Past treatments and current treatment.

So sorry I've taken so long to write this new post but I'm a bit of an avoider when it comes to new changes, I'm a bit of a control freak.
So today I thought I'd tell you abut the treatments I've done in the past and the treatment I am about to start all the way in America! Freaky stuff right?! First off I want to say that this is not an index of what works and what doesn't, just because it didn't work for me doesn't mean it doesn't work at all, and I hope if you're endevouring in any of the treaments I talk about that they're successful for you :)

So at the beginning of my journey with illness I went to a few different natruopaths, I totally believe in natural therapies and that they can totally work but in my case these treatments were for symptoms and not the route cause which didn't work out for me.

After a few months of natruopaths, we saught out a CFS specialist to find out if that was what I had and if he thought he could help me. Don was very helpful and there was a definate improvment in my symptoms after the treatment plan he gave me but after a while I wanted to go somewhere else as I never believed I had CFS. But the treatment involved daily B12 injections, drugs for orthostatic intolerance, vitamin D, an electrolyte replacement, probiotics and other changing minerals and vitamins throughout the treatment. I was also on a very restricted diet of no fructose, dairy or gluten and also organic. I stuck to this diet pretty much throughout the six years I've been unwell.

After this treatment I didn't recieve any treatment for about a little less than a year until I became much worse after a pretty horrible year for me emotionally. It was then I found an out patient program run from a hospital not too far away that ran for 8 weeks and consisted of Cognitive Behavioural Therapy combined with a graded exercise program.

After that I went to a different doctor who worked along side a natruopath. With them I started a regime of homeopathic doses of antibiotics another strict diet and again ever changing vitimins. I did this for about 9 months.

Then I went back to the CFS doctor and started the same treatment as before, and it was around this time I was tested for Lyme disease and we began searching for treatments that have had good results for others.
I went to a doctor of Chinese medicine who treated me with vitamin C, glutathione, B12, and heaps of other things and this treatment worked pretty well for me, I went through a detox and we aimed to prepare my body for the trip ahead. 
So this is where we come to the America thing! The treatment I'll be going through is specific to me but I'll try and give you a general overview. It is 95% natural treatment and 5% antibiotics, I'll do genitic tests aswell as other tests and will then begin treatment. I'll be having an IV drip twice a day that is actually a proprietary blend. This treatment has a 93% success rate or something like that so I'm so hoping I'll be a part of that statistic!   

So yeah that's what I've done in the past and what I hope will work for me in the very near future.

Oh so you're just like, tired all the time?

No. Just no. For six years now that has been the question asked, over and over again. I know that it isn't the persons fault they just don't know enough to understand... but that doesn't mean I haven't wanted to hit some people out of frustration. So I just wanted to give a general over view into the symptoms of a typical Lyme disease/ originally thought to be CFS and Fybromyalga/ anxiety prone person.  This is by no means what every person with these diseases or syndromes goes through it is just a simple explanation of some  of the symptoms experienced by me personally and possibly others similar to me.
So pretty much I am tierd all of the time, but it isn't normal tired, it's a tired that can never be fixed by a good nights sleep (what even is that?) or by a quick nap. Have you ever been so over tired that you couldn't actually get to sleep easily? It feels like that but when you do actually sleep you wake up feeling worse than when you went to bed the night before. It is a constant cycle each and every day, and this is usually accompanied by restless and broken sleep for most CFS and Lyme sufferers.
Along with the tiredness there is pain. The type of pain and severity of pain varies dramatically from person to person but pain is something that is invisible in itself which in turn makes it pretty hard to generalise.
Sooo.. with that in mind this is only my own personal account of pain that I feel and live with every day. My pain is chronic, I've had headaches every day for 6 years, they vary from day to day, from small headaches that are no big deal, to blinding migraines that leave me in bed for a day with every blind in the house closed and my family speaking in whispers (those poor people).
I have constant muscle aches that I can only discribe as feeling like my muscles are being ripped apart slowly under my skin. It hurts to walk, sit, stand and lie down. You get used to it after a while but there are peaks and troughs and sometimes it is unbearable. And although I try, usually there are no amount of pain killers that will help. Joint pain is also prominent and is said to be very similar to the pain caused by arthritis.
I generally feel weak. I can't really think of any other way to describe it. My muscles over the years have deconditioned and my body can't handle anything strenuous, or not strenuous actually. Walking from my bedroom to the loungeroom is difficult and if I go out anywhere (which doesn't happen often) I have to be in a wheelchair.
Although all of these symptoms are pretty horrible 'brain fog' is probably the one I hate the most. I've always been a pretty academic person and learning and pushing myself to learn new things and do my best have always been things I've enjoyed. My brain however seemed to be one of Lyme disease's first points of attack. Pretty much every day I struggle with what can only be described as 'brain fog', it's pretty much like someone has come along, put a blanket over my brain and told it to be quiet and go to sleep. Which is a giant pain in the butt for someone trying their hardest to complete VCE. Most of the time I find it difficult to think of the words I'm trying to communicate with, I have no idea how many times over the years I've said 'Um what's that word?' This is probably the symptom that is hardest to describe, but pretty much at around 4 in the afternoon my brain refuses to work. I can no longer understand what it is I was trying to read, or I find it very difficult to express to mum or dad how I'm feeling or simply have a conversation because words are difficult to come by. Some days I wake up like this and my parents have to read out my school work to me over and over again until I understand or they have to read it themselves and then tell me in a way that is easier for me to understand. It's annoying but slowly I get there. Most days... which leads me to my final point.
The isolating effects of all of these symptoms are horrendous. My dad very creatively calls it 'medically induced solitary confinement'. Because I'm no longer able to actually attend school the people I see on a regular basis are my parents, my best friend and doctors. I know it isn't an actual symptom of Lyme disease but it is a result of the others and it is not a fun time. It's lonely and sometimes I just have to allow myself to hate what Lyme disease has done to me and hate the way I have to live because of it. But then I move on and pick up my good attitude that I throw on the ground like a three year old having a tantrum, stuff happens. 

Isolation and Ignorance.

So these are two of my least favourite words and unfortunately they are very closely related (for me anyway.. anyone else?). There was an article in the paper today on Lyme and how the Australian government doesn't recognise its existence in Australia. Obviously I know it exists in Australia.... where else would I have got it considering I haven't been overseas? I've walked into doctors offices and had them look at my blood test results and tell me it isn't true, I'm either lying or it's all in my head. Ouch. The ignorance of the Australian health department and doctors hurts, yes, but to me it doesn't compare to the isolation felt due to the absolute isolating nature of Lyme disease.

As it is an illness that isn’t very well known it’s extremely hard for people to understand what it’s like to live with every day. People usually only see you when you’re having an okay day and have possibly put on some make-up or simply people seeing you smile may lead them to think everything is ok. I am by no means blaming anyone for my feelings of isolation, I’m simply stating how I feel. The actual symptoms of Lyme are isolating in themselves, I know personally I’m usually unable to go anywhere and if I do I’m in a wheelchair. For an 18 year old (and I’m sure for all ages) being house bound drives you absolutely crazy. One frustrating thing for me is coming to an age where I have my licence and I’m legally and adult, and yet most of the time I can’t drive at all and I definitely don’t feel like an adult when I have to rely on my parents to pretty much do everything for me, cook, drive, help with school work, sometimes even having to help me walk from the lounge room to my room.

I’ve found myself becoming very angry with nobody in particular, mostly just the situation I find myself in, (being totally isolated, loosing friends, being sick and having a really annoying health department) but then I think... why be angry? Where is that going to get me? Wouldn’t I be much better off possibly connecting with a group of people who know what I’m going through such as Lyme or CFS support sites and what not? (this is a bit of a touchy subject with me but I’m learning). Also I may have lost friends but I still have a select few that are totally willing to help me out when I’m feeling completely cut off from the world. And I have an amazing family who love and support me in anything. So what right do I have to not ask for help? Especially when they offer.

Don’t get me wrong, if you have feelings whether it be anger, sadness, frustration etc. I’m absolutely all for letting yourself feel them and then move on. But I’ve decided to reach out to those around me and ask for help (something my A type personality has never been good at) and I think it’s going to be really good for me.

But I realise not everyone has been equally blessed with support around them, and if you’re reading this and feel that way there are others in the same boat, and being one of them I know I’m willing to help so I’m sure others will be too. (that sounded totally lame but I hope you get my gist)

So that’s my half complaining/ half trying to be supportive rant over.

What's this all about?

Hi my names Mia I'm an 18 year old girl and I have been diagnosed with Lyme disease. I've googled Lyme and all I've come across is a lot of very technical and factual sites and nothing to tell me what it's actually like from someone who has it. Not someone saying "this is what I did to fix it and you should do it too" (I know they're all good intentions but after a while it gets grating) just an honest account of emotions, symptoms and some encouragement and love so you know it's not always bad. 

Before I get into a bit of my back story I would just like to say thank you to anyone reading this. I hope it helps you and if you're suffering from lyme (or any other 'invisible illness') you're not alone and if you just want to know a bit more, thank you for that too. If I can help one person I would be honoured...  And if this only helps me, well... That's cool too! 

So a breif overview of my story.

Five years ago I was just an unassuming, full of energy, never been sick young teen, until I was hit with a bug that would just not quit. Before this point I had never been to a doctors and I'd always lived a heathly organic lifestyle (thanks mum!) and then i became very sick very quickly with what doctors told me must have been Glandula fever and another virus of very similar nature, (even though these viruses didn't show up as active in my system at the time) and then six months later there had been no change for the better, only the worse. My mum has a beautiful friend Wendy who suffers from Cronic Fatigue Syndrome (CFS) and she noticed a lot of the same symptoms in me that she saw in her. So in 2009, the year after I first became sick, I was diagnosed with Cronic Fatigue Syndrome. 2008 and 2009 were all a bit the same, I was mostly unable to sleep, couldn't consentrate in school and was going through a never ending series of doctors appointments. 2010 some of my symptoms improved and then 2011 was the start of the worst three years of my life health wise. I began a program for the treatment of CFS that made me so much worse (not blaming the program, just didn't work for me) and then i progressively became worse and worse. I kept bugging my parents and doctors to keep testing me for other things, apart from my CFS specialists I haven't had any other doctors believe that I was sick at all. Either i was making it up or my poor mum had Munchausen syndrome by proxy. During these past three years I was also diagnosed with pretty bad anxiety problems and Fibromyalgia. I still insisted on being tested for more things as I never believed I had CFS. Then finally this year (only a few months ago) was I tested for and diagnosed with Lyme disease. This unfortunately is not recognised as being in Australia and I have not been to another country since I was 8 and I was definately not bitten then. So I've had doctors tell me it isn't true, of course I don't have Lyme (this said while they hold the blood test results saying otherwise in their hand) but that's fine, I know the truth. Unfortunately I have to live with it. 

So that's a general outlook on my background. I'll delve into different things as I go and I hope you join me on my journey and I can encourage you on your own. 

You may feel isolated and like you're fighting alone, but hey.. I'm here too :)