Igenex results

[laure]

Dd9 had Igenex test sent out Monday. How long until results are in? What will they really tell us? If we are already sure of PANDAS and now discover lyme, how would that change the treatment? I know Dr. B already wants to do Ivig. She is barely status quo right now with prednisone and zith...I want to double the zith to 500mg, but wonder what the Doc is waiting for?

[sf_mom]

It takes two weeks from the time they receive blood sample. You can always call them to find out if its been completed and then request results from Dr. B.

 

If your daughter shows signs of being positive, I would then meet with an LLMD for further evaluation and co-infection testing. Lyme is treated differently with multiple antibiotics that goes at both the outer cell wall and inter cell structure. Eventually, a cyst buster antibiotic is used to draw it out of cyst form and attack the remaining BB.

 

Here is a quick video of how the BB rolls up into a cyst and hides detection.

 

 

'Most' LLMDs would say treat the Lyme for a period of time before proceeding with hdIVIG to see how your child does. Often IVIG is not required. I think the jury is still out on its effectiveness for Lyme. We had good results with our older son when we were treating for PANDAS but he does not have binding immune complexes and was always on hdAntibiotics. We are not sure of all co-infections for him yet.... our younger son has Bartonella and Babesia and is suspected in older. I would say if you have Lyme/co-infections its important to find the best possible LLMD that is experienced in treating difficult bacteria to guide you through these tough decisions.

 

Hope that helps.

 

-Wendy

Edited November 5, 2010 by SF Mom

[EAMom]

Dd9 had Igenex test sent out Monday. How long until results are in? What will they really tell us? If we are already sure of PANDAS and now discover lyme, how would that change the treatment?

 

No steroids if there is Lyme.

 

Are you testing for co-infections?

 

Out of curiousity, does your dd/family have history of tic bites? Where do you live?

[norcalmom]

We are doing doing igenix tests next week. Can anyone comfirm which ones you can't do on antibiotics (cus I'm not willing to take DS off 500mg of azith daily to run the test) I thought it was just the basic lyme panel, but doc (not lyme doc) says you can do all co infections too...I should email igenix again, and will, but saw this thread - and I htin k this board is where I first saw that kids have to be off antibiotics for 2 weeks prior blood draw for some of the lyme tests - don't know which ones (maybe the PCR?) whatever that is??

[laure]

Thanks for all of the helpful responses. We have no history of lyme in the family, and she is in the woods hiking 8 + hours a day all summer every summer in the Adirondacks. So I am not expecting lyme, and she has never shown the typical symptoms of it. He also tested for Bartonella and Babesia, but she has been on abx for 2 months now, with no break, so not sure how those tests will pan out if that matters. Also the steroids are definitely helping her... so that doesn't sound like lyme either from the reports I read on the forum. I think Dr. B wants to rule lyme out since her reaction to Augmentin was so strong, and hurry to Ivig once we are sure. Think I'll ask if she can increase the zith to 500 mg tho, in the meantime, to see if it helps.

The OCD contamination stuff is driving me crazy!!! I can't keep up with all the rules. Today I discovered there is a contaminated laundry basket, and any clothes that touch it can't be worn...so we are back to all clothes two sizes too small, as she goes off to school in 40 degree weather with no jacket, shorts, t-shirt, and crocs. People there must think we are insane!

[JAG10]

I emailed Igenex this question yesterday.....their reply said "10 business days to process from the day they receive it"

[sf_mom]

I wanted to clarify ....... she is NOT in the woods hiking 8 + hours a day, all summer, every summer in the Adirondacks? As you know the NE is an endemic area for LD.

 

Map is from 2003.

 

http://www.cdc.gov/ncidod/dvbid/lyme/distribution_density.htm

Edited November 5, 2010 by SF Mom

[laure]

She actually is in the woods hiking 8 + hours a day...we summer in the High Peaks of the Adirondacks, and there is an amazing program where college kids take groups of younger kids out on hikes and canoe trips every day. They regularly hike from 9 - 12 miles and even more every day. But lyme is relatively rare in the Adirondacks, from my research there were 22 confirmed cases in Essex County, NY last year. And she just was never obviously tired, achey, no fever, or any other typical symptoms. Just that overnight OCD PANDAS thing. But it's worth checking anyway.

[momofgirls]

oh my gosh Laure. If your daughter is spending that much time in the woods you may want to take this lyme thing a little more seriously. Also her positive response to steroids DOES NOT rule out lyme. They may in fact give temporary relief from her symptoms but its bad, bad, bad for the lyme disease underneath. I don't know what Dr. B is thinking giving them to her before ruling out lyme.

[sf_mom]

Its definitely worth checking into Lyme.... as Dr. Ann Corson - Pediatric Lyme Specialist states in her most recent presentation at the ILADs conference neuropsychiatric symptoms are usually the first and only symptoms of Lyme Disease in children.

 

As always, willing to pass along Dr. Corson's slide presentation via e-mail. I'd think you'd learn a lot from her notes on Lyme, prevalence, symptoms, etc. just PM me your e-mail. AND, another plug for the DVD that is available on her talk from ILADS conference. http://www.ilads.org/store/store_lyme_video.html

 

-Wendy

Edited November 6, 2010 by SF Mom

[philamom]

Its definitely worth checking into Lyme.... as Dr. Ann Corson - Pediatric Lyme Specialist states in her most recent presentation at the ILADs conference neuropsychiatric symptoms are usually the first and only symptoms of Lyme Disease in children.

 

As always, willing to pass along Dr. Corson's slide presentation via e-mail. I'd think you'd learn a lot from her notes on Lyme, prevalence, symptoms, etc. just PM me your e-mail. AND, another plug for the DVD that is available on her talk from ILADS conference. http://www.ilads.org/store/store_lyme_video.html

 

-Wendy

Wendy-

Can you forward me Dr. Corson's slide presentation? I plan to order some of the sessions this weekend, but wouldn't mind taking a sneek peek at what you have now. Thanks- Melinda

[philamom]

We are doing doing igenix tests next week. Can anyone comfirm which ones you can't do on antibiotics (cus I'm not willing to take DS off 500mg of azith daily to run the test) I thought it was just the basic lyme panel, but doc (not lyme doc) says you can do all co infections too...I should email igenix again, and will, but saw this thread - and I htin k this board is where I first saw that kids have to be off antibiotics for 2 weeks prior blood draw for some of the lyme tests - don't know which ones (maybe the PCR?) whatever that is??

Basic lyme panel and co-infections can be done while on antibiotics.

[laure]

Thanks for all replies...my brother, who lives about 2 hours south, had serious lyme, so I do take it seriously. He was nearly forced to go on disability, and in the end went on intravenous aby for 6 months. In full recovery now, thank God. But lyme is really low in our area, and as I said she has no real symptoms like any I have read about - just OCD that started overnight. And she has always been asymptomatic for strep and her best and closest friend that she spends many overnights with have strep 6 times a year or so...and her anti bDnase titers were really high. So it was a natural PANDAS assumption. And she has responded well to aby and steroids, just not completely. Sorry for the long reply, I really agree with Dr. B and my mother's gut instinct is that he is right, and is just ruling out the other complicating issues, which I am happy to do. Hence, we have already had the Igenex test, and are just awaiting results. Thanks for all of your support, this is tough for us, and all who endure this horrible affliction.

[sf_mom]

Done!

[philamom]

Done!

Thanks Wendy! Just read it...very, very informative!