justinekno

I was told this by IGenex too. I just wanted to note I did call Igenex and also emailed them concerning being on antibiotics and was told when I called that as long as it was not urine or PCR test it would be fine. The email sent to me was this: The Western Blots, and IFA’s are all ok . Hope I have the right information, not planning on going off of antibiotics as it causes a backslide for us.

I agree that a LLMD is warranted. I am re-reading Cure Unknown again, now that we are living it. I just wish these dr's weren't so hard to find.

Do you have anything to show that IVIG would not work with Lyme? It was my gut feeling but I can't seem to find anything saying so.

Yes, Dr. Cunningham confirmed the same thing to me when I emailed her recently. Although she said it was possible that there is hidden strep in these kids and the tests are just not showing it. Maybe that's a bit of a disclaimer because she/everyone is still learning about PANDAS/PITANDS. Dr. B. agreed that elevated immune complexes can be caused by Lyme. I think what occurs next is what is confusing to me. Is it just Lyme or other things too? Maybe it doesn't matter because they are treated the same way? Although I wonder if you have Lyme (just Lyme only) would IVIG work? I haven't looked into that.

I don't think it's a lame question. I think that is one of the million dollar questions. Our dr believes that Lyme started the process of my son's immune issues and that left him open to problems with strep, hence PANDAS. I am not 100% convinced that we are dealing with PANDAS because our strep history is a little iffy. I can't get a clear answer from anyone if Lyme can produce the same test results (cunningham, immune bloodwork) as PANDAS. If Lyme can mimic PANDAS in symptoms, can it mimic PANDAS in bloodwork? [quote name=PANDASmcnuggetsw/fry/coke' date='13 August 2010 - 11:43 PM' timestamp='1281757396' post='79705] If your child tests positive for lymes, are you still concerned about PANDAS? Or does the lyme explain what was going on in the first place with your child? If the symptoms can be so similar, how does one know if there is PANDAS in addition to lymes or just lymes? Sorry of this is a lame question, but I was thinking about this alot today!:-) PANDAS McNuggets w/fry/coke

I tend to agree with your view. I keep hearing how there are great Lyme dr's in the N.E. which makes sense since Lyme started here but I can't seem to get any to return my calls or answer their phones or they cost ridiculous amounts of money which aren't covered by insurance. It's so frustrating. I just want to help my son!

We see him and he is knowledgable about Lyme although when it becomes complex (i.e., chronic Lyme) then he does defer to a LLMD as is our case.

I will check out Lymenet.org. Thank you. I agree with not posting dr's name on the board. A PM would be great!

Well it looks like we are looking at Lyme and PANDAS. My son's IGenex test came back positive for Lyme. Thanks to some suggestions from this board, I started investigating whether my son could have gotten Lyme in utero. I had Lyme (classic bullseye rash) a few years before he was born but I was treated with only 2 weeks of Doxycyline. My son is currently on Biaxon but we need to see a Lyme dr to start an antibiotic regimen for chronic Lyme. Does anyone know of a Lyme dr in the New England/NY area? If so, can you please PM me? I did request names form the ILADS website and have left messages with those dr.'s but no response yet. Thank you.

I'm curious. For those who have done the IGenex test and seen their results, are they difficult to interpret? My dr's office just received the faxed results and the nurse couldn't make heads or tails out of them. She is sending me (and our PANDAS dr) the results but I'm wondering if I will even be able to figure them out! She said it looked like my son was IGenex positive (maybe igg but not sure), CDC negative but that's all she could decipher. I should have them by tomorrow in the mail but it's sooo frustrating to know they have them in their hands and can't read them.

How do you do the urine testing? Is that through a certain lab? Also, did he happen to mention his thoughts on the CD57 for adults? Does he believe it's a useful tool in diagnosing Lyme? When he says high immune complexes can give a false negative, does he mean through IGenex? We are still waiting on our IGenex results. When I called, they said it could be up to three weeks. I was hoping for two

Love it!

SF Mom; We are also looking into congenital Lyme. We are waiting for our IGenex results. There was a recent post about Dr. Jones thoughts that kids born with Lyme are very sickly. My son was not "sickly" but did have lots of high fevers and neuro issues. Were your kids very ill as infants? I can't remember if you tested them through IGenex. My son tested 41 positive on the regular western blot and had a high cam kinase (170). I wonder what Dr. Harris' take would be on congenital Lyme. Were you ever tested for Lyme or just treated for symptoms? I had the bullseye rash so never had bloodwork done.

I'm away on vacation right now so I don't have my notes with me but I did the one our dr recommended which I believe was western blot igg and igm with the fluorescent light read. It was $260. Our dr said sometimes the fluorescent light portion will come up positive when the reg portion of the WB reads negative. I figured for $60 it was worth the extra check.

I was told by them you only had to be off of antibiotics for 10 days if you are doing the pcr tests.

I wonder if IGenex would have any info about this.

What great news! My prayers are with you for your flight there and back. I'm not a fan of flying either but you are doing a great thing and you will be protected. If you have a moment, maybe you could ask Dr. Cunningham about Lyme and PANDAS. I emailed her the other day about whether Lyme could produce high CamKinase without having PANDAS. I explained that we think my son may have been born with Lyme. I think I may not have worded it correctly because she responded that you cannot be born with Lyme and that you get it from a tick... I'm sure she is aware of Lyme being transferred in utero? She did say she has seen some cases where the kids have documented cases of Lyme and they still have a high CamKinase. I'm curious though if an elevated CaMkinase rules out the possibility of solely Lyme. She didn't really say and maybe they don't know but I would be curious.

They will only send results to the ordering dr. IGenex told me it takes about 2 weeks for the results.

Which tests did you do through IGenex? Was it one of the packaged tests? When you say he was positive for bands 31 & 34, was that the CDC Western Blot or through IGenex? Did he have the 41 positive band through the CDC WB?

I read this book a while ago but don't remember the details of Lyme and NY. I'll have to read it again!

We used Clinical Lab Partners and they will not send to any lab other than their own. We didn't have the IGenex kit with us though when we went so I'm not sure if they would have done just a draw for us. I did call Quest and they said if we have the kit, they will do the draw. We ended up going to our integrative who has a lab on site and they actually had the IGenex kits there since the dr's office uses them so much. We are now waiting for our results. You can call IGenex directly and they will send the kit. It came Fedex to me in about three business days - across the country.

I think that 41 band is the big mystery! My son was also positive for this band (IgG) and Dr. T. commented that he sees that in alot of PANDAS kids. He thought it likely meant an infection with a flagellated bacterium (not Lyme) that perhaps triggers PANDAS in kids. We have gone forward with Lyme testing through IGenex only because we are looking into whether I passed Lyme onto my son in utero (I had Lyme before he was born). I'm sure the people on here who are experienced with Lyme will chime in (I hope!)... I think you can search 41 band on this board and see some past threads that discuss it too. Also, I googled 41 band and got some Lyme sites but that was alot of conflicting info so not sure how much help that would be!

How long did it take before Aetna gave their approval for your boys? Dr. B.'s office is working on our precertification this week.

We are new to the PANDAS world and are currently looking into Lyme also being an issue for my ds(10). We see one of the PANDAS doctors listed on the board. My son has had an eye tic for 7 years and over the past year we have started to really try to understand what is causing it and what his triggers are. We know that sugar and food dyes are big triggers for him. We had food sensitivity testing done and discovered some issues there too (it helped clear up his eczema too). We have eliminated all artificial dyes and try to use minimal sugar. We also eat organic as much as we can. thank you so much mkur i did have a friend tell me about the ibuprofen but haven't tried it yet. i will do that tonight being he is popping his head like crazy. he is scheduled to see an allergies/immunologist on wednesday and i hope we can get some kind of answers. alot that i talk to dont see a relation with food allergies and tics but i have noticed that if i give him ice cream his verbal tics (humming sounds) come on very quick and don't just go away. as far as food dye's i have noticed he gets very hyper and he doesn't even realize he is ticcing. he does i know for sure have some kind of reaction to red sauce ( ketchup being #1) his ear lobes turn bright red. i know he has food allergies it is just going to be a pain getting him straightened out once we find out but i will do what i can to get him as close to tic free as i can. i will have to try the epsom salt as well. thanks again for your help.

We are testing with IGenex after being on antibiotics for over 4 months. Maybe that will help jumpstart the antibodies, if he has Lyme. We are going on the theory that he may have been born with it.