TEXAS CHILDREN WITH LYME DISEASE
From the Texas Lyme Coalition
Virginia, aged 15, high achieving student, vacationed in the Yucatan with her family. Eight weeks later, pediatrician extracted a tick from her arm. Two days later all family members came down with a flu-like illness: fever near 101; extreme fatigue. No rash. Three seemed to recover. Virginia's symptoms persisted: fever; headaches; nausea; diarrhea; extreme fatigue; muscle and joint pain. Doctor suspected Lyme, prescribed 3 weeks of doxycycline, but ELISA negative. Herxheimer mistaken for allergic reaction. Meds discontinued. Blood tests normal. Suggested diagnoses: hypochondria; virus; rheumatoid arthritis. Over 4 months, increasing migratory joint pains, clouded vision, tremors, confusion, memory loss, fibromyalgia. She became homebound. Lyme expert in Dallas tested her and her mother for Lyme by Western Blot. Virginia seronegative, but mother, father, and brother all CDC positive, having gradually developed fatigue and joint pain. All treated with long-term, aggressive antibiotics. Three cases resolved between 4 and 18 months. Virginia improved steadily over 2 1/2
years on Bicillin injections twice weekly, but low-grade fever and back pain recurred. Tested positive for Babesia microti by PCR. Final symptoms resolved after 3 weeks of Zithromax and Mepron with Bactrim added the third week. After 3 years illness, 2 homebound, Virginia is fully recovered and will go to college.
Nathan, aged 10, active Scout, went camping in Texas many times in the fall. Never saw a tick or a rash. In January, began repeat visits to pediatrician with: ear and sinus infections; suspected asthma; flu; viruses; headaches; low grade fever; chronic fatigue. Blood tests negative. Suggested diagnoses: sinus infection; CFIDS. Headaches became intolerable; missed a month of school. MRI showed normal variants. After 6 months, tested for Lyme. CDC positive by Western Blot. Given 3 week course of amoxicillin. Headaches improved, but constantly fatigued, gained weight. 3 months later, hospitalized for migraine and dehydration. Spinal tap; MRI; blood work — all negative. Suggested post-Lyme syndrome, which would clear itself. After consulting 2 Northeast Lyme experts, put on oral tetracycline. Severe Herxheimer reaction; developed night-terrors. Babesia testing denied due to lack of malaria-like symptoms. Third Lyme expert tested for Babesia. Positive by PCR. After 3 months of Zithromax, Mepron, Bactrim regimen for Babesia, was put on Bicillin injections for Lyme this January. Missed 6th grade, but after 18 months, Nathan is playing like a normal child. Will stay on injections until symptom-free for 3 months.
Tara, aged 14, ideal high-achieving student, adopted a dog that was covered with ticks. Parents pulled several ticks off Tara. The dog developed seizures unresponsive to seizure medication. Tara began having symptoms recurring every 4-6 weeks: low grade fever; joint pain; aching; nausea and vomiting; mental confusion — worsening with each episode. The dog's seizures worsened and it died. After 2 years of illness, Tara developed: syncope attacks; severe headaches; a recurring red rash. Attempted diagnoses: immune deficiency; hypochondria; abuse; vascular headaches. Periods became irregular with severe cramping. New symptoms: difficulty concentrating; disorientation; seizure-like activity in arms and legs; narcoleptic episodes; post-sleep paralysis. Mother quit her job to care for Tara at home. Immune work-up, MRI, EEG—normal. Tara was tested for Lyme in Connecticut. Seropositive, confirmed by blood culture. Insurance company refused IV antibiotics. Approved trial of oral antibiotics over 3 years after initial infection. Severe Herxheimer reaction. Eventual IV antibiotics for 6 months achieved solid improvement. Off medication, relapsed. Now on oral tetracycline. At 19, Tara has been ill and homebound for nearly 5 years.
I am but a story, unfinished, I go on as long as there are storytellers, but some parts are finished, some parts of greater tales need to be set down. But know this: any tale can be amended so take from this only that it is part of a greater story, one that can never be finished and so never be told in its entirety. In the hour of darkest need, when even the Unconquered Sun was made ineffective
March Explorer! General Member Meeting Directions: The next ECP General Membership Meeting will be held March 8, 2012 at 7:30pm Location: The Union Project Meeting Room, 801 Negley Avenue (Corner of Negley and Stanton). Parking: Street parking available on Negley Ave. or in a large lot on Stanton Ave. across the street from the Union Project Building. General Member Meeting Agenda Welcome to Membe