SHE'S EATING! Omg, SHE'S EATING! ;)

[Dedee]

Whoo-hoo. So glad to hear your wonderful news. We use Mino as well. We are treating Lyme, Myco, and bartonella. It crosses the BBB so works better than some of the other antibiotics. I pray you continue to see improvement.

 

Dedee

[BeeRae22]

Thanks everyone... This is still so exciting!!! Yesterday she ate a kid's Subway sandwich and almost ate the whole thing!!! And then I took her to the store (to get more if the chocolate cake!) and you should've seen her.... "I want this" "I want to try that" -- I had to drag her out of there!!!! What music to my tired ears! <3 I was really starting to think this was never going to happen.... I was truly losing hope. In fact, Friday night I had a bit if a breakdown

 

Keep the faith everyone. I know it's hard-- believe me. I am so thankful to everyone on this board

[qannie47]

Smiling

[rowingmom]

Isn't it crazy how inflammation and infection can mess with our children's brains?

 

I am so glad that you have found some respite and healing!.

[Rachel]

Keep smiling and enjoy the victory!

[T_Anna]

So happy for you. Do you think the lack of appetite was Bartonella?

 

Ds16 is doing better and started summer school, but he hardly eats. He's 5'7" and weighs hardly 100 lbs dripping wet.

 

We took minocycline for months, but did not get this turnaround. We will try rifampin next.

 

Thanks,

T.Anna

[BeeRae22]

Dd's issue was extreme ocd/fear of choking and swallowing.... Her appetite was definately decreased, but primarily because she was completely disgusted and turned off by food- the taste, smell, texture, etc. She did express hunger, but wouldn't and couldn't eat. We're still not honestly sure what her trigger infection is/was. She had elevated IGG & IGM for mycoplasma pneumonia, and we suspect bartonella based on her symptoms, but haven't found it yet.

 

On Day 12 of minocycline it was like a switch went off.... She is eating again, and is still going-- it's been 1 week now! She still has hang ups about certain foods, but she tries new things almost every day and is doing great. I've heard other people that minocycline worked for, but for ocd related food issues, not necessarily appetite issues. I know this probably doesn't help, I'm sorry

[T_Anna]

Called the NP at the LLMD. She said that soemtes happens, such a shame because he's so skinny already : /

 

Has anyone found a supplement or script that helps??

 

T.Anna

[searching_for_help]

beeae22 - You mentioned your dd started eating on day 12. I was just curious - how were things from day 1 to day 12? Any herxing or worsening of symptoms? Or did things gradually improve?

 

Just curious. Our dd started minocycline 6 days ago. We are actually seeing a worsening in symptoms, but she tends to herx on new meds. We're still holding out hope, but getting very tired of all of this. It's actually been a bit harder to get her to eat the last few days.

 

Hope your dd continues to improve!