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At Age 17 Diagnosed With Fibromyalgia
4 Replies
SarahO. - December 4

A life in the dark
Laura Spencer’s debilitating fight with Lyme disease
Scott A. Clark, Chester County Press

Eight years ago at age nine Laura Spencer was the Delaware State Gymnastics
Champion. She was as happy and healthy as any other girl her age. Now, at age
17, Laura spends most of her waking hours lying in a darkened bedroom, the
blinds drawn against the painful light of day. The pain in her body is so great
she there are days when she cannot even get out of bed.

“I can’t explain to you her suffering,” says Laura’s mother Janet

“My whole body feels like I have been thrown off of a cliff,” adds
Laura. “There have been days when I felt like I was going to die, and I
wanted to.”

The disease that has robbed Laura of her youth and has caused her such
suffering is Lyme disease and, while her case is extreme, it is symbolic of the
experiences of thousands of other Lyme disease sufferers throughout the

Laura first contracted Lyme disease when she was three years old. Her doctor
prescribed a week of penicillin treatments and the symptoms disappeared. When
Laura was eight years old the symptoms began to reappear: headaches, stomach
problems, aches in her feet, etc. Doctors now believe that these symptoms
resulted from a recurrence of her earlier bout with the disease combined with a
new infection.

After Laura’s symptoms resurfaced, she and her parents began a long and
frustrating journey in search of a diagnosis. In the end the Spencers would
visit over 30 physicians and spend over $50,000 before Laura was finally
diagnosed as having Lyme disease. During this time Laura also underwent eight
sinus surgeries because of persistent sinus infections brought on by the
disease. She was also accused of faking her symptoms as a way of getting
attention. One doctor even told Janet that Laura was simply “jealous of her
younger sister.”

The misdiagnosis continued when, at age 13, Laura was diagnosed as having fibromyalgia, a disease that causes chronic muscle pain and fatigue. She went
through two years of painful physical therapy before being taken to Dr. Charlene DeMarco, a Lyme specialist near Cape May [actually Egg Harbor, Ed.],
New Jersey. Through a PCR test, Dr. DeMarco was able to diagnose Laura as
having Lyme disease. The PCR test detects the DNA of the Lyme spirochete in
blood and urine and is one of the only definitive tests for the disease.

According to Janet, Dr. DeMarco started Laura on high-dose oral antibiotics,
which had some effect, but were too hard on Laura’s stomach. Dr. DeMarco was
planning to start Laura on intravenous antibiotics, but an investigation of her
practice by insurance companies prevented her from doing so. Janet believes
that the insurance companies are partly to blame for the lack of proper Lyme
disease care by physicians.

For the past two years Laura has been on and off intravenous antibiotics,
the longest stretch being four months during which time she showed marked
improvement. However, when the antibiotic treatment stopped she quickly
regressed. Laura recently started a six-month intravenous antibiotic program
that she and her parents hope will knock the disease out once and for all.
Janet has been in contact with a mother in Connecticut whose daughter suffered
from an even more severe form of Lyme disease than Laura has. After undergoing
long-term intravenous antibiotics, she has been able to live a full and normal

Laura and her parents lay much of the blame for her suffering on the medical
community and the lack of current research into Lyme disease.


“The medical community is about 10 years behind in Lyme research,” says

To correct this deficit in research, several Lyme disease organizations are
planning to bombard the White House on Valentine’s Day with valentines that
encourage increased funding for Lyme disease research.

For all of the pain and suffering she has been through, Laura maintains a positive outlook on her future.

“In all of this I do have peace,” she says. “I am not going through
this for nothing. I believe that the Lord does have a plan for me.”


Still, Laura does miss the life that she has been robbed of. She can no
longer sing because of the pain in her jaw. She cannot hang out at the mall
like a normal teen-ager. She cannot do something as simple as sit outside in
the sunlight and enjoy the fresh air. On a good day, Janet says, Laura will sit
in the living room and watch television with her parents for an hour or two.


“This is someone who was doing back handsprings on a balance beam when she
was nine,” says Janet.

All the Spencers can do now is hope and pray that the six-month intravenous
antibiotic treatment works. Until then, Janet will continue to work to educate
people about the dangers of Lyme disease.


“If anyone doesn’t believe that Lyme disease can ruin your life, I say
‘come and meet Laura,’” says Janet.


Meanwhile, Laura will continue to face the future with optimism and dream of
the day when she can get out of bed, put on her favorite outfit and run as far
and as fast as she can like the bounding, bouncing gymnast she once was.

County Press


dalejr62 - December 4

I'm going to a rheumotologist on Monday the 10th to see if I have fibro or what it is. I will make sure I get a Lyme disease test also. I dont really know what to expect from him.


SarahO. - December 4

Good for you!!! Yay*)*!)! I am glad.

Just fyi, there IS lyme in every state except Hawaii in case your Doc says it is not there, Rheumies often truly don't know that it IS there.

If you do that, ask for a Western Blot with BANDS (test) and when it comes back, ask for what bands were positive.

Why is this important? the CDC does surveillance with "CDC positives", wihch most doctor take as diagnostic- it is not meant to be. When they were deciding on what was CDC positive, they found that the average female has 4 WB bands, the average male 6, so they made the Dearborn Criteria (the WB bands) 5!!!! So women are more likely not to test CDC positive!!! There is a gender bias in the test.

Certain bands though- if you just get ONE, are diagnostic because they are species specific- you literally can't have gotten them any other way other than being infected.

One example of this is 39 kda (kilodalton
antigen). Let's say the Rheumie says, "You don't have Lyme disease- you only had one positive band and you need 5 for diganosis!"

A smart educated patient might say, "Well, what band is it?"

If it is 41, it doesn't mean anything almost, it certainly would not mean you had Lyme!!!

BUT if it was band 39 kda, that is species specific, you can ONLY get that from the Lyme spirochete!

So those are some tips when dealing with Lyme tests. or just Google has some great papers by Tom Grier, M.S. on Lyme disease testing
I would suggest going to to the SeekinG Doctros column here

ALSO make an appointment with a Lyme doc in your area. Rheumies don't tend to know much about Lyme and often disregard it as a possibility, sad to say. They don't tend to know that you can have it and be blood negative.

It is worth it to go to a Lyme doc.

I had multiple Rheumies diagnose me fibromyalgia and say I would have it for life. And I don't have it anymore!!!

I am glad you are planning on getting tested- also ask to be tested for Babesiosis and Ehrlichiosis- those are also all over the USA and can cause fibromyalgia-

If your Rheumie says Lyme is overdiagnsoed you can let him or her know that the authors of the article "The Overdiagnosis of Lyme Disease" are under investigation by the Connecticut Attorney General Richard Blumenthal for inappropriately manipulating the standard of care for the benefit of managed care(insurance industry)!!!
So that is why you hear so much dissenting stuff re Lyme-!!!

It probably all sounds confusing so just ignore that and get tested!! And be sure & ask for the Western Blot bands- a negative or positive means nothing- and an ELISA would be inappropriate unless you were JUST bitten which is not you!!!

Good luck, call me if you want, daylight West Coast hours-
Sarah O.


Wycklochness - December 7

I find all comments very interesting on this site, yes even Sarah and Robin. My question is ....... I live in Australia, where there appears to be no scientific evidence of ticks that give you Lymes disease. But I did go to the USA in 1989 - California. My symptoms did not start until about 2000, I think, and have only become worse over the last 2 years, I was diagnosed 3 months ago with FMS. But I do read with interest your comments, and am more than well aware that doctors do get it wrong, or just dismiss your symptoms as in the head.


dalejr62 - December 7

Thanks SarahO I sure will take your input to the doctor with me. I will also let you know what they say. Thank you so much! You are very kind to share this info with me. Yes doctors do sometimes misdiagnose and thats why I originally wanted to go to a rheumetologist. My PCP is who diagnosed me. Then I found this site and I've been told to see a rheumatologist. I will do what ever I can to get this figured out. FMS or Lyme I want the right answers to what in the heck is wrong with me. Thanks again Sarah I will let you know. :)



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