Need help for my daughter!

[star223]

My 14 year old daughter has been sick for 3 months now. She started out with just her stomach hurting but now also has headaches, dizziness and nausea. She has had a ton of bloodwork done and seen several different doctors. Her labs basically have doctors confused. She is anemic, her white blood cell count has been elevated slightly throughout the whole 3 months,her CRP(shows inflammation) is elevated, she has had a positive(new infection) lyme test, but that has been that way since 2008, she had a positive lupus test and a negative one, and she has a positive ANA. She had stool studies done-all negative, she had an upper endoscopy-only showed acid reflux, and she had an abdominal ultrasound which showed an enlarged liver-the doctor doesn't seemed concerned about that. I hate to see my child suffering but no one can seem to figure this out. We have appointments with 2 other doctors within the next 3 weeks. Does anybody have any suggestions?

[Gio77Italy]

it is pointless to integrate Iron when the problem is not Iron deficiency obviously unless she had an extremely poor diet... only my guess...

you're welcome , good luck!

[star223]

She has an appointment with a neurologist at the end of the month. I think I'm going to have her PCP order an MRI before she sees them so thats one less thing we have to wait for. She has not seen hematology yet, her PCP has been prescribing her iron. I think I may call tomorrow to make an appointment with them. Thank you.

[Gio77Italy]

If she has dizziness , headache and nausea they could try check her brain/spine

CRP could be related with a Neurological disorder.

see a Neurologist, they can order MRI with contrast to the brain/spine.

you must consult Hematologist if you haven't already for anemia, WBC and enlarged liver.

[star223]

Thank you for that helpful information. To give you a little more info on her Lyme situation-in 2008 she was very ill and tested positive. Because she was so sick her doctor sent her to the hospital and she was admitted with walking pneumonia. The doctors at the hospital said they didn't think she really had Lyme and sent us on our way. In 2010 she had a new PCP who re-tested her and again her IgM was positive. She was given a months worth of doxycycline and that was all. About 2 months ago her IgM was positive again(IgG always negative) and she was given a months worth of amoxicillin. This is so frustrating for many reasons-they say an autoimmune disease can cause a false positive Lyme and because I am a medical assistant and work with some of these doctors that can't figure this out. I am educated enough to know what the bloodwork is showing, but unable to know the cause. The one LLMD we had in our area recently closed his practice so I am on a search for a new one. Thank you for all your info and best of luck to you.

[Ricobord]

Sometimes children get Lyme Disease and their very active immune systems hold it in check for many months and even years.  A PA who treats Lyme told me that it often appears after puberty when hormone levels change.

There is much controversy about Lyme Disease.  The old belief, still held by many doctors, is that a positive IgM western blot signifies a new infection and a positive IgG signifies one that is over a month old.  But not everyone's immune system got the memo on how it was supposed to behave.  I have Lyme and my immune system mostly held it in check for over 4.5 years. Chronic and new symptoms started after I was under chronic stress for two years.  When I finally got tested, I showed mostly IgM antibodies. It was almost exactly 6 years from my infection to my diagnosis. I am getting treatment and I am greatly improved.

Lyme suppresses the immune system.  It morphs and hides in multiple ways in the body.  It is unlike any other disease we know of.  The immune system can fight it for years as if it were a 'new' infection.

Doctors who treat a lot of Lyme say that false positive blood tests are extremely rare.  False negatives are common.  As some Lyme patients with GI symptoms are first misdiagnosed with IBS and your daughter has positive Lyme tests, I would guess that your daughter does indeed have Lyme Disease.  All of her symptoms, even the confusing bloodwork is consistent with Lyme.  She could also have a coinfection.  Often when another bacterial disease called Bartonella is present with Lyme, it can cause lots of GI symptoms, further confusing the situation.  This is true for me, too.  The blood test for Bartonella is called b.henselae, but not everybody has the strains that labs testl for, resulting in false negatives for this, too.

Your daughter's best hope is to find an LLMD, a Lyme Literate MD, as we patients call them.  They believe that Lyme is far more complex than originally believed and that extended antibiotics are necessary to cure it.  Most doctors will only treat Lyme for a month or two and then tell you your symptoms should fade out over the next year or so.  And if your symptoms get worse, and you get new ones, they'll say you have some other unknown condition, or that you have "post Lyme syndrome."  An LLMD will treat a patient until they're well, not for some cookie cutter period of time.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

This medical document was instrumental for me in figuring out I had Lyme.  ILADS can also give you names of member doctors near you who are experienced in treating Lyme. For example, my doc has treated over 6,000 Lyme patients and has seen it all.  Local support groups are really helpful for referrals, too, as they know who is the best.

I hope this is helpful!  Please feel free to send me a private message if you would like more info.  You are also welcome to come check out the Lyme forum.