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Lyme Disease
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Posted 9/5/2013 10:49 AM (GMT 0)
My daughter, 13, has been suffering with an unknown illness the last week that has depiltated her and so far no answers. about 2 months ago our family traveled to Boone, NC for a camping trip. A few days into our trip my daughter became sick and I noticed a swollen lymph node behind right ear. Took her to urgent care and they thought it was probably allergies. She did begin to feel better but the gland stayed enlarged. (Not sure if this is all related to what she has now-just background info). We also traveled to NJ for a week and until someone mentioned Lymes disease I never knew NJ was such a hot spot for ticks who carry virus. Last Wednesay, Aug 28, my daughter complained of not feeling well and by Friday her lymph nodes all around her neck were swollen and tender and stiff neck, had a severe headache. She was not able to attend school. By Satirday she was worse and she was achy all over. Took her to primary doctor and she prescribed antibiotics for swollen glands and told us to continue the ibuprofen which has not even touched her headaches anyhow. She asked we contact her after Labor Day if she was still ill. She suffered through Sunday and by Monday,Labor Day, she was now dizzy and had blurred vision. Took her to ER. The doctor gave her fluids, pain meds for headache and did blood work. CBC came back normal. Mono and strep were negative. He didn't want to do spinal tap bc she has had no fever. Sent us home and told us to follow up with primary doctor Tuesday. The headache continue to get worse along wih dizziness. Glands remained swollen and neck still tender and stiff. Took her back to primary doctor and now waiting for more blood work. They added Lymes disease test to the list of blood tests.
My questions are1.) Sound like Lymes? 2.) If test comes back negative and I truly feel it could be Lymes, what would be my next step?
Symptoms:
Severe Headache (constant)
Swollen glands
Stiff and tender neck
Dizziness
Blurred vision
Muscle ache
Thank you and hope to have some answers soon.
Posted 9/5/2013 11:37 AM (GMT 0)
Hi,

Welcome to our forum, there are many knowledgeable people here to help. Yes your daughter's symptoms do fit for lyme disease, but also for other problems. My most unique and severe symptoms at first were the headache and stiff neck. The fact that the headache doesn't get better with medication is an indication that it is lyme. I never found pain relief for head or neck without opioids.

I would start to get copies of all the testing done and continue to get copies.

Read the introduction at the top of the forum if you haven't done so already.

The lyme tests that are currently used are limited and don't identify lots of lyme cases.

If you believe that she has lyme you should start a new thread looking for a Lyme Literate Medical Doctor or LLMD.

I suggest not to waste time with other doctors, I went to about 20 different doctors of all kinds of specialties not one ever suggested I had lyme. When I brought it up they wouldn't even test me.

I know that others will be along to welcome you.

Take care and let us know how we can help!

Anna

Posted 9/5/2013 12:40 PM (GMT 0)
Hard to say what it is with a normal CBC, but everything other than the CBC are pointing towards a virus. I would want to rule out meningitis asap. Definitely go to a LLMD that is knowledgeable about the new viruses they are now finding.
Posted 9/5/2013 1:58 PM (GMT 0)
So so sorry your daughter is sick.  When my 12 year old came down with lyme 2 years ago, he presented with some of the same symptoms.  Stiff neck is a classic sign of lyme.  It is possible that she will test positive if it is a new infection.  The problem is lyme tests are notoriously inaccurate.  Do you know if they ran a western blot test?  There are two tests - ELISA which just test the titers and western blot which is more thorough.  You can still have a negative test but have lyme.  Lyme must be a clinical diagnosis which means that doctors are not supposed to rely on tests results but rather patient symptoms and presentation. 

That being said, I would immediately attempt to locate a pediatric LLMD.  If you post a separate post in this board with your location in the heading, someone may be able to help you.  I took my son to a pediatric neurologist who specialized in lyme who agreed to keep him on antibiotics for 4 months and he has been fine since. 

Keep us posted. 

PS  Keep checking your daughter for a bullseye rash and if one appears, take a picture so you have it for diagnosis and insurance purposes. 

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