Cassi

What Texas conference?

Laure, How Awesome, I am so excited for you. My dd9 was doing great for 6 months, but has now regressed. What is ART and do you mind me asking the name of your Doctor?

My daughter sees Dr. Jones in Connecticut and I have recently discovered I have lyme as well. I live in Texas and there are no lyme docs in the state. I thought that since I already fly to Connecticut for my daughter, I would schedule an appointment for myself in the area. Can anyone refer a doctor in the Connecticut or New York area?

I talked with Dr. Schaller yesterday and he said he could see my dd9 next week. Does anyone have him as a Doctor or have heard anything about him?

Has anyone tried homeopathy, functional medicine, or gfcfsf diets to treat PANDAS? If so, was it successul?

I live in Houston also and I'm currently looking to try to find a place for my dd9 to get IVIG done as well. Someone mentioned to me trying to do the IVIG at home. With a doctors order, you would receive your medications delivered to your door and have a home health nurse administer your medications and stay through the entire infusion to watch for possible side effects. Amerita is one infusion company that offers IVIG for in home therapy. Has anyone done this before, and if so, was it succeful?

Did she have rages prior to getting the IVIG?

Hi Texascatholic, I live in houston and am thinking about getting the IGENEX test done for my dd8 as well. There are no doctors that I know of either in Texas. As it looks like we do have to travel, can anyone recommend a good lyme doctor - even in another state.

We live in Houston and my daughter's doc is Dr. T, treated via the phone. He is recommending finding a place in Texas to do the IVIG instead of flying to New York to get it done. Has anyone done this before? I'm not sure how to go about doing this. Any suggestions? Thanks, Cassi

My dd8 has myco p and I've read a lot of parents talking about getting the lyme testing from Igenex. She had the western blot done by quest and it came back negative. I went to the Igenex web site and was so confused on what test to order. There was the basic lyme panel, complete lyme panel, Initial lyme Panel & complete Co-Infection Panel. Which one do I order? I also couldn't find the pricing of the test either. Can anyone lead me into the right direction? Thanks, Cassi

How is she doing today?

My daughter had low titers and we did the cunningham study anyways. Her scores came back really high. I called Dr. Trifelitti and he put her on abx and ordered some other blood work - one of the labs was mycoplasma infection. It came back really high and Dr. T said this what was causing her symptoms and not strep. So my dd had PITANDS. Other things like mycoplasma and lyme can cause the same symptoms as strep. Doctors usually test for strep first because it's the most common. See if you can get the blood work for mycoplasma and the lyme western blot

How is your dd behavior post IVIG? Has there been any improvement after the IVIG?

My dd8 lab results for mycoplasma just came back and it showed her IgG was 3.27. Her Cam Kinase level is 181 & her ASO & Anti-DNAseB levels show in the normal range. What does it mean if she has a mycoplasma infection? Can mycoplasma also cause PANDAS? She did the lab work after being on 250 mg of zithromax for 7 days. Does it mean that she currently has pneumonia or does it mean she had pneumonia at some point? If anyone knows more details about mycoplasma and could share the information with me, I would greatly appreciate it.