This is not working....

[lmkmip67]

Thanks, everyone. It is so hard to see them struggle so much. And I lose my patience too, many times. I feel like I yell too much, yet he feels so horrible. i feel I must be a horrible parent to lose my patience sometimes. It is just so hard. I am making those appointments today, so at least I will feel like we are taking a next step. I am thinking the Lyme issue is next...

[tpotter]

Thanks, I tried to PM you but it said you couldn't get messages.

 

 

Sorry...PM was full. I've PM'd you.

[cobbiemommy]

The other component I was thinking of besides Bartonella is Mold. Have you read any of Dr. Shoemaker's books? There are some lab tests for this as well. I believe he is located in Maryland. Also, Lyme treatment and mold toxicity seem to go hand in hand. My son did well after IVIG for six weeks and then crashed because of the Bartonella. Sometimes, when you wake up the immune system the symptoms really ramp up and look worse. DS, tested inconclusive for Bart/Babesia, but he had other markers that were positive for both items. Has your son had his VEGF checked, was it high? How about Eosinphil Cationic Protein? VEGF can be a marker for Bartonella. Eosinphil Cationic Protein can be a marker for Babesia.

 

I posted earlier about OCD problems, but we are so much better than a year ago after treating for Lyme/Bartonella.

 

Cobbie

[philamom]

My daughter's Bartonella test was negative with Igenex but positive with another lab. She clearly has Bartonella!

[lmkmip67]

Thanks to everyone for the responses. I am going to take some notes and ask questions. I am waiting on an appointment with a local Lyme doctor that seems like she will look into some of these issues. We will start there, anyway. I do have a phone consult with Dr. B on Monday evening. I am looking forward to getting his thoughts on some of this. He always seems very interested and I am thankful for that. I feel any case that doesn't follow his expected outcome, is also helpful to later patients of his. I am sorry I don't post a lot in may threads. I am so busy with my own business and juggling Ian's hockey schedule (only thing he feels good about himself with), 3rd grade homework (they have a ton and he fights it nightly, we often spend up to 2 hours getting it done with tantrums,etc). I will update as I can only assume it might be helpful to others in their journey. I am thinking we are seeing some lyme issues. I live in the woods of New England. I have no doubt it is possible even with negative test results. So we will explore this next, along with bringing a neurologist on board and a child psychologist for the OCD. We are going to explore ERP therapy and see how it goes. Just PANDAS treatment is not helping, so time to explore!