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%