WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Hi - My five year old's Igenex results just came back. He has four positive IGG bands: 41, 39, 58 and 83. The 41 was a strong positive. No positive IGM bands. Negative for babs and bart.
Could someone help me to understand what this means? I understand that it means he has antibodies to Lyme, which indicates definite past exposure. But I'm wondering if even without the IGM bands, could this be an active infection?
How do we determine if he has a current active infection that would require treatment? Are there other tests that would be more telling as to figuring out whether this is an active infection, or is it just a clinical dx at this point?
He isn't sick. He has a full schedule and tons of energy. But he does have issues: a diagnosis of epilepsy with an abnormal EEG that has two different neurologists puzzled, complaints of "my whole body hurts," very accident-prone - bumps into things, trips over things, frequent falls, doesn't look where he is going/easily distracted, sensory processing disorder and low muscle tone (but the low tone appears to be genetic).
These results were from a integrative primary care physician, who is Lyme friendly but not a Lyme expert. She recommended a consult with a pediatric LLMD, which we plan to do, but just trying to get so info in the interim.
Posts: 1737 | From Virginia | Registered: Aug 2011
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"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa." --DR C of MO
posted
But he does have issues: a diagnosis of epilepsy with an abnormal EEG that has two different neurologists puzzled, complaints of "my whole body hurts," very accident-prone - bumps into things, trips over things, frequent falls, doesn't look where he is going/easily distracted, sensory processing disorder and low muscle tone (but the low tone appears to be genetic).
--
That would be enough to know you need to have him evaluated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Knowing what I know now, I would not wait to look further into it. Your state has an active support group. You should be able to get information about who to see near you. Sorry to hear that your young one is possibly infected. At age 5 we didn't think anything of migraines and ADHD in our son. It was just the start of things to come. Take care,
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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WPinVA
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Member # 33581
posted
Thanks so much to both of you for responding. About the only good thing to come from me having Lyme is that we will definitely be on top of this and I made an appt for him with a pediatric LLMD.
Kari, Thank you for letting me know how your son's Lyme first started. Lymetoo, thank you for the link re: testing explanations.
I recall past discussions on here about Dr. J saying not to treat kids if the Lyme is dormant. I believe the phrase used was "let sleeping dogs lie."
So I am just curious as to what is to come and how they determine if this is active vs. dormant? More testing? A dx based on the symptoms he has, which do certainly raise some flags but don't seem to scream Lyme?
Maybe I am just in denial. Sigh. Although I probably would rather have it be Lyme than epilepsy.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I just don't think it's normal for a 5 yr old to say his whole body hurts.
and yes, IF he has NO SYMPTOMS, it's best to leave it alone
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I would definitely have him evaluated by a Lyme pediatrician. Bands 39 and 83 are specific for Lyme. It is my understanding from Dr. Harris at IgeneX that IgG is a longer-standing infection and IgM is a more recent one.
I agree with the others that his symptoms do sound suspicious. I am sure it is very difficult for a five-year-old to describe all the symptoms he has. A knowledgeable doctor would be able to help.
I am sorry your son may have Lyme, but it is better to know. Knowledge is power.
Posts: 4681 | Registered: Oct 2000
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
The sensory processing disorder is also a big red flag.
(in my experience)
Sending good thoughts--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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lax mom
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Member # 38743
posted
OMG, my son's very first issues, way back when he was 1 and 1/2 (he's now 3) were: sensory processing disorder and saying his knees hurt.
I thought he just had sensory issues with some autism traits. I dismissed the knee pain, because I thought "I've never heard of a 1 and 1/2 yr old having knee pain".
He was Igenex IGG positive and only had band 41 on IgM.
He has Lyme...and now possibly PANS/PANDAS (I'm just learning about it).
After finding out about Lyme, when he would say his knees hurt, I would feel them and sure enough, they were warm to the touch. (I felt HORRIBLE for not taking his complaint seriously much earlier).
BTW: I would frequently bump into things too. It was like my body didn't know where it was in space (proprioception).
I would have sworn that it was just a genetic sensory thing, since my son has sensory issues.
An EMG/NCS proved otherwise.It turns out that I have nerve damage in my arms and legs due to Lyme.
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi WpinVA:
Our daughter has had 11 Western Blots and has never been CDC or Igenex positive. This just shows her antibodies are not fighting the infection. I point this out to emphasize the flaws in the diagnostic standard.
She did culture positive by the new Advanced Labs test, so we know the Lyme is back.
At the time she cultured positive 2 months ago the Igenex only had bands 41 indeterminate.
Earlier tests did have positive and indeterminate lyme bands, just not at the same time to be "positive"
You mention positive bands 41 which is indicative of a spirochete (the flagella but not specific to the Lyme borrelia) and 39 and 83 which are Lyme specific.
My opinion is your son is showing an active Lyme infection. Based upon your symptom descriptions and the WB readings.
Good luck
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Dr. H. fromm Germany did a 8 year study with about 20 people who were positive but had no symptoms. ALL of them developed symptoms or became really ill within 8 years.
Think of mycoplasma as well.
Posts: 185 | From Germany | Registered: May 2012
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WPinVA
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Member # 33581
posted
Thanks for the input. I forgot to include that he developed a stutter about a year and a half ago, but it has decreased over time and is barely there anymore.
Also, I have a vague memory of finding a very faint bulls eye rash on one of my kids 3-4 years ago and I'm pretty sure it was him.
When I saw the rash, I looked up info on Lyme, and it said that if it was a Lyme rash, it would persist and continue to get bigger. (I now know that's not necessarily correct, but this was before my Lyme-literate days).
I took a picture but it was so faint it didn't even show up, and it was gone by the next day, so we didn't do anything. My husband (who tends to be the authority in our house on such things since he grew up in the country) thought it was a spider bite.
Of course, knowing what I know now about Lyme, I would do things much differently if that happened today, and it still really bothers me that we didn't do anything back then.
Posts: 1737 | From Virginia | Registered: Aug 2011
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He isn't sick. He has a full schedule and tons of energy. But he does have issues: a diagnosis of epilepsy with an abnormal EEG that has two different neurologists puzzled, complaints of "my whole body hurts," very accident-prone - bumps into things, trips over things, frequent falls, doesn't look where he is going/easily distracted, sensory processing disorder and low muscle tone (but the low tone appears to be genetic).
Diagnosis is made based on symptoms whether it's IgG or IgM positive.
It sounds like he IS having symptoms even if they aren't symptoms you would call "sick." I would have him evaluated.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Best to review those results with the doctor who ordered it, I'd think! There are "Lyme specific" bands & those that cross to other probable causes/ critters (i.e: the 41 band, not necc. indicative of Lyme at all).
IgG bands indicate "converted antibodies"... that is, ones that have been around for awhile, which MAY indicate active infection in the recent past.
You can reseaerch all of this on-line but, again, it's best to review the results with a Lyme-literate physician. He or she will also take into consideration the child's "presentation"; current & recent symptoms, & any rash or marks.
Lyme disease is a CLINICAL diagnosis. We still don't have any *reliable* blood tests... yet.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Thanks so much, everyone. I have a copy of his results now. Just like Laxmom's son, he is Igenex IGG positive and also shows band 41 positive on IGM (with a couple more IND).
We are going in to see an LLMD tomorrow. Based on all your input and what I have learned about Lyme over the past two years, this looks to me to be a positive result but we'll see what she says.
Please think good thoughts for us!
Posts: 1737 | From Virginia | Registered: Aug 2011
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