What Igenex tests? Will antibiotics affect results?

[eljomom]

Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back.

 

DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative.

 

DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me.

 

So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)?

 

Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics?

 

Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?)

 

Thanks.

[chodnett]

To save frustration. I would go ahead and make appt. with good LLMD and he will do all the testing necessary. I am positive you will get the proper treatment.

[eljomom]

If only there was one nearby, who was middle of the road in diagnosing/treating Lyme. This is another area I am a bit skeptical of.

 

To save frustration. I would go ahead and make appt. with good LLMD and he will do all the testing necessary. I am positive you will get the proper treatment.

[chodnett]

Skeptical about LYME?

Your children have symptoms that are unexplained. Clinically if they do better on LYME treatment they have LYME. Do not doubt yourself. We travel to another state for help. Not convenient, but 5 years of seeing many doctors and following their protocols--seeing some relief, not much. With LYME treatment working never backsliding. I cannot believe it took me 5 years to get to the right diagnosis. We went to LLMD without testing. DD 13 with PANDAS treatment and Tourettes diagnosis?? (I now know TS is not a diagnosis) there is NO blood test 4 it!!!

Listening to Dr's who have been pushing prescription drugs all along the way to my then 9 year old is unfathomable now. She is on Lyme treatment with antibiotic therapy. SHE IS 90% better and no backsliding. Her major symptoms were TICS. I would say behaviors behind the TICS. LYME is real. I do not understand the mystery behind it. I do not care I just want to heal my family of this awful disease. I also have to say they have congenital LYME. I have LYME too and I had NO idea. I have never felt better 8 months into treatment. My Pandas D has exact same bands I do?? I cried when I saw the test results. Then my other childrens complaints have all but disappeared. GO figure? its LYME.

 

I would not go to middle of the road LLMD. I would go to the best you can get to. Get in touch with ILADS. They will help.

Edited September 16, 2011 by chodnett

[momcap]

We were in a similar place as you are now - a PANDAS diagnosis, and antibiotics not helping enough, ready to consider immune modulating treatments. I wasn't sold on lyme, but searching for answers and considering it. I was especially worried about an LLMD, because our experience with EVERY doctor we've seen has been that they see things through their specialty. DS has been misdiagnosed with so many things. I didn't want to fall into that trap again. And his Lyme WB came back negative, so I was ready to move on. But one of the moms here encouraged me to test myself incase my kids have congenital lyme. I was willing to try just about anything before IVIG. So I guess I'm lucky that MY lyme test came back CDC positive, so there was no room for doubt. We practically ran to the nearest LLMD, which is a 12 hour drive into the U.S. Ugh. Please see my post from 2 days ago "Seeing Amazing Progress". We are truly seeing amazing progress in PANDAS DS! We retested through IGeneX and he's IGeneX positive, but not CDC positive. All 3 of my kids are positive via IGeneX.

 

Our LLMD only asked us for the lyme western blot IgG and IgM, which it sounds like you've already done. INDs (which is a very weak positive in my opinion) on lyme specific bands and some positives sure sounds like a good reason to visit an LLMD, no matter how far away they are. Have you tried contacting ILADS to see if there's an LLMD closer to you? The LLMD would be the best person to suggest which tests, so you don't waste money ordering ones that aren't worth while. As far as antibiotics affecting results, you can contact IGeneX directly and they can give you that information. I know for the WB it doesn't matter.

 

Good luck!

[SSS]

Skeptical about LYME?

Your children have symptoms that are unexplained. Clinically if they do better on LYME treatment they have LYME. Do not doubt yourself. We travel to another state for help. Not convenient, but 5 years of seeing many doctors and following their protocols--seeing some relief, not much. With LYME treatment working never backsliding. I cannot believe it took me 5 years to get to the right diagnosis. We went to LLMD without testing. DD 13 with PANDAS treatment and Tourettes diagnosis?? (I now know TS is not a diagnosis) there is NO blood test 4 it!!!

Listening to Dr's who have been pushing prescription drugs all along the way to my then 9 year old is unfathomable now. She is on Lyme treatment with antibiotic therapy. SHE IS 90% better and no backsliding. Her major symptoms were TICS. I would say behaviors behind the TICS. LYME is real. I do not understand the mystery behind it. I do not care I just want to heal my family of this awful disease. I also have to say they have congenital LYME. I have LYME too and I had NO idea. I have never felt better 8 months into treatment. My Pandas D has exact same bands I do?? I cried when I saw the test results. Then my other childrens complaints have all but disappeared. GO figure? its LYME.

 

I would not go to middle of the road LLMD. I would go to the best you can get to. Get in touch with ILADS. They will help.

 

 

***I love this post. I can so relate. Except for the recovery part, we are early in the new dx, just starting. Lyme seemed SO far out there to me. But the pandas treatments were not holding.

Turns out I am chronic Lyme, in a mess of a state, living with it, calling it everything else. What a long, strange trip it has been.

Also wanted to add: What I am loving about our LLMD for my dd6, he REALLY knows the immune system- her top issues before we can even get to the Lyme were a defective gene in the MTHR pathway, not allowing her body to fully detox itself, high viral load, and parasites.

We are treating these all right now, and I am seeing progress.

To me, he is a DAN! Doctor x10. We were with a famous DAN! (and I loved him personally) but for the previous $$ 10 months did not see these things as an issue- and they are.

Our trip is 3 hour drive each way- it is a full day event, pulled out of school, finding care for our youngest- and Labor day Friday I got caught in the traffic, took me 5 hours drive home. I know many it takes longer, plane flights- but I am a pansy when it comes to this kind of driving, and asked for phone appts. later on- but you know what? I want to actually see in person now, and do the drives without complaining- which is a miracle, it is so worth it.

Sorry, this is not directed at original OP- I am just rambling- really liked this post.

Edited September 16, 2011 by S & S

[philamom]

First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

[chodnett]

First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

 

I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year.

 

But the best LLMD is always worth it in the end.

 

I personally went to the only 2 that are within a 2 state radius for me and I live in texas .

 

There is no one here.

 

But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean.

So far it has worked.

Edited September 16, 2011 by chodnett

[philamom]

First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

 

I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year.

 

But the best LLMD is always worth it in the end.

 

I personally went to the only 2 that are within a 2 state radius for me and I live in texas .

 

There is no one here.

 

But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean.

So far it has worked.

I'm sorry - my response was to eljomom. I think she lives near CT. I could be wrong -- terrible memory .

Edited September 16, 2011 by philamom

[Priscilla]

First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

 

I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year.

 

But the best LLMD is always worth it in the end.

 

I personally went to the only 2 that are within a 2 state radius for me and I live in texas .

 

There is no one here.

 

But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean.

So far it has worked.

amen sister- we are doing the same- abx, kefir, organic healthy diet, and plenty of exercise......doing well with that, can't wait to start weaning abx though

[chodnett]

First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

 

I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year.

 

But the best LLMD is always worth it in the end.

 

I personally went to the only 2 that are within a 2 state radius for me and I live in texas .

 

There is no one here.

 

But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where

 

 

 

 

 

America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean.

So far it has worked.

I'm sorry - my response was to eljomom. I think she lives near CT. I could be wrong -- terrible memory .

 

No worries. I was just commenting, thats all. ))

[chodnett]

Skeptical about LYME?

Your children have symptoms that are unexplained. Clinically if they do better on LYME treatment they have LYME. Do not doubt yourself. We travel to another state for help. Not convenient, but 5 years of seeing many doctors and following their protocols--seeing some relief, not much. With LYME treatment working never backsliding. I cannot believe it took me 5 years to get to the right diagnosis. We went to LLMD without testing. DD 13 with PANDAS treatment and Tourettes diagnosis?? (I now know TS is not a diagnosis) there is NO blood test 4 it!!!

Listening to Dr's who have been pushing prescription drugs all along the way to my then 9 year old is unfathomable now. She is on Lyme treatment with antibiotic therapy. SHE IS 90% better and no backsliding. Her major symptoms were TICS. I would say behaviors behind the TICS. LYME is real. I do not understand the mystery behind it. I do not care I just want to heal my family of this awful disease. I also have to say they have congenital LYME. I have LYME too and I had NO idea. I have never felt better 8 months into treatment. My Pandas D has exact same bands I do?? I cried when I saw the test results. Then my other childrens complaints have all but disappeared. GO figure? its LYME.

 

I would not go to middle of the road LLMD. I would go to the best you can get to. Get in touch with ILADS. They will help.

 

 

***I love this post. I can so relate. Except for the recovery part, we are early in the new dx, just starting. Lyme seemed SO far out there to me. But the pandas treatments were not holding.

Turns out I am chronic Lyme, in a mess of a state, living with it, calling it everything else. What a long, strange trip it has been.

Also wanted to add: What I am loving about our LLMD for my dd6, he REALLY knows the immune system- her top issues before we can even get to the Lyme were a defective gene in the MTHR pathway, not allowing her body to fully detox itself, high viral load, and parasites.

We are treating these all right now, and I am seeing progress.

To me, he is a DAN! Doctor x10. We were with a famous DAN! (and I loved him personally) but for the previous $$ 10 months did not see these things as an issue- and they are.

Our trip is 3 hour drive each way- it is a full day event, pulled out of school, finding care for our youngest- and Labor day Friday I got caught in the traffic, took me 5 hours drive home. I know many it takes longer, plane flights- but I am a pansy when it comes to this kind of driving, and asked for phone appts. later on- but you know what? I want to actually see in person now, and do the drives without complaining- which is a miracle, it is so worth it.

Sorry, this is not directed at original OP- I am just rambling- really liked this post.

Thank You for sharing. Cheers together )

[eljomom]

No, I'm in Virginia. I'm with you all....simple and easy would be nice.

 

First of all, I want to offer you a cyber hug - I read your earlier posts on the pandas forum. I didn't have a chance to read the above responses - but was wondering if your insurance will cover any of it. I'm fortunate, where our insurance covers most of the Igenex cost. If not, you might want to consider putting the expense towards an llmd visit instead. Are you close to Dr. J? If I remember correctly your child was + (or IND) on band 83-93. Dr. J feels band 83 is HIGHLY suggestive of Bb. Before our appt. with Dr. J I ran the Igenex lyme western blot test with our ped (positive) and when I was still skeptical - ran the band 31 epitope (negative). When we finally went to see Dr. J, he said it was a waste of money to run the epitope because band 83-93 is very suggestive of lyme. He went on to find Bartonella & Rickettsia. But it comes down to your decision.

 

I would LOVE to see Dr. J. However, He is way to far for family of 5 to travel to get better multiple times a year.

 

But the best LLMD is always worth it in the end.

 

I personally went to the only 2 that are within a 2 state radius for me and I live in texas .

 

There is no one here.

 

But I wanted to see both to decide who was the best to treat my kids. They have already been through so much. I did not want to take them to some wierdo place in the middle of No where America. I was happy I did. And zeroed in on the one that works best for our family. I chose not to go the route of taking 20 different pills a day for my kids. We try to keep things simple antibiotics, probiotics, eat healthy and clean.

So far it has worked.

I'm sorry - my response was to eljomom. I think she lives near CT. I could be wrong -- terrible memory .

[lfran]

You can call Igenex and ask them about specific tests and whether or not antibiotics are okay. After you get your results, you can even call on a Monday or Tuesday and talk to the lab director (Dr. Harris) about your results. He does that often -- you just have to ask.

 

My son took the urine dot blot while on antibiotics --- many llmds specifically recommend to be on antibiotics for this test. That showed up positive for lyme -- they capture the shed antigen in the urine. They suggest doing three urine captures at $70 a pop -- we did two and were positive on one and negative on the other. But that was positive for lyme according to the lab. They suggest three because it can be hit or miss as to whether a particular urine sample will have the antigen -- but for $210, it's not an expensive test (as those things go) and that was our smoking gun.

 

We did the new coinfection panel too and he was on abx at the time. All was negative except Bartonella antibodies. Just sent in for a follow-up test this week after 3 months on rifampin (anti-bartonella abx). So abx are okay for all of these, as far as I know. But call Igenex and ask -- it takes a couple of weeks to get results back, and I know you are in a place now that you want answers, so I would move forward with the testing while you wait for the LLMD appt. If you get postitives, then you will have reassurance in your decision to go forward. If you get negatives but trust the LLMD and the LLMD thinks it your child is clinically postive for lyme or bart or others, then you can weigh that info as best you can.

 

Best of luck. Most of us have been there. I for one am extremely glad we did the testing, even though it was all out of pocket and hurt financially.

 

I know this is hard. We tried various things for years with no real improvement. We finally bit the bullet and went forward -- I kept thinking that if I had started him on lyme protocol when he was 8 (he's 10 now), then it would all be behind us and the me of now would be thanking the me of then. So....the me of 2013 is going to thank the me of 2011 (at least, she better! )

 

 

Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back.

 

DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative.

 

DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me.

 

So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)?

 

Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics?

 

Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?)

 

Thanks.

[philamom]

Ifran - and I'm sure he'll thank all of you!

 

What supplements are you using these days? thx