Shoud we IVIG?

[GraceUnderPressure]

My ds18 (recap: tics started at age 4 & have incrementally worsened over the years. positive lyme, neg co-infections per Igenex, questionable strep, ambiguous myco, some high viral titers) has been on the herb lomatium and then added on zithromax for a couple of months now - was not able to tolerate augmentin or doxycline at this point. While the improvements wouldn't qualify as miraculous, the zithromax has DEFINITELY improved things to the point of being tolerable again at least which given where we were is HUGE!

 

So, of the relatively few things we've tried so far, the zithromax has unquestionably brought us the most improvement. However, we are still struggling. He has been able to do some minor schoolwork again, but he still has too many issues to do more than a couple of subjects & other issues that complicate giving him treatments & have us extremely worried about possible health issues developing from his poor hygeine.

 

Our UHC insurance begins anew as of June 1st. But our LLMD appt is not till June 20th. Dr R in Plano will do IVIG for us & UHC usually covers it so we are thinking of going ahead & getting that treatment now when all of our deductibles have been met for this year rather than waiting till we have to meet them all again. Dr R does use short term steroids to minimize the IVIG side effects & I would be reluctant to do it without them after what I've read of the side effect possibilities.

 

Opinions? Go for it? Or too risky? Wouldn't being on treatment help minimize the risks?

Edited April 5, 2011 by GraceUnderPressure

[LNN]

When we did IVIG last summer, we didn't know DS had lyme et al. So he had a horrible 10 weeks post-IVIG. I now think a large part of that could have been herx-related and may have been much milder had we used an aggressive detox strategy. But it's just speculation. Even if we could do it again knowing what we know now, I don't think we'd turn to IVIG as part of our treatment plan, just because it was hard to manage the effects and I'm not sure it did more good than we've gained on the correct combo of abx (plus our insurance only covered 50%). But I know others who are making it part of their regular treatment plan (w/Dr J's ok) and feel it's the right path for them.

 

If you hadn't come from a Pandas perspective and had just come to lyme without that history, you might ask yourself how you'd feel about IVIG as a lyme treatment. I think sometimes the culture of Pandas changes the way we view IVIG and makes us feel like we "should" do it, even after our kid's diagnosis has changed. However, if you lean that way more because you feel it can pack a bigger punch than abx, esp. if DS has gut issues, and it's affordable before July 1st but out of reach after, then maybe it's worth a try. If you go that route, I'd read up on a lot of detox options and have that plan in place.

 

I'm glad the zith has given you some relief. Is there a reason DS is only on one abx at the moment?

[AmbersMommy]

My ds18 (recap: tics started at age 4 & have incrementally worsened over the years. positive lyme, neg co-infections per Igenex, questionable strep, ambiguous myco, some high viral titers) has been on the herb lomatium and then added on zithromax for a couple of months now - was not able to tolerate augmentin or doxycline at this point. While the improvements wouldn't qualify as miraculous, the zithromax has DEFINITELY improved things to the point of being tolerable again at least which given where we were is HUGE!

 

So, of the relatively few things we've tried so far, the zithromax has unquestionably brought us the most improvement. However, we are still struggling. He has been able to do some minor schoolwork again, but he still has too many issues to do more than a couple of subjects & other issues that complicate giving him treatments & have us extremely worried about possible health issues developing from his poor hygeine.

 

Our UHC insurance begins anew as of June 1st. But our LLMD appt is not till June 20th. Dr R in Plano will do IVIG for us & UHC usually covers it so we are thinking of going ahead & getting that treatment now when all of our deductibles have been met for this year rather than waiting till we have to meet them all again. Dr R does use short term steroids to minimize the IVIG side effects & I would be reluctant to do it without them after what I've read of the side effect possibilities.

 

Opinions? Go for it? Or too risky? Wouldn't being on treatment help minimize the risks?

 

Hi. My dd7 has PANDAS and Lyme. We have had three rounds of IVIG. Right after the IVIG her symptoms definintely increased. Actually after the last one we had new symptoms. The thing is that after about 5-6 weeks post IVIG each time she was better than she was initially. I am not saying that these gains were huge all at once. However, all the changes taken together have improved her life greatly!!! She just started back to school...only an hour a day, but it is progress as she hasn't been in since last May. We did and still do have a detox regemin in place. We added to this regemin several weeks ago and I noticed a positive difference in her. She is calmer. At one point on this forum someone posted that if the Lyme was being treated somewhat affectively then the IVIG is more effective. I don't know if that is true or not. Oh...FYI my daughter is on Azithromycin and Bactrim. When we added the Bactrim after she had been on Azith for several months she had a bad herx reaction, but after that cleared we could tell that the Bactrim was helping. My daughter was on low-dose steroids for 2 days pre-IVIG and 3 days post-IVIG. We also gave her Ibuprofen and Benadryl post IVIG for several days. After one IVIG I thought I would stop the benadryl and Ibuprofen a day early. Bad move....she got what I think was a migraine and threw up. The next time she had IVIG I kept on with the benadryl and Ibuprofen and she had no problem. Oh, here is a tid-bit of information. My neice had IVIG for an autoimmune response not related to PANDAS. She had no negative reaction whatsoever to it other than fixing the problem. Wouldn't that be nice? Good luck!!!!! I think if you do go ahead and have IVIG have a detox plan in place. Call the LLMD you are going to see and explain what is going on. Have them point you in the direction of appropriate detox. It seems that these things are supplements and not medications, so really he/she technically probably doesn't have to see you first like with a medication.

 

Again...GOOD LUCK!