Thursday, September 24, 2009

Monica's Health Last Week

Monica was a "normal," active, healthy girl before April 2006. Her only doctor appointments were for her checkups. During the past three and a half years Monica has seen over seventy-five doctors (Western and Alternative medicine) trying to diagnose or improve her condition. Her illness has been progressive and we have had very limited positive results with any treatments we have tried (temporary painful lower back feeling in Germany - doing the Bionic 880). A big part of the difficulty in treating her is that she is numb and does not have a feedback loop to tell us pain or improvements unless they are very obvious like regaining her vision or the ability to walk. We can only judge improvements based on lab results. Monica has received a diagnosis of Lyme with the co-infections of Bartonella, Babesia, Erlichia, Mycoplasma, and Sensory "Neuronopathy." However, no one has ever seen symptoms like hers before - Monica is completely numb from her head to her toes and cannot feel her muscles, bones, or internal organs. She has no sensation in her whole body: pressure, touch, temperature, or proprioception (where you are in space). Monica has to visually look at a body part to make it move. More than one doctor has stated, "No doctor will probably ever see a patient like this in their lifetime." Her condition is considered incurable and probably terminal based on her progression.

Current Discernible Symptoms
  • Legs do not bear weight- cannot stand - in a wheelchair as of April
  • Numbness - whole body inside and out - she has to see a body part to make it move. Progression started in February 2007 and ended in May 2008
  • No taste
  • No smell
  • Vision is vertical in the left eye and blurry in both
  • Loses hearing periodically throughout the day
  • Cognitively: poor short term memory, unable to concentrate, difficulty thinking, difficulty reading (vision a factor), sequencing problems, disoriented sometimes, forgetfulness (cannot do school work)
  • Does not sweat
  • Muscle twitching / body tremors / seizures
  • Insomnia - sleeps three or four hours
  • Daily reflux - sometimes vomits
  • Vocal sounds are weaker
  • Goes to the bathroom on a schedule
  • Eats and drinks on a schedule
  • Feels detached / amputated from her body - her eyes are floating in space
Symptoms Monica displayed before going numb or losing ability to walk
  • Pain: chest, ribs, migraines / headaches, right wrist, both knees, abdominal pain / spasms, lower back (all pain disappeared when she went numb)
  • Right leg scissor gait
  • Both knees hyper-extend
  • Right foot drags
  • Body temperature not regulating normally
  • Balance off
  • Hiccups turn into burps for 20 minute increments
  • Gallbladder stones /sludge (antibiotic induced) - emergency room
  • Constipation pain - emergency room
  • Hips: Red stretch marks - currently white from Bartonella
  • Leaky gut syndrome
  • Nutritional deficiencies
  • Toxic load: heavy metals, petrochemicals, food, water and medicine ingested
  • What else . . . . . . . ?
Last visible change was when she lost her ability to walk in April.

In my next blog update I will let you know her amazing improvements already!


  1. i have no doubt in my mind you will be well. I can feel it happening now.


  2. I just love these blogs. I can't wait for the next one! Sandra

  3. Great! You did it! We love to follow your journey and adventures.

  4. Love hearing your progress on your journey. Hopeful that good things will come from this trip. Blessings on you and your family.

  5. I am waiting for and expecting incredible results! Can't wait for your next post!! Love to you both.

  6. We love you and looking forward to hearing more. We are very excited to hear about what's going on. Sarah, Ann and Sandy

  7. Hello Monica!

    TX for the updates! What a plane ride, good grief!

    Looking forward to seeing you again, maybe we can get in another round of ping-pong?

    I like your picture above...I don't think I've ever seen anyone smiling when getting a shot! Lots of love & ~hugs~ to you (lame?):-))


    PS Did Pink Elephant make the trip with you??

  8. The BEST part was seeing all of the doctors that would come in to meet Monica for the fist time. After reading her charts that look something like this post they would visibly pause and check to make sure they were in the right room. Her smile is infectious and her attitude so bright... keep surprising them Monica! I miss you!