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Need direction please does my teen have Lyme?

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Lyme Disease
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Posted 10/2/2013 9:06 PM (GMT 0)
Hi everyone,

In 2002, when my son was little, I saw a deer tick on his neck.  I removed it and called the pediatrician.    The doctor said to observe him for any symptoms, and if there was nothing out of the ordinary, then he would be fine.  I did not know much about Lyme then, and there were no symptoms, so I breathed a sigh of relief and got on with my life.

Fast forward to 2005, when he was 9 years old.  He seemed tired all the time, and achy.  Just blah.  I went to my pediatrician, and because of MY insistence, they did a Lyme test.  When I called for the results, I was told NEGATIVE, and so again, breathed a sigh of relief and got on with my life.  I did not understand bands, or IGM or IGG, or CDC and controversy, I just blindly accepted my doctors response at the time.

Now to the present day,  my son is 17 .  He struggles with daily headaches that tend to gravitate towards one side of his head.  Sometimes they are so painful, he can't do anything, mostly they are just a constant nagging headache, and he has a hard time concentrating.  He has gone through bouts of depression over the past few years, which we just chalked up to normal teenage stuff.  Also over the past 3 weeks, he has been having frequent eye twitching which annoys him very much.

Many mornings, he wakes up and just says he doesn't feel well.  This has been going on for years.  We have been to doctors and neurologists, and the verdict is to eat right and spend less time in front of a screen (good advice for anyone!)

Last week, I was thinking about all this, and since I myself am a new patient of a LLMD, that little black tick from all those years ago is at the forefront of my mind. 

I called the pediatrician and requested those old results.  Will you please look at this info and tell me what you would do in my shoes?  After I saw these results (just last week) I started crying....could he have had LYME for all these years?   These tests were done through Quest in 2005

Lyme AB screen 1.17 (H)

IGG Result "Negative"

28 KD (IGG) Reactive (A)

30 KD (IGG) Reactive (A)

41 KD (IGG) Reactive (A)

ALL OF THE OTHER IGG BANDS WERE NON-REACTIVE, AS WELL AS THE IGM BANDS.

After seeing this, I demanded a NEW Lyme test (Last week).  The results are in, and the doctor again who reassured me today that my son is NEGATIVE for Lyme.  I was told that 2 of his IGM bands are currently reactive, but all of the IGG are NON-reactive. 

What do I do?  Could this be Lyme?   I would so appreciate any thoughts you could give me. 

 

Posted 10/2/2013 9:32 PM (GMT 0)
Hi Jennie,

First of all welcome to our little community! I'm so sorry that you have these infections and that you have reason to be concerned for you son, but your concerns were well placed.

With his symptoms (I was once a teen with Lyme), and the fact that band 28 is specific for Lyme disease, why not see if you can just take him to your next appt? As long as you aren't seeing an Infectious Disease doc, they should evaluate him for these infections.

Once these infections go into a chronic stage, which would have happened by this time for your son most likely, testing is pretty much useless, as the tests look for an immune response and the bacteria has already compromised the immune system by that time.

Please do read through our "New to Lyme? Start here!" thread while you are here!! There is a ton of really important information in there - detoxing instructions, symptom lists (as Lyme rarely is the only infection that is passed),along with many links and helpful pdf's.

The good news is that his immune system has likely been fighting pretty hard for him to have had only those few symptoms, and there is no time limit on how long a person can have these infections and still heal from them! So hang in there!!

And please remember - you didn't know, just as my Mom didn't know. You are not at fault, you just didn't know what you were looking at.
Posted 10/2/2013 10:41 PM (GMT 0)
Hi Jennie, See if you can find a Lyme Literate MD in your area. They have a good understanding of the disease. My son is younger but is always complaining of head aches. We live on a small farm and I am having him tested soon. I am currently suffering from chronic lyme as well. We are outdoor people and he has spent his life rolling in the grass and running in the fields here. I dont think it is ever to late to check it out. Prayers up for you and your son. I hope you can get some resolution with this very soon.
Posted 10/3/2013 1:37 PM (GMT 0)
Welcome, Jennie ~

I applaud you for taking steps to understand and get help for your son, and yourself and family. You never gave up. You kept going until you found it, the answer. You conquered the evasive ghost! I believe it's a miracle everytime that happens! Bravo!

I am also new to this group, as well as also recently coming into the understanding that I have been dealing with this for years, as so many of us have when the dots finally connect and make perfect sense.

I do have one suggestion for you. I notice that you are seeing a LLLMD, is that correct? If you are, then they might be willing to sign the testing form that IGeneX lab has for their specific Lyme testing. IGeneX is a lab that does what is a two banned test, where the other labs only do a one banned, if that is my understanding. Bottom line, IGeneX tests are far more accurate than the other labs used by hospitals/doctors that are in the mainstream. If you are interested in having a more trustworthy test done for your son, or any one you have need to consider a test, having access to a LLMD is a great start. If you go to the IGeneX website, you can request a kit sent to you. This contains the forms your doctor would sign.

I've got an appt with a local dr on Monday, who is going to sign for the test. I know what I have, but I want to see if using this lab will result in a different result.

Know you are on the right track. At least finally getting the right answers we are able to face this head on with some confidence. There are many ways to get right/true information, and there are great support groups available. Also, when/if you are ready, talking about this as FACT to your family/friends, no more guessing and suffering in confusion, we learn and help educate ourselves and others. Be gentle with yourself and your son, and know that this is a place that is willing to help with a support system of understanding, not judgment.
Posted 10/3/2013 6:39 PM (GMT 0)
I know what you're going through. My daughter has tiredness and chronic headaches too, among other things. She's 25 and just found out 2 years ago that she has Lyme disease. She has been ill since she was 10 or so and I blamed it on puberty in the beginning. We saw numerous doctors who took care of some parts of her problems, but nothing got to the root of it. We realized how ill she was when she had to drop out of the college program for teens. She was 16 then and just couldn't keep up, because she was too tired. It was such a shame since she was doing well and forging ahead with her life. We're trying to decide what therapy to try next now that I can focus on her more. Tell your son that he's not alone with this. I think there is a Lyme website for teens so they have the support of others going through it.
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