Rebekah's Story

Rebekah’s Story

In July of 2008 Rebekah went away to church camp. When we arrived to pick her up she complained that she had an awful headache for the last two days she was there, and it will still there. We let it go for a few weeks, thinking she might have just been overtired etc. But after a few weeks of this headache we started to realize that maybe something was seriously wrong. This headache was never going away and none of the typical over the counter drugs were relieving it in any way. So we took her to the doctor. The doctor decided they should do a MRI, we got the results back immediately and they said she had a cyst in the middle of her brain. So they sent us to the neurosurgeon. He said that there was definitely a cyst, but it did not appear to be causing any problems, and that is was probably just a fluke that we found it. He decided to send her to the Neurologist the same day to see if he could figure out what might be causing her pain. The Neurologist thought that is might be a migraine, although she was not presenting the typical migraine symptoms. He also mentioned that maybe it was Lyme Disease because by this point she had more symptoms (sore throat, swollen glands, extreme exhaustion) but quickly dismissed it as he saw no rash which sometimes is a symptom. So he treated her with the IV meds for migraines and some prescription meds, which both provided no relief.

The next thing that was suggested was the pain clinic at the IWK,to see if they could figure out what might be causing her pain. They tried endlessly to figure out what was going on and treated her with drugs, physio etc. which has still given absolutely no relief. They said she is in chronic pain, they have no idea why and the best they can do is maybe get her to a level where she can manage the pain.

Rebekah is continuing to deteriorate, missing several to almost all days of school. I decided to do some research on my own on Lyme Disease and realized she was fitting allot of the symptoms. So I spoke with the Infectious Disease Specialist and they did not think she had the symptoms of Lyme, but had no other idea as to what was making her sick, so they decided to test her because she was in a Lyme known area of Nova Scotia. It came back negative which from what I know often does with the Elisa test. In Canada they will not send someone for the Western blot unless the Elisa comes back positive. I decided to contact the Canadian Lyme Foundation and see if they felt I was on the right track. I spoke with the representative for the area and told him our situation. He said she is definitely presenting the typical symptoms of Lyme Disease and that the fact that nothing has worked so far makes him even more suspicious of it being Lyme. He said we will not get any further with testing in Canada and recommended a doctor in Connecticut. Unfortunately making this trip to the U.S. cost us 10,000, but we knew we needed to take her so we could get some answers. We went to see Dr.Katz in Connecticut the week of March 16th. We received our bloodwork results back the following week and she had a positive test for Lyme disease. The doctor said it was unfortunate that we had to wait so long for a diagnosis as now she is considered late stage Lyme(chronic state) and it is going to take allot longer to treat her, but it is treatable. So she will start antibiotics soon, with 1 month of IV meds, and anywhere from 3 months to a year of oral antibiotics. We are thankful that we finally have a diagnosis and can start working towards getting her better. We will update weekly to let you know how treatment is working.

The Chute's