Aug 30, 2013

An Update on Ben

Yesterday felt like a roller coaster with a huge knot in my stomach all day. All we could do was pray for peace and direction, and I'm hoping that we are making the right choices after seeking advice from so many people.

So I mentioned that Ben has seen multiple doctors...

PCP countless times
NUCCA specialist

His pain originated in his jaw and neck but in the past few months new symptoms seem to show up almost daily...and I admit at times, those close to him including myself have thought this could be in his head since it all seemed so bizarre.
Multiple people have casually mentioned the possibility of this being lymes disease over the past few months, we decided to take a closer look and after reading the symptoms...we were floored. I'm cutting and pasting the ones that apply to him

Musculoskeletal System
Joint pain or swelling or tenderness
Stiffness of joints, back, neck
Muscle pain or cramps
Bone pain
Heavy feeling in one or more limbs

Neurological System 
Burning or stabbing sensations in the body
Pressure in the head
Numbness in body, tingling, pinpricks
Poor balance, dizziness, difficulty walking 
Pain in spinal column

Symptoms seem to change, come and go
Pain migrates (moves) to different body parts

Pain in ears or sound sensitivity
Ringing in one or both ears
Pressure or feeling of fullness in ears

Digestive and Excretory Systems
Diarrhea, irritable bowel
Irritable bladder (trouble starting, stopping)
Upset stomach (nausea or pain)

Respiratory and Circulatory Systems 
Night sweats or unexplained chills
Heart palpitations or extra beats

Psychological well-being 
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind 
Difficulty falling or staying asleep

Mental Capability
Memory loss (short or long term)
Confusion, difficulty in thinking, brain fog
Difficulty with concentration or reading

Head, Face, Neck 
Unexplained hair loss
Headaches, mild or severe
Twitching of facial or other muscles
Stiff or painful neck or creaking
Jaw pain or stiffness
TMJ – sudden onset, jaw spasms
Sore throat, hoarseness
Difficulty swallowing, throat spasms

Ben does not recall a tic bite, but not even half of patients with lymes disease can. Back in the winter, Ben was frequently in the woods picking up firewood and believes it could have happened around then...
So at this point we feel we can't move forward unless we rule out lymes disease. All signs seem to lead to it, which could very well be wrong but we feel a little more confident starting there rather than starting all over with a new neurologist. Duke does not accept our insurance, so we would likely look into VCU.
Next Wednesday, at 10:30am Ben has an appointment with a lyme specialist in DC...

And we go from there..


  1. Wow, you have so much on your plate right now. I'll be praying for you and your family and hopefully the doctors can diagnose and treat whatever is wrong with Ben.

  2. Praying for you and Ben.

  3. Thinking about you guys, and praying this is the solution to his problems!