Effects of PEX or IVIG if (also) lyme?

[T_Mom]

Has anyone had a doctor advise them as to the potential risks or benefits of plasmapheresis or IVIG if a PANDAS child has lyme as well? Thanks.

Edited March 14, 2011 by T.Mom

[jayjay]

My son's LLMD and immunologist believe that IVIG and Lyme treatment compliment eachother. He has had three IVIGs since starting Lyme treatment and is doing well.

[T_Mom]

Thanks JayJay-- It makes sense to me that IVIG might be a benefit for lyme issues...I wonder about pex and if that would be beneficial if a child had true lyme disease.

 

I say "true" because our d was sky high with the C6 lyme test (done by well respected lyme doctor in NY) -- However, there is a doctor in Maryland, has a blog

lymemd.blogspot.com who wrote that the C6 results can be high due to a sero conversion if the patient has been on antibiotics!

 

In fact, his blog is fascinating to read -- March 2010 (last year) discusses various issues that I can't help but think somehow affect or might provide insight to Ps parents as we treat our children.

 

Again, if anyone has insight on whether or not pex would be potentially a problem for lyme, I appreciate any insights--thanks.

[T_Mom]

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[T_Mom]

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[EAMom]

Hi T. Mom...you might want to contact LLM. Wasn't it her son who had PEX (for PANDAS), then IVIG, then discovered he also had Lyme?

 

You might also ask folks on the Lyme forum.

[sf_mom]

I know PEX has been successfully used in conjunction with 'correct' antibiotics when acute Babesia has been involved with great success. Babesia is an inner red blood cell parasite so it makes sense.

 

Typically monthly ldIVIG is indicated for individuals with neuropathy symptoms of LD. For some ldIVIG monthly treatments are very helpful and for some it is not (case by case basis). hdIVIG has not been indicated for LD in the past. Due to PANDAS/Lyme overlap it has recently been recommended. Rumored reports are hdIVIG treatments every 8 weeks has been helpful for 1/3, 1/3 it has been unhelpful but no negative effect, 1/3 it has had negative effect. It is very possible that the negative effects occur when it is unknown how many co-infections are involved and there is a tremendous herxheimer response = cytokine storm and incorrect antibiotics are used. Nobody knows for sure yet. Again, its case by case basis with response and unfortunately it will be up to the parent to determine helpfulness.

 

We saw great benefits from the 3 hdIVIG treatments our son had for PANDAS but it was not going to resolve the underlying chronic Lyme/co-infections. Our older son has been treated for LD/co-infections since August 2010. He currently has one remaining symptom of a mild cough our LLMD believes is related Bartonella. We are starting a rotation of antibiotics today to address remaining symptom. Once the cough is gone, it is anticipated that we will begin to rotate down and finally off antibiotics over the next 3 and 6 months. He has been treated for PANDAS/Lyme/Co-infections for 19 months. Average recovery for LD in a child is 2 years. We'll be right around the 2 year mark when you consider both PANDAS/Lyme treatment.

Edited March 14, 2011 by SF Mom

[MichaelTampa]

After 2 months of IV abx treatment for lyme, my LLMD was ready to add in some IVIG. He only does what would be called "low dose" here. But, he definitely saw that as something that would be helpful. (Didn't happen for insurance reasons, so no report on how it went.)

 

Risks for IVIG for anyone is you never know what infection you're going to get from the blood. Some things are too hard to screen for effectively. Would be terrible to have lyme but not the babesia coinfection, and then get the babesia coinfection from IVIG. I think that's one they screen very well for. So, risky for sure, very hard to assess how risky, but some docs do it, people probably frequently benefit from it.

[LNN]

Hi T. Mom...you might want to contact LLM. Wasn't it her son who had PEX (for PANDAS), then IVIG, then discovered he also had Lyme?

 

You might also ask folks on the Lyme forum.

 

Yes, that was my son. But I don't have anything concrete to offer. We had pex after a year-long battle of strep and T&A. I suppose it's possible the pex helped because he had such a prolonged autoimmune response. I'd think that removing "good" antibodies that were fighting lyme was a bad thing, but maybe removing the "bad" auto-antibodies outweighed that and in a short time, maybe his body made new lyme-fighting antibodies but no longer had bad autoimmune stuff floating around. Total speculation on my part.

 

We had a bad response to HD IVIG - maybe herx. IDK. It seems different lyme kids have different responses to the IVIG.

 

As hard as it is to find any doctors literate in either Pandas or lyme, finding one who understands both is harder still, and finding any research is just about impossible.

 

All I can offer is prayers and a shoulder.

[dcmom]

Tmom-

 

I can see where possibly HD IVIG could cause a child to worsen, due to a herx, from lyme- due to what some have stated on this board, not necessarily due to any concrete medical info I have seen.

 

I cannot see any scientific reason why PEX could be harmful to someone with lyme. What you are doing with PEX, is removing the majority of the circulating antibodies. You are not, in fact, changing or disabling the immune memory. The HemOnc docs we saw at Gtown felt the kids were not immunocompromised after pex, that if the body encountered infection, the B cells were still standing ready to create more antibodies. The worst case scenario I can see, is if you have chronic or current lyme, and have pex, that autoantibodies will continue to be created, quickly negating the positive effects of the pex.

 

I am thinking of you!!

[Bill]

No. No doctor informed us of positive or negative regarding also Lyme. Dr. B. (CT) would like to do IVIG to combat the OCD which he believes is brought on by the strep bacteria. Our Lyme doctor has seen OCD and behavioral issues with bartonella. It's not clear what if anything IVIG would do if bartonella is the cause.

 

My son had PEX in November 2009 when we had a PANDAS only diagnosis. By January 2010 we were able to report that his severely dilated pupils were perhaps a little less so and one foot/ankle that was rigid seemed to be a little less so. By February 2010, we believed we imagined what little progress we saw. OCD/behavior were not touched. Summer 2010 we received positive for Lyme and Bartonella (via IGENEX testing) and suspected babesia. At this point, I wonder if strep bacteria (PANDAS) is an issue for my son at all.

 

In our case (or should say his case), PEX appears to have had little if any effect. Having said that, and now that we are several months down the road with treatment for Lyme, we are seeing positives in several different areas. Who am I to say that PEX did not play a role? Several of the doctors believe it's likely that all of this started some 9 years ago for him.

 

My gut tells me that without properly treating other co-infections, PEX or IVIG would probably be a wasted effort. If bartonella is the cause of my son's OCD and not strep, then perhaps IVIG would be a wasted effort as well. For me, that's the real question, I know he has bartonella (in as much as I believe the testing); I do not know he has an issue with strep.

 

bill

Edited March 14, 2011 by Bill

[T_Mom]

Thank you for the thoughtful (and thought provoking) responses everyone. Good to check in here and have some things to mull over now.

 

LLM, you have clearly charted some waters with this and I appreciate your shoulder--DCMom,thank you for sharing what the Hemonc Dr. said -- that helps. Bill thanks for sharing your story and insights, it sounds like you are seeing some light along the way (good!) SFMom--thank you for your lyme insights, EAMom--you were right, thanks...Michael, appreciate your note--I feel a little silly with this note, but you know, you are all the best.

 

I hate this illness, it has been tough to remain hopeful at times, but I am remaining hopeful, and praying.

[rockytop]

This is such complicated issue.

I will say our LLMD, who had confirmed lyme and babesia through a "regular" lab, said that if we went through with IVIG for that child- that the timing of resuming abx (for lyme) post IVIG would be CRITICAL.

 

This child never did any further treatment for either condition and is still quite ill (only psychiatric problems and some tics)All her physical compliants from the lyme & babesia are gone. Thank the Lord!

 

For my other duaghter with PANDAS, who had pex 2 months ago- we decided not to even test for lyme. I imagine down the road, if she relapses and is found to have lyme- I will kick my self (or worse) for not testing before pex- but at some point you have to put blinders on and just pray. so we did and still do and so far, I am more than pleased with the pex progress.

 

I kind of got off-topic (sorry!) but I wanted to chime in that our LLMD seemed concerned about possibly doing IVIG with positive lyme. She did not seem so concerned about, pex, I do not think. She also was considering Enbrel (one of the so called "biologics") to treat this.

 

Praying for you, T. MOM!!

 

our LLMD is a wonderful rheumatologist in Northern Virginia- an extremely knowledgable, sympathetic and kind doctor. of course- does not insurance:)--

[mommakath]

We are up for IVIG in a month, our first. Diagnosed with PANDAS in September, Lyme in January. When Lyme doc saw all of the testing, inclusing the immunologists testing, he recommended IVIG. Infact, just said, "he needs it". His office said they have seen lots of Lyme kids really helped by the IVIG. And, they did mention they could herx, but that it is worth it. I am hanging my hat on the advice as they have nothing to gain by advising us to do it. It is sooo hard to make all these decisions. I know all of us just want to to what is best!!

[T_Mom]

Thanks for the advice All--

This threatens to undo us, but there is no way that is going to be allowed.

T.