Monday, September 12, 2011

The Search is Over, The Journey Begins

*Steps up to podium*  *tapping on the microphone*  "Is this working?"  
"Hi, My name is Cheryl, of Cheryl's Lyme Page and I have Lyme Disease."

     Okay, in all seriousness, I have Lyme Disease, Babesiosis and Ehrlichiosis. I also tested VERY positive for EBV. I was originally infected sometime in the early 70s in California. Re-infected in the late 80s in Northern Arizona.  And re-re-infected in the late 90s in Kansas.  

     So far in all these years and countless doctors, not a single one has taken a look at this list, nor have they tried to piece it all together.  Every complaint resulted in a separate test, separate diagnosis and different drugs for each symptom.

The symptoms I'm listing are not all on a daily basis but I will experience several daily. 

  • Muscle Cramps
  • Muscle Spasms and twitching (arms, left leg, face and back)
  • Grinding bones in neck
  • Weak bladder
  • Deep Hip pain (left side, like nerve pain or deep muscle cramp)
  • Low Vit. D
  • Numbness and tingling on right side of face
  • Sharp Pains in middle of back (between shoulder blades)
  • Pain on my chest, same spot for years.
  • Torn up tendons in elbows (surgery on one didn't take)
  • Sharp stabbing pain in knees
  • Swelling of one leg from knee down (one time left and another time right)
  • Jaw pain rt. side
  • Ringing in ears
  • Heart flutters
  • Rapid heart rate
  • Sinus congestion ( always, had surgery to correct septum but infections continued)
  • Black fuzzy looking floaters both eyes ( some days worse than others)
  • Morning headaches
  • Anxiety/panic attacks 
  • Painful bottoms of feet (mostly in am. takes a little bit to get walking)
  • Dizziness when moving my eyes to look up or down, with that I can hear a whoosh sound like I'm going to faint.
  • Shortness of breath (feels like I'm not getting air, blood oxygen is fine though)
  • Night sweats
  • Swollen Lymph nodes. Groin area and under arms very painful.
  • Sharp shooting pains.
  • Tired, Tired, Tired.  (never enough sleep it seems) no insomnia though.
  • All over body aches (feels like coming down with something but never quite happens)
  • Prickly, itchy all over. (like little mites biting me, started ages ago in my scalp. now it hits everywhere)
  • Suddenly I can't remember how to read or write, even the keyboard makes no sense. (lasts for about an hour or so)
  • Constantly loosing words.  Simple everyday words.
  • Forget where I was going in conversation or what was being talked about.

     I'm sure I'm forgetting something, as far as symptoms changing over the years, it seems that what I experienced was one symptom added on top of another. Each time I had a new symptom, the others were still there, so it just added to my list when I went to the Dr. Making me sound crazier as time went.

My Story (shortened)
If my daughter wasn't diagnosed with Lyme disease I would still be clueless.  

     My life has always involved animals and outdoor activities. sleeping out under the stars in the San Bernadino Ca. mountains, lots of hiking, camping and fishing,worked at a humane society in Az for many years.

     Symptoms started when I was probably 15 years old.  I was plagued with constant bouts of strep throat.  The doctors suspected I also had Mono. but I don't remember being tested for that. 
     I was very sick with high fever, severe pain from head to toe and exhaustion.  Since then I had difficulty with mood swings, short attention span, depression and mysterious pains that cropped up in my chest. 
     It was wrote off by my doctors at that time that I was a teenager and "you know how they can be" was what one doctor told my mom with me sitting right there in the room. 

   Being convinced that all my problems were mental and not physical I struggled for many years, putting up with severe headaches and muscle cramps.  My children were somehow very lucky to survive their upbringing. I'm convinced that they are responsible for me not falling apart completely.  They are so important to me that I just had to keep on going for their sake.  I had good days once in a while and that also kept me going.


   Something happened in 1994, don't know exactly what, that started with Extreme fatigue and by 2007 each of these came on and never left. 
  Feeling short of breath (constant yawning), muscle cramps (legs, back, feet and neck), pain in chest, croupy cough, severe pain following meals, hair falling out, migraines, dull headaches almost daily, swollen feeling in throat, painful burning in joints (knees, elbows and middle of back and neck) Black "lint looking" floaters in eyes, light sensitive, heat and cold intolerant, swelling of one leg and the last straw.......anxiety attacks(at least that's the doctors opinion) which landed me in the hosp. and getting evaluated my a psychologist

   Why the psychologist?  Well, after seeing a rhumatologistorthopedic Dr.,a cardiologist, a ear nose and throat Dr., and my reg. Dr.  Every scan, x-ray, and blood work kept coming back normal.

   I came to New Jersey to help my daughter and her husband take care of their children.  They were both in the military and their schedules are never in agreement with raising a family.

My daughter fell sick with long term fever, severe exhaustion and other symptoms.  She tested positive for Lyme disease and bartonella.  

   Doctors on the east coast(for the most part) will look at Lyme disease as a possibility for what is causing such symptoms.

My doctors on the other hand have never tested me due to the false belief that "only deer ticks and only on the East coast" is where you will find Lyme disease.

That may have been true some 50 years ago but not today.

I was tested for Lyme disease and other vector borne diseases in may of 2008.  They came back that I have Lyme disease, Ehrilichiosis, Babesiosis and Ebstein Barr Virus.

This is just the beginning of my has taken 35 years and countless doctors and tests to get to this point.