So guilty for ignoring this!

AML: no guilt allowed! Had I known how to follow up on a lymphocytoma on my son's ear in Dec. 2012, we could have nipped this in the bud. Instead, I settled for the doc's 'spider bite' diagnosis and it was almost a year later when we found it was LD.

glad she's doing better!

Man, so frustrated on your behalf about the PANDAS/PANS. And really glad to hear that Galaxy is really good--I would like to have my son tested with them but their website is so slick and I'm very cynical, lol!

Hang in there! Still no guilt allowed!!!

Ahh, bartonella rashes. Please don't feel hopeless. I'm glad your daughter isn't feeling too bad. I second what Traveler has said. It is not that your daughter can't be treated. It just might mean at this time a more affordable option would be better like natural treatments.

A lot on here do Buhners and he has a really informative book. There is also zhangs, cowden, jernigans - again just to name a few.

*I have no affiliation with those weblinks/companies*

I'm also worried about herxs and drug reactions. After a year of homeschooling-herself, my husband and I work full time. Or I used to at least. She taught herself geometry and algebra 2 in eighth grade!

In three weeks she starts a very rigorous program. It's an early college treatment, so some of her classes will be college courses, even in ninth grade. When she graduates from high school, she'll have an associates degree. Major time saver for her and money saver for me.

The real reason she wants to do it is the class size is very small. Usually 50-60 students in each graduating class. These kids are all highly motivated, and the principle told me they're all weird in their on way. My daughter thinks being weird is a good thing! Also, the students are all very accepting of others differences, since they all have their own.

But still, if she gets sick and misses class it could be very bad.

I look at her and hate the thought of making her feel bad, but I can't just leave the bartonella to continue to spread unchecked. And we don't know yet what else she has.

Wow! Some similarities. My daughter was shy but otherwise normal until fourth grade-2010.

Then she developed a weird whole body cough. It went on for months and nobody could figure it out. Finally her ENT decided to take her tonsils out. He had no idea if it would work, he just couldn't think of anything else to do. It was a miracle! The cough was gone overnight! In hind site, we wonder if that was a tic. I'll never know.

She had a great fifth grade year and won the science, math, language arts, French and overall character awards. She was called up so often it got embarrassing!

Sixth grade was at a magnet school in a program for highly gifted kids. She did great. All A's.

Seventh grade started OK, but by Jan/Feb we noticed some weird things. She suddenly had to have "her" chair or she couldn't eat. I thought she was acting out and told her to sit at another chair or go to her room.

Then one night I tried to gently comb her hair. It was straight until puberty, then turned into corkscrew curls. She didn't take care of it and ended up with huge matts. I used a huge amount of conditioner and was as gentle as I could be. She freaked out, screaming, kicking, the works.

I sent her to take a shower to wash out the conditioner. When she came back she sounded like a croupy baby. She couldn't talk, and was struggling to breath. I took her to the ER. The gave her Ativan and she was fine. It was a panic attack.

Then we noticed her grades. Suddenly she's making D's! She said she couldn't focus, and couldn't remember to do her homework or to turn it in.

I went through her room and realized her handwriting was illegible. She said she couldn't write any better, unless it was backwards or upside down. Then it perfectly clear. One of her teachers contacted us to tell us she was taking all her notes upside down and backwards.

She started acting very fidgety, hand flapping, flailing her arms into things. She had a neuropsych evaluation and she was very difficult to test. She was knocking things of the walls and almost stabbing herself in the eye with her pencil. Her IQ was still 99th percentile.

The neuropsychologist recommended Lexapro and it helped get through the year. She couldn't go into the cafeteria because of the noise, so she'd go to the library and hide and eat. Her teachers based her grades on her end of year tests, which was a blessing. She finished the year with A's and B's. She had never gotten a B on a report card, much less the D's she got second and third quarters.

We decided to let her stay home this school year. No noisy kids, no big fluorescent lights, no common core "group work". She didn't work well with others.

At home, she'd turn off the computer router because the noise was irritating. I couldn't tell it made a noise at all!

She did occupational therapy and that helped a lot. She finished that last December.

Another great resource we have here is very unique. It's called ICan house, and it provides group curriculum (same sex groups) to help with social and life skills. Most of the kids are on the autism spectrum, but a diagnosis is not required.

They have movie nights, hang out nights, and outings to fun places monthly. These are co-ed. Right now she has a boy asking her out, but she still thinks dating is stupid. Thank goodness! Not that I'd let her at 14, but it's a fight I don't have to have.

I thought we'd have to stop letting her go because we are cutting every expense we can. My boys lost some activities, and so did she, but this one hurt me the most. It is SO good for her. I was shocked when they said she could continue even though I can't pay right now. Made me cry!

This is the kind of resource all communities should have. The founder is working on franchising it. So hopefully it will have more locations sometime.

I hope she is able to tolerate noise and fluorescent lights this year. She works on Saturdays at my hospital, and she tells me the lights are irritating, but she manages to do her job.

If you met her now, you might suspect she is Asperger's. I never would have thought that when she was younger. She informed me, in the neurologists (different one, PANS believer) that in the DSM 5, Asperger's is no longer a diagnosis, and that "Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)."

You should have seen the neurologist face. He told her that not only was she well read, she was up to date. This was June. The DSM 5 wasn't released until May. I still have a hard time with this. She never had any language or developmental delays. She did, and still does, have difficulty making friends.

So who knows? I could get the diagnosis is I wanted, but I really don't see any benefit for her right now.

It will be interesting to see what happens when the bartonella is treated!

You guys are smarter than the infectious disease doc my neurologist referred me too. Not that that is surprising. I showed him this pic and he said it was weird but he has no idea what it is. I told him, and told him I had it confirmed by Ed Breitschwerdt, who is a vet professor but also a professor at Duke medical school, his jaw dropped. How can bartonella do that?

So maybe he'll know it if he sees it again. But he'll test through Labcorp, so I probably did no good at all.