Alaina Rubin has not been in school for three years. As a 14-year-old, she should be going to the mall and playing sports at Linwood Middle School in North Brunswick. She should be able to think critically and problem-solve, and participate in extracurricular activities. She should not have to worry that, when the time comes, she could have problems associated with pregnancy.
However, because Alaina was diagnosed with Lyme disease three years ago, she instead is home-schooled and lives a limited life because of the debilitating effects of the disease.
“It’s just devastating. My heart is broken,” her mother, Nancy, said.
Alaina was not diagnosed for eight months, even though she went to four or five physicians and had three emergency room visits. It was later discovered that she had direct transmission and has subacute encephalopathy – her brain and spinal cord are inflamed and she has constant headaches.
“The thought of her future right now is crushing, without research,” Nancy Rubin said.
Alaina Rubin is just one of an estimated 200,000 people inAmerica, and numerous people around the world, who suffer from Lyme disease and other tickborne illnesses.
Therefore, several patients’ groups have been trying to garner support for proper diagnosis, testing and treatment options to help limit the effect of the bacterial disease, and are pushing for the Lyme and Tick-borne Diseases Prevention, Education and Research bill to be heard before Congress in June.
Jeannine Phillips, who is the chair of the LymeQuest Support Group and Advocacy Project, has Lyme disease, as do all four of her children. The former chemist said her illness got so bad at one point that she couldn’t remember her children’s names, couldn’t go shopping for dinner and had trouble talking.
Pat Smith, president of the National Lyme Disease Association and the former vice president of the International Lyme and Associated Diseases Society, has had Lyme disease for 22 years, and two of her three daughters have been diagnosed. Her youngest daughter has been suffering for 20 years, beginning with absence from school for four full and two partial years. She also had seizures for three years. She now lives independently, living and working in New York, but she has heart damage from the disease.
“It is certainly an extremely debilitating disease,” Smith said.
Jackie Mueller, 50, of Dunellen, used to work with a Fortune 500 pharmaceutical company. She got sick three years ago – numbness in her arm was considered a heart attack; a heart catheter was inserted because she was thought to have had a stroke; MRIs and CAT scans showed signs of a pinched nerve; acid reflux was a symptom; and two CAT scans of her brain showed lesions, leading to the assumption of multiple sclerosis.
Instead, Mueller was just recently diagnosed with Lyme disease.
“I would come from work – I couldn’t make dinner, my house is a mess, I have a 10-year-old I can’t play with,” she said.
Her sister went through a similar series of misdiagnoses, with lupus, carpal tunnel syndrome and a heart murmur being mentioned. Finally, she tested positive for Lyme, as did Mueller’s niece and nephew.
Inga Querfeldt thinks she may have contracted Lyme as a child. She went through several different episodes growing up, and thought she had multiple sclerosis in the 1980s. She got sick in the 1990s and was told it was stress, related to the death of her father. She had two gastrointestinal surgeries and was hospitalized several times.
During a visit with her psychiatrist, the doctor noticed she had swollen joints and a fever, and mentioned the possibility of Lyme.
Querfeldt went back to the hospital, had different lab work done and tested positive for Lyme. Her official diagnosis came in 1995, and then in 1999 she was also diagnosed with babisiosis, a polymicrobial infection.
The 64-year-old Bloomfield resident said the current screening tests – most commonly the enzyme-linked immunosorbent assay (ELISA) test – are only 40 to 60 percent accurate, which is why the goal of the proposed House bill, would be to promote proper diagnosis and treatment methods.
Mary Rock, 48, of Metuchen, said every member of her immediate and extended family has contracted Lyme disease. She said her dad was involved in biochemical warfare experiments in the 1950s and was injected with various bacterial and viral strains, such as Q fever, equine encephalitis and Rocky Mountain fever.
She said she noticed her own symptoms of vertigo, heart palpitations and numbness, and at age 35 she thought she was having a heart attack or was exhibiting symptoms of a neurological disease.
Rock had two years of negative tests for Lyme, but developed seizures and lesions on her brain. She said, “After four weeks of IV, I was supposed to be fine.”
Instead, she had two and a half years of intravenous medication, and is now “functional” but said she still has problems.
“Even with extended treatment, I still have symptoms – we all do,” Rock said.
Rock also said that one disease affects another, especially since the immune system becomes run-down, so the typical 30- day treatment is not effective enough.
“It takes a long time to eliminate all the various pathogens,” she said.
Kathleen Kirby, a school nurse, has been watching her daughter, Moira, 24, suffer for seven years.
Kirby said that in 2000, as Moira was a junior at East Brunswick High School, she got flu-like symptoms, including debilitating headaches. She was treated with antibiotics for a sinus infection several times and would be fine for a while, but then the headaches would return.
“You kind of get vibes as a mom, and as a nurse, and you think, ‘Something is not right,’ ” she said.
After visiting with 13 different doctors, Moira had to stop playing basketball. Kirby said her daughter couldn’t sleep, wouldn’t eat, couldn’t do her homework and would just lie in bed. She went to a neurologist to check for migraines, but the headaches continued despite treatment, in addition to the fact that Kirby thinks there were more negative side effects than benefits from the medicine.
Kirby searched for information on the Internet and became aware of Lyme, noticing that headaches and lethargy are major symptoms. She took her daughter to an infectious disease specialist, who made a decision that the infection was not Lyme, based on the Western blot test. However, Kirby was still concerned because as the disease progressed, her daughter lost a significant amount of weight, was not eating, and was sleeping all the time.
“She felt like her body wasn’t doing what her mind told her to do,” she said.
After visiting a hospital in Philadelphia, Moira was sent home again. She then received a call from a neurologist from the hospital, who diagnosed her with Sjogren’s disease, a chronic disease in which white blood cells attack the moisture producing glands. Because Kirby knew that was something that usually affects women over 40 who have no saliva and dry eyes, she was still not satisfied.
Two and a half years into this, Moira went back to a headache specialist, visited three or four rheumatologists for limb pain, had two spinal taps and would randomly lose her vision.
“In the hospital, the first thing she got to do when she was 18 was sign for her own spinal tap. But it was for nothing – there was nothing there,” Kirby said.
Moira did graduate from high school and went on to Rutgers University, but her mother would have to give her injections constantly, and while studying abroad in Germany, Moira had to have intramuscular injections of penicillin.
Kirby then met Phillips through an Internet forum and became convinced her daughter was suffering from Lyme disease.
“There is no good information out there,” Kirby said of the importance of having the Lyme bill support research endeavors. “Education is such an important thing.”
Margie O’Brien, of South Brunswick, agrees that more research and education are needed, especially to counter the thinking of some experts that Lyme can be “cured” in 30 days. She said if the disease were so easily treated, thousands of patients would not be suffering. She is among the many who believe there is a need for an effective vaccine to prevent the awful ravages of the disease.
In 1999, Smith Kline Beecham got FDA approval for the LYMErix vaccine, but it was removed in 2002.
“I consider us lucky because we know the truth, but what scares me is the parents who don’t know about Lyme and their children are so sick,” she said.
O’Brien said her two children and her neighbors all have forms of the disease.
“It is aggravating that no one is paying attention to what is going on,” she said. “How many children are going to have to suffer the consequences of this ignorance?”
For more information, visit www.LymeDiseaseAssociation. org.
To contact Rep. Frank Pallone regarding the Lyme disease bill, call 202-225- 4671.