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Bodhin's story:
April 10, 2006
I believe Bodhin's story started just before birth. I developed a brownish crusty rash at the base of my spine the week of Bodhin's birth. I think it was a Rickettsial rash as it most closely resembled herpes (what my doctor diagnosed it as).
Bodhin was quite a healthy baby although he did suffer from eczema and rashes. I found that by eliminating dairy from my diet most of his eczema disappeared but not all of his rashes. As he grew he seemed rather prone to chesty coughs even though he was breast fed exclusively for the first 6 months and continued nursing for over 3 years. We were careful not to give cows milk as he seemed really sensitive to it.
Bodhin didn't really start to speak until he was 3 years old. He also didn't like to walk very much and would ask to be carried or ride in a stroller much of the time. We think that some of his colds were due to mold in the apartment we lived in but when we moved to a house when Bodhin was 5 his asthma did not seem to improve. One thing that I always found strange about him as young child was that he had bad smelling breath. It seemed to have a sort of rancid smell to it.
By age 6 he was experiencing more and more symptoms. He seemed prone to fevers and muscle spasms in his neck. Any simple cold turned into a cough that lasted for weeks. By the time the cough would leave he would get another cold and the process would begin again. In the fall of 2003 Bodhin developed a strange rash on his bottom, which looked like ringworm. We treated it and it went away. He had a high fever with chills that we figured was stomach flu because of the vomiting and loose stools. Since he was in kindergarten we just figured it was going around. He started to get boils on his legs. They would come up one at a time and sting terribly. We took him to the doctor and were told that they looked like insect bites. We searched his room for spiders (they looked like spider bites) but found none. He also complained that his knees hurt. We thought he was having growing pains. Around this time he started having monthly fevers. They would last 3 or 4 days and then pass.
He had no appetite and was completely exhausted but on day 4 or so he would feel better. He also had ear-aches, which would always be diagnosed as fluid in the ear and not infection. Sometimes he would wake up with a terrible neck spasm. He complained of dizziness, headaches and ringing in his ears. We took him to chiropractor and got him a good orthopaedic pillow. We changed the position of his bed and bought a new mattress. Nothing seemed to really help.
He complained of pressure in his eyes so we took him to the eye doctor and they found nothing wrong. He complained of bellyaches and foods that he used to eat with no problem started disagreeing with him and giving him heartburn and very stinky gas. He started to get hives on his face and sometimes hands when he went out side. They came up when we walked in the bog (close to our house) so we thought it was molds from the bog but it started happening on sunny days and sometimes at school.
Bodhin seemed to require and inordinate amount of sleep and most days I had to drag him out of bed. Sometimes he said his back or knees hurt so we would drive to school. He felt better later in the morning and would have no complaints until the evening time when the dizziness would return. His motion sickness worsened and car rides would bring on headaches, nausea light and sound sensitivity. Some days he had headaches at school and had to lie down for a while. His teacher reported that he frequented the bathroom more than most kids and wondered if he was trying to avoid something. His writing was very messy but we thought that was just an age thing.
Bodhin also seemed to be prone to constipation alternating with diarreah. But it seemed to pass quickly so we thought it was a yeast overgrowth. He took niastatin for a while and he seemed to improve and then get worse again. He started to have severe mood swings. We thought it was due to a drop in blood sugar and would try to feed him to stave off the rages. This was so unlike Bodhin's normal behaviour that I knew it couldn't be just a phase and eating something seemed to help him.
Some days his face one cheek or ear would be bright red when he woke up and he would be soaking wet. I thought he was just hot in bed and so he started sleeping naked, which seemed to help. He complained of the tip of his nose going numb so we took him back to the chiropractor but it didn't help. Bodhin became severely allergic to dogs.
By age 7 we noticed that he didn't seem to be growing and he appeared to be getting skinnier. More and more foods made him feel bad so we took him in to get a requisition for an allergy test or blood tests for bacterial infection. Our family doctor suggested the tests for bacterial infection first. Bodhin's test came back strongly positive for Bartonella, showed some sign of Rickesial infection and with a positive Elisa test although the Canadian western blot came back negative. I was assured that he didn't have Lyme disease but as the Elisa and western blot tests are notoriously inaccurate and his symptoms indicated otherwise, I thought that he should be treated as if he had it. Several healthcare professionals I have spoken to state that Bartonella is self-limiting. In my experience it is not. Bodhin's case history speaks for itself. If it weren't for the diligent efforts of our Lyme specialist doctor I am sure Bodhin would have ended up being diagnosed with chronic fatigue, juvenile arthritis or worse.
In April 2005 Bodhin started taking doxycylene. Since he was nearly 8 years old the doctor thought it would be okay. He was on 100 mg. every day for 3 weeks then switched over to Zithromax 100 mg. every second day. This dose was given for about 2 months and then the length of time between does was extended. In the first couple of months he had strong herx reactions. Some days he would fever for a few hours than stop. Sometimes he would have hives and most interestingly his old chicken pox scars would raise up. Sometimes he would have awful headaches resembling migraines but they would pass after an hour or 2. Sometimes he would have locking in his fingers and toes. Sometimes his knees would give out. Most of Bodhin's stomach problems resolved in the first 2 months. His daily headaches lessened, he had an easier time waking up, his rages disappeared and the pressure in his eyes went away, his breath became fresher and his appetite increased and he started to grow and gain weight. Bodhin had always had a crusty scalp that no amount of washing, oiling, or special shampoos would help. Since starting the antibiotics, this too has cleared up.
He has been on Zithromax 250 mg. once a week for the last 7 months or so. He takes acidophilus every morning and feels great most of the time. He occasionally gets a headache, has fingers or toes lock and still gets some dizziness at night. He has faint tinitus but nothing like the loud ringing he suffered before. He still gets motion sick but not as bad as before. He has had fewer colds and coughs this year than ever before. His writing is neat and intelligible and he is social and well liked. He had blood tests last month and the Elisa test came back positive again while the Western Blot came out negative. His Bartonella count is way down but the Rickettsia is higher. My doctor told me that this indicates that the immune system is reacting and fighting off the disease.
We think Bodhin may end up on antibiotics for perhaps a year and a half but since they are low dose we are not worried about the side effects. We are careful to give lots of acidophilus and keep his sugar intake at a minimum.
We are grateful to have discovered what was plaguing our child and to have found a remedy. We hope other parents can benefit from knowing that Lyme and Lyme related diseases do exist in BC. Bartonella is not necessarily self-limiting and needs to be treated over a long term.
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