Hello there! I hope you all had a good weekend. It's been a good weekend for me as well despite one small problem I've spent a majority of it lying on the bed/couch feeling utterly exhausted. Even writing this blog post is a struggle because I just find it so hard to concentrate on anything, it feels like my mind has brushed its teeth put on its comfiest pjs and turned in for the night. Oh yea even though I'm utterly exhausted I usually find it extremely hard to fall asleep at night. Hence why I'm writing this blog post at 10.30pm. The reason why I'm so tired, my brain is mush and I'm writing in the late night hour is because I'm in the process of being diagnosed with Lyme disease.
I say in the process because Lyme disease can be hard to get a definitive diagnosis for, so even if you test negative on the blood test you can still have it. I have a wide range of Lyme symptoms and have already had three main co infections confirmed but once these last test results come back I should hopefully have a better picture of what's going on with me. So what exactly is Lyme disease I hear you ask? Well I am no authority on the subject by any means I can only tell you guys about my experience so far and what I've learnt along the way.
About two years ago I was bitten by a tick within Australia. My husband and I were going for a drive up in the hills, about 45 minutes from our home when the call of nature well... called! We pulled over onto a side road and I went to the toilet between the car and the start of the bush. I was probably there for five minutes or so and didn't notice or feel anything. We drove home and everything was cool. The next day I woke up and don't remember feeling any different until about lunch time when I realised as I was driving that my knees were starting to feel sore. I had been hitting the gym pretty hard in the last few weeks in preparation for our upcoming wedding so I just put the pain down to over doing it with the weights. While driving I also went to brush my hair off my neck when I noticed the tiniest bump near my collar bone. I have two cats and often carry them over my shoulder when I pick them up. I remember thinking to my self 'damn those cats must have scratched me' causing me to bleed and form a little scab.
The next morning my knees were so sore that I could barely walk. As I was walking up this hill to get to work I had to pull my leg around in a circle to move forward as if they were in braces because I just couldn't bend them it hurt so bad. Again silly me just thought I had seriously over strained my knees by using the leg weights at the gym! I ended up leaving work early that day so I could go to the doctor and get my knees checked just in case. The pain level by this point had reached ten out of ten. I have absolutely no idea how I drove home in a manual the pain was excruciating! Unfortunately I couldn't get a doctor appointment until the following day so I decided to have a shower, relax and rest my aching knees. Whilst getting ready I looked more carefully at the little 'scab' on my neck. It felt like it was ready to fall off so cringing I decided to just pull the whole thing off. It was so hard to pull out! It was then that I had a closer look at it, a real close look... And I realised it was a bug!!! A tick to be precise :( I was so unbelievably grossed out about this that I freaked out quite a lot as you would imagine!
Funnily enough even though I've never knowingly encountered a tick before, I recognised it straight away and had the foresight to put it in a jar. Really because I didn't want to lose it and have it reattach to me! but also because the only thing I've ever heard about ticks is that they can carry lyme disease. I thought to myself strangely in that freaked out moment that I should keep the tick 'just in case'
Once it was removed and I had calmed down I decided to google ticks and Lyme disease. In all my years I've never encountered a tick and I've been camping in the bush plenty of times through out my childhood, so I really wanted to find out more about them. While reading up on Lyme disease I realised that one of the main symptoms was that it will affect your joints especially your knees as they are the biggest joints in your body. I decide to let the doctor know the next day what I thought had happened to me as I was convinced now that my knee pain was caused by the tick.
The next day I saw the doctor and told her what had happened and what I had read on the internet. She examined the bite site to make sure there was no tick left behind and then agreed to prescribe me with two weeks of antibiotics. Even though I mentioned that I had read that two weeks wasn't long enough, she assured me that that was all I needed but to come straight back if the symptoms didn't start to dissipate in a day or so. She also sent me for a blood test to test for lyme disease even though she firmly stated that it didn't exist in Australia, she thought however I may just be experiencing another form of related infection. The test came back negative and after a few days my knees seemed to go back to normal and I felt fine. So I kept taking my antibiotics and forgot all about it.
A few weeks later however I noticed a lump under my skin near my collar bone. Worried I decided to book back into the doctor to have it checked out. I had to go to a different doctor this time as my other doctor was not available. My doctor had a look and confirmed that it was a lymph node. When I told him I had recently been bitten by a tick he put it down to the fact that my body was fighting the tick infection and thus my lymph nodes had come up in response. Little did I know that this was a sign that the Lyme disease was still active and progressing.
To cut a long story short for the next two years I starting accumulating a multitude of weird symptoms such as nerve pain, pins and needles all over body, knife like headaches, extreme fatigue, weight gain, swollen glands in my throat, my face, nose and throat always felt swollen, I had hot flashes, tightness around my neck, unexplained depression and the thing that finally made me realise that there was something seriously wrong with me... all of my joints started clicking and hurting at the same time. It felt like they are just grinding in their socket! When I crouched down on my knees and then stood back up again, both my knees make a large cracking and popping noise. My jaw also constantly clicks and aches when I eat.
I did go for numerous checkups for these symptoms during those two years. I had all of my blood levels checked but everything came back as normal. These symptoms would also come and go. So once they stopped and I felt better I forgot about them and continued on. Little did I know though that they would be back in a few weeks but always different. So I persisted on and as the years went by the symptoms got worse and worse. One day while I was looking up my various symptoms and possible causes I came across a lyme symptom check list. I looked down the list and basically checked everyone of my symptoms off the list! I started to relise that it was quiet possible that I had never killed the bugs off in the beginning and that over the years it had just been going nuts enjoying free reign over my body.
I am of course seriously upset that if these doctors had been better educated about Lyme disease they would have relised that two weeks of antibiotics wasn't long enough to eradicate the diesease from the body and I wouldn't have spent the past two years suffering a multitude of symptoms and feeling like I'm a hypochondriac. But I do realise that as doctors they were simply following the medical guidelines set for all doctors in Australia. What I can't forgive is how the doctors treated me when I went back two years later asking them to retest me and investigate the possibility that I might still have Lyme disease.
The response I got when I asked my main doctor and another doctor to test me more thoroughly for lyme diesease was astounding. 'It doesn't exist here in Australia, two weeks is more than enough to treat any infection from a tick and (my favourite) 'there's nothing wrong with you, you must be depressed!' To me it's simple if you don't know what is making a person sick then why don't you simply come out with 'I don't know' and refer me to someone else. I don't think it's right to just put it down to the person being depressed. To be honest I was depressed by that point but it was because I had been sick for two years and no one believed there was anything wrong with me.
After leaving this last doctors office in tears, I got online and researched some more. After a lot of reading I found out that we had a lyme literate doctor in our area that actually acknowledge and treated lyme patients. I booked into this doctor and after a three month waiting period (yup that's how popular he is pretty weird considering no one in Australia is meant to have lyme) I finally saw him! He was great he listened to everything I had to say wrote down all my symptoms, looked at my past test results and then scheduled his own tests. He could see from previous tests (that I had sent over seas in desperation one day while waiting to see him) that I had tested for a few of the main co infections all ready but he asked me to send more urine and blood tests to an Australian clinic in Sydney to see if I would test positive for the main strain of lyme.
I will be seeing him again in February and will hopefully finally find out my results then. So there we go my little lyme journey so far :) I'd be lying if I said it has been easy these last few years but at the same time I am so grateful that I found that tick and pulled it off myself. If I hadn't found that tick who knows where I would be right now. You have to find the positive in everything or at least try to :) well the next blog post I write on lyme will hopefully come with a firm diagnosis!
Until then stay happy!
Jen :p
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