Mama2Alex

[FallingApart]

Mama2Alex, I just saw your post that you said you may have moved beyond Bartonella with your child. This gives me great hope! That post rings very true with how bad things are and get at our house so to see someone who may have moved past it is a wonderful thing! Can you tell us if your child was as hard hit as the rest of ours? And what state is he in now? I'm sorry if it is hard for you to recap, it is just a ray of hope for the rest of us!

[mama2alex]

Didn't mean to mislead anyone. I was responding specifically to a question about suicide threats and violent behavior, and was just saying that I think we've finally moved beyond THAT. I don't think we're done with Bartonella yet, but that and other improvements show us we're definitely making progress.

 

To recap, he had a sudden onset of OCD and severe separation anxiety in June '09 while sick with his 6th bout of pneumonia. At his worst he was pulling out knives, hitting me, threatening to run in the street or jump out of the car, brushing off bombs he thought were attached to his body, isolating from friends (he's extrememly outgoing) and was absolutely terrified that there was an intruder in our house - 24 hours a day for over 7 months straight. He also missed a good portion of the 3rd grade, mostly due to separation anxiety, but also due to physical illness. So yes, it was bad. First HD-IVIG was Dec. '09 - significant improvement by 7 weeks post, but lost all gains after a virus hit him in May '10. Second HD-IVIG was in July "10 - never saw any change with this, but it may have helped in supporting the Lyme treatment when we started it. We'll never know for sure. We started Lyme/Bartonella treatment in Sept '10 and saw good progress in the first 12 weeks. We still occasionally see slight concerns over someone having broken in while we were out, but I think this is herxing. We also struggled with separation anxiety in 4th grade, but it was better. All in all, he's a MUCH happier boy, but still struggles with some obsessions and rigid thinking. Hoping 5th grade brings more healing and happiness.

 

Sorry I don't have the "ultimate" news for you, but we are definitely moving in the right direction and all much happier with our day to day lives!

 

I believe this is congenital, so I don't have any expectations that getting him fully well will take less than two years, at a minimum.

[mama2alex]

Oops! I double posted somehow.

Edited July 17, 2011 by mama2alex

[FallingApart]

Thank you so much for your story! That is very helpful!

 

Your story sounds a lot like ours, but ours happened at 3 years of age and was sudden onset as well.

 

What protocol did you mainly use or did you switch around regularly?

 

Thanks so much!

[cobbiemommy]

What medicines did you use for Bart?

[mama2alex]

He was on Azith (250 then 500mg) for over a year, which really didn't do anything. When we started Lyme/Bartonella treatment, we added Rifamptin, then Alinia, later they rotated in things like Cedax, BEG spray, Cipro, Bactrim and Septra. He's on supplements for deficiencies such as D and glutathione, lots of detox support and they've also rotated in some herbal medications along the way. We feel like he's hit a plateau in his treatment, so we are looking into things like mold and KPU/HPU at this point.