Jump to content
ACN Latitudes Forums

Question


eljay1

Recommended Posts

For those currently doing ivig with Dr. B., do any of you use something besides oral steroids for the side effects? I am particularly wondering about those with Lyme or co-infections. My ds7 has a co-infection, and I am wanting to try to stop using the steroids for side effects (we also use Motrin and Benedryl). He gets headaches following the treatments, even with steroids. Any thoughts??

Link to comment
Share on other sites

My children have coinfections too and they were very nasty after ivig while using steroids. We no longer use orapred but continued with Benadryl and Motrin. This past time was 2 weeks before their T&A and we could not use Motrin, I was really worried but we used Tylenol instead and they did ok. Motrin is better but we just continued every 4 hours with or without pain.

Link to comment
Share on other sites

My children have coinfections too and they were very nasty after ivig while using steroids. We no longer use orapred but continued with Benadryl and Motrin. This past time was 2 weeks before their T&A and we could not use Motrin, I was really worried but we used Tylenol instead and they did ok. Motrin is better but we just continued every 4 hours with or without pain.

So they did ok without the orapred? No increase in headaches?

Link to comment
Share on other sites

Does IVIG still work with Lyme Co-infections??

That is a subject of great debate! Although the verdict is still out on that, my son has had 4 ivigs and is working with a Lyme specialist as well. We have seen the most improvement (over the last 2 years) with this combined therapy.

Link to comment
Share on other sites

Does IVIG still work with Lyme Co-infections??

That is a subject of great debate! Although the verdict is still out on that, my son has had 4 ivigs and is working with a Lyme specialist as well. We have seen the most improvement (over the last 2 years) with this combined therapy.

 

 

About how much symptom resolution have you been able to see?

Link to comment
Share on other sites

He has alot of different symptoms--gut issues, allergies, ocd, tics, and leg pains. His ocd has gotten quite a bit better, allergies a little better, tics about the same, emotional issues much better, cognition better--able to focus in school better. I don't know if I can put a percentage on it, but after switching to azithromycin and bactrim, plus ivig, he is doing so much better than last year at this time. One of the major improvements is that he is able to play by himself again and entertain himself (he is our only child and demands alot of attention). Anyway, it all seems to be helping.

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...