Would you still do IVIG?

[Wilma Jenks]

We were headed toward IVIG for PANDAS and then found our girl tested possitve for Bartonella.

The doctor mentioned something like the IVIG is dangerous if your child has co-infections. Do I have this right? Also...perhaps my child just has Lyme and not PANDAS. Something is helping her calm down the last 2 nights. I am not sure if its because we are tapering off the steroid and it has helped something, or is it the small amount of bactrim we added in? Can't figure it out, but something seems to be happenging. I am thinking it can't be the steroids because the steroid burst is suppose to make them worse if they have bartonaella

[problemsolver]

What lab does one request to check for bartonella and lyme?

Dave

[peglem]

We were headed toward IVIG for PANDAS and then found our girl tested possitve for Bartonella.

The doctor mentioned something like the IVIG is dangerous if your child has co-infections. Do I have this right? Also...perhaps my child just has Lyme and not PANDAS. Something is helping her calm down the last 2 nights. I am not sure if its because we are tapering off the steroid and it has helped something, or is it the small amount of bactrim we added in? Can't figure it out, but something seems to be happenging. I am thinking it can't be the steroids because the steroid burst is suppose to make them worse if they have bartonaella

I find it hard to believe a small amount of bactrim would do much to fight bartonella. Just my opinion, but I think the steroid has reduced the production of auto-antibodies...like its supposed to.

[mama2alex]

We were headed toward IVIG for PANDAS and then found our girl tested possitve for Bartonella.

The doctor mentioned something like the IVIG is dangerous if your child has co-infections. Do I have this right? Also...perhaps my child just has Lyme and not PANDAS. Something is helping her calm down the last 2 nights. I am not sure if its because we are tapering off the steroid and it has helped something, or is it the small amount of bactrim we added in? Can't figure it out, but something seems to be happenging. I am thinking it can't be the steroids because the steroid burst is suppose to make them worse if they have bartonaella

 

Hi Wilma,

 

We did IVIG twice after our son tested positive for Bartonella. We didn't understand the seriousness of a Bartonella infection at the time, and were having a hard time believing our son could have Lyme, given his negative test and no history of tick bite that we knew of. The first IVIG helped temporarily, but we had to go through several very rough weeks first. The good effects lasted for about 3 months, and then he got a virus and we lost all gains. We're not sure if the 2nd one helped, as we started Bartonella/Lyme treatment a month after the IVIG, and never saw a change either way in those weeks between IVIG and starting Bartonella/Lyme treatment.

 

Also, just because a child has Bartonella, doesn't mean steroids won't temporarily ease their PANDAS symptoms. It is possible to have a Bartonella infection AND have an autoimmune response to illness (PANDAS/PITAND) at the same time, as our son does. Our son was helped temporarily by steroids on two occasions. Steroids are not recommended for Lyme patients because they suppress the immune system (this is how they reduce inflammation), and can therefore interfere with ridding the body of Lyme/co-infections.

[mama2alex]

What lab does one request to check for bartonella and lyme?

Dave

 

 

We used Igenex to test for Lyme and co-infections. You can find more info on this over on the Lyme forum.