While most people have not heard of Lyme Disease, there are a growing number of cases in Ontario. The impact can be severe, as you will hear in these stories from Huron County residents who live with Lyme Disease.
Lyn's Story
1. My name is Lyn Jerome, and I live in Clinton, ON, in Huron County and I am a victim of Lyme disease.
In 2003 I had gone for a walk in a bush area, and a tick decided to go for a ride with me, and four month later, or I should say 1 month later the tick was removed, and 4 month later I was in the hospital for 9 days, and I was a year being diagnosed with everything and anything, but anyways it was a year before I actually got to find out that it was Lyme Disease that I had, then I was almost a little over a year on medication. I fortunately caught it early enough where I didn't have to through the years and years of it. Anyways I have and was off for 2 years and then I had to go back for another regime of medication. To this date I am pretty good. I do have some residual effects from it; Memory loss is defiantly one of them, and fatigue is another culprit. It was just a devastating thing for the whole family. The way I am and from being very active to mediocre active, is hard, it's a hard pill to swallow.
2. The symptoms I experienced with Lyme Disease, especially when I had to go to the hospital to find out because of the severe headaches and flu like symptoms, I ended up for 9 days in the hospital. I shook so bad that they almost had to lash the bed down and the next thing I would be in the sweats and back to the chills, and after we got all that settled down it just seemed to be one thing after another. It just always, headaches were always prominent for a long time and fatigue and that. A lot of times I say well I am going for a walk and I might get 100 ft. from home and that'd be it, I'd be done and I would have to go back home, so anyways it just took a long time to get things sorted out, even to this day, there are times I just don't feel like going for a walk!
3. Going back to when I first recognized that something was unusual, I thought I had what I can a 'skin tag', and anyways I happen to mention to my doctor about it and he looked at it and thought it was a skin tag also and he told me that it was and it would probably fall off on its own. Within a week it was almost twice the size and changed colour drastically. I went in to have it removed and he hit it with alcohol and he said this not a skin tag, this is a tick. With the tick, they can test the tick and if the tick has signs of Lyme disease, then you can get on your antibiotics early enough and maybe you'll still be able to go to work and just be on the antibiotics for awhile. The earlier you get diagnosed the easier it is to treat. I defiantly do feel like I am one of the lucky ones, because of being diagnosed so early, the earlier you get diagnosed the more likely you will come out of this unscathed, and be ale to lead a normal life, but the longer it is left, the less chances there are. There is people that I have seen in my visits to the doctors, and anyways was told that they had lyme disease and you would not believe the younger people, like in their 20's, walking with a walker and just unbelievable, just can't talk, its just unreal the things you see. But what it does, it does anything and everything, I guess that why they call it the 'chameleon' disease.
4. The treatment that I had, once I found a lyme literate doctor, was a good year of oral antibiotics and test, blood tests and all kinds of tests. My favorite saying was 'stab, jabbed, and looked at.' You get sick of it after a while. But anyways you know it has to be done, so you just go ahead and do it! I was a little over a year doing that and I was back to work and I had a relapse. They put me on pick-line, which is intravenous and unfortunately I couldn't handle the heavy doses that it was giving me and I had to pull the line. I think that was enough to catch the end of it, the rest of it, hopefully. To this day they say I have been fairly good, because of the length of time. I have residual effects from it. I was off work for over 2 years and then I had my second relapse, I had to go into retirement because I was at age 65 and to this day I am still retired. (Laughing)
5. If you want to go for a walk or hike, stick to the paths, but if you decide you want to wander off into the deep grass make sure you wear light coloured clothing, long pants, tuck you pant legs into your socks. Good idea would be to spray yourself with insect repellent, especially with deet in it. Go for your walk and enjoy your outing, but when you come back, check yourself over, and the areas you can't see, have somebody check them for you, to make sure you have no ticks. It would be a good idea to spray yourself down again with the insect repellent, just to be on the safe side!
Doris' Story
1. My story is a little different because I don't remember having a tick bite or the typical rash that goes along with Lyme disease. I do remember having a rash in the back of my neck, up in my hair line. But I never investigated what it looked like, and I thought it was a spider bite that had caused it, because we had some spiders in our home. In 2003 I developed a very strange neuropathy which was my abdominal muscles had started to bounce as if I had a baby inside; and because of that I was sent to a neurologist. The neurologist sent me for other testing which were all normal, and then I was sent for a re-check in 4 months with him. During that 4 months, I developed other symptoms. I had a high fever, flu like symptoms, my neck became very stiff, my muscles in my back were so tight, and they started to do some jerking also like the muscle bouncing in my abdomen. My right leg muscles became so tight that I had a limp. I had a headache so bad it felt like there was a golf ball stuck up the back of my neck, right at the base of my skull. I had been working full-time for several years and by August of 2003 I had to stop going to work because of all the symptoms. Even walking, the thought of walking to do groceries was too much for me. Everyday was day by day. I had joint pain, arthritis pain and that also caused some trouble with life skills. My muscles were so weak that I was having trouble opening windows or picking up a pot off the stove.
2. I had done some research on the internet to try to understand why I had these bouncing muscles, and one of the things that it suggested was to rule out Lyme disease. I asked my family doctor if I could have the Lyme disease test and he agreed. The Lyme disease test came back as negative. So I assumed I didn't have Lyme disease. From there on I kept going to the neurologist and to a gastroenterologist because of my digestive issues and also to a cardiologist because of the tightening chest pain I was starting to experience. That continued on for 5 years. In the fall of 2008, I heard a radio talk show from the Wingham area and there was a Lyme literate doctor on that show. One of his patients called in and was describing her symptoms and surprisingly her symptoms were almost identical to mine. And from that point they suggested to contact the Canadian Lyme Disease Foundation for more information. I did that, and I was referred to an Ontario Support group person. That Ontario Support person suggested some Lyme literate doctors that I could be referred to. I was able to see that doctor in the beginning of January of 2009. On my first visit be spent an Hour and half with me doing my consult, and in that hour and half consult he agreed that I had Lyme disease. He clinically diagnosed me even with the Lyme test being negative, and he diagnosed me on the spot and I started on my anti-biotic therapy that week. It is very important to stress that you can have Lyme disease even if the serological blood test is negative. If you feel you have symptoms and the Lyme test is negative the disease had to be ruled out clinically by an infectious disease specialist, specializing in Lyme disease. In other words a Lyme literate doctor. If I would have known this, it could have saved me 5 years of unnecessary testing and continuing illness. I could have started treatment so much earlier.
3. I am still currently on Anti-biotic treatment, and it's a little over the year and half later because I went undiagnosed for so long. It is harder to tackle this disease, the sooner the treatment starts after a know tick bite to symptoms consistent with Lyme disease are noticed the better the disease is easier to halt, the sooner it is found. I am still on treatment, everyday is a different journey. I have to be careful how I pace my life. I still have issues, digestive issues which can be hindering to doing a whole lot. I have intense fatigue some days, so if I have a plan to go away on a day and I wake up with that intense fatigue, it's usually a no go. I have trouble doing more than one day's activity and planning and another day's activity. The next day because the fatigue catches up with you.
4. You may not experience getting a tick bite only at a wooded grassy area, the ticks are also carried by migratory birds and also they will be carried into your house if you have mice in your house, they can be carried in on pets and go from your pets on to you or into your bedding. They can be carried on and cause trouble for your horses, so if you're a horse back rider, you may be able to get a tick that way. You should be wary of ticks basically; they can be in any area: picnic areas, even in your back yard, because of the way they will travel on various animals and birds. My advice for others is that if you notice; first of all if you have a tick bite or notice a tick on you to have it tested. If you have any sort of rash that is unusual to especially if it's a bull eye raised rash to seek treatment right away and to make sure that you get a referral to a Lyme literate doctor right away, so that treatment wont be hampered in any way. If it is Lyme, you want to get to it as soon as possible.
5. I think it's important to know that through any illness, which includes Lyme disease, that you don't continue to dwell on the pain, the headaches, the suffering, the changes that come to your life cause of the loss of; in my case: employment, the ability to just pick up and leave on any day and just do whatever you want. You have to move to a place of joy, to see joy each day, to find the small things to be grateful; to be grateful for all the things you do have, rather than the things you don't have. Appreciate your family, your friends, and those who care for you and the people you care for and all the blessing that can come to you through bad and good.
