Lyme & IVIG

[jayjay]

My son had IVIG for PANDAS about 10 days before we started Lyme treatment (6 weeks ago) While at that appointment we scheduled another IVIG in 8 weeks. When the appointment was made we didn't know my son was positive for Lyme yet. 8 weeks has flown by and the IVIG is Monday and Tuesday of next week. I talked to the nurse today and she said that the Dr. still wants my son to have the IVIG. She said the Dr. believes it will help with the Lyme treatment. I will be contacting his LLMD to see what he thinks tomorrow, but would love to know any thoughts/opinions on this. Is it a waste of time, money? Could it be beneficial?

[sf_mom]

I just responded to similar question below.... I sure hope others that have been through several treatments will respond to help you make a clear decision.

 

-Wendy

[jayjay]

So sorry , We must have been writing it at the same time!

[tpotter]

We did both. We had just started Lyme tx that month, and insurance approved IVIG after a long and bitter fight. Dr. B. felt that IVIG could help the Lyme, and we also asked the LLMD. He said it wouldn't "hurt".

 

Personally, I believe that my boys have both PANDAS and Lyme, and given the fact that there is a documented immune deficiency, we really have to treat both. Could it be better to treat the Lyme first...I don't know, but insurance probably wouldn't have waited that long, anyway. Honestly, I do believe the IVIG is important to do, because it helps the immune system fight off new infection, as well as the LD, and anything else our poor kids have.

 

I haven't seen any negative from doing both. We will be going in for our 8 week 2nd IVIG in January, and Lyme tx is continuing.

[NancyD]

Surprisingly, after 10 months of denials and appeals, my DD14 was just approved for 3 months of IVIg. In an earlier post I had said I would like to hold off for a few months while she is being treated for LD. Well, I just did 180 since we only have a 3-month window and both of our doctors wanted us to do it right away. So we did it on Thursday (1.5 g/kg). And two more infusions (most likely 2g/kg) to follow in 7 and 14 weeks. I am really hoping I made the right decision!! DD makes NO antibodies to fight strep or other infections so I'm hoping once we clear the LD and any other co-infections she will start to make her own antibodies. We have always had success in the past with hdIVIg so here's hoping...

Edited December 11, 2010 by NancyD

[sf_mom]

Wishing you both positive results with treatment!!!!!!!!!!

 

As you know, we did do 3 hdIVIG with our older son last year, they were helpful at the time but we were always treating with hd antibiotics and followed a Lyme like protocol eventually. We did not have some of the difficulties some have had post treatment. However, we did NOT see the TICs resolve entirely until we were at least 6 months post his last treatment and following Lyme protocol. We will be one year Jan 15th.

 

We have opted to not do hdIVIG with our younger twins who are much more immune compromised for now.

 

Long term, I would love to know if you feel it helped, provided no additional benefit in the healing process or slowed progress along to help our family make a better decision if we are confronted with a similar choice.

Edited December 11, 2010 by SF Mom

[tpotter]

I will definitely let everyone know. I think that's the best part of this forum. We are all figuring it out together, because no one really knows for sure what will or won't work (including the doctors.) So, we all have to take the information that's out there, and decide for ourselves what is the best option for our own children.

[sf_mom]

I agree and its been difficult for us particularly because initially we were following PANDAS protocol and then had the cross over of Lyme like protocol. We will never be able to say for sure 'what' truly got our older son where he is today. I do know he made huge strides towards recovery when we started the multiple antibiotics because he was shedding symptoms and we were 5 months post hdIVIG at the time. So, that particular protocol was key for our son.

 

I also know not everyone shared our experience with hdIVIG so its a tough call. I also realize not every child is infected similarly so it might be as simple as a child with babesia doesn't do well with hdIVIG or a child with binding immune complexes doesn't do well with hdIVIG. THESE ARE THE THINGS that keep me up at night and you are right 'nobody knows the right answer at this point in time'.

 

AND as you know it is other parents experiences all along the way that has shaped our decisions as family..... I feel so fortunate and also 'lucky' to be where we are in the recovery process.

Edited December 11, 2010 by SF Mom

[NancyD]

I too will keep you posted on how we do. We have always had great success with hdIVIg. The tics have been gone 100% for over a year and for the most part the daily violent rages are gone (she's had 3 in the past 7months, which is light years better than before). So now we are targeting the severe anxiety and scrupulocity. Dr. B wants to up the dose to 2 g/kg to see if that makes a difference. Based on past results I don't think it will make her worse, but for me the question is will it make her any better and will it stick? Only time will tell...

 

Nancy

[jayjay]

Well, we went ahead and had IVIG #3 on Monday and Tuesday. It's been a rough week. The migraine and nausea were horrible yesterday but today he is feeling better. We will definitely keep everyone updated on the progress of Lyme protocol and IVIG together. #4 is scheduled for early February.