monarchcat Posted February 11, 2011 Report Share Posted February 11, 2011 DS just finished his second IVIG this week (1st one was 8 weeks ago). I need to take him for lab work and I thought maybe I'd bite the bullet and get blood drawn for the Igenex lyme test at the same time (I have the kit). I didn't do it before because he had two negative lyme tests prior (not Igenex, though) and his Dr. felt like it was unlikely that he has lyme. Still, though, something will nag at me, i think, until I do the Igenex test. I wonder, though, if the antibodies from the IVIG will render the lyme test invalid? Can I do this or do I need to wait until he's completely finished with IVIG treatments? Link to comment Share on other sites More sharing options...
peglem Posted February 11, 2011 Report Share Posted February 11, 2011 DS just finished his second IVIG this week (1st one was 8 weeks ago). I need to take him for lab work and I thought maybe I'd bite the bullet and get blood drawn for the Igenex lyme test at the same time (I have the kit). I didn't do it before because he had two negative lyme tests prior (not Igenex, though) and his Dr. felt like it was unlikely that he has lyme. Still, though, something will nag at me, i think, until I do the Igenex test. I wonder, though, if the antibodies from the IVIG will render the lyme test invalid? Can I do this or do I need to wait until he's completely finished with IVIG treatments? Its my understanding that any IgG testing after IVIG will be inconclusive since it is unknown if the results come from the patient immune system or are of donor origin. Link to comment Share on other sites More sharing options...
melanie Posted February 11, 2011 Report Share Posted February 11, 2011 Peg thats what Ive been told also Link to comment Share on other sites More sharing options...
browneyesmom Posted February 11, 2011 Report Share Posted February 11, 2011 Hmm... Dr. B ordered Igenex testing for dd11, who he knows has had IVIG... one of them, in fact, at his office. Link to comment Share on other sites More sharing options...
NancyD Posted February 11, 2011 Report Share Posted February 11, 2011 I think you're supposed to wait 3 months until after IVIg. Give IGX a call and ask them. Nancy Link to comment Share on other sites More sharing options...
philamom Posted February 11, 2011 Report Share Posted February 11, 2011 2-3 months is what I was told Link to comment Share on other sites More sharing options...
sf_mom Posted February 11, 2011 Report Share Posted February 11, 2011 You can always do Dot Blot or Urine PCR testing to avoid antibody testing post hdIVIG. However, you would need a provocation protocol to help shed the Lyme into the urine. In my husband's case: day 1 bicillin shot and one other antibiotic shot, day 2 to 6 he was on Azithro, Doxy, Tindamax. We collected first morning urine day 2, 4, 6.... For my older son we used Alinia/Azithro. -Wendy Link to comment Share on other sites More sharing options...
PhillyPA Posted February 12, 2011 Report Share Posted February 12, 2011 (edited) My child's lyme doctor did a study on Igenex labs. He said that they are no better and no worse than other labs but that the lab does produce false positives on the IGM western blot. I asked him this question about ivig and lyme testing and he said that is a very good question. He said that at this point they are not sure how ivig effects lyme testing. Edited February 12, 2011 by PhillyPA Link to comment Share on other sites More sharing options...
monarchcat Posted February 12, 2011 Author Report Share Posted February 12, 2011 Thanks. I guess we'll wait til a couple months after the 3rd (and hopefully final) treatment in April. No sense muddying the waters. Link to comment Share on other sites More sharing options...
philamom Posted February 12, 2011 Report Share Posted February 12, 2011 My child's lyme doctor did a study on Igenex labs. He said that they are no better and no worse than other labs but that the lab does produce false positives on the IGM western blot. I asked him this question about ivig and lyme testing and he said that is a very good question. He said that at this point they are not sure how ivig effects lyme testing. I politely disagree. Most labs don't test for lyme specific bands 31, 34, 83. Link to comment Share on other sites More sharing options...
PhillyPA Posted February 12, 2011 Report Share Posted February 12, 2011 Philamom-no offense taken. You are not disagreeing with me because I know nothing about Lyme disease. The person you are disagreeing with speaks at all of the Lyme conferences. However, how the heck do I know which Lyme doctor's research is correct. I don't. It seems that all of the Lyme doctors/researchers may have something a little bit different to say about the subject. The only thing is that as far as I know - this doctor is the only one to do an actual study on the lyme labs. Link to comment Share on other sites More sharing options...
momofgirls Posted February 12, 2011 Report Share Posted February 12, 2011 Hmmm interesting. PhillyPA would be referring to Dr B.F. From Columbis University? Just curious because my daughter is a patient of Dr J's and Dr. B.F. Is doing a research study currently on lyme induced OCD and tics in children. Dr J sent my daughter's labs to him to be included in this study. Research only, but my understanding is that Dr J and Dr BF both prefer tick borne labs like igenex to truly diagnose lyme. My daughter was included based on her IgM positive results run by Igenex. So if this is the same doc then he must have enough faith in igenex to include a patient like my daughter for his study. Philamom-no offense taken. You are not disagreeing with me because I know nothing about Lyme disease. The person you are disagreeing with speaks at all of the Lyme conferences. However, how the heck do I know which Lyme doctor's research is correct. I don't. It seems that all of the Lyme doctors/researchers may have something a little bit different to say about the subject. The only thing is that as far as I know - this doctor is the only one to do an actual study on the lyme labs. Link to comment Share on other sites More sharing options...
PhillyPA Posted February 12, 2011 Report Share Posted February 12, 2011 Momofgirls - I am quite sure that you are in good hand with Dr. J. I am simply relaying a phone conversation. Not meant to challenge any one. It is my deepest hope that everyone's child is cured from their sickness. We all just want to be on the right path. And really, I am quite ashamed of myself. I should know better then to post anything Lyme related. That's like saying I want a dictator to be in charge of Egypt. A revolution is bound to erupt! In the future, I am going to keep my information to myself. I feel really stupid for sharing. Never again. Link to comment Share on other sites More sharing options...
momofgirls Posted February 12, 2011 Report Share Posted February 12, 2011 (edited) PhillyPa No! You should post what you have learned. Always should feel free, I really do want to hear all sides because as you said so much is unknown and even debated among the 'experts'. That is how we learn. There is even much debate between the pandas doctors as well. We've all discussed the benefits of IVIG against pex. We have all compared notes on IVIG dosage, steroids, and antibiotics etc. The same should be true regarding lyme. Our doctors have even debated these issues with each other. With our childrens best interest at heart, we question everything. We as parents have to ask these questions. I just felt the need to point out that most doctors researching and treating lyme do respect Igenex labs. Parents on this forum are on the same team. Momofgirls - I am quite sure that you are in good hand with Dr. J. I am simply relaying a phone conversation. Not meant to challenge any one. It is my deepest hope that everyone's child is cured from their sickness. We all just want to be on the right path. And really, I am quite ashamed of myself. I should know better then to post anything Lyme related. That's like saying I want a dictator to be in charge of Egypt. A revolution is bound to erupt! In the future, I am going to keep my information to myself. I feel really stupid for sharing. Never again. Edited February 13, 2011 by momofgirls Link to comment Share on other sites More sharing options...
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