Does IVIG affect C3D blood results?

[worriedmommy]

Just curious if anyone knows whether IVIG affects C3D levels. Dd7 had C3D level of 57 back in Aug 2010, before ever having IVIG. Since then she's had 4 IVIGs, with her last one on 3/17/11 & 3/18/11. She just had a blood draw on 5/10/11 (8 weeks out from last IVIG) and her C3D is up to 87. (Normal is 0-8). I'm wondering if this is possibly up due to IVIG or if there's no correlation.

 

(She has not, and still is not, doing well regarding PANDAS symptoms.)

 

Thanks!

[KeithandElizabeth]

Have you checked your daughter for other infections such as chlamydia, mycoplasma and lyme? These chronic infections can often cause elevated C3D levels.

 

Elizabeth

[LNN]

I'd put much more stock in any answer your doctor could give you, so please ask him/her this same question. However, prior to IVIG, my son's C3d was 51. Two months post-IVIG they were 52 (at that point, DS was in worse shape than pre-IVIG). I asked our Pandas doctor if IVIG shouldn't have made those numbers go lower and was told yes, unless there was still a chronic infection. A month later, we started with lyme treatment. I would still ask your own doctor rather than relying on my hearsay.

[worriedmommy]

Thanks for the responses. We tested her for mycoplasma & lyme (IgeneX) last week, but have not yet gotten the results. We did not test for chlamydia...since she's 7, I can't see that being an issue.

 

We actually go to see Dr. B on Wednesday for IVIG #5, and have a consult scheduled to discuss all of her results. So, I'll get his opinion soon. Just wanted to see if anyone else experienced the same thing.

[philamom]

Thanks for the responses. We tested her for mycoplasma & lyme (IgeneX) last week, but have not yet gotten the results. We did not test for chlamydia...since she's 7, I can't see that being an issue.

 

We actually go to see Dr. B on Wednesday for IVIG #5, and have a consult scheduled to discuss all of her results. So, I'll get his opinion soon. Just wanted to see if anyone else experienced the same thing.

Its a different type of chlamydia (Chlamydia Pneumoniae). My daughter's C. Pneumoniae IGG was 1:128...should be <1:64

[worriedmommy]

Thanks for the responses. We tested her for mycoplasma & lyme (IgeneX) last week, but have not yet gotten the results. We did not test for chlamydia...since she's 7, I can't see that being an issue.

 

We actually go to see Dr. B on Wednesday for IVIG #5, and have a consult scheduled to discuss all of her results. So, I'll get his opinion soon. Just wanted to see if anyone else experienced the same thing.

Its a different type of chlamydia (Chlamydia Pneumoniae). My daughter's C. Pneumoniae IGG was 1:128...should be <1:64

 

Ah...I did not know there was a different kind

 

I don't believe she has ever been tested for that. I'll have to ask Dr. B about it when we see him this week.

[sf_mom]

Dr. B has had experience with C3d levels and them rising after hdIVIGs. He should have some answers for you. The one little girl seeing Dr. B thought to be PANDAS eventually discovered Lyme/Bartonella/Mycoplasma and a virus...... her C3d's were over 100. The hdIVIGs were stopped last August due to chronic infections and is doing tremendously better on combo'd antibiotics. C3d have not been tested since last summer and Lyme diagnoses. Current Dr. says they typically resolve with treatment.

 

-Wendy

Edited May 17, 2011 by SF Mom

[worriedmommy]

Dr. B has had experience with C3d levels and them rising after hdIVIGs. He should have some answers for you. The one little girl seeing Dr. B thought to be PANDAS eventually discovered Lyme/Bartonella/Mycoplasma and a virus...... her C3d's were over 100. The hdIVIGs were stopped last August due to chronic infections and is doing tremendously better on combo'd antibiotics. C3d have not been tested since last summer and Lyme diagnoses. Current Dr. says they typically resolve with treatment.

 

-Wendy

 

Very interesting Wendy. Thanks. (If the parent of that little girl is on this forum, I'd love you to pass her my name so she/he could PM me, if they're willing.) Can you tell me how she's doing better? What thought-to-be-PANDAS symptoms are now better with combo'd antibiotics? --I'm looking for any shred of hope that dd's tics could possibly go away (or at least slow) with the right treatment.

I'm dying for Igenex labs to come back. She had IgeneX testing in Aug 2010, and the results were thought to be negative. (All co-infections negative, Western Blot IgG only had band 41 as IND, and Western Blot IgM had Band 41 as IND & Band 58 as ++). I'm curious to see if anything has changed. Lyme is really the main "stone we've left unturned" up to this point.

 

I'm a little curious about mycoplasma. My husband's mycoplasma IgM came back high last month, for which he took 3 weeks of antibiotics. Also, my 5 year old son's mycoplasma level rose from 0.73 in March to 1.30 last week (with the normal range being < 0.90), despite being on daily Azith the entire time. (We've been fighting a mycoplasma infection in him for over 12 months!) -- So, clearly dd is being exposed to mycoplasma. We had her tested last week & her results should be in any day now.

Edited May 17, 2011 by worriedmommy

[momofgirls]

My daughter is the one wendy is speaking of...she had very high C3D always above 80. At one point after ivig they went down but when retested 6 weeks later (no ivig in between tests) they were back up. So theoretically ivig will break up the complexes if the infection is cleared but they will continue to form regardless of ivig if they are still infected. My daughter had mycoplasma, bartonella, and lyme. Our lyme doctor did say that they are common in lyme patients and had seen them as high as 200. He said they should resolve with treatment and did not feel the need to monitor them during treatment. They take a long time to clear. We stopped doing the ivig's as it seemed pointless with all of the infections left untreated.

[worriedmommy]

My daughter is the one wendy is speaking of...she had very high C3D always above 80. At one point after ivig they went down but when retested 6 weeks later (no ivig in between tests) they were back up. So theoretically ivig will break up the complexes if the infection is cleared but they will continue to form regardless of ivig if they are still infected. My daughter had mycoplasma, bartonella, and lyme. Our lyme doctor did say that they are common in lyme patients and had seen them as high as 200. He said they should resolve with treatment and did not feel the need to monitor them during treatment. They take a long time to clear. We stopped doing the ivig's as it seemed pointless with all of the infections left untreated.

 

Thanks for posting! Was your daughter's Lyme test blatently positive, or was it based more on a clinical diagnosis? Also, can you elaborate on how she's doing better?

[momofgirls]

She was igm positive. Not a light up bold positive but Igenex positive that we confirmed with a strong herx reaction to lyme treatment and ART. Keep in mind also that these kids with elevated immune complexes may be falsely negative because the antibodies in which the western blot look for, are bound within the complexes. They are not circulating freely and may not register on a blood test. Some lyme doctors start treatment and retest along the way looking for the patient to test "more" positive as they are treated. Our lyme doctor did say that an elevated C3D is common with lyme. My daughter has done well with lyme treatment and I feel like we have gotten to the root of her problems now. It has not been easy because it is hard to stay strong during a herx and they can last for weeks. I wish I could say she was 100% but she is not. She still has mild but frequent tics. We hope that she continues to improve with treatment.

[worriedmommy]

She was igm positive. Not a light up bold positive but Igenex positive that we confirmed with a strong herx reaction to lyme treatment and ART. Keep in mind also that these kids with elevated immune complexes may be falsely negative because the antibodies in which the western blot look for, are bound within the complexes. They are not circulating freely and may not register on a blood test. Some lyme doctors start treatment and retest along the way looking for the patient to test "more" positive as they are treated. Our lyme doctor did say that an elevated C3D is common with lyme. My daughter has done well with lyme treatment and I feel like we have gotten to the root of her problems now. It has not been easy because it is hard to stay strong during a herx and they can last for weeks. I wish I could say she was 100% but she is not. She still has mild but frequent tics. We hope that she continues to improve with treatment.

 

Thank you for the info. I'm happy that your daughter is improving.

 

One question...what is ART?

[momofgirls]

ART is a diagnostic tool some alternative practicioners use to find the source of disease. Its not conventional and I thought it was pretty wierd when I first heard about it but I think it has been very valuable. Here is a link that explains.

 

http://naturalhealthinnovations.net/autonomic-response-testing.html