Everyone who has Lyme disease has a health story that is different but very similar in many ways. I think the best way to understand mine is in a timeline.
Heather’s Health History Timeline:
From about 1990-1992: I struggled with painful joints, back pain, and chronic fatigue. I was seen at Sister Kenny Institute under the care of Dr. S and who thought I could possibly have fibromyalgia. During these years I missed school on a regular basis (one year I was a third of the year absent because of the medical issues.) At about 16 I started to feel a little better and learned to deal with the pain that I did have. The pain slowly started to get better and I could maintain a normal life with some physical limitations. During this time period I was on tetracycline (an antibiotic) for a year to deal with acne.
February 2011: Developed severe thoracic pain and some neck pain
February 2011: Thought I would try massage and relaxation to relieve pain
March 2011: Saw doctor at primary care office about severe back pain. Was told that I needed an anti-depressant and there was nothing wrong with me basically.
March 2011: Had an appointment with Dr. St at A back clinic in Minneapolis to address thoracic pain. He did x-rays and MRI and determined that the pain was coming from pinched nerves in my neck and radiating to my thoracic spine.
April 2011: Had cervical injections and got some mild relief but pain returned quickly
June 2011: Dr St performed ACDF C5-6, C6-7 in hopes of eliminating pain
June 2001: After surgery I started to have a really hard time swallowing and went back to see Doctor but was told everything was fine meanwhile many items were getting stuck in my throat and continued for the next few years.
July 2011: Tried to return to work after surgery but developed worsening pain and trouble with neck pain and stiffness without the neck collar.
July- September 2011: continued to have severe thoracic pain and weak arms and neck. Doctors ordered more imaging.
September 2011: Had Nerve root injection at back clinic
September 2011: Had right side medial branch block at back clinic
October 2011: Pain in body was so bad that deep breaths caused extreme pain and discomfort. No improvement and slowly feeling worse
November 2011: Had chest CT scan and saw neurologist. That doctor did a clinical exam as well as ordered labs. He called me shortly after the appointment to say that my lyme lab came back positive but was sending it to the Mayo clinic for further tests. He called a few days later to say it was a false positive and that I did not have active lyme but probably had lyme in the past. He said that this was not causing my pain. He also said I had scar tissue in my lungs but this also was not causing my pain
November 2011: had a bone scan
December 2011: Had a bone biopsy at T-7. Biopsy came back negative for malignancy.
January 2012: Saw Dr. Mon at a pain center for pain services and discussed the three week live in pain treatment option. Dr. Mon did not think that I should stop looking for solutions to relieve that pain yet. He thought I it was too soon for me to his program as I should continue to seek out help for the pain and not yet resolve that I have to live a life with pain. He said to come back if down the road I did not find a cause or solution. He also referred me to Dr. H
January 2011: Saw Dr. H (a manual medicine doctor) but did not get any relief from the treatment.
February 2012: Saw Dr. S at the U of M for another opinion. He sent me to a shoulder doctor at the U of M to see if that is where my pain was coming from. Dr. Ha at the U of M said my shoulder has minor wear and tear but was not causing my extreme pain.
June 2012: Consulted with Dr. D at Twin Cities Spine Center for opinion and options for treating the pain. He referred me to Dr. B, a pulmonologist, to check out my lungs. Dr D said I was a candidate for a thoracic spine fusion and this may help my pain.
June 2012: Consulted with Dr. M at a neuroscience/spine clinic. Dr. M also said that a thoracic may help my pain.
October 2012: Had 8 level thoracic spine fusion (T4-12) with Dr. M. Was never able to return to work after this surgery as I just kept getting sicker.
January 2013: Started seeing Dr S for pain management
January 2013-September 2013: slowly kept getting a little worse. I could not handle much activity besides walking and resting. Using my arms or upper body created more pain. I slept on heat and ice to control the pain. Other symptom developed like numbness and tingling in the face, head was too heavy for body and stiff sore neck, weak arms, painful breathing, painful ribs, memory loss, hazy feeling. I could not return to work because of the pain. Was in a holding pattern until I could have another surgery
October 2013: Dr. M performed a neck revision fusion surgery. The screws from the first neck surgery were growing into my esophagus and one level never fused. Dr. H (an ENT surgeon) also assisted with the surgery.
December 2013: Blurred vision in left eye. I had trouble seeing up close and far away. I was started on restasis and eye lubricating drops.
December 2013: Switched pain doctors to Dr P so I was in the same health care system as Dr. M
February 2014: Had tear duct implants placed to help with blurred vision.
March-April 2014: Saw rheumatologist at the U of M about lupus and arthritis. He said that I did not have either and that they were not causing my pain. Saw a neurologist for MS. He said I did not have MS
May 2014: Dr P (pain doctor) ordered an EMG on my elbow pain.
May 2014- Developed large blister that spread to blisters all over upper back and neck.
June 2014- Went to primary clinic after blisters were not going away and was given steroid cream.
June 2014: Had an EMG on elbows and the neurologist said that my alner nerves were fine.
June 2014- Went back a few weeks later to primary care clinic because blisters were bad and I was extremely fatigued and achy. Took blood and put me on an antibiotic (cephalexin). Primary care Dr called me the next day to say that I had lyme and put me on a 28 day treatment of doxycycline. Primary care Dr called me again the following day and said that the second lyme test came back negative and that I don’t have lyme but I could still continue with the doxycycline. Every day after this I continued to get more painful joints, really bad headaches, distorted vision and more fatigue. I have never had pain in my knees and used to walk 8 miles a day but I struggled to walk a mile or two without crying from knee pain. Wrists, elbows, knees, hips, neck, and back pain have been increasing on a daily basis.
July 2014- Saw Dr W (a Lyme literate doctor) and started treatment for Lyme disease. Was put on a heavy duty oral antibiotic treatment along with supplements.
August 2014- Started Herx reactions to the antibotic and die-off of lyme disease. Tremor on right side of upper body and started to loose vision again.
September 2014- Went back to see Dr W and got Lyme results from Ignex. They said I tested positive for Lyme and Dr W started me on a PICC line for IV antibiotic along with oral antibiotics and supplements.
Symptoms that I have had over the last three years:
Extreme thoracic back pain, stiff sore neck, elbow pain, dry eyes, blurred vision, dry mouth, headaches, memory loss, hazy feeling, facial numbness, arm numbness and tingly sensations, arm weakness and pain, painful deep breaths, easy to get upset, cognitive difficulties, dizziness, hot sweats sometimes but very cold most of the time, tremors, reproductive issues, digestion issues, feeling lost in thoughts and words, sensitivity to sound and light
List of medications I have tried:
Flexeril, tizanidine, tramadol, Celebrex, lyrica, cephalexin, gapapentin, amitriptyline, hydroxyzine, oxycodone, ibuprofen, Norco, prednisone, Ambien, Neurontin, lydocain patches, compound pain cream, motrin, amoxacillian, clindamycin, minocycline, artemesinin, metronidazole, tinidazole, doxycycline, difucan, alinia,