Lemon and Lyme

By Jackie Kleihauer-Gilmore in Health & Fitness

There is a saying ‘when life hands you lemons – make lemonade’ but what happens when life hands you Lyme(s).

For those who don’t know me, I am an operating room nurse/surgical assistant at Hanover and District Hospital (HDH). I live with my very supportive husband, Hector Duque, who is a surgeon at HDH and three talented and beautiful girls (all three are Lifeguards this year J) -Emmaline, Michayla and Carolina.

I am putting this condensed version (believe it or not) out to the public to raise awareness of Lyme disease and the havoc it can create. I will talk openly to anyone who has questions – please don’t hesitate to approach me.

Lyme disease is caused by a type of bacteria called Borrelia burgdorferi. (healthycanadians.gc.ca)  It commonly infects animals like birds, mice and deer.  Ticks pick up the bacteria by biting infected animals and then pass it on to other animals, including human hosts. (canlyme.com)  Lyme Disease is known as the great imitator as it mimics any disease.

I don’t know how long I had been having symptoms for but I finally decided to ‘track’ them on a scrap piece of paper starting January 2015. Almost monthly I was having pain, tingling and numbness in my feet, however, the symptoms would come and go. By early summer I decided this was related to orthotics and had new ones made in July. Much to my dismay the symptoms continued after the new orthotics but, again, they would come and go so I didn’t do anything further.  At this point I also started noticing that my memory was getting poor and I was having troubles concentrating– I was forgetting words/things and locking myself out of the house -I had to call/text Hector or my girls to get the code to the house.  I laughed this off saying that this was related to early menopause as I was also having many hot flashes (I was either cold or sweating), periodic night sweats, insomnia, heart palpitations, fatigue and menstrual problems.

Things started to get worse in early November when the symptoms travelled to above my knees, was in my arms and face and I was itchy all over. I went to work early that day so I could visit the emergency doctor  who was initially going to send me to a neurologist  but then looked at some recent blood work and decided that this was all due to my low ferritin level (I had been diagnosed with anemia earlier in the year) and suggested I increase my iron pills. Twenty four hours later the pain was so intense I couldn’t walk and was forced to take an extra-long weekend. I returned to work Monday as the pain started to dissipate. A few weeks later my symptoms went away and I was elated.

The 22nd of December rolled around and my youngest daughter, Emmaline, had minor surgery. I woke up that morning and again I felt the same symptoms in my legs. I thought that this must be a stress- induced thing as she was having surgery and Christmas was just around the corner. Each day got progressively worse and I was extremely fatigued.

January 8, 2016 things ‘came to a head’ – I could not walk or work again. I started to keep a daily log. Hector had a stern talk with me and told me to see my family doctor. I went. I had an MRI within a week – it came back normal. I saw a specialist a few days later. Family or friends started coming with me to all my appointments as my memory was getting so poor. The specialist put me through different tests -he noticed that I had a tremor and discovered I had sensory loss in my feet. He sent me to have an EMG/nerve conduction study – this came back saying I had bilateral axonal polyneuropathy. MS was ruled out but now we were looking at autoimmune and hereditary diseases. I was started on an anti-seizure medication to help control the symptoms but a week later I developed  intense pain and instability in my (L) knee and (R) ankle that never went away. Three to four weeks later I was so confused -I was getting lost within the hospital – I decided it was due to the anti-seizure med so I stopped it but was started on another one. The symptoms never really went away and to add insult to injury I gained a significant amount of weight on the first anti-seizure med.

By the beginning of February I was wearing an anti-foot drop brace 24/7 on my (R) ankle and a (L) knee brace. I was in so much pain and hyper-stimulated I couldn’t stand to have anything (sheets/clothes/water from shower) or anyone touch my legs – between this and the insomnia I was only sleeping a couple of hours at night. Sleeping and/ or pain medications did not help.  I was also hypersensitive to noise – it was a chore to talk to people, watch TV or listen to music. This month I also started with spasms and cramps in my feet and legs, dizziness and vertigo.

I started working with kinesiology in March but as time went on I was forced to wear braces on both ankles, knees, wrists and elbows – they were so weak, unstable and painful. If I could have found braces for my hips I would have worn those too. All my joints cracked when I moved them, periodically they would swell slightly. Walls, chairs etc. became my friends – I used them for support to help get me around home and the hospital.

April brought me a flu – I got up to use the bathroom and collapsed due to the pain and weakness in my legs. It left me bedridden for a few days other than to use crutches to get to the bathroom. April also brought my birthday and a cane (birthday present from my sister) which I only used at home – I was too embarrassed to use it out in public as I still didn’t know what was wrong with me. I stopped driving – I relied heavily on Hector, Michayla, my friends and family to get me around. During this time I continued to go to specialists, have tests and blood work done including lead poisoning and Lyme disease – all of which came back negative. It got harder and harder to stay positive through all of this.

One day in May I woke up and the symptoms were basically across my whole body. I went to the specialist who said “you are beyond my scope of practice” and sent a referral to the neurologists in London. At this time my tremor flared-up – I knew it was coming but this was the point that I really felt my career as an OR nurse was over. It was decided that I should stop working in the OR and go on modified duties (I’m still on them).  I felt so useless and so worthless.

The Tuesday night before I went to London I visited my dentist as I had developed a tooth ache on the weekend. He diagnosed an abscessed tooth, said I needed a root canal and put me on antibiotics until the root canal. The next day I went to the specialists in London and spent all day with them. They too didn’t know what was wrong with me. I went home feeling so deflated. Hector kept telling me I was strong and would get through this but I was rapidly losing hope.

The Saturday after going to London I didn’t get out of bed until 11:30am; I felt so unwell – breathing was difficult, I was constantly having heart palpitations and I felt like my nerves were being electrocuted but I told myself to ‘suck-it-up’ and went outside to clean the deck.  After 15 minutes I felt even worse – I looked sky bound, uttered a curse at God (it was a ‘dark’ moment) and cried “what are we missing?” I went back to bed for several hours but got up before Michayla left for the evening shift at the pool. I was still feeling so unwell that I had her call Hector, asking him to come home, as he had gone out for a bike ride. He returned immediately and we sat on the couch for about half an hour trying to figure out what was happening. Suddenly, I recalled a conversation with a doctor about Lyme disease. I have training to place PICC lines and I remembered a patient being referred to us from the Toronto area (as our wait times are short) who had Lyme disease and this doctor was the treating physician. I had actually called this doctor back in March/April (before I had the Canadian Lyme test done) asking if this could all be related to Lyme disease. The doctor said “yes, but the Canadian test is flawed, the US test is better.” The doctor explained that sometimes patients with suspected Lyme disease will go on a course of antibiotics, if their symptoms get worse within days of being on antibiotics that is a good indication of Lyme disease.  In a ‘nutshell’, as the Lyme is dying off, it releases toxins making the symptoms worse -this is known as a Herxheimer reaction or herxing. Hector called the doctor, who answered, and Hector was told that I could likely be herxing as the time frame fit with being on the antibiotics. We went onto Canadian Lyme disease websites and discovered I had almost all of the symptoms listed. Hector and I were cautiously hopeful.  The US test was ordered and sent off June 27th (at a cost of almost $1200) and by July 31st IGeneX Labs from California and the US Center for Disease Control both confirmed that I was positive for Lyme disease. We celebrated!  Although this was not a good thing to have, it was such a relief to know what it was.  I was not going crazy!

The regime of medications I am on now cause other issues but my symptoms have started to fade, although humidity exacerbates them. Symptoms went away that I didn’t realize were actually symptoms – bladder and bowel issues, hair loss, stiff neck (I thought it was all due to getting older). My thought process is still slow and slightly skewed.  I’m not sure if I will regain the memory loss -if I don’t remember you or a conversation, please don’t take it personally.

I can’t recall getting bit [a nymph tick is less than 2mm but can still infect humans (cdc.gov)] or having the bulls-eye rash. We live in the country. We have indoor/outdoor cats. We have camped in different areas in Ontario and other provinces; we have travelled extensively in the US and abroad. A couple of years ago, when the winter was so harsh, we had deer lying up against our house and bushes where I cut grass.  I found out recently that my neighbor used to pick ticks off his dog, Simba.  Simba used to spend hours a day with us inside and outside our home.  Although I will never know where I got Lyme disease from I am thankful that the events leading up to my diagnosis happened the way they did. I am not only grateful to the doctor who is treating me but also to my family, friends, co-workers and employer who supported me when I thought I was going crazy. I am especially thankful to Hector, he has been amazing through all of this; he never doubted me (or at least never voiced it), he re-arranged his schedule to accommodate me, he would get up in the night to get me pain medication or to rub my joints or when nothing helped, he would hold me while I cried.

So what do you do when life hands you Lyme(s)? Firstly, you never give up!  Secondly, and most importantly, you count your many blessings for all those who are around you, to support you, fight for you and love you.