Let me tell you my Story…

Hi my name is Ingrid and I live in Halifax. Nova Scotia, Canada…
I was bit by a tick in July of 2008, and then ….my life changed….

A group of friends, 5 Adults and an 8 year old little girl went out for a country bike ride, we were on the Old Windsor Highway.  One of the bikes broke down , the highway we were on was an 80km highway, on a corner, two of the members of the group went to get help.  We were concerned that it was not a safe place for an 8 year old to be, the cars were travelling way to fast.  So my friend, her daughter and I  decided to follow the sound of the brook we heard, make the best of it and cool off our feet.  I noticed there was not a single house around the area and thought it to be kind of weird. We did not know this area was a  Lyme infected area…we did not see any signs. We were so happy when help arrived about 45 min later, the man with the truck…our saviour.  As he flopped his tail gate down to load the bike, one of the other members who went for help…starting looking at us and frantically started to pick ticks off all three of us. We must have had easily 10 on each of us…. The man in the truck stated that if his wife was there she would have removed ALL of her clothes in the middle of the road.  I laughed at him saying…. “Nice try, Buddy” !!!!  We left there and went to the next corner store found a bathroom, then we removed all our clothes…shook them … looked in shoes… each others hair – like we were chimps and thought we got them all. We all had heard of ticks but had no idea how sick they could make you. I cant remember the time frame but I was at work and noticed that my elbow was itchy, I don’t mean regular itchy…I mean intensely…I couldn’t stop.  I scratched and scratched the lump on my elbow… the skin started to peel off and then I noticed the black thing logged in my elbow.  It looked like a crater with a hole in it… and in the middle of the hole a black thing the size of a watermelon seed, which is what I now believe to be the sack.  It was not easy to take this thing out… with the help of a co-worker it took us about 45 minutes to get out.

I went to the Dr. the next available appointment within a week.  In the meantime I had gotten a red circular rash around the crater. I was experiencing fever, extreme headaches and I remember holding my eyeballs because it was so intense… my eyeballs felt like someone was sticking pins into the backs of them, my eyeballs felt bruised, and my sockets were very sore.  My Dr. was on mat. leave and her fill in a young Dr. listened as I described to her what was going on.  When I told her about the red circular rash her eyebrows immediately raised…she seemed alarmed.  She got her laptop out and started to search…I wondered if she was looking a Medical Journal for Dr.’s, so I peered over and peeked, I noticed the screen was blue as she was moving from page to page.  She ordered the Lyme test, which in Canada is the Elisa…and of little value.  It came back negative.  I asked her if the rash meant that I was bit by the tick or if it meant Lyme Disease …she said she did not know much of ticks or bites but did not think it meant Lyme, in retrospect I think she did know! I then did not have the internet and could not search everything I should have been.  It took awhile for the test results to come back as they were not done in my area. So I left feeling kind of relieved.

Things started to go downhill fast…woking in a call center handling about 60-70 calls a day and having to repeat the number back to the customer in my opening sentence, I was noticing that I could not repeat it back correctly, no matter how hard I focused and concentrated or how slow I went.  I was becoming dyslexic.  The lighting really started to bother my eyes and I started to wear a ball cap.  I was not able to sleep at night, fever, chills, night sweats (ring them out kind), my legs both had swollen from ankle to thigh…they looked like my mothers when she had pneumonia and was retaining fluid. My son told me I needed to exercise more, I said your probably right, since I now just wanted to sleep all the time and I remember my neck was also very sore. Soon I was putting the milk in the cupboard and the sugar in the fridge…thinking I am getting old, its age!! One day I ran a bath, disrobed and went to get a drink…when I came back my shirt was in the tub floating around…I remember standing there dumbfounded and could not remember doing it or how my shirt got there.  I started to miss a lot of time from my job of 8 years, I could not get out of bed, then started to sleep 13 hours then up for 2 and back to bed and still tired.  When my rent became past due and I got my 5 day eviction because I let it go…to tired to handle it.  I remember thinking, I had 5 days left to sleep…wouldn’t it be nice to just go to sleep forever (no kidding) and I caught myself smiling at that …back to the Dr.s I go.  She ordered blood tests, when they came back she told me to come in the next day.  My thyroid is underactive and she put me on synthroid 50mg per day. It did nothing. By May of 2009 I was fired from my job of 8 years.

By now my symptoms are progressing to neck cricks (I could do 15 in a row) sore neck, cough, pains in my stomach, lower back, periods are 5 times worse than normal, my joints hurt everywhere, my muscles, fever, my ribs feel like someone kicked the s*#t out me and felt bruised, my vision is double, blurry, floaters, sensitive to light, the bottoms of my feet were so sore it was very tender in the morning I had to walk hunched over holding onto things so I wouldn’t put all my weight on them or they would split open, my heels feel bruised, I was bruising easier, noticing 4-5 inch red streaks resembling blood poisoning, tiny red spots over my body, my fingers hurt, my leg lower feels like I walk with a broken bone, lactating, incontinence, but the worst was the brain fog which I can only explain as feeling like you have Alzheimers and know that you do. Which would be way worse than not knowing.

But, I struggle on, knowing something was wrong with me.  I managed to land my dream job in a Hospital doing clerical work. And by far the best and highest paying job I have ever had.  The brain fog is intense. My brain feels like mush…by then Im in so much pain, I’m having a hard time doing anything but I could not retain any bit of new information I was learning much less remember anything I should have been retaining, it was very frustrating …I tried so hard…I wanted that job…and I wanted to retire there.  The day I was let go …I was brought into another area and the Supervisor stated that I was a hard worker, showed up for work but she just thought that I would never understand this job. My world crumbled…I thanked her for the opportunity and that it was really nice to meet her…she looked at me like I had two heads…I have no memory of ever meeting her …none.  I cant follow a movie any longer, dont understand the story line or all the people in it how they relate to one another …its like you miss things..and dont remember a lick of what I watched.

Back to Dr. I go… after I research the internet on tick bites and figure that I’m really in trouble…and losing my mind…I go to the LLAD site and download the sympton list. I answered it honestly and was so suprised on how many of these wierd symptoms I had…frantic, scared and in a state of panic. My original Dr is back and she is not one of my favorites anyhow…I show her the paper with all my check marks tell her go back and look at my notes, you will see everything I was complaining of has a corrulation to the tick symptons.  She looked at the paper and said, rolling her eyes like I was a nut…”you have all of these”!!! I really did not take pleasure in being called a liar and told her to keep the paper and I would go from the top of my head (which is also tender) right to the tip of my toes and she could checkmark to see how many I got right. She did not but wanted to paper to prove how nuts I was.  Then she gets on the depression route and said all these symptons could belong in other groups…other groups meaning depression…have you ever thought of suicide, are you depressed…I got soooo mad. I asked her if she thought the lactating belonged to her depression catagory route…and demanded I go to the Infectious Disease Center …who by the way … will not see you without a positive test. I did not get to see them.  I need to have the Western Blot test from the US probaly around 650.00 I ordered the kit, recieved it but could not afford it.
Lyme Disease is not even screened for in our Canadian Blood system…when you give it or you recieve it.    This is another Aids scandal…how many people gave blood and did not know what they had when they had Lyme.  Our Government is letting this happen to us and they need to be held accountable, it has been going on since the 70′s and now is in epidemic state.  You advise us about Lyme Disease, sometimes where they are, but we cant find a Lyme literate Dr. in Canada or test positive so one can treat us, and then we are left to pay tens of thousands of dollars to get treatment (if you have it $).

I’m waiting to see my first Lyme Dr. in August 2010…but now not only do I have Lyme but probably two co-infections to go with it…and I wonder if my sore, sore heart will give out on me before I get there…if I’m going to be able to afford the medication, if I will ever get my life back, my health…educate and protect yourself and your loved ones …dont be ignorant to this …I dont want you to go thru this…how would a child explain all these symptons….

I’ve been pretty personal …because you all need to know…and btw….if I had a tick on me in Sobey’s on check day …my clothes are coming off…!!!!

Take Care, hugs ing