Jump to content
ACN Latitudes Forums

Bartonella


Recommended Posts

Since you are working with Drs. B & J in CT - you can't do much better. Others are right though in that Dr. J. may not be as "close" as you need in the shorter term. The optimal solution would be to find a doctor who consults with Dr. J. as needed. As Dr. J. has probably seen more cases than anyone else, he can give you the confidence you need. Specifically, he was able to share that he has seen several other children like my son (predominant symptoms of raging, dystonia, now OCD). Just knowing that he'd seen similar before takes a weight off one's shoulders.

 

My son does not herx so I can not be any help to you there.

 

Dr. B. and J. have some sort of relationship; I would feel confident that they will consult as needed. It is likely that Dr. J. has seen others who react severely to medicine. Hopefully, he has treatments to match.

 

bill

Link to comment
Share on other sites

Thanks, Dawn. I hope we see similar improvement.

 

Do you remember what the numbers were for your child? DS9 is 140 on B. Henselae IgG.

 

Also, are you using Bactrim, or something else? How long are you/were you on it? How long to start seeing rashes and improvements? Any unpleasant reactions?

 

I think we're starting very soon.

 

 

Just curious what the actual numbers were for the Bartonella. My son is borderline for Bartonella based on an Igenix test that we just got back.

 

Thanks.

This is what happened. Dr. B. is treating for PANDAS and pre-certifying us for IVIG. We had the LYme test done with Scott Smith and then followed up with Dr. Beals.

Co infections was never tested, and Dr. B. wanted it done. I called Dr. Beals to ask if it could still be done with left over blood at Igenix. Dr. Beal said even if we test for co-infections, it is only 50% accurate (i think that was the percentage.) and he did not encourage it. So, I did the test anyway... and it comes back possitive and Dr. B. wants to treat for Lyme now. I made an apointment with Dr. Jones. My girl is currently on bactrim and finishing up a steroid burst. The bactrim makes her insomnia and OCD worse at night so far. Perhaps it is die-off.

Our son was "just" positive on the bartonella titer. We never noticed rashes of any sort until we started going after it---his back became covered with the bartonella rashes. His behaviors/sx's plummetted right along with them!! Dawn

Link to comment
Share on other sites

This is what happened. Dr. B. is treating for PANDAS and pre-certifying us for IVIG. We had the LYme test done with Scott Smith and then followed up with Dr. Beals.

Co infections was never tested, and Dr. B. wanted it done. I called Dr. Beals to ask if it could still be done with left over blood at Igenix. Dr. Beal said even if we test for co-infections, it is only 50% accurate (i think that was the percentage.) and he did not encourage it. So, I did the test anyway... and it comes back possitive and Dr. B. wants to treat for Lyme now. I made an apointment with Dr. Jones. My girl is currently on bactrim and finishing up a steroid burst. The bactrim makes her insomnia and OCD worse at night so far. Perhaps it is die-off.

 

Wilma - I just want to congratulate you for your perseverance. You are seeing all the best doctors for your child. As you can see - there is no "One" way to diagnose and treat PANDAS or lyme.. but you are finding the best ways for your daughter. I look forward to hearing positive stories about your daughter.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...