Hi, I've been gone and crazy busy but here's where things stand - Last week my son, age 8, called Tom for now, was seen by a neurologist who did not seem to disbelive the Lyme diagnosis
I have had to make based on CDC standards. They were startled that it had not been reported to the CDC. (Is there any hope this is a sensible trend?)
The term encephalopathy was used to possibly explain the vision and physical symptoms. The emotional/behavioral symptoms are still being refered to as psychological.
That dr showed me that a prescription for Amoxicillin had been ordered days before by the first ID, but I wasn't notified! Only 14 days though. We were given a referal to a new ID and we go tomorrow. I would like to know -
Names of specific tests like the ??57 or what it is, and also what body chemistry might reasonably be expected to be out of whack. (Low nutrient levels, etc., high this that or the other.)
My hope is to have a list of tests which could reasonably be expected to shed light on the range of issues in Tom's body. It does sound like Bartonella may be one of the problems. I also plan to ask for extended antibiotics, and possibly to change to something known to cross the brain blood barrier.
He does seem to be herxing to the Amoxi which makes me wonder - Lyme both within and out of the brain? Doesn't seem like too unusual a possibility.
Is there any sense in asking for a 3rd Lyme test? I just went through 8 years of his records on cd and found no specifics on the tests - no bands, just "neg". I'll ask for actual copies - is there a proper phrasing for that request? What comes to mind is not proper.
Besides losing peripheral vision in one eye for 5 weeks, Tom is having body temp fluctuations (95.5 -102), night sweats, random smalll dot rashes, mood swings, rage,opositional behavior, declining co-ordination, lack of focus, even a change in his voice which is sure not puberty. His mood does come accross like a teenager though.
We havn't done any homework lately to compare his skills with. There's constipation, loss of appetite, random pains, low pain thresh-hold, frequent stomach aches, headaches, stiff and sore neck, back pains, and dark circles under his eyes regardless of sleep pattern. He has had some insomnia lately though.
I'd really love to have some specific requests to present and I know this fountain of knowledge can lead me to great info faster than a speeding mouse.
Thanks for any help you can give. 