Has anyone tested negative on IGNEX?

[dcmom]

I do plan to spray the yard for tics- and keep the deer out (although I know deer are not the only animal that carries these ticks_.

 

I have concerns with using deet on the kids on a daily basis. I will certainly keep them out of taller grass, etc. Any ideas of something less toxic to use on the kids?

[JAG10]

It is about $200... $400 to test for Lyme only via Igenex. If you do the co-infection panel it would be more. I think your perspective is good. If at the 6 month mark she is still struggling and its looking like another IVIG is require to push her to 100%. I would definitely invest in the tests prior to additional treatment..... WITH CO-INFECTION PANEL. Again, my friend's son's ASO, Anti-DNase-B and TICS all resolved after first hdIVIG. By the time he needed a 3rd hdIVIG we realized something else must be at play (thanks to Elizbeth). He came back negative for Lyme but positive for Bartonella and Ehrlichia. AND will most likely turn positive for Lyme once he is further into treatment.

 

I actually now feel the Lyme testing is more critical than CaM Kinase II.

 

-Wendy

 

Do you know how much the co-infection panel costs? I wonder if the pediatrician would give us a hard time about writing the script for these tests? I remember when I sent our little tick friend off for testing in 06, my BIL suggested putting dd10 on abx just in case and while the testing was in progress. The pediatrician said NO, no rash. I said, OK, but if that tick comes back from the lab with Lyme, you are going to do abx, right???

 

My goodness, you would think we are all heroine seekers with the reactions we get when requesting abx!!!

[philamom]

I do plan to spray the yard for tics- and keep the deer out (although I know deer are not the only animal that carries these ticks_.

 

I have concerns with using deet on the kids on a daily basis. I will certainly keep them out of taller grass, etc. Any ideas of something less toxic to use on the kids?

 

Avon has a line of insect repellent sprays/lotions that are recommended on some Lyme sites. They are probably on sale right now too.

[mom2gsd]

We are one of those that did 16 months of IVIG on my son, with mimimal success. Actually thought since he had PANDAS sx for so many years, that it would just take some time to see improvements. WRONG. He tested positive for Lyme! We are now on a different path, but he also continues to get strep infections. I'm hoping this will resolve with continued Lyme treatment. It was asked if everyone tests + through IgeneX, from what I read on a couple Lyme forums I'm on, the answer is "no". But it does look as if this is a much more serious disease than people are willing to believe. I do not think everyone has Lyme, but if you or your child can not rebound from having symptoms, then it's worth the money spent on testing. My son may have had this for 9-10 years, he has a Dx of autism, at age three it was considered mild, over the years he has continued to regress and shows more signs of neurological decline. I am just hoping to save my son, and I hope to give an eye opener to others that hasn't seen improvements. Our story is very long and sad, wouldn't wish it on anyone.

[JAG10]

I am going to repeat my post that I put on a different Lyme post. My son was tested for Lyme by Dr. Brian Fallon at Columbia University. He is an internationally known Lyme expert. My PANDAS son tested negative on all Lyme and tick borne illnesses. This also includes negative on band 41. My understanding is that if Dr. Fallon says you don't have Lyme - you don't have Lyme.

 

Did Dr. Fallon use the Igenex lab and only that lab? What if there is something faulty with Quest's design for Band 41? I mean, if the consensus is the Quest Western Blot is no good, maybe many of these Band 41's are questionable???

[sf_mom]

Like DCMom I had no idea Lyme Disease could be a possibility for my son's sudden on-set prior to pursuing IVIG (he presented classic PANDAS with a strep trigger although no elevated anti-DNase-. I've been posting relentlessly about Lyme because I'm hoping to save some people the time, energy and money of pursuing PANDAS Dr. and expensive treatments. AND, potentially help those that have pursued expensive treatments and are failing after IVIG to throughly rule out Lyme. I also know LLMD are much more available than PANDAS Dr., have been willing to help even with IVIG treatments if needed, understand long term usage of antibiotics and side effects.... can help with ALL of the testing in advance of PANDAS diagnoses.

 

• You should test your child for Lyme/co-infections via Igenex if you are new to the board and not had IVIG treatments
  
• You should test for Lyme if child is regressing post hdIVIG or PEX
  
• You should test for Lyme if any parent 'especially Mother' suffers from MS, Chronic Fatigue, Fibromylgia or any other auto-immune illness.
  
• You should test for Lyme if family members are suffering from resolvable high strep titers
  

I am a little frustrated that after having spelled out my symptoms to several Dr.'s that Lyme or congenital Lyme was not considered for our family. One expert felt... I shared the illness with my children, one felt my symptoms were the on-set of Rheumatoid Arthritis, one said it was auto-immune and to see if there was a correlation with my symptoms and being ill. What is frightening to me is there are other similar stories 'not currently posting' to ours and appear to be congenital LYME. I hope at some point in the future these people will come forward and share their stories. BY THE WAY, many top LYME Dr.'s believe its sexually transmitted and are not openly discussing due to current politics and lack of long term studies.

 

I am not sure its congenital Lyme yet for our family but can assure you I'll be posting about it one way or the other in the near future.

Edited August 4, 2010 by SF Mom

[mom2gsd]

I do plan to spray the yard for tics- and keep the deer out (although I know deer are not the only animal that carries these ticks_.

 

I have concerns with using deet on the kids on a daily basis. I will certainly keep them out of taller grass, etc. Any ideas of something less toxic to use on the kids?

 

There are some natural repelents, you might want to do a search. As far as yard control....diatomaceous earth is great stuff (only use food grade), you might goggle it too. I'm using it on my dogs and cat this summer.....not one tick or flea yet this season!

[philamom]

My recommendation for people who have yet to do IVIG/PEX is to atleast have the Igenex Western Blot ($260) done. If it comes back negative, just realize it could still be Lyme (due to numerous reasons). If after treatments (3-6 months) you see little progress, consider re-testing for Lyme with co-infections.

[sf_mom]

If you go down this route.... find a LLMD for your area and forget about the Pediatrician. Co-infections panels vary depending on where you live and the extent of testing. We spent an additional $800 dollars on our co-infection panel. Hopefully, you could get some $$s back from insurance.

[JAG10]

Like DCMom I had no idea Lyme Disease could be a possibility for my son's sudden on-set prior to pursuing IVIG (he presented classic PANDAS with a strep trigger although no elevated anti-DNase-. I've been posting relentlessly about Lyme because I'm hoping to save some people the time, energy and money of pursuing PANDAS Dr. and expensive treatments. AND, potentially help those that have pursued expensive treatments and are failing after IVIG to throughly rule out Lyme. I also know LLMD are much more available than PANDAS Dr., have been willing to help even with IVIG treatments if needed, understand long term usage of antibiotics and side effects.... can help with ALL of the testing in advance of PANDAS diagnoses.

 

• You should test your child for Lyme/co-infections via Igenex if you are new to the board and not had IVIG treatments
• You should test for Lyme if child is regressing post hdIVIG or PEX
• You should test for Lyme if any parent 'especially Mother' suffers from MS, Chronic Fatigue, Fibromylgia or any other auto-immune illness.
• You should test for Lyme if family members are suffering from resolvable high strep titers

I am a little frustrated that after having spelled out my symptoms to several Dr.'s that Lyme or congenital Lyme was not considered for our family. One expert felt... I shared the illness with my children, one felt my symptoms were the on-set of Rheumatoid Arthritis, one said it was auto-immune and to see if there was a correlation with my symptoms and being ill. What is frightening to me is there are other similar stories 'not currently posting' to ours and appear to be congenital LYME. I hope at some point in the future these people will come forward and share their stories. BY THE WAY, many top LYME Dr.'s believe its sexually transmitted and are not openly discussing due to current politics and lack of long term studies.

 

I am not sure its congenital Lyme yet for our family but can assure you I'll be posting about it one way or the other in the near future.

 

Wendy,

 

Thank you so much for sharing your family's story, your honesty and persistence. It sounds like you are saying LLMD's are good candidates to also encompass PANDAS within there scope of practice? Wouldn't that be fab!!!

 

Not sure if I was reading between the lines correctly or not.... do you think those w/PANDAS that fail to have an anti-DNAse B rise are more likely to have Lyme involvement?

 

Are there lyme studies that involve people who test positive, but don't have any symptoms? Sexually transmitted is a scary thought; my BIL has had Lyme since 2002, but my SIL has no lyme disease symptoms.

 

One thing we here have all learned the hard way; the collective "we" must keep an open mind to all possibilities otherwise that is how children go sick and mistreated.

 

Jill

[philamom]

Like DCMom I had no idea Lyme Disease could be a possibility for my son's sudden on-set prior to pursuing IVIG (he presented classic PANDAS with a strep trigger although no elevated anti-DNase-. I've been posting relentlessly about Lyme because I'm hoping to save some people the time, energy and money of pursuing PANDAS Dr. and expensive treatments. AND, potentially help those that have pursued expensive treatments and are failing after IVIG to throughly rule out Lyme. I also know LLMD are much more available than PANDAS Dr., have been willing to help even with IVIG treatments if needed, understand long term usage of antibiotics and side effects.... can help with ALL of the testing in advance of PANDAS diagnoses.

 

• You should test your child for Lyme/co-infections via Igenex if you are new to the board and not had IVIG treatments
• You should test for Lyme if child is regressing post hdIVIG or PEX
• You should test for Lyme if any parent 'especially Mother' suffers from MS, Chronic Fatigue, Fibromylgia or any other auto-immune illness.
• You should test for Lyme if family members are suffering from resolvable high strep titers

I am a little frustrated that after having spelled out my symptoms to several Dr.'s that Lyme or congenital Lyme was not considered for our family. One expert felt... I shared the illness with my children, one felt my symptoms were the on-set of Rheumatoid Arthritis, one said it was auto-immune and to see if there was a correlation with my symptoms and being ill. What is frightening to me is there are other similar stories 'not currently posting' to ours and appear to be congenital LYME. I hope at some point in the future these people will come forward and share their stories. BY THE WAY, many top LYME Dr.'s believe its sexually transmitted and are not openly discussing due to current politics and lack of long term studies.

 

I am not sure its congenital Lyme yet for our family but can assure you I'll be posting about it one way or the other in the near future.

 

Wendy,

 

Thank you so much for sharing your family's story, your honesty and persistence. It sounds like you are saying LLMD's are good candidates to also encompass PANDAS within there scope of practice? Wouldn't that be fab!!!

 

Not sure if I was reading between the lines correctly or not.... do you think those w/PANDAS that fail to have an anti-DNAse B rise are more likely to have Lyme involvement?

 

Are there lyme studies that involve people who test positive, but don't have any symptoms? Sexually transmitted is a scary thought; my BIL has had Lyme since 2002, but my SIL has no lyme disease symptoms.

 

One thing we here have all learned the hard way; the collective "we" must keep an open mind to all possibilities otherwise that is how children go sick and mistreated.

 

Jill

 

 

Jill-

We are seeing an integrative doctor in the area who also specializes in Lyme. The doctor was recommended by our local Lyme chapter. I'll let you know how it goes.

Melinda

[sf_mom]

Jill,

 

The LLMD in our area are definitely willing to help. I'm not sure about the anti-DNase-B, I just know we didn't investigate Lyme properly in advance hdIVIG treatments. There are some people that can manage Lyme without problems for years.

 

-Wendy

[thereishope]

I have not tested my son for Lyme. I do not believe there is a reason to test him since he, for the most part, is textbook PANDAS. So, even though I cannot answer your question about actually testing negative for Lyme, I would catagorize my son as being PANDAS only.

 

We've been hearing from lots of folks who's kids have been diagnosed with PANDAS, tested in the PANDAS range on Cunningham test, tested negative (or positive ) on Western Blot, and then tested positive with IGENEX testing.

 

I am wondering if any PANDAS kids have tested negative on IGENEX. Would this be worth running a survey on?

Edited August 4, 2010 by Vickie

[smartyjones]

Not sure if I was reading between the lines correctly or not.... do you think those w/PANDAS that fail to have an anti-DNAse B rise are more likely to have Lyme involvement?

Jill

 

 

not sure that i can give an opinion on your question, but just to say ... my son had high ASO and anti-DNase B, active strep infection at time of onset, 100% remission on keflex. . . AND. . . diagnosed with Lyme 9 month-ish later.

 

i am hopeful the NIHM conferenece will be a bit of a turning point for a change from PANDAS to PITANDS. i think all the infectious components need to be addressed. i think the major drs are treating "autoimmune neurological disorder" as opposed to "associated with strep". however, i find the "infection triggered" to need much attention.

 

we were not really looking further b/c we did have such clear strep indicators. i asked Dr. T about this and he responded that you can always do more tests, possibly find something, possibly find "false positive" (not so sure should be a reason to not test) and it is very expensive. i do agree. i also believe there can be many infections causing trouble.

[faith]

SFmom,

just to clarify, not clear to what you're saying re your child, are you now just investigating lyme, or hve had the testing and are persuing treatment?

 

we have had the lyme on regular western blot and all was negative. havn't had the Igenex....