Victoria's story

[Franky]

Victoria contracted Lyme disease in June 2005. She had the classic bulls-eye rash on her arm, but the emergency room doctor misdiagnosed it as an infected hair follicle.

"It was painful, but then it cleared up," she says.

But three weeks after the rash was gone, Victoria had a seizure. This led to extensive testing and a positive test for Lyme. She was diagnosed with Lyme disease in September 2005 and was placed on a course of antibiotics for several weeks. Despite being exhausted and having debilitating headaches, earaches and eye infections, she was pronounced cured of the disease.

"Then (in fall, 2006) I couldn't concentrate and started feeling like I was missing half of my lessons. Later, I found out that it was due to little seizures I was experiencing that were making my brain completely stop functioning," Victoria says.

On Dec. 4, 2006, Victoria had a seizure in school and was rushed to the emergency room. After a hospital stay and further testing, she was referred to a Lyme disease specialist in Connecticut, who diagnosed her with chronic Lyme disease and meningitis of the brain. By this time, she had been taken out of school and was in extreme pain. After taking several different types of antibiotics, Victoria was finally given the antibiotics she takes now.

"It was so frustrating, because I was ahead of my class and taking two college courses, and then I fell behind," Victoria says. (She finally finished her coursework for her sophomore year this summer.)

Then Victoria had another seizure in June 2007, also while in school. After a trip to the emergency room and a referral to Columbia Presbyterian Children's Hospital in New York City, she was told she did not have Lyme disease, and instead had "deep-rooted psychological issues," and that she should think positively in order to feel better.

Today, Victoria has resumed treatment with her specialist in Connecticut and receives a daily dose of antibiotics through a PIC line in her arm that delivers the medication to her heart. PIC lines are long, flexible tubes inserted into a large vein, usually near the elbow. The tube is threaded up the vein until its tip reaches the large veins inside the chest. PIC lines are helpful for patients who need to receive medication at home for long periods of time.

She's been feeling much better, (which makes her think more positively!) but is still not "herself." She must get extra sleep, limit her activity and essentially take precautions with every move she makes and everything she eats.

Diagnosis, testing and treatment
Lyme disease is elusive. It's difficult to detect and frequently misdiagnosed.

"I've seen thousands of patients with Lyme disease, and 90-plus percent have been told they don't have it or have been improperly treated for it," says Dr. Gregory Bach, a Philadelphia-area expert on tick-borne diseases.

About 20,000 new cases of Lyme disease are reported to the government every year, says a June 2007 analysis from the Centers for Disease Control and Prevention. The CDC acknowledges that's a fraction of the true toll, as many cases go unreported. And experts say the numbers are probably much higher.

"I'd say the numbers are between 100 to 1,000 times that statistic," Bach says.

Lyme disease, named in 1975 when a group of children in Lyme, Conn., were found to have the disease, is a bacterial infection spread by ticks. Within weeks of a bite, people often develop flulike symptoms. But it's not always easy to detect. While some people develop a bull's-eye rash around the bite, this is not a definitive sign: Less than 40 percent of Lyme disease sufferers develop a rash at all.

Lyme disease begins in the skin and, if untreated, spreads to the joints and the nervous system. It can cause a plethora of symptoms and often mimics other diseases, making diagnosis difficult. People are commonly misdiagnosed with multiple sclerosis, fibromyalgia, lupus, chronic fatigue syndrome, arthritis, ALS (Lou Gehrig's Disease), Alzheimer's and carpal tunnel syndrome, among other illnesses.

For most people who develop chronic Lyme disease, the standard treatment is a course of antibiotics for one to four years, along with a program of exercise and nutrition. There is no official cure; even after symptoms disappear, recurrences are common.

Bach says he always treats his patients for at least six months.

"I've had thousands of patients who were given antibiotics for four to six weeks, only to get sick again," he says.

Tests for Lyme disease are unreliable and inconsistent, say experts. Several blood tests are available, but all have limitations. Some will not detect infection until after the disease has manifested itself. Others are simply not accurate, Bach says.

And to complicate the diagnosis even further, Lyme disease often is not the only illness present.

The ticks that carry Lyme disease also carry other diseases, so it's typical for people to develop co-infections. Doctors will often have to find balance between treatments for two or more infections.

By Kathleen Costello
kcostello@stargazette.com
Star-Gazette

[ladycolorado]

thanks for the story franky. i feel alot better to hear she finally found a specialist that has helped her some. iv meds, i will say do help. i had only five months of iv meds, because my catheter just secided to slide out of my chest one day. i call the clinic about my groshon catheter, and they must have it happen all the time, i asked if i had to go to er, they are like no, you are fine. i said yeah, but a hole in my vein near my heart. nurse said oh, that just closes. amazing, but those catheters are very well designed. i had this hyper puppy a couple of weeks before by accident let in by roomates while hooked up to iv bag, it got pulled out a little bit. well i guess eventually just slid out on its own. a small tube like a spaghetti nooodle, blue with a plastic end with a a spring-loaded end needleless, and at end going near heart a dense rubber grey foam stop, tiny. i have been doing okay on the pills, the iv is good, and the pills to a lesser degree, but better than what i was. if you read my story brooke and chronic lyme, she ended up on 24/7 pumping of antibiotics to hert fro about a few months, and sessions in a hyperbaric chamber to have the oxygen help get at the organism better, and feels tons better. really good video gumball clued me into it. what is it with emergency rooms and lyme anyway? say nothing is wrong, like some dark age narrow minded thinking. OF COURSE SAY NOTHING IS WRONG, WHEN THEY DO NOT TEST FOR WHAT IS WRONG, DUH! . so pills good, iv better, iv pumps atibiotics 24/7 to heart and hyperbaric chamber to have pure oxygen to help absorb the medicines to get at the bacteria and spirochete organisms best. we have the i phone, and all kinds of cool gadjets, instead of turning away the ill and giving then mickey mouse doc treatment from the dark ages, a few months like booke had could save years of chronic suffering. WHAT WOULD BE REALLY GREAT IS PROPER TESTING TO FIND DISEASE BEFORE BECOMES SO SERIOUS HURTS NERVOUS SYSTEM IN THE FIRST PLACE! DUH! . the day after i visited the emergency room , i had besides the peripheral neuropathy i had, (shoe size went from a sz8 to a 10) which er said i did not have . DUH! and wedding band hubbie has because hands so swolle the thick gold bad in deperation tried to cut off with a pair of dikes, they nicked the i love you inscription inside, i finally got off thaks to bubbas treatmet steps. without the help of good folks like you and her in here, i would be crippled no doubt and had not found the medical help i had. but the next day my right kneee swelled and i had a bullseye rash on my arm for like two weeks. i did not at first conect to the headlice feasting on my head, duh me . they also duh! need to recognise BORELLIA AND ANTIBODIES DO NOT SHOW UP IN HEALTHY PEOPLE EVEN IF ON LOWER LEVELS IN SOME CASES DUH! ALSO THAT TOXINS AND BYPRODUCTS CAN STILL MAKE A PERSON SICK DUH! okay eough said on the subject but those who see this need to look up brooke lyme disease video, to see when chronic the best treatmet, i had good but not best, LOOK AT BROOKE AND CHROIC LYME VIDEO TO SEE WHAT I AM TALKING ABOUUT(LC).

[tcmgpt13]

LC,

Is there something I am missing--do not see a video link. Or was all this posted in an earlier thread?

thanks,

tcm

[gumball]

hi tcmgpt13 yes the video of brooke was posted on august 28 on the lymes disease board it was aired on the good morning america news very interesting treatment gumball

[ladycolorado]

here is the link on the lyme disease video gumball and i were speaking of: http://abcnews.go.com/Video/playerIndex?id=3531862 . (LC).

[tcmgpt13]

LC,

Thanks for the video link. Underlines how poor is the understanding of lyme disease. The treatment after it has become chronic is less than optimal too.

best,

tcm

[MELISSAJ]

Reading her story just makes me weep. How many of us kept beating ourselves up for not being all that we were previously. Doctors had no clue so I just blamed myself.

I want to be better and normal so badly that it hurts, but honestly, when I come here, I realize how sick that i am even when I pretend that I'm okay.

M

[ladycolorado]

well we are sick yes, but without this place here who know where we can be at least not something fatal, and ways to fight it for this i am grateful , (LC).