lmkmip67 Posted August 23, 2011 Report Share Posted August 23, 2011 (edited) We just got home form Dr. B's infusion center and did tell Dr. B that Ian has made no progress since the 2nd one, and is indeed worse. A small virus could be part of the increased tics and OCD this past week, but he still felt that Ian should be doing much better. He brought out the Igenex labs again and said that the Lyme Western Blot IgM and IgG were Indertminate, which I guess means there was something, but not enough to register a positive. The test was done in February so he wonders if it was very early. I find it odd Ian would have been bitten by a tick in January or Feb since we live near Boston and we were under 3 feet of snow. I thought I would past here though and ask what this might mean? I will start some reading on the Lyme board. But figured many PANDAS parents here are familiar with the IGENEX testing and may have some insight. He wants us to retest now (which kills me since we will now have a $300 fee at the infusion center every visit as well, costs going up and up). So I guess I will wait and see what the new test results says. But are the old results of any significance? And if so, I guess I need a good Lyme doctor that will work along with a PANDAS doc, and need them near Boston or Metrowest Boston. Oh, and Ian is on Augmentin, treatment dose anyway, will this mess with the test results? Thanks! Lisa Edited August 23, 2011 by lmkmip67 Link to comment Share on other sites More sharing options...
philamom Posted August 23, 2011 Report Share Posted August 23, 2011 I think you need to wait 8 weeks after ivig before further testing. Link to comment Share on other sites More sharing options...
lmkmip67 Posted August 23, 2011 Author Report Share Posted August 23, 2011 We get IVIG every 8 weeks, so that doesn't sound like that will work well. If that is the case i wonder why he ordered those two tests again.... Link to comment Share on other sites More sharing options...
philamom Posted August 23, 2011 Report Share Posted August 23, 2011 We get IVIG every 8 weeks, so that doesn't sound like that will work well. If that is the case i wonder why he ordered those two tests again.... He's done that b4 - not sure why. You could run it a couple days before the infusion (before you leave home). Link to comment Share on other sites More sharing options...
eljomom Posted August 23, 2011 Report Share Posted August 23, 2011 Yah, but why keep running infusions if you might be dealing with Lyme?? We get IVIG every 8 weeks, so that doesn't sound like that will work well. If that is the case i wonder why he ordered those two tests again.... He's done that b4 - not sure why. You could run it a couple days before the infusion (before you leave home). Link to comment Share on other sites More sharing options...
lmkmip67 Posted August 23, 2011 Author Report Share Posted August 23, 2011 Yah, but why keep running infusions if you might be dealing with Lyme?? We get IVIG every 8 weeks, so that doesn't sound like that will work well. If that is the case i wonder why he ordered those two tests again.... He's done that b4 - not sure why. You could run it a couple days before the infusion (before you leave home). Ian clearly has PANDAS anyway. he has all the classic symptoms. He may have a co-infection with Lyme, I suppose. But he is PANDAS, too. Link to comment Share on other sites More sharing options...
JAG10 Posted August 23, 2011 Report Share Posted August 23, 2011 My dd had Igenex re-run right after ivig. I asked Dr B specifically about this and he said he spoke with the director at Igenex and both determined the ivig would not impact results. Lisa, we re-ran igenex under very similar circumstances. The second round came out even cleaner than the first and the first didn't have much on it to begin with. Link to comment Share on other sites More sharing options...
LNN Posted August 23, 2011 Report Share Posted August 23, 2011 Can you share which bands were IND or positive? No, being on abx will not mess up the basic lyme panel. However, as philamom noted, your best bet is to wait awhile. The half-life of IVIG antibodies is roughly 3 weeks. So for every week after that, you'd get a truer picture. However, hearing you on the expense...if certain specific bands are IND on your first test, some docs would not require a second test to make a clinical diagnosis or at least a willingness to try a lyme protocol. I think it's more a matter of whether you need the additional test to reassure yourself or if the current test gives you enough to feel that pursing it is reasonable. Link to comment Share on other sites More sharing options...
beeskneesmommy Posted August 23, 2011 Report Share Posted August 23, 2011 So, IVig does not help Lyme? Link to comment Share on other sites More sharing options...
lmkmip67 Posted August 23, 2011 Author Report Share Posted August 23, 2011 Well, I have to get the test results from before sent to me, so I will ask again if it is going to impact anything with just having IVIG. I don't want to waste an additional $200 if it isn't a good time. Link to comment Share on other sites More sharing options...
lmkmip67 Posted August 23, 2011 Author Report Share Posted August 23, 2011 (edited) Ok, that is all good to know. Thank you for the info. Hmm, so wondering now if I should wait or not... I am not sure what bands as I forgot to ask for a copy so have to call tomorrow and have one faxed to me. But he is retesting the IgG and the IgM. Are those specific bands? Or are there bands within that? they were both indeterminate. Edited August 23, 2011 by lmkmip67 Link to comment Share on other sites More sharing options...
kimballot Posted August 23, 2011 Report Share Posted August 23, 2011 Ok, that is all good to know. Thank you for the info. Hmm, so wondering now if I should wait or not... I am not sure what bands as I forgot to ask for a copy so have to call tomorrow and have one faxed to me. But he is retesting the IgG and the IgM. Are those specific bands? Or are there bands within that? they were both indeterminate. If I were you I would wait until just before the next IVIG to do any testing. Also, you might want to see a lyme doctor in the interim. I took my son to an LLMD after his second IVIG because he had a bad exacerbation with the first IVIG and had a couple of indeterminate bands. The LLMD made some recommendations for changes in medication that helped my son to do better (for us -just taking him off singulair helped immensely, though it has nothing to do with lyme, but the lyme doctor was pediatrician and she recommended the change). Then the LLMD put my son on a 3-week antibiotic challenge to break up potential lyme cysts, and then we retested just before the next IVIG. It was a long process an my son's second round of testing had fewer indeterminate bands- so we are not thinking there is true lyme ther. BUT - what we did find was that my son did very well on the lyme antibiotics (doxycycline and flagyl). He had more energy and fewer meltdowns. We kept him on lyme antibiotics for the next 6 weeks (changed to minicyclne and tindamax). We just switched him back to augmentin and I am noticing some backsliding. I am planning to call the pediatrician tomorrow to change him back to the other antibiotics. I don't think my son has lyme, but I do think he has some type of infection that has not gone away. I think the medications the lyme doctor recommended are helping. As long as he has to be on antibiotics for PANDAS, he may as well be on ones that help him! All of these visits and tests are very expensive so you have to determine what you can afford. If you can swing it, though, I would recommend a visit with an LLMD. Link to comment Share on other sites More sharing options...
lmkmip67 Posted August 23, 2011 Author Report Share Posted August 23, 2011 I am thinking it would be a good idea too see a LLMD, yes. Now to find a name of a good one in Massachusetts. I can't drive much more than I am to CT. Link to comment Share on other sites More sharing options...
peglem Posted August 23, 2011 Report Share Posted August 23, 2011 Since they access a vein for IVIG anyway, can they just pull the blood before starting the infusion? This is what we do when we need blood draws, if we can wait until the next IVIG. Link to comment Share on other sites More sharing options...
kimballot Posted August 24, 2011 Report Share Posted August 24, 2011 I am thinking it would be a good idea too see a LLMD, yes. Now to find a name of a good one in Massachusetts. I can't drive much more than I am to CT. Sending you a PM Link to comment Share on other sites More sharing options...
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