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Lyme Disease Message Board

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My 14-year-old daughter was diagnosed with Lyme in late July. The doctor decided to start with IV treatment because of the length of time she has been sick and because she has a lot of neurological symptoms. I removed several deer ticks from her 3-5 years ago and she has been having symptoms for more than a year. Before her symptoms started, she came down with shingles, unusual for a 13-year-old and in my mind probably a sign that her immune system was no longer able to battle the Lyme. Her earliest symptoms were sick, feverish feelings, followed by burning pain in her neck and upper back that doctors quickly attributed to hormones, heavy backpacks, etc. She became more seriously ill around Thanksgiving, developing constant visual disturbances (although her eyes are fine), dizziness, chills, tinnitis. A long the way she received diagnoses of CFS, FM, and POTS (Postural Orthostatic Tachycardia Syndrome). She had several negative Lyme tests in the late spring, which set us back in terms of figuring out what was going on and seeking treatment. Finally, I begged my doctor to send a Lyme test to Igenex and it was positive. Like you, she had a positive IgM and negative IgG, which I have read is common with Lyme.

Although she has only been receiving treatment for two weeks, we are feeling very hopeful that the doctors have finally figured out what is wrong and that she will fully recover. I hate that there is so much political controversy around Lyme diagnosis and treatment. I can certainly appreciate how frustrating it is for you right now as you are trying to make sense of all the information you are receiving.

Hi PICC line people,
It's been an up and down week for us. Last week-end, Sara seemed to be coming down with a cold. By Monday, it seemed clearly to be a herx with terrible head and chest pain. She seemed pretty good shape by Thurs night. Unfortunately, she missed all the play practices last week :( Now this week-end, she seems to be developing an allergic reaction to the Claforan. Last three doses, she's complained of chest pain, difficulty breathing, tickle in her throat, and tearing eyes. It's gotten worse each time, which is why it's taken up 3 times to finally "get it." Home health nurse said to stop the IVs and call the doctor first thing in the morning. So, I'll keep you posted on that.

My Western Blot IgM was negative, but the IgG was indeterminate. According to the 2005 Burrascano guidelines, however, it would be positive -- because I had positives on 41 and 18. I had lots of indeterminants on other bands. I have an appt on Nov 20 with a local LLMD. I also made at appt at the Lyme Evaluation program at Columbia Univ in December for neuropsych testing. I don't know if I should try (or even can) do anything before that. My symptoms are primarily neurological (memory, cognitive, restless legs, insomnia). I have some joint pain, especially knees. But mostly I feel pretty good most of the time, so it's hard to shift attention away from Sara to myself.

Shana and Marsha, I hope this week brings some improvement and hope for both of you. To Tee Dee and everyone else, hope you're doing well and look forward to hearing from you all sometime soon.


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