Laura sai tartunnan 3-vuotiaana. Hän sai silloin viikon penisilliinihoidon ja oireet hävisivät. 8-vuotiaana vanhat tutut oireet alkoivat palata; päänsärky, vatsakipuja, jalkakipuja jne. Tästä alkoi pitkä ja kallis matka - lukuisia lääkäreitä (yli 30) ja suunnattomat summat rahaa (yli 50 000 $) - ennen kuin Lauralla viimein todettiin borrelioosi.
Tällävälin Lauralle tehtiin 8 poskionteloleikkausta kroonistuneen poskiontelotulehduksen vuoksi. Lääkärit jopa syyttivät häntä oireiden paisuttelusta jotta hän saisi huomiota! Yksi lääkäri väitti oireiden johtuvan siitä että Laura on kateellinen nuoremmalle sisarelleen!
Virheellisten diagnoosien sarja jatkui. 13-vuotiaana hänen väitettiin sairastavan fibromyalgiaa. Hän sai kivuliasta fysikaalista hoitoa kunnes hän viimein tapasi borrelioosiin erikoistuneen lääkärin, DeMarcon. Lauran PCR-testi oli positiivinen sekä verestä että virtsasta. Laura sai voimakkaita antibiootteja suun kautta mutta hänen vatsansa ei kestänyt niitä. Hänelle aiottiin aloittaa suonensisäinen antibioottihoito mutta vakuutusyhtiöiden vuoksi hoitoa ei voitu aloittaa heti.
Nyt Laura on saanut aika ajoin iv antibiootteja - pisimmillään 4 kuukautta yhteen menoon. Tällöin hänen vointinsa on aina tullut paremmaksi. Pian hoitojen lopettamisen jälkeen oireet alkavat kuitenkin uudelleen palata. Parhaillaan Lauralle on aloitettu uusi 6 kk kestävä iv hoito. Sen toivotaan olevan riittävän pitkän taudin hävittämiseksi pysyvästi. Lauran äiti tuntee asuinseudultaan äidin jonka tytär oli vielä vakavammin sairastunut kuin Laura. Tyttö sai pitkän iv antibioottihoidon ja on sen jälkeen pystynyt palaamaan normaalin elämään.
Lauran vanhemmat syyttävät nykytilanteesta lääketieteellistä yhteisöä ja sen jälkeenjääneisyyttä borrelioosia koskevissa asioissa. Useat borrelioosijärjestöt aikovat ottaa Ystävänpäivänä yhteyttä Valkoiseen Taloon jotta saataisiin pikaisesti lisärahoitusta borrelioositutkimukselle.
A life in the dark
Laura Spencer's debilitating fight
with Lyme disease
Written by Scott A. Clark scl...@chestercounty.com
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 Spencer.
"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 country.
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 Lauras 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, Lyme specialist near Cape May, 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 life.
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 Janet.
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 doesnt 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.