Bartonella and getting discouraged!

[adkmom]

To update...we finally took ds4 to Dr. J last week. Went well but expected all the changes that he made (based on what I've been reading on the forum!) He strongly suspects Bartonella and ordered a test through Specialty labs (which is now under Quest - FYI) so will be covered by insurance. He thinks Bartonella because his neuropsych symptoms outweigh the physical symptoms and we're dealing with aggression issues and LOTS of impulsivity.

 

So, still on Azithro, Cefdinir but added Bactrim to target Bartonella. Start Tindamax every weekend starting next weekend. (will be an interesting Easter) He said he would hope to see some improvement in a few weeks and symtoms could initially stay same or get worse. They've gotten WORSE!!! It's scary, I almost dread giving the Bactrim because it seems to bring out this really dark, mean, angry, aggressive, oppositional side! It's terrible. He's been on it for a week now. The aggression/rage don't last long, but have bursts of it alllllll day long. And the opposition is terrible. Ran from me in a parking lot and yelled "what are you going to do about it if I don't come!" didn't even sound like my kid...

 

Does anyone else experience this behavioral stuff when treating Bartonella? Did it last long? Anything help? It doesn't seem to be herx. Just an increase in those symptoms. His tics haven't started up.

 

I just keep saying to myself...this is the disease...he doesn't need psych meds...It can get so tiring! Sorry I'm really VENTING.

 

darlene

[LNN]

We had a great response to bactrim but have had similar worsening with other changes. Improvements in some respects but other things that had been gone for a long time came back - along with all the PTSD that comes with it. Everything is slowly settling down again, but you're always holding your breath. Detox is my big thing right now and it does seem to help. Your other option is to call the office on Monday and discuss lowering dosage or some other way to be less aggressive. It's one thing to ask a body to tough it out but not to the point a child is at risk when he darts away. You may also want to see if you can postpone the tindamax until the weekend after Easter. It could be too stressful for everyone. No medals for masochism. Take it only as fast as you can all bear.

[ShaesMom]

I just keep saying to myself...this is the disease...he doesn't need psych meds...It can get so tiring! Sorry I'm really VENTING.

 

We are starting this possible Lyme's journey so I can't offer much in the form of advice about Bartonella. I have lots of experiene with the out of control raging these days though. Your quote above is the same exact thing I have been saying to myself several times a day for weeks now. You are right - it is exhausting. My dd's rages always start at 10pm as we are headed to bed and can last for two hours. No one is getting any sleep.

 

Hang in there and take the time to really enjoy the good moments. Sending hugs and prayers your way!

[adkmom]

Thanks Ladies. I haven't tried any detox strategies. So maybe that's an option. It's so hard seeing the symptoms worsen and then trying to keep telling yourself, he's actually getting better. What a messed up disease this is! thanks again. i'd truly be lost without the support of everone on this board. what a blessing you all are

[laure]

Hi Darlene,

Same same and same here! Bactrim added post Dr. J visit. OCD returned big time, we're 2 1/2 weeks out now...but she was on the decline before our visit, this is just about three times as bad. One thing I can say is we are doing lots of detox, and she is a pleasant relatively happy OCD kid. We are not fighting her OCD at all either though, so those battles are not happening. We do 10 bentonite clay caps after school, 10 BurBur drops morning and night, and just started Olive Leaf Extract for yeast. Also give one advil in the morning or whenever she is unbearable. Some people swear by 5HTP, but this is in her multi-vitamin. This is all just shot in the dark stuff from this forum, but her mood is great, and not too much struggling with depression, frustration, just lots of hand washing and not touching stuff, not letting us touch stuff, etc. We are going to tough it out and see what happens...SF mom says up to 12 weeks. We also see Dr. B on Tuesday, so see if he changes the zith or Augmentin. I'll let you know. Hang in there!

Laura

[adkmom]

Hi Darlene,

Same same and same here! Bactrim added post Dr. J visit. OCD returned big time, we're 2 1/2 weeks out now...but she was on the decline before our visit, this is just about three times as bad. One thing I can say is we are doing lots of detox, and she is a pleasant relatively happy OCD kid. We are not fighting her OCD at all either though, so those battles are not happening. We do 10 bentonite clay caps after school, 10 BurBur drops morning and night, and just started Olive Leaf Extract for yeast. Also give one advil in the morning or whenever she is unbearable. Some people swear by 5HTP, but this is in her multi-vitamin. This is all just shot in the dark stuff from this forum, but her mood is great, and not too much struggling with depression, frustration, just lots of hand washing and not touching stuff, not letting us touch stuff, etc. We are going to tough it out and see what happens...SF mom says up to 12 weeks. We also see Dr. B on Tuesday, so see if he changes the zith or Augmentin. I'll let you know. Hang in there!

Laura

 

Thanks Laura. Do you give her meds all in the a.m.? I give Colin all 3 in the a.m. and then 1 at night. wondering if it makes any difference, breaking it up? And did Tindamax make it even worse? We start that next weekend. (I really need to prepare myself.)

[ptcgirl]

For us, the tindamax seems to really create pain symptoms not so much the rage, OCD stuff. Strangely she never had any aches and pains before the antibiotics. The first couple of weekends she couldn't get out of bed due to so much chest cavity pain. We lowered the dose of tindamax those weekends. She now, a couple od months out, seems to do okay with the tindamax and we give the full dosage. Good luck! Hang in there. You are not alone in this.

[ptcgirl]

For us, the tindamax seems to really create pain symptoms not so much the rage, OCD stuff. Strangely she never had any aches and pains before the antibiotics. The first couple of weekends she couldn't get out of bed due to so much chest cavity pain. We lowered the dose of tindamax those weekends. She now, a couple od months out, seems to do okay with the tindamax and we give the full dosage. Good luck! Hang in there. You are not alone in this.

[momaine]

We're treating Bartonella in my dd too and she really herxes from the Tindamax. (worse ocd and anger/frustration) The worst two days for her are the two days following the two days that she takes it. She's been being treated for 10 weeks and the first four showed improvement but the last six have been very difficult. Hangning in there hoping we see positive changes soon. Doing lots of detox which has helped a little too.