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Posted

What an amazing story. I'm so hopeful that "mainstream medicine" will start to ask the right questions. Instead of diagnosing a child as bipolar - again and again. Ask "why is he bipolar?" You don't just wake up one day at age 4 with psychosis. Something had to happen. Some sort of insult to the system.

Posted

Absolutely, says the mom who was told her son suddenly was bipolar w/ aspergers as a side dish. Funny how it happened so suddenly after flu mist. He was not tested for an infection for one year. Funny how it all went away after antibiotics and ivig.

Posted (edited)

I wonder if the patient's older sister had Lyme underlying? Although she also had a dramatic response to just the Valtrex.


"During the course of his treatment, the patient’s older sister had developed CFS, characterized by fatigue, excessive sleep, mental "fogging", low motivation, muscle aches, and low mood. An 8 week trial of escitalopram at 20 mg/day made no significant change in her symptoms. Laboratory studies showed elevated viral immunoglobulin titers and low natural killer cell count. Within 6 weeks of starting valacyclovir (Valtrex, GlaxoSmithKline, Philadelphia) therapy (500 mg BID for 2 weeks, then 1000 mg BID), her symptoms began to abate. She was able to return to full-time school and part-time work in three months. Since the purported viral agent responsible for CFS, as well as its mechanism of transmission, is unknown, the possibility of horizontal transmission within the family was considered.

On laboratory testing, the index patient indeed showed results suggestive of CFS, including low CD56 natural killer cell (NK) count [25,26], as his sister had. A trial of valacyclovir was therefore considered.

After explaining the risks and side effects of valacyclovir, as well as the speculative nature of the treatment, the patient assented and the parents consented to a trial of valacyclovir starting at 500 mg BID. Within 6 weeks, noticeable improvement was seen in the patient’s mood and behavior. When the valacyclovir dose was increased to 1000 mg BID, the patient experienced a dramatic improvement in his symptoms. His mood and behavior dramatically improved. He became much more social, seeking the company of his family, joking, and conversing. As the parents describe, "It was like an awakening…now he is quick to apologize when he’s been disrespectful, rude, or demanding…he developed a constant hunger for knowledge and a desire to understand everything and everyone around him". He became kind, helpful with household activities, and courteous. The patient, for the first time, greeted his psychiatrist warmly, rather than with surly growls or hiding under the hood of his jacket."

Edited by eamom
Posted

Our daughter has PANDAS for 1 year, but has become significantly worse the past few months. We just did IVIG 2 weeks ago, but now we found out that she is positive for Lyme and Anaplasma. Does anyone have any suggestions on what has helped for the Lyme for their child?

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