Joy Murphy 19 Years of Lyme

Fall 1995 severe, bizarre unexplained illness, now thought to be the initial lyme infection.  No memory of a tick bite.  No bullseye .  105.7 fever, severe chills, bedridden for two months. Health was never the same since.

1996 fatigued often and easily (23 yrs old), constant.  Recurrent GI/ stomach issues

Neck pain comes and goes weeks at a time

1998- 1999 3 Unexplained miscarriages

2000 immune system struggles with travel out of country.  Each trip ends in illness or infection

2001 severe ankle and joint pain comes and goes after months

2003 severe ankle and joint pain comes and goes after months

2003 developed allergies out of the blue.  Severe head pressure, recurring “sinus infections” unrelieved by antibiotics

2004 severe shoulder pain, lasts months

2007 severe ankle and joint pain comes and goes after months

2009 H1N1 after visiting Mexico

Feb 2011 MRSA infection/ cellulitis after visit to Hawaii.  Severely ill, bedbound for 3 months.  Fatigue worsens, memory loss glaring, shortness of breath (herxenheimer reaction to antibiotics).  Cognitive issues surface.

May 2011  GI issues intensify.   Food allergies begin to surface.

July 2011  MRSA infection returns bedbound for another 2 plus months.  Fatigue worsens, memory loss glaring, shortness of breath (herxenheimer reaction to antibiotics).  Cognitive issues worsen

Nov 2011  Fatigue now worse than pregnancy fatigue.

Dec 2011 Memory loss becomes alarming

January 2012 visit pcp, runs tests, declare I am fine

Feb 2012 visit naturopath, suggest I have adrenal fatigue and food sensitivity, I should get off gluten and dairy and see if I feel better.

Feb – March 2012 beginning to feel better, joint pain lessens, gi issues improve

April 2012 GI issues worsen, vertigo, internal stabbing pains.  Naturopath tests positive for 40 different foods.   Exclusion diet started.  Start reacting to most foods.   Weight loss at about 1 lb a day.  Can no longer take care of house duties or take care of the children.  Lyme labs and other tick born illness labs run, all negative

May 2012 PCP takes more labs, refers me to rheumatologist, GI.   Questions Lupus and Celiac disease.

June 2012 Switch to Hospital in Boston, they diagnose celiac and after a CT scan, find a neuroendocrine tumor in my pancreas (non producing).  They remove the tumor, I have the celiac under control

Now relying on a wheelchair to get around out of the house

July 2012  removal of pancreatic tumor.  IV vancomycin given to protect my body from another MRSA infection during and after surgery.   Recovery is tough, severe pain and spasms (another herxenheimer reaction to the antibiotics).

August- October 2012-  out of the wheelchair, recovering slowly.

December 2012- Symptoms start to return and flare severely.   Doctors treat it as severe celiac with prednisone.

June 2013- symptoms very severe, checked for Lupus again.

July 2013 Stopped driving

August 2013- checked for epilepsy

September 2013- September checked for MS. More lyme and coinfection tests come back negative

November 2013- given a pneumonia vaccine by immunologist, symptoms worsen progressively

December 2013- Infectious disease doctor tells me that there is no chance it is lyme

December 2013- PCP diagnoses chronic fatigue syndrome through exclusion of everything else.  I refuse to accept this.

Jan 2014 can no longer walk unassisted, house bound, bed bound.  Cannot cook a simple meal

Jan 2014 travel to Northampton, Ma and NYC to see specialists

Feb 2014 Tests for lyme through IgenEx come back positive.  Treatment started for lyme

March 2014 – Diagnosed with klebsiella pneumonia, treatment started

April 2014- Diagnosed with CVID (common variable immune deficiency)  Treatment denied by insurance company

July 2014 – switched to intermuscular injections of antibiotics

October 2014- New health Insurance approved CVID treatment

November 2014- switched to IV antibiotics.  Insurance denied coverage for iv antibiotics and nursing for line care

November 2014- surgery to place a hickman catheter into my chest to be able to administer iv’s

June2015- recovered to about 75%

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