It makes me so angry when I hear doctors say you don't want to go to school, or it's depression, or you want attention.
My daughter's biggest fear is that she will go on rocehin and perhaps feel better, but once she goes off it, she will feel badly again. Our LLMD said the only way to reverse her encephalopathy is with rocephin, however, I've read that at this stage it may not work at all.
We are going to see the soviet woman (she was a dr in the Georgia in the USSR, but is not licensed here) tomorrow as long as the snow stays away! She is in Woodbury, CT. I don't know where you live, but if it is a viable location that you can get to, I can send you a private message with her information.
I hope and pray you get better!
@ medavinci. We have been through much of what you have, although I didn't spend as much time chasing CDC/IDSA treatments. Treating the coinfections is as important (or more so) as treating lyme.
Herbals have worked well for us, especially the anti-inflammatory herb japanese knotweed. It works well for brain inflammation, as apparently does kudzu (according to Stephen Buhner). Buhner's herbal protocols can be used concomitantly with abx and for our daughter, cryptolepis is working as well as malarone did. Educate yourself on his protocols and treatment paradigms. They are different and very effective.
Healing Lyme coinfections: Mycoplasma and bartonella.
2008 - insect bite (bruise-like rash)
2010 - Dx ADHD, motor/vocal tic disorder, high functioning aspergers, motor delay, symptoms of PANS/PANDAS autoimmune neurological syndrome.
Jan 2011 – bartonella pain symptoms begin.
June 2011 - Igenex PCR positive bartonella, IND lyme. CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, herbal, homeopathic treatment.
April 2013 - Weaned from abx treatment. Continuing wth Buhner, Byron White, methylation/detox protocols, Terry Wahls gf/cf/sf diet. Minimizing EMF exposure
Dec 2013 – Symptoms 98% resolved. ANA titers negative.
Post Edited (rowingmom) : 2/11/2014 10:51:39 AM (GMT-7)