IVIg and Lyme Disease and PANDAS

[kmom]

Not sure why I chose Kmom as my forum name...I think "So confused" would suit me better! LOL! We did 1st IVIg Oct. 20 and 21, 2010 for PANDAS. Things have been anything but smoothe since then. In meantime, both kids were dx'd w/ Lyme and Bartonella. I am being treated too due to symptoms. Dr. B has kids scheduled for 2nd IVIg next week. LLMD says don't bother, maybe later. If it didn't help 1st time around much, probably won't help this time. When I left message for Dr. B, nurse responded w/ "Dr. B said do IVIg bc it is a complimentary treatment for Lyme too. It boosts the immune system." Another thing our LLMD said was no steroids if you have Lyme but steroids administered b/f, during and after IVIg. From what I hear, a top LLMD, says if any of kids' anti neuronal antibodies are elevated on Cunningham test, do IVIg and Lyme treatment simultaneously. I just want to get the kids to a better place, even if it takes longer to treat b/c it's tough right now w/ them not doing well while I am struggling at the same w/ my treatment. I'd love to hear personal and dr's advice b/c we are completely lost.

 

Thanks!

[sf_mom]

I am not sure hdIVIG is proven treatment along with Lyme protocol, yet. AND, believe there is only one Dr./LLMD associated with Dr. B that is making the recommendation recently. Many have had a rough time post hdIVIG treatments and when the treatments weren't working, they didn't help the second, third or fourth time either. All the LLMD that do not have a close association with Dr. B, do not typically recommend the hdIVIGs. Even our Dr. believes it is probably not necessary. My concern is that once the hdIVIG treatment has been administered there is no way to control how badly the child herx's and sometimes only time helps to settle symptoms. With oral antibiotics you can lessen the dosage and gage their response, rotate antibiotics, etc. I believe it is safer to give the Lyme treatment an opportunity to work and get some of the bacterial load down before proceeding with another treatment.

 

Anyway, I hope more parents that have been through several hdIVIGs will share their experience. We did NOT have a bad experience with our treatments but our son was on a higher dose antibiotic, eventually followed a 'Lyme' like protocol and he made huge strides towards recovery the further out he was from his last treatment. We will be one year on Jan. 13th.

Edited December 3, 2010 by SF Mom

[jayjay]

Kmom, I just posted the exact same question. Talk about confusing people even more! Sorry about that. Must have started writing about the same time, but I got interrupted a couple of times before I posted and didn't see your post. Anyway, I have the same confusion and hope that someone can shed some light.

[KeithandElizabeth]

Our own story is that the HD IVIG helped our son tremendously the first time (before we knew he had lyme) and then stopped helping and even made things worse. Our son had 4 low dose IVIG's and 2 HD IVIG's. After all of the IVIG's and months of antibiotics, he still had lyme, mycoplasma, bartonella, strep and babesia. Properly treating each infection with a combo of antibiotics and using herbs and detox supplements is helping our son much more than the IVIG's.

 

On another note, our son had elevated Cam Kinase, but normal (high end of normal) anti-neuronal titers. Our daughter had an elevated Cam Kinase (179) and 3 out of 4 of her anti-neuronal titers were extremely elevated. Two were 4x the normal limit. We never did do an IVIG on our daughter and she is doing fantastic now (knock on wood). She is done with lyme treatment and was off of antibiotics completely until our son developed a new mycoplasma infection and we starting giving azith to our daughter to prevent her from contacting the mycoplasma. We plan to take her back off antibiotics in a few weeks.

 

So, I have not redone the Cunningham titers on our daughter, but perhaps I will this summer.

 

This has been our experience and I know that every child has a slightly different experience.

 

Elizabeth

[momofgirls]

sigh, this is a tough debate among those of us who have children with lyme. My daughter had 4 IVIG's this time last year before we even properly tested for lyme. I wish I knew then what I know now in that IVIG seemed to constantly stir her symptoms each month and it wasn't until we stopped doing them did we really begin to see improvement. After all those IVIG's and daily antibiotics she still tested positive for lyme and bartonella. So for us it did not abate symptoms and did not help "boost the immune system" so to better fight the infection, because in the end she still had lyme and bartonella. I really think that treating the lyme/co-infections has made the most difference for my daughter and I now know that when we see gains, that it is because we have erradicated infection not temporarily suspressed the immune response to them as IVIG and steroids seemed to do. Lyme treatment is complicated and is not just a matter of adding additional antibiotics. LLMD's are really good when it comes to finding infections and using the RIGHT combination of antibiotics needed. I hope this makes sense because I think a lot of these children can get well if their infections are identified and properly treated right from the start. My daughter was diagnosed backwards in a sense and our family struggled. This is just our experience and may not be the same for others but there seems to be a trend like ours with many other children who have gone down this same path.

Edited December 3, 2010 by momofgirls

[dabel]

I just had my son in to see a LLMD yesterday. He has PANDAS, Lyme, and we are waiting for the results of the coinfection tests. This doctor wants my son to have IVIG ASAP. This doctors assistant is getting monthly IVIG as well. He really believes it helps. My other son (has PANDAS and we are waiting on the test to come back for Lyme) got HD IVIG a year ago and slowly got better. He got a little sick this fall and and went down hill quickly. He had HD IVIG six weeks ago and then a lower dose (1.0 g/kg) four weeks later. He got worse after this last high dose and seems to be doing a bit better after the lower one. Although, he is at a relatives right now so it is hard to tell how he would be doing if he was with his family as his YUCK is usually directed at us (especially me). So...I guess the question remains unanswered but I thought I would share our experience.

[NancyD]

My DD has had two HD IVIg infusions (one in Aug 2008 and one in Mar 2010) and more than 12 LD infusions (in-between the two HD infusions). While the HD infusions took longer to take effect (10 weeks to be exact), I can tell you that they helped BY FAR much better than any of the LD infusions. In fact, the LD infusions seemed to stir up some of her symptoms every third week. The HD infusion never did that. If I had to do it all over again, I would have done 2 or 3 HD infusions spaced out at least 3 months apart or longer. And I would not do any LD infusions. Having said that, I do not exactly know when my DD contracted Lyme Disease. The doctors suspect it was in the past year. That might explain why she had such a severe exacerbation in early spring and ended up in the hospital for a couple of weeks. Our doctor also wants DD to do another HD infusion once she has been treated for LD for a few months. I am tempted to treat the LD a lot longer and see if we won't even need any more infusions. Interesting comment about anti-neuronal antibodies -- my DD's were elevated. This is a tough decision, especially if insurance is willing to cover it. Keep us posted on what you decide and how it goes.

[kmom]

Thanks everyone! Your comments and experiences are always so informative and helpful to our discussions on our end. I appreciate it.