My daughter recently had a brain spect, ordered by a lyme dr, and it showd moderate to severe patchy hypoperfusion of the parietal, temporal, and frontal lobes as well as the basal ganglia. It said "non-specific."
Since 2007, my daughter has tested positive IgM western blot (negative IgG), and has had several reactive bands within the CDC guidelines. She was not treated in 07 or 08, because her pediatrician said it was probably false positive. My daughter was so chronically fatigured. The dr blamed the "commute" to school. She was wrong. In 2009, my daughter could hardly walk, because she had such bad knee and hip pain. The results came back positive again, and the orthopedist (who the incompetent pediatrician sent us to), said she needed hip surgery! His staff misread the lyme results as well. By now my daughter was unable to focus, concentrate or remember. She had severe scalp pain (which started in 2007 and is present to date) as well.
I finally got a doctor to give her antibiotics in 2009, but he only gave her a month's supply. The knee and hip pain vanished, but all the other symptoms continued. To date, the scalp pain and the chronic fatigue are so bad. My daughter can sleep till noon-1pm daily if she didn't have school. All summer that's what she did.
In 2010, she was diagnosed with hashimoto's and again tested positive for lyme. The dr we saw then put her on a plethora of meds, but she herxed. She was only able to stay on them for 3 weeks. After that we saw an infectious disease specialist. They are notoriously against lyme, so his position was that she did not have lyme despite all the positive results. We finally saw a lyme-literate MD, and he put her on antibiotics. She felt no better, and she developed candida. He ordered the brain spect.
He said that the hypoperfusion was caused by lyme encephalopathy, and the only cure would be IV ceftraxione. My daughter was too afraid to do the IV, plus our insurance wouldn't pay at the time, so he wanted to keep her on the oral antibiotics and retest again in November of this year. My daughter refused to take her antibiotics any longer, and although she has been on probiotics for about 3 yrs, it did not keep the candida at bay. I don't want to put her on diflucan since the rebound from that is terrible.
When I looked up hypoperfusion, it frightened me. I don't know what could be causing a lack of blood flow to the brain. Is it the spirochetes from lyme or damage they caused over the years? Her last lyme test showed a negative western blot IgM, but still 2 reactive bands, but another lab showed negative and 6 reactive bands (all new ones but none classified by the cdc as lyme). I spoke with Columbia Medical center in NY (we were on a wait list for 2 yrs), and they randomly called back a few days after the spect. They believe it is probably from the lyme since my daughter had positive western blots, and that IV would be best to reverse the hypoperfusion. However, since she will not be 18 untll January, they cannot see her.
Is there anything else that could cause the hypoperfusion she has, and if so what? Also, what is the treatment for this? Could the scalp pain (tenderness of the hair follicles) be caused by this?
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