all ticks are infected with Lyme disease, but experts recommend erring on the side of
caution. Other preventative measures include wearing light-colored clothing so ticks are easier to
see, covering skin with long sleeves and pants, wearing closed-toe shoes and applying insect
repellents such as DEET.

The Grand Traverse County Health Department logged no local reports of Lyme disease this
year or in 2004, said medical director Michael Collins. Lyme is among the conditions doctors are
required by state law to report, but Lobes said varying criteria for tracking Lyme cases make reliable
statistics hard to find.

Ensfield and Survilla hope heightened awareness means doctors will look for the disease in
patients and patients will be more proactive in recognizing potential symptoms.

"It should be one of the first things doctors look for if someone has any of the symptoms at
all," Ensfield said.

Letters to the Editor (online form):

[Non-text portions of this message have been removed]
source: http://groups.yahoo.com/group/lymeinfo/
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LiveJournal for the LymeLight.

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You're looking at the latest 6 entries.