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my 12 y.o. is being treated for bartonella. we have her on bactrim and mino. we did not see much improvement. actually she looked a bit worse during the day on the stuff. the psychiatrist put her on prozac, that seemed to be helping but now her OCD is spiraling out of control. we added trazadone in for sleep. has anyone had any experience with this making their child's OCD worse? thanks so much.

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My ds15 has Bartonella (and Lyme and PANS). He has been on Azithromycin and Rifampin for @ 9 months. We needed to start him on psychiatric medication to help support him during the treatment phase for Bartonella. His Bartonella symptoms are agitation, anxiety, racing thoughts, and and increase in other PANS symptoms such as his OCD and intrusive thoughts. I had a few thoughts as I read your post:

 

1). Bartonella looks a lot like PANDAS (PANS). We are now able to tell when our son's OCD and intrusive thoughts are PANDAS symptoms and when they are a Bartonella flare up. When the Bartonella kicks in the OCD gets out of control and is complicated by racing thoughts and agitation. His psychiatric symptoms are much more intense and complex with Bartonella flares. With that said, it is important to keep both the PANS and the Bartonella in mind when choosing antibiotics. It might be helpful to you to determine if your child might have PANDAS (PANS) as well as Bartonella (maybe she does and you didn't mention it here). As I mentioned, our son is getting Rifampin for his Bartonella. However, Rifampin must be paired with another antibiotic to prevent resistance. I mention this because it makes the point about keeping PANDAS (PANS) in mind when choosing antibiotics. We always choose the second antibiotic for its' ability to treat not only Bartonella but also protect against PANDAS (PANS) flare-ups. In this regard, Azithromycin is dong a very good job.

 

Recently our son had an increase in OCD and was also very "foggy headed" to the point of not being able to keep his thoughts straight. He was on Rifampin and Clindamycin a the time. We switched the Clindamycin to Azithromycin and the OCD settled back down and his thinking cleared up remarkably.

 

2). About the psychiatric medications: Prosac (an SSRI) and Trazadone (an antidepressant) can trigger hypomania and/or mania in some children who have an underlying genetic predisposition. It is important to determine if any up-swing in OCD (and other other psychiatric symptoms) are related to overstimulation from the SSRI or the antidepressant medication. In our son's case, we avoided SSRI's and antidepressants altogether due to a history of bipolar in the extended family. Additionally, children with PANDAS (PANS) do not tolerate SSRI's very well for some reason. (Another reason to work up for PANS.) Our son was put on Topamax to decrease the excitability in the brain that is caused by the Lyme, Bartonella, and the PANDAS. He did not need a very high dose. In fact, as we increased the Topamax from the starting dose to the target dose he (paradoxically) became more agitated. There was a very narrow window of tolerance where he would have the medication benefits without unwanted side effects. PANS and Lyme and Bartonella kids have this issue with psychiatric medications - some more than others. Our son is very drug sensitive. The Topamax is helpful with intrusive thoughts. That said, the best medication for intrusive thoughts and other OCD symptoms due to PANDAS, Lyme, or Bartonella is the right antibiotic over time and a supportive environment. The psychiatric medication will at best "contain" psychiatric symptoms at a manageable level.

 

Our son also takes Lyrica at bedtime to help with the deeper stage of sleep needed to "reboot" the immune system. He was also having sleep issues and the Lyrica has been very beneficial for that all around. Recently we added a very low dose of Tenex. This is an old blood pressure medication that the VA "accidentally" found helped to decrease the intrusive thoughts and distractibility in their soldiers who had post traumatic stress. We give our son 1/4 of a typical dose after school. You might be interested to know that Tenex (Guanfacine) is the actual ingredient in Intuniv - just a shorter acting version which works for our son as he is so drug sensitive.

 

3). That brings me to the last bit of information that I have to offer: Check out the ILADS website and download (for $15.00) the 2011 conference presentation titled "Lyme Co-infections and other Opportunistic Groupies." (I hope I have the title right - I remember the 'opportunistic groupies' phrase for certain.) The first quarter of the presentation covers Bartonella and it is excellent. It mentions that when treating Bartonella it is essential to have a therapeutic environment for the patient due to the intensity of the psychiatric symptoms which often get worse before they get better. That would be supportive family, teachers, school, doctors etc. Some patients have required hospitalization due to the nature of their psychiatric symptoms - but those are the worst cases. I mention this last bit just to let you know that it is not unusual to be dealing with terrible psychiatric issues when trying to treat Bartonella.

 

Kids with Bartonella (and/or PANS) are very difficult to medicate for psychiatric issues. They need individualized approaches from health care providers who understand the impact of these illness on the developing brain. Usually the psychiatric symptoms associated with Bartonella have to due with increased neurotransmitter excitability from the inflammation. I hope this is helpful and I wish you the best.

Edited by RNmom
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RN MOM. Thanks so much. We started with the PANDAS, because of her Cam kinase score of 166. We tried the bialxin, azith and rafampkin. Dr. B. who was treating her for PANDAS, sent us to a lyme specialist when he discovered she had bartonella and lyme. I think he was perplexed by her weird symptoms. He thought it sounded more like bartonella was her problem. Anyway, how do you know for sure a child has PANDAS? I am going in circles. I am treating her for the bartonella and lyme, since there is a blood test that said she was positive. There was no blood test saying she was positive for PANDAS. She is such a mess right now. We started with the prozac and she looked pretty good, then added the trazadone and she is wild, and her OCD is horrible. I am not sure if its the trazadone or the prozac at too high a dose. But at a lower dose, it does nothing for her OCD. Ugh!!! It is crazy. What doctor do you go to that deals with your child'S PANDAS AND LYME AT THE SAME TIME. I am going to supposedly the best lyme doctor in the country and he seems to be totally lost with my child and her symptoms. Sorry if this letter seems scattered. It's just how life is over here at the moment.

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RN MOM. Thanks so much. We started with the PANDAS, because of her Cam kinase score of 166. We tried the bialxin, azith and rafampkin. Dr. B. who was treating her for PANDAS, sent us to a lyme specialist when he discovered she had bartonella and lyme. I think he was perplexed by her weird symptoms. He thought it sounded more like bartonella was her problem. Anyway, how do you know for sure a child has PANDAS? I am going in circles. I am treating her for the bartonella and lyme, since there is a blood test that said she was positive. There was no blood test saying she was positive for PANDAS. She is such a mess right now. We started with the prozac and she looked pretty good, then added the trazadone and she is wild, and her OCD is horrible. I am not sure if its the trazadone or the prozac at too high a dose. But at a lower dose, it does nothing for her OCD. Ugh!!! It is crazy. What doctor do you go to that deals with your child'S PANDAS AND LYME AT THE SAME TIME. I am going to supposedly the best lyme doctor in the country and he seems to be totally lost with my child and her symptoms. Sorry if this letter seems scattered. It's just how life is over here at the moment.

 

*I think I know what you are asking here, although many more can explain it so much better than I, and maybe this is all my opinion.

To both of our LLMD's my dd and I have seen (we are back to back appointments) I have said:

'You've heard of PANDAS, right?'.

(they nod yes)

'Well, the name has actually been changed to PANS, because it is not just a strep infection that causes these certain sets of neuro symptoms: OCD, vocal ticcing, etc.

but also very often Myco P., Bartonella, Lyme...

(and then I explain how my child presents, about vocal tics, OCD, lack of impulse control, and by the way, only at home!)

 

I absolutely believe, and live with the fact, that adults and young children can very differently convey their Lyme and co-infections.

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My 14 yo had lyme also diagnosed with pandas/pans/ whatever you Want to call it! I think Trazadone was not helpful and possibly harmful to her also. She does very poorly with ssri's also.

however,lyrical, given for severe nerve pain , did allow her to sleep.

Just wanted to add another concurring opinion. Best if luck to you and her.

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