okrad

This is very good information! I will look that up. I heard that it is VERY hard to get Lyme testing. Is that true?

Hi. It was at a teaching hospital. It was karyotyoing and something else. It showed a long duplication which perhaps made me susceptible to the PANDAS

I got PANDAS at 14. I am now mid life. I also had eating troubles, both over and then under. I used a lot of natural thiungs like Olive Leaf. Olive Leaf helped me so much, but I cannot take it now because I am sensitized. I also took grapefruit seed and that helps a lot. Oregeno oil, too. I could not afford a Dr so I had to do it natural. My blood work was bad before I started with low counts but it is much better now. I also work out a lot. I had hyper so I walked everywhere. It can get better. It is hard, but the hardest is not knowing. My family was bad off because Dr said they were just bad parents nad I was crazy. This was the 80's of course. I can answer any questions. I hope your child is doing better!!

I believe I had PANDAS. Overnight change from normal to 100% disabled after getting sick. I do a lot of detoxing and it has helped me a lot. Mostly jucing and Vit C and suanas and coQ10, and cilantro. I have heavy metals too which happened because I cannot eat very well so I ate too much brown rice which is very high in arsenic.

Hello I am midage now, but had a severe lifealtering event at 14 which I now believe to have been PANDAS. I was normal and healthy and happy and then I got a bug and was sick. In less than a month I was full blown anorexia, OCD, not friends, selective mutism, dropped out of school, stopped gymanstics and almost died. I never recovered. I have never had one day of normal eating since then. It took me 13 years to get through Freshman year at College because I refused to give up. I have gastro troubles, sensory troubles, OCD and so many other troubles that I got Dxed autism twice but that was refuted later. Heart beats oddly (dxed), migrains, neuropathy hyperactivity, and many other issues. Then one Dr had the nerve to say it was all mental. But it happened overnight. Literally. I have had a horrific life and Drs have told my parents and myself so many things. I am here alive because I was blessed to be married once which means I have kids (grown up and HEALTHY!!) so I have a lot of joy despite having my life robbed. It was robbed not by the virus that hit me, but hte medical community who told me I was mentally ill, personality disorders, ignoring all the neuro. So they did not rob me of my whole life. I also have a religious life that sustains me and a fmaily that loves me, so I am grateful! I hope to learn more and also help others going through it now and also to find Drs near me that might be able to help me though it is very late in the game. I do a LOT of jucing and detoxing and almost everything gets better exept the food and sensory, the neuro things. I had an accident, so they got worse. What tests have shown: CMV, EBV, Herpes 6, Genetic duplication (which may have left me suceptible) over 8 genes, one of which codes for Neuron (PACSIN 1),