IVIG with Lyme & PANDAS?

[justinekno]

My son(10) was diagnosed with Lyme recently (IGenex positive and 1 band shy of CDC positive - plus positive for 31 & 34). He has probably had the Lyme since birth. My son has also been diagnosed by Dr. B as having PANDAS (or maybe PITANDS at this point). He has a very high c3d immune complex (45) and we have been approved for IVIG. Right now my son is taking Augmentin & Zithromax daily and his mood is SO much better these past few days. He has been on these antibiotics for 6 days. He still has his eye tic.

 

My husband and I are on the fence about proceeding with the IVIG because of the Lyme diagnosis. When the dr explains the reasons for IVIG, it makes sense but something in me is just not jumping on board. Maybe it's the stories I read or the fact that I can't really find anything saying that IVIG helps Lyme. I just don't know.

 

I am wondering if anyone has any experiences with having done IVIG with a child who tested positive for Lyme. Did you treat the Lyme first or do IVIG right away? Regrets? Recommendations?

[amy s]

Hi Justine,

 

Ok, for what it's worth, I will tell you our experience. But please know I am no lyme expert. At one point we were told that my dd had lyme (and a bunch of other co-infections, as they say) as well as pandas. She was diagnosed lyme by a supposed lyme literate doctor.

 

At this time we were talking with many different doctors and trying to come up with our own conclusion based on each providers input. We were trying to work up to a steroid burst and IVIg to help with pandas. I was told by this doctor 'DO NOT GIVE A STEROID BURST(due to the lyme), it will make things worse!!!!'

 

I was very conflicted about what to do. I had no reason to think my dd had lyme, but I had many reasons to believe she had pandas. We absolutely had to get help for my dd as soon as possible and I had to make a decision regarding the steroid burst and subsequent IVIg.

 

I was very concerned when told that she had lyme plus all the co-infections. We took the lab paperwork to two other providers, one of which was an infectious disease doctor and both of the other doctors dismissed the lyme diagnosis.

 

I just got out my dd's lab work so I could tell you what it says (it was done 2 years ago so I don't remember it).

 

Ok, if this makes sense to anyone: Her IFA for B Burgdorferi antibodies (IgG, IgM and IgA) came out as <1:40. Which according to the interpretation guide sounds negative to me.

Her IgM Western Blot (IGeneX?) results were as follows:

18 -

22 -

23-25 -

28 -

30 -

31 Indeterminate

34 Indeterminate

39 -

41 ++

45 -

58 -

66 -

73 -

83-93 -

 

Now, this still looks negative to me. Our supposed lyme literate doctor sure thought it was positive.

 

Your child's may be strongly positive, though.

 

I do want to note that on my reference guide of the Igenex testing it states that "Positive results for 31 and/or 34 may be present after vaccination in uninfected persons. Infection with HSV, EBV, HCV and/or syphillis may give false + results." Anyway I wanted to mention that because there are a heck of a lot of people who are infected with HSV, my dd being one of them as she has battled facial cold sores for some time.

 

Ok, so we decided to do the steroid burst that Dr. K recommended and we crossed our fingers and went with the only thing we really had to hold on to. Her steroid burst was strongly positive...meaning it caused immediate discontinuation of pandas symptoms, except she did have more rage like issues which I contributed to the steroids themselves. But there was no mistaking that her other pandas symptoms were gone. So we did the IVIg that is Dr. K's protocol and, for our dd, it was the best thing we have ever done. She had steady continued relief from her pandas symptoms and today, 2 years later she is 100% and I'd say that in this past year she is healthier than I have ever seen her. Of course this is our experience only. And granted, I don't think she is positive for lyme, but, she was diagnosed with it.

 

I wish you the best of luck in your decision. It is hard to know what to respond to at times because not all these kids present the same and have the same issues. But I wanted to let you know our experience, in this case. Please let me know if I can answer any further questions. I hope your child is well very soon!!!

regards,

amy s

[KeithandElizabeth]

This is the big question!!

 

I speak with several moms who are also dealing with PANDAS/PITANDS and lyme and they see an immunologist as well and the problem is that all of the immunologists seem soooo IVIG happy. Our immunologist is also very biased towards IVIG.

 

So, our experience has been interesting. We have two children with PANDAS and/or lyme disease. We did a high dose IVIG with our 8 year old son and we saw great improvements, but the improvements did not last. We than began doing monthly IVIG's and he actually started to become worse. We then figured out the lyme piece as we did our last high dose IVIG on February 4th (7 months ago). Based on Dr. K's advice, we stopped doing the IVIG's and we started treating for lyme and all of the coinfections. Our son is doing great now, maybe averaging 90% better.

 

We also began treating our daughter for lyme and canceled her IVIG and decided to wait until we finished the lyme treatment. She is also doing great (not perfect) and is maybe 93% better.

 

So, I guess I am biased in treating or at least getting a jump start on the lyme treatment. I think that some of these kids who have a heavy lyme germ load either have a more difficult time post IVIG or they do not see any change post IVIG. And there are some children who were helped with the first IVIG during lyme treatment, but not as much with the additional IVIG's.

 

So, we have one doctor, the immunologist, who wants us to do monthly high dose IVIG's and we have our lyme doctor who feels that we do not need to do the IVIG. And then we consulted with an oncologist, who did our first IVIG, and has 5 IVIG rooms in his office and he felt that a body can become dependent on IVIG's and that multiple IVIG's were not the solution. Three different opinions.

 

If I had to do it all over again, I would have at least treated the lyme for a good three months before doing the IVIG. And, if I was seeing great improvement, then I would keep waiting on the IVIG until we needed it.

 

Sorry for the ramble, but I am always analyzing this question myself.

 

Elizabeth

Edited August 26, 2010 by KeithandElizabeth

[Rowens1214]

elizabeth. i was wondering if you had neg strep titers and neg strep cultures? Asking because my son who clearly shows signs of PANDAS has neg titers. He has only tested positive for strep once in the last 2 years and it was type F. I am thinking of asking the his dr if we should pursue the Lyme testing since something is going on but it does not seem to be strep induced. hope this makes sense. He is doing so much better now that he has been on antibiotics for 3 months.

 

Robin

[justinekno]

Thank you for sharing your story. I am glad to hear that your daughter is doing so well. Thank god.

 

I'm no Lyme expert either but I do feel confident that my son has Lyme because I had it (still have a low cd57, for what that is worth) before he was born (I was improperly treated) plus he had 6 bands showing on the IGenex. With that said, I am not 100% that we have PANDAS. So maybe we are the reverse of your situation?! It is so hard to know what to do and sometimes it is just a leap of faith.

 

 

 

I was very conflicted about what to do. I had no reason to think my dd had lyme, but I had many reasons to believe she had pandas. We absolutely had to get help for my dd as soon as possible and I had to make a decision regarding the steroid burst and subsequent IVIg.

 

Edited August 26, 2010 by justinekno

[justinekno]

I think this is the route we are going to take, especially since we have seen such great improvement with mood in the past few days. I'm hoping that's a sign of more positive things to come. I am just afraid of making things worse with IVIG.

 

If I had to do it all over again, I would have at least treated the lyme for a good three months before doing the IVIG. And, if I was seeing great improvement, then I would keep waiting on the IVIG until we needed it.

 

 

Edited August 26, 2010 by justinekno

[KeithandElizabeth]

Hi Robin:

 

Strep was our big trigger for PANDAS symptoms. I believe that in our case, both of my children had lyme and its coinfections but they did not have any symptoms of it until they got strep, which threw them over the edge.

 

As Pacificmom posted recently, any of this microbes can cause PANDAS/PITANDS and it is important to check for them all, including strep, mycoplasma, lyme and its coinfections.

 

Elizabeth

[mandyknowles]

My son(10) was diagnosed with Lyme recently (IGenex positive and 1 band shy of CDC positive - plus positive for 31 & 34). He has probably had the Lyme since birth. My son has also been diagnosed by Dr. B as having PANDAS (or maybe PITANDS at this point). He has a very high c3d immune complex (45) and we have been approved for IVIG. Right now my son is taking Augmentin & Zithromax daily and his mood is SO much better these past few days. He has been on these antibiotics for 6 days. He still has his eye tic.

 

My husband and I are on the fence about proceeding with the IVIG because of the Lyme diagnosis. When the dr explains the reasons for IVIG, it makes sense but something in me is just not jumping on board. Maybe it's the stories I read or the fact that I can't really find anything saying that IVIG helps Lyme. I just don't know.

 

I am wondering if anyone has any experiences with having done IVIG with a child who tested positive for Lyme. Did you treat the Lyme first or do IVIG right away? Regrets? Recommendations?

 

 

ok, we have been treating lyme since december and we did ivig just two weeks ago. I really cannot see any difference in my daughter but I am hoping that something changes. :/

[matis_mom]

My son(10) was diagnosed with Lyme recently (IGenex positive and 1 band shy of CDC positive - plus positive for 31 & 34). He has probably had the Lyme since birth. My son has also been diagnosed by Dr. B as having PANDAS (or maybe PITANDS at this point). He has a very high c3d immune complex (45) and we have been approved for IVIG. Right now my son is taking Augmentin & Zithromax daily and his mood is SO much better these past few days. He has been on these antibiotics for 6 days. He still has his eye tic.

 

My husband and I are on the fence about proceeding with the IVIG because of the Lyme diagnosis. When the dr explains the reasons for IVIG, it makes sense but something in me is just not jumping on board. Maybe it's the stories I read or the fact that I can't really find anything saying that IVIG helps Lyme. I just don't know.

 

I am wondering if anyone has any experiences with having done IVIG with a child who tested positive for Lyme. Did you treat the Lyme first or do IVIG right away? Regrets? Recommendations?

Would you mind sharing the dosage for the Augmentin/Zithromax combo? (please include weight for reference!)

DS seems to be doing not so well just on Augmentin anymore and I'm wondering would it be worth a try adding Zithromax.

Thanks!