posted
I am confused...I know the Western Blot is difficult to understand because some bands are more lyme specific. I also know that just because its not a CDC pos it can still be lyme.
My 11 yr old has had vague symptoms of lyme on and off for the past yr or so. Nothing that couldn't be explained away as something else, but know what I know...I want to be sure. Also knowing that tests are not reliable (especially through Labcorp)I decided to have her tested just to see what would come up.
Her results: IgG all bands absent except for 41-Present abnormal IgM 23 Present abnormal.
What do I make of this? Her symptoms that I could attribute to lyme are subtle but there nonetheless. I know I am oversensitive about symptoms of lyme because I know how bad it can get. So I am trying to decide where to go from here. I am thinking that I should make an appt with my LLMD for her, tell the symptoms that concern me and show the WB results. I know my daughter though...this will scare the heck out of her because she has seen what I went through. I don't want to put her through the anguish if it is in fact nothing...but my gut is telling me differently... Posts: 193 | From New Jersey | Registered: Oct 2008
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steve1906
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lululymemom
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posted
This is exactly the reason why we need better testing methods. It's bad enough dealing with the disease but getting sketchy test results just adds to the confusion.. Here's hoping we find better ways of testing soon.
posted
I can totally relate to what you are experiencing. My 12 year old son has had on and off vague symptoms for a while and we had him tested to avoid potentially crashing at some point in the future. He had the following test results:
Our llmd thought it wise to treat due to the significance of band 23 even though he was Igenex negative. So we have been. We retested last week through igenex to see if abx treatment has gotten some antibodies going.
We will find out next week. He has been so good about not eating sugar and he is so skinny to begin with. He diligently applies sunscreen since he is on Doxy. He takes my probiotics daily...
Ultimately these are good lifelong habits but I can relate to how you are feeling.
He has not had a really distinct herx but did have some tired days with a dull headache.
I had told myself if his test was negative I would forget it and move on due to the vagueness of his symptoms. But as you know it's really a clinical diagnosis.
Good luck mom! It's so hard when it's your child. You just want to do the right thing.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
Thanks for your replies everyone. I believe what I will do is make the appt with my LLMD for her and see how she feels about it. Usually there is a long wait to get an appt, but since nothing is extreme at this point, I feel sort of better about waiting. Odds are she will have her tested through Igenex.
My son was also tested (had them tested for bartonella as well...boy that was a fun conversation with their ped.!) and have not recieved my sons test results in the mail yet. The dr. office called and said that all the bloodwork for both looked good, but I want to see for myself for obvious reasons.
unsure...I so feel your pain. You are exactly right, we just want to do the right thing for our kids! Good luck with your son's treatment. Let me know how he progresses.
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
lymephobic, unfortunately those results are not indicative of Lyme.
I'm not saying that it's not possible that your daughter has Lyme, but that the test results do not support a diagnosis.
In studies done, most healthy controls do have some reactivity to one or two bands. If you can spring for a test from iGenex, it is much more sensitive than other labs' western blots and might be able to give you a better idea.
If you can find a LLMD with a good reputation in your area I would make an appointment and ask them their opinion.
It's hard for any of us on here because we don't have the full picture, don't know what symptoms she has, etc. But I also think it's important that while being vigilant, we don't rush to diagnose and treat.
The key here is how severe her symptoms are. If they can all be explained away by something else (hormones? growing pains?) then maybe you should just keep a keen eye on her but not treat anything.
And keep in mind that as a patients ourselves (and with your handle "lymephobic"), we might be more biased towards diagnosing Lyme than we should be.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
5vforest, I agree I am much more sensitive to "seeing" lyme in others. This is why I am in such a bad spot...I don't want to treat her if its not warrented, but on the other hand...I would hate to see anything happen in the future because it wasn't treated now.
Her vague symptoms are being tired alot...but...she is very athletic and is always busy with sports.
Foot pain...but...some of her shoes don't have a whole lot of arch support.
Neck pain...but...she is a softball pitcher and that could be why. Its not constant pain just every once in a while.
She forgets alot, loses her glasses etc...but she is 11 and a straight A student.
Ridiculous mood swings...but...she is 11
She did have a couple of nights last month that she wet her bed...that I have no explination for. There was no excessive drinking that day or late at night.
Light sensitivity I also have no explanation for.
There are more but I can't recall right now.
If I can get her to my LLMD I am fairly certain she would send her bloodwork to Igenex.
Posts: 193 | From New Jersey | Registered: Oct 2008
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SHe was diagnosed with Pitoriasis Rosea last year. Which basically is a bulls eye looking rash that grew a bit then smaller rashes appeared on the body. Had her tested but ELISA came up negative. No western blot was done. The diagnosis seemed plausible so I took lyme out of the picture.
2 weeks ago she had a rash in her armpit (this is what prompted me to get the testing)that looked like a bulls eye. She didnt see her pediatrician because it was a Sunday so I tooke her to a walk-in clinic. That dr. said lets send her for a test and I asked specifically for the WB.
When she was 7 she had a tick embedded in her head with neck pain and fatigue. I took her to the pediatrician and she said no problem not lyme because its a Lone Star tick. I promptly took her to another dr. that would treat her with 1 month of amoxil.
We live in an area that is loaded with ticks...I hate it, but moving is not an option.
Its just so scary and I never want to see my kids to suffer the way I did.
Posts: 193 | From New Jersey | Registered: Oct 2008
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I understand the situation you're in, and it's really hard to judge whether or not to treat.
If the decision was mine to make, I would take her to a LLMD and ask about doing a challenge western blot, where she takes antibiotics for a few weeks and then retests, optimally through iGenex. If the results differ greatly it's an indicator that treatment might be warranted.
I think the key here is not letting her get stressed out about it. If I had an 11 year-old, I wouldn't mention anything to them about the politics of LD or how hard it can be to treat. Make sure she knows that the only reason you're seeing the doctor is so she doesn't get sick later on and that she won't ever get nearly as sick as you were.
My other opinion is that if you do treat, you should keep the regimen as simple as possible so she doesn't identify as being sick. Antibiotics, probiotics, maybe a multivitamin here and there. Since she's not that ill, I wouldn't push a gluten-free or sugar-free diet, I would just make sure she's eating relatively healthily in general.
Good luck.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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