LYME RESULTS

[Santi]

Hello- I just had my 8 year old son tested for Lyme at Igenex (basic panel). He has severe psychiatric issues for years (ADHD, MOOD DISORDER, TICS, ANXIETY, etc.) I was wondering if anyone could help try to interpret. Does it look like he may potentially have LYME or further testing needed? Here are the results:

 

IFA, B Burgd. 40 Equivocal

IGM Positive (3 IND's & 6 +'s)

CDC/NYS Negative

IGG Negative

CDC Negative

 

Can anyone make sense of this? SHould I have done the CD57 test? Andrea

[lyme_mom]

If there are any Lyme specific bands it is reason to treat for Lyme if you have symptoms. Sounds like your child has a lot of bands. Do you know which bands?

[Santi]

Hello-

 

Yes, these are the bands:

 

18kda -

**23-25 IND

28 -

30+

**31 +++

**34-

**39 IND

**41 IND

45-

58-

66+

**83-93+

 

Have no idea what all this means??? What to do next? Andrea

[michiganpandas]

How in the world would you interpret this? is it always accurate? why don't infectious disease doctors use this test? do you order this test and then send it back in the mail? also, does everyone test positive on some bands? sorry to not answer your question and to ask more.....but, i'm considering looking further into lyme and just not sure

[Santi]

How in the world would you interpret this? is it always accurate? why don't infectious disease doctors use this test? do you order this test and then send it back in the mail? also, does everyone test positive on some bands? sorry to not answer your question and to ask more.....but, i'm considering looking further into lyme and just not sure

I am 100% new to this. Have no idea.

[LNN]

Under helpful threads at the top of the forum, there's this link

Explaining Western Blot tests: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

WB for Lyme: http://www.anapsid.org/lyme/wb.html

 

Understanding the WB: http://www.lymenet.de/labtests/brenner.htm

 

Bands 31 and 39 are highly lyme specific and 31 is generally seen as an indication you've had lyme for a year or more. While the overall report may say "negative", most lyme doctors would consider your son's results, combined with the symptoms you report, suggestive of lyme.

I would contact www.ilads.org, go to the "contact us" tab and send them an email, asking for referrals within a radius of your zip code. They will send you 3 referrals. You can also go to www.lymenet.org to the section "seeking a doctor" and post a request. It's a very large forum and you can get referrals as well as opinions.

 

While you may be on the fence, it often takes 6-8 weeks to get an appt., so I would make an appt this week and then spend time researching (as opposed to the other way around). You can also ask to be put on a waiting list and often you can get an appt w/in 2 weeks if you can be flexible and go in short notice if there's a cancellation.

 

MichiganPandas - At least one of the links I posted explains the reliability of these tests. As for why infectious disease docs don't use Igenex, there's a schism in the lyme world. Some doctors follow ILADS guidelines for diagnosing and treating lyme and others use IDSA guidelines. Most infectious disease docs fall in the IDSA camp, which doesn't believe in chronic lyme. To understand the schism and learn a great deal about lyme, I highly highly recommend "Cure Unknown" by Pamela Weintraub. You can get a cliff notes version of her story by reading this article http://www.astralgia.com/pdf/EL_Lyme.pdf

 

You can get an Igenex test kit by calling Igenex. They will send you the kit and a FedEx return package. You get a blood draw and fedEx the kit back to them with payment. They then send you a document that you can use to submit your own claim for insurance reimbursement. However, you need a doctor to sign the order form. If you are seeing a Pandas doc, they generally agree to order the test.

 

Neurolyme and/or bartonella (another tick borne illness) have many symptoms that mirror Pandas symptoms. Nearly every member of this forum started out on the Pandas trail. Rather than debate an either/or scenario, many of us have come to see it as a chicken/egg thing, with our kids getting lyme and then strep or the other way around, and the one-two punch was more than the immune system could handle, resulting in a cascade of autoimmune issues and chronic illness. But we've slowly seen our kids get better by expanding the treatments we're using to include lyme, other tick-borne illnesses, mold, and mineral/vitamin deficiency called KPU (kryptopyroleuria). You unfortunately have to do a lot of digging to find your unique puzzle pieces, but generally a good LLMD (lyme literate doctor) can help you much more than a traditional pediatrician.

 

There is much to learn and it can feel overwhelming. As if Pandas weren't complex and controversial enough...now you're supposed to embrace lyme? It's a kick in the gut. But being on the right track for your child is the only way through the darkness. So lyme and these other things are worth exploring - to either treat or rule out. There's no single "right" answer. Just "right" answers for your unique situation.

Edited July 23, 2011 by LLM

[Suzan]

This info may be in the linds LLM just provided but I found this that I had found helpful when I got my tests back...

 

MEANING OF IGENEX TEST:

 

The following is a breakdown of the Western blot only. As co-infections will show their own titers.

 

IgM is a sign of a current infection.

 

IgG can be a sign of a current infection if symptomatic, or of a past exposure to or past infection by the organism.

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

 

PLEASE BE AWARE MANY LLMD'S CONSIDER A BAND THAT IS 'IND' AS POSITIVE, IGENEX TEST READS 'IND's' ARE SIGNIFICANT AND DOES NOT INDICATE A NEGATIVE.

 

IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test.

 

If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses.

 

In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses.

 

There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands):

 

18 23 30 31 34 37 39 83 and 93.

 

Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.

 

(More info pages 12 & 13 "Western Blot Made Easy":

 

http://www.publichealthalert.org/PHA%20JUNE%2007.pdf )

 

Igenex Western Blot Break Down by band

 

9 cross-reactive for Borrellia

12 specific for Bb

18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above)

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and one California strain - Has cross-reactivity with several different types of viruses

31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses

34 outer surface protein B (Osp; specific for Bb

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info)

45 cross-reactive for all Borellia

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]

 

An IgM positive test result means more recent & likely currently active infection.

 

IgG positive means previous exposure to the bacteria or older infection of Lyme.

 

If no symptoms are present with IgG positive, it may mean an "inactive" LD infection.

 

No matter the results, please remember LD is a clinical diagnosis, you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs.

[KaraM]

Can someone explain what the "cross-reactive" means??

 

Thanks,

 

kara

Edited July 23, 2011 by KaraM

[sf_mom]

Santi: If I remember correctly from your prior posts a while back you are local to the Bay Area. We have some wonderful Dr.'s in the area that will help you sort this all out for your son. Two of theses Dr.'s will treat with homeopathic remedies along side antibiotics. The third Dr. made the original association with the CD57, has written extensively on lyme, CD57 and inflammatory markers. We are very fortunate to have these Dr.'s so close.

 

At this point in time and with current results... I think it is important to make an appointment with one of these Dr.'s for further evaluation and testing for co-infections. They will help to explain it all to you. Some of us know a couple of tricks to get in prior to the 4 to 5 month wait list for one of these Dr.'s.

 

We have had wonderful results with Lyme treatment for our family and I am hopeful that your son will have success too. Lyme treatment is not an easy journey and often it takes 2 to 3 years for full recovery but they do recover. I WILL WARN YOU...... initially some individual do get worse with treatment due to die-off and it can take months to see improvement. Again, having the right Dr. is key to helping you through the process.

 

I thought I would attach an introductory video on Lyme... It discusses briefly how devastating Lyme can be to a child. The Dr. featured is local. Good luck and happy to help.

 

-Wendy

 

http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

Edited July 23, 2011 by SF Mom

[philamom]

According to our llmd, a positive Igm could mean a new infection or a chronic, persisting infection driving a persisting Igm reaction. Based on three +'s at band 31, it suggest it's been at least a year.

[Santi]

Santi: If I remember correctly from your prior posts a while back you are local to the Bay Area. We have some wonderful Dr.'s in the area that will help you sort this all out for your son. Two of theses Dr.'s will treat with homeopathic remedies along side antibiotics. The third Dr. made the original association with the CD57, has written extensively on lyme, CD57 and inflammatory markers. We are very fortunate to have these Dr.'s so close.

 

At this point in time and with current results... I think it is important to make an appointment with one of these Dr.'s for further evaluation and testing for co-infections. They will help to explain it all to you. Some of us know a couple of tricks to get in prior to the 4 to 5 month wait list for one of these Dr.'s.

 

We have had wonderful results with Lyme treatment for our family and I am hopeful that your son will have success too. Lyme treatment is not an easy journey and often it takes 2 to 3 years for full recovery but they do recover. I WILL WARN YOU...... initially some individual do get worse with treatment due to die-off and it can take months to see improvement. Again, having the right Dr. is key to helping you through the process.

 

I thought I would attach an introductory video on Lyme... It discusses briefly how devastating Lyme can be to a child. The Dr. featured is local. Good luck and happy to help.

 

-Wendy

 

http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

[Santi]

Hello-

 

Thank you to everyone who has responded to my questions. All websites and information has been very informative.

 

SF MOM, I just watched the video-fascinating and scary. They spoke of the psychiatric problems that can arise due to Lyme and it sounds so much like my son. I am interested in an appointment with the speaker.

 

Do you have time to talk? I'm interested in getting some names and some more information if you have the time. My email is: santi.ad@att.net.

 

Thanks to all. You've been most helpful! Andrea

[lyme_mom]

Under helpful threads at the top of the forum, there's this link

Explaining Western Blot tests: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

WB for Lyme: http://www.anapsid.org/lyme/wb.html

 

Understanding the WB: http://www.lymenet.de/labtests/brenner.htm

 

Bands 31 and 39 are highly lyme specific and 31 is generally seen as an indication you've had lyme for a year or more. While the overall report may say "negative", most lyme doctors would consider your son's results, combined with the symptoms you report, suggestive of lyme.

I would contact www.ilads.org, go to the "contact us" tab and send them an email, asking for referrals within a radius of your zip code. They will send you 3 referrals. You can also go to www.lymenet.org to the section "seeking a doctor" and post a request. It's a very large forum and you can get referrals as well as opinions.

 

While you may be on the fence, it often takes 6-8 weeks to get an appt., so I would make an appt this week and then spend time researching (as opposed to the other way around). You can also ask to be put on a waiting list and often you can get an appt w/in 2 weeks if you can be flexible and go in short notice if there's a cancellation.

 

MichiganPandas - At least one of the links I posted explains the reliability of these tests. As for why infectious disease docs don't use Igenex, there's a schism in the lyme world. Some doctors follow ILADS guidelines for diagnosing and treating lyme and others use IDSA guidelines. Most infectious disease docs fall in the IDSA camp, which doesn't believe in chronic lyme. To understand the schism and learn a great deal about lyme, I highly highly recommend "Cure Unknown" by Pamela Weintraub. You can get a cliff notes version of her story by reading this article http://www.astralgia.com/pdf/EL_Lyme.pdf

 

You can get an Igenex test kit by calling Igenex. They will send you the kit and a FedEx return package. You get a blood draw and fedEx the kit back to them with payment. They then send you a document that you can use to submit your own claim for insurance reimbursement. However, you need a doctor to sign the order form. If you are seeing a Pandas doc, they generally agree to order the test.

 

Neurolyme and/or bartonella (another tick borne illness) have many symptoms that mirror Pandas symptoms. Nearly every member of this forum started out on the Pandas trail. Rather than debate an either/or scenario, many of us have come to see it as a chicken/egg thing, with our kids getting lyme and then strep or the other way around, and the one-two punch was more than the immune system could handle, resulting in a cascade of autoimmune issues and chronic illness. But we've slowly seen our kids get better by expanding the treatments we're using to include lyme, other tick-borne illnesses, mold, and mineral/vitamin deficiency called KPU (kryptopyroleuria). You unfortunately have to do a lot of digging to find your unique puzzle pieces, but generally a good LLMD (lyme literate doctor) can help you much more than a traditional pediatrician.

 

There is much to learn and it can feel overwhelming. As if Pandas weren't complex and controversial enough...now you're supposed to embrace lyme? It's a kick in the gut. But being on the right track for your child is the only way through the darkness. So lyme and these other things are worth exploring - to either treat or rule out. There's no single "right" answer. Just "right" answers for your unique situation.

I totally agree with this. Also I like to think of IND as "where there is smoke, there is fire."