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Help interpreting IGENEX results


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My 7 year old daughter had Igenex results in Sept. 2010 as follows:

 

Western Blot IgM:

41 = IND

58 = +

 

Western Blot IgG

41 = IND

58 = ++

 

All co-infections were negative.

 

I should note that she was diagnosed with PANDAS a year ago. Had a CamK score of 150, with high Anti-lysoganglioside of 640. Antibiotics helped lessen her PANDAS symptoms (mostly tics) in severity and somewhat in frequency, but not to an acceptable level. She responded well to a 5 day steriod taper...so-so to a 30 day taper. She's had 4 high does (1.5) IVIg treatments since Sept. Mild improvement after #1, great improvement after #2, slight decline after #3 (coincided with strep exposure at home and at school), and immediate steep decline after #4.

 

We initially went ahead with IVIg in the fall b/c we were told her IgeneX testing was negative. Given her up and down response to IVIg, we're now taking another look at Lyme. We are going to have her re-tested in a couple of weeks (once IVIg is out of her system). Other than Western Blot & coinfections, should we test anything else?

 

I know the above doesn't scream Lyme, but I've always felt unsettled that she had any positive bands.

 

I should also note that she's immune deficient (CVID), has high C3D levels (57 - when they should be between 0-8), and has been constantly exposed to strep & mycoplasma by my son and my husband, whose titers have been high for the past year...but are finally on the decline due to daily abx.

 

Any thoughts / insight is appreciated.

 

Thanks!

Edited by worriedmommy
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I would worry about what those binding immune complexes are attaching too. As you may know, its common to have a false negative Lyme results with immune complexes. I think it would be best to pursue an LLMD and go about testing via provocation... There is a couple of ways to do that but you would potentially need the assistance of a Dr. With provocation you could load them up with antibiotics or herbs and look for antigens or DNA in urine. These specific tests are the Dot Blot or Urine PCR via Igenex. You could also try three months of combo antibiotics and recheck for via Igenex WB to see if you have more positive bands giving you further confidence you are on the right track.

 

A another simple thing to do on your own.... Purchase Samento http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=5 Add one drop to water in the a.m. and p.m. and work up to 15 drops over two weeks. Watch for symptom to .increase or comments of just not feeling well.

 

Where do you live?

 

-Wendy

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I live in New Hampshire.

 

My daughter is currently on both Azith & Omnicef daily. (She's been on daily antibiotics for the past 12 months). We were planning to retest the western blot through IgeneX in a few weeks. Would it make sense to add the Dot Blot and/or urine PCR to that testing? Can she be on antibiotics leading up to those tests?

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How long has she been on Azithro/Omnicef combo and what was her response: worse... then better, still worse? If she's been on it for at least three month you may already have converted results. However, my friends son is 10 months into Lyme treatment (huge improvements) and they are still hoping for converted results (he is positive for Bartonella and IND for Lyme). So, you may or may not see an additional Lyme specific bands pop up with antibody testing.

 

With the Dot Blot/PCR Urine testing they are loading up on antibiotics to create die-off into urine. So they would probably add to your Daughter's current antibody regimen to help. For my husband they did two antibiotic shots the first day (one was Bacillin), Dorxy, Azithro and Tindamax for the next six days. We did something similar for my son but I can't remember exact protocol.

 

Have you seen an LLMD yet? If not do you have one in mind? If so, have you called to get on wait list? My general feeling is she'd be well served to see if Lyme protocol helps. Unfortunately, it may take up to six months or longer to know if there is improvement.

 

-Wendy

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How long has she been on Azithro/Omnicef combo and what was her response: worse... then better, still worse? If she's been on it for at least three month you may already have converted results. However, my friends son is 10 months into Lyme treatment (huge improvements) and they are still hoping for converted results (he is positive for Bartonella and IND for Lyme). So, you may or may not see an additional Lyme specific bands pop up with antibody testing.

 

With the Dot Blot/PCR Urine testing they are loading up on antibiotics to create die-off into urine. So they would probably add to your Daughter's current antibody regimen to help. For my husband they did two antibiotic shots the first day (one was Bacillin), Dorxy, Azithro and Tindamax for the next six days. We did something similar for my son but I can't remember exact protocol.

 

Have you seen an LLMD yet? If not do you have one in mind? If so, have you called to get on wait list? My general feeling is she'd be well served to see if Lyme protocol helps. Unfortunately, it may take up to six months or longer to know if there is improvement.

 

-Wendy

 

She went on Azith in April 2010. Then from July 2010 - Nov 2010 was on Azith/Omnicef combo. In Dec 2010 we scaled her back to just Azith, and this lasted until last month. On 3/19/11 we went back to the Azith/Omnicef combo.

 

Since starting the combo last month, she's doing terrible. (This being said, we started to see an increase in symptoms the night of 3/18, when she was just on Azith...we added the Omnicef on 3/19.) After that things got REALLY bad (tic wise)...probably at their worst 1-2 weeks after. Now she's ever so slightly better, but still overall bad. She's ticcing all day long...very sad.

 

We haven't seen a LLMD. I have an appt with a ND, Dr. Hecht in Portsmouth, who is apparently a LLD, but I haven't heard the best reviews on him. Do you know of any in the New England area? I know Dr. Jones is in CT, and I'm going to call to get on the wait list, but I've heard he's booking in Aug. I'd like to get in somewhere sooner.

 

Honestly, I feel desperation setting in.... I really thought we were on a good path last year after IVIg #2 resulted in substancial improvement from PANDAS symptoms. Now, we're just in a downward spiral. I keep hearing stories of kids who don't respond great to PANDAS treatments, but once treated for Lyme really improve. I almost want this to be Lyme so that there is "hope" she'll get better.

Edited by worriedmommy
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Since starting the combo last month, she's doing terrible. (This being said, we started to see an increase in symptoms the night of 3/18, when she was just on Azith...we added the Omnicef on 3/19.) After that things got REALLY bad (tic wise)...probably at their worst 1-2 weeks after. Now she's ever so slightly better, but still overall bad. She's ticcing all day long...very sad.

I suspect the Azithro alone wasn't enough and you had a regression or new exposure.... You then added Omnicef back in and she herx'd. Unfortunately, if the Lyme results weren't positive back in Sept when she was on combo'd antibiotics for some time I worry you'd only end up with the same result if tested for antibodies again. I'd try alternative testing with her of Dot Blot or Urine PCR.

 

We haven't seen a LLMD. I have an appt with a ND, Dr. Hecht in Portsmouth, who is apparently a LLD, but I haven't heard the best reviews on him. Do you know of any in the New England area? I know Dr. Jones is in CT, and I'm going to call to get on the wait list, but I've heard he's booking in Aug. I'd like to get in somewhere sooner.

 

I don't know anything about this Dr. Hecht. Hopefully, someone in your area can make a recommendation that might get you in sooner than the Jones appointment. With that said, Azithro/Omnicef combo is good for treating Bartonella/Lyme and I'd not change that until you get her to someone qualified to evaluate her properly for Lyme/co-infections. She also needs a good viral panel done because of her response to band 58. There could be so much more at play than just strep. With my kids we have HHV6 and Coxsackies both common viruses that present issues with chronic Lyme.

 

I really thought we were on a good path last year after IVIg #2 resulted in substancial improvement from PANDAS symptoms. Now, we're just in a downward spiral. I keep hearing stories of kids who don't respond great to PANDAS treatments, but once treated for Lyme really improve. I almost want this to be Lyme so that there is "hope" she'll get better.

 

You would not be alone in your experience with hdIVIG. I have heard this happening with others that truly have a chronic infection and sometimes it is not until the third or fourth treatment. Again, its truly been a case by case basis.... I can not explain why its happening but our LLMD felt potential cytokine storm. Many of us are finding the further we are out from IVIG treatments the better our kids are doing. It can take some time for those TICs to resolve but they do eventually fade with proper treatment. Regardless of test results I think your daughter would be well served by an extended trail of combo'd antibiotics. BUT, it can take 6 to 9 months to see improvement and sometimes there needs to be antibiotic rotations involved during that time frame.

 

Also are you doing anything for detox? We can all make some recommendations to help with symptoms if needed.

 

Wishing you all the best. Her reaction to the recent rotations of antibiotics has to give you confidence this might be Lyme.

 

-Wendy

Edited by SF Mom
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SF Mom....can you elaborate on Band 58 being a viral indicator? WE were + Band 58 and 66, as well as 41 and 30,and IND Band 83-93, and 34. Does this mean your child had ACTIVE viral infections during Lyme testing?

 

 

Since starting the combo last month, she's doing terrible. (This being said, we started to see an increase in symptoms the night of 3/18, when she was just on Azith...we added the Omnicef on 3/19.) After that things got REALLY bad (tic wise)...probably at their worst 1-2 weeks after. Now she's ever so slightly better, but still overall bad. She's ticcing all day long...very sad.

I suspect the Azithro alone wasn't enough and you had a regression or new exposure.... You then added Omnicef back in and she herx'd. Unfortunately, if the Lyme results weren't positive back in Sept when she was on combo'd antibiotics for some time I worry you'd only end up with the same result if tested for antibodies again. I'd try alternative testing with her of Dot Blot or Urine PCR.

 

We haven't seen a LLMD. I have an appt with a ND, Dr. Hecht in Portsmouth, who is apparently a LLD, but I haven't heard the best reviews on him. Do you know of any in the New England area? I know Dr. Jones is in CT, and I'm going to call to get on the wait list, but I've heard he's booking in Aug. I'd like to get in somewhere sooner.

 

I don't know anything about this Dr. Hecht. Hopefully, someone in your area can make a recommendation that might get you in sooner than the Jones appointment. With that said, Azithro/Omnicef combo is good for treating Bartonella/Lyme and I'd not change that until you get her to someone qualified to evaluate her properly for Lyme/co-infections. She also needs a good viral panel done because of her response to band 58. There could be so much more at play than just strep. With my kids we have HHV6 and Coxsackies both common viruses that present issues with chronic Lyme.

 

I really thought we were on a good path last year after IVIg #2 resulted in substancial improvement from PANDAS symptoms. Now, we're just in a downward spiral. I keep hearing stories of kids who don't respond great to PANDAS treatments, but once treated for Lyme really improve. I almost want this to be Lyme so that there is "hope" she'll get better.

 

You would not be alone in your experience with hdIVIG. I have heard this happening with others that truly have a chronic infection and sometimes it is not until the third or fourth treatment. Again, its truly been a case by case basis.... I can not explain why its happening but our LLMD felt potential cytokine storm. Many of us are finding the further we are out from IVIG treatments the better our kids are doing. It can take some time for those TICs to resolve but they do eventually fade with proper treatment. Regardless of test results I think your daughter would be well served by an extended trail of combo'd antibiotics. BUT, it can take 6 to 9 months to see improvement and sometimes there needs to be antibiotic rotations involved during that time frame.

 

Also are you doing anything for detox? We can all make some recommendations to help with symptoms if needed.

 

Wishing you all the best. Her reaction to the recent rotations of antibiotics has to give you confidence this might be Lyme.

 

-Wendy

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Taken from Dr. Jones Website. http://www.drjoneskids.com/

 

Band 58 unknown but may be a heat-shock Bb protein- Check for viral infections.

 

My children have several viruses that present problems along with Lyme. In our situation its HHV6 and Coxsackies 'Foot and Mouth'. You can run a viral panel and test specific for Corxsackies Titers.

 

-Wendy

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