I was first officially diagnosed
with Lyme disease in January 2015. It took three years from the time I was
bitten by a tick to get a firm diagnosis. When I was first bitten I was treated
with two weeks of doxycycline, told that Lyme disease didn’t exist in Australia
and that the excruciating pain in my knees was simply a harmless
infection
Fast forward three years of random debilitating symptoms, countless doctors and every blood test known to man, when I finally found a Lyme literate doctor, who with the right testing and knowledge diagnosed me with Lyme disease from a positive DNA blood test (If you’d like to learn more about when I first contracted Lyme disease click here and to find out how I was diagnosed you can click here)
My doctor, family and friends were amazing when I first found out that I had Lyme disease. Without their love and support I really don’t know where I’d be right now. However even with the doctor’s advice and the millions of articles on Lyme disease that I had read, I realised that the best person to give advice on a particular subject is someone who is experiencing it for themselves. So that’s what inspired me to right this post. The advice in this post is basically all the tips and tricks I have learned so far from treating my own Lyme disease.
Please remember though that Lyme disease can affect everyone differently, so what works for me may not work for you. Also I’m not a medical doctor I am simply sharing my experience with Lyme disease in the hope I can impart some knowledge and make a few of you feel more at ease by knowing that you’re not alone in this. Always follow the advice from your doctor and chose the treatment and choices that are best for you.
1) Don't Panic
Ok first things first grab a
glass of wine or a piece of chocolate if you're under drinking age (we
will worry about giving these things up later), have a sip or a nibble and
follow me... breathe in and breathe out.
Now I know this might be hard for
you to hear at this early stage but..
you ARE going to be ok!
don’t believe me?? Ok well baby
steps...
Look I’m not trying to sugar coat
it. From my own experience Lyme disease is confusing, scary, expensive and can
seriously affect you physically, emotionally and financially! It’s a jerk of a
disease (and that’s saying it nicely) and I wouldn’t wish it upon my worst
enemy. Great you say, so please tell me again about how I’m going to be ok? Ok
well you’re going to be ok because you’ve crossed one of the biggest hurdles,
you’re diagnosed! You finally know what has been causing all those weird
symptoms over the last few months/years. Now that you know what the problem is
we can get down to treating it and getting your life back on track.
After visiting all the doctors
who told you that there was nothing wrong with you and waving your results in
their face (err ok that’s what I wanted to do when I first found out) You will
more than likely cry, get angry and finally feel a little depressed. It’s ok to
feel like this, let the emotions pass through you it’s all part of the process.
Sure there are a lot of things in your life that are going to change and that’s
scary yes, but not impossible. You may have Lyme disease but you don’t have to
let it take over your life or define you if you don’t want it too.
2) Organise yo’ self
When you go in to talk to your
specialist take three things with you, a recorder to record what the doctor is
saying, a loved one to support you and a list of questions you would like
answered.
When I first went in to see my
specialist after being diagnosed, I was deep into my Lyme symptoms. I found it
very hard to concentrate on what anyone was saying and anything they did say went
in one ear and out the other. If you take a recorder with you, you can replay
it over and over again until you know your medicine and diet regime like you
know you’re ten times tables.
Your loved one is there to not
only give you love, support and make you laugh at the dodgy magazines in the
waiting room, but to also ask any questions and concerns they may have.
Finally take a list of questions
that you want to ask your doctor. An appointment with my Lyme doctor was
expensive and he also had an extremely long waiting list! Pretty funny
considering Lyme disease apparently doesn’t exist in Australia…So when you
go to your doctor you want to make sure that you are utilising your time as
effectively as possible. Keep a notepad near your bed or in the kitchen
and make sure to jot down any questions or concerns that pop up between doctor
visits.
3) Money money moneyyyy
Investigate any benefits you may
have available to you and start applying. Work out the cost of your
medications/treatment for one month and then break it down into weekly
payments. Set up a specialised bank account and put that money away
automatically so that when it comes round to buying your pills or visiting your
specialist you have the money there ready to go.
Treating Lyme disease is an
expensive business so if you can think of any way to generate extra money even
if it’s knitting beanies and posting them on gumtree embrace it! Any creative
outlet is good for your mental state of mind too!
Check your leave at work (if you
are working) and educate yourself on your entitlements. There may be days when
you don’t fell well enough to work once you start your treatment, or you may
wish to take extended leave without pay. You want to make sure you’re
completely covered.
Tip: It’s up to you if you want
to let people know you have Lyme. I only told a few close co- workers and my
boss obviously so that they would understand why I might need to run off early
to a specialist appointment or if I needed to take a sick day.
4) Step away from the bread and no
one gets hurt
Now I am by no means an expert in
this area and I am only sharing my experience so once again consult your own
doctor on what you require with your Lyme disease and do what is best for you
and your body. When I was first diagnosed, my Lyme doctor sent me for a food
intolerance test. By eliminating foods that cause inflammation in your body
you’re giving your immune system a fighting chance against the Lyme disease.
Basically I got tested for 110 different foods and they checked to see which
ones caused inflammation in my body. I came up with five main culprits.
1. Cow milk
2. Red kidney beans (weird as I've probably had red kidney beans five times in my life)
3. Egg white
4. Wheat
5. Carrot
After I got the results of this
test and the doctor explained to me what I needed to cut out of my diet I cried
to a co worker for twenty minutes about what there was left for me to eat! No
dairy, no gluten, no sugar, no egg whites. Even a carrot was off limits, a
carrot I ask you! That’s when I got real angry, how can a carrot be bad for
you?? it’s healthy and delicious for goodness sake! In retaliation I ate bread,
I ate chocolate bars and I turned my nose up at my doctor's recommendations.
After one particular wheat,
chocolate fuelled binge when I was feeling really bad, it started to
sink in that my doctor wasn’t banning me from these things out of spite he was
trying to help me. You can’t rely on just the antibiotics on their own. Your body
works as a marvellous antibiotic as it is. It’s already there on the
ground running, why wouldn’t you try to fuel and energise it so it’s
working optimally and able to easily kill all those crappy bugs.
My advice is to ease into your
diet. Start with just missing sugar in every second cup of tea, or buy a
few brands of dairy free milk and have a morning tea with your friends where
you rate the best one. Bit by bit you will grow used to it and as you start to
feel better you will naturally want to eat better and keep the good vibes
flowing. Also don’t feel bad if you want to treat yourself or if you slip up.
Like I said eventually you will know what you can and cannot tolerate and you
will start to find alternatives that are surprisingly not that bad after all.
5) You get more bees with honey
There are going to be days when
you can’t get the appointment that you want or you have a total freak out at
the high cost of medication and that’s ok, just don’t take it out on anyone
else. Always be super nice to your doctor, your pharmacy and especially the
receptionist. Sure the doctor knows his stuff but the receptionist is the
one that’s opening the door. There may be a time when you need an urgent appointment
and the receptionist is more willing to help someone who is genuinely nice and
respectful.
Luckily for me everyone at my doctors practice and the pharmacy I use have always been polite, professional, caring and very interested in my well being. I think the majority of people are willing to help you and go the extra mile if they can so remember be nice and always, always thank them for their help afterwards.
6) Schedule me in
Buy yourself a big week to
a page diary and write in it all your appointments, daily symptoms and
medications that you are having each day. This is an invaluable tool for not
only remembering your routine (can anyone say Lyme brain?) but also
for keeping track of your progress and providing important information to your
family about your medications in case of an emergency.
7) My happy little pill
Invest in a weekly pill box and
refill it every week at a set time when you won’t get interrupted. This way you
only need to concentrate for half an hour at the most while you fill it and for
the rest of the week you can down your pills quickly and get on with your day
huzzah!
8) Educate yourself you must
Educate your family and friends
about Lyme disease. Provide them with an informative link I recommend the Lyme Disease Association of Australia ,so that they
understand the general symptoms, time frames and treatments. I found that when
I told people about Lyme disease most of them had absolutely no idea what it
was, how it was acquired, or how to protect themselves from it.
9) Don’t mind me I’m just mmmblocking
out the haters
Ok so by haters I mean anyone who
smirks when you mention Lyme disease or thinks that your faking your symptoms
and this includes doctors! Now I don’t want you to get angry, I just want you
to smile and walk away. These people are entitled to their opinions and they
can express it as much as they want but your already walking away in the
opposite direction too far away to hear them! It’s your life and your health so
make sure to only surround yourself with positive, supportive people. You know
what’s going on with your body and health and that’s all that matters. Aint
nobody got time for that negativity am I right!
10) Find your joy
Find the things that bring you
sheer joy and a smile to your face and line them up in case of an emergency.
The next time you’re having a bad herx or are angrily perplexed as to why
people get so funny about calling Lyme disease ‘Lyme disease’ in Australia,
(Tomato tomaato let’s call the whole thing off! err again maybe this is just
me) I want you to relax and
grab your joy list and implement joy number one. For example things that make
me smile are
1. Seeing my cats at the end of a long day
2. Watching the latest episode of the Bold and the Beautiful (don't judge me)
3. Sitting outside listening to the birds and watching the clouds in the fresh air
4. Treating myself to a new magazine like Home Beautiful and losing myself in the colorful pages
11) Detox detox detox
One of the most important things
you can do for yourself while kicking Lymes butt is to detox your body. When
the Lyme bugs die they let off toxins. Your body tries its hardest to remove
all the toxins but sometimes it needs a little extra help, so make sure you
have regular Epsom salt baths, saunas and drink lots of lemon water.
All of these things will help your body to remove the toxins. I found that
maintaining a regular detox routine helped lessen the impact of my herxes a lot
and side bonus! the baths and saunas helped to de stress me.
12) I want results!
Ask the doctor to print out all
of your results and keep a copy of them in a folder. I found this very useful
when I went to other doctors and they needed my history or I simply wanted to
check up on how my health was going. By keeping track of your results it can
save you time and money from repeating the same tests and It’s so empowering to
be in control of your health! to know what you’re taking and how your body is
responding to the treatment.
13) Talk to me
Start keeping a journal or have a
regular appointment with a counsellor you trust. You're dealing
with a lot right now and even though you may be feeling positive and on top of
your game it’s still good to check in every once in awhile and get out any
thoughts, feelings or concerns you may have. Just like detoxing your body regularly
it’s a good idea to detox your mind. It doesn’t matter how small or silly you
think your worries or concerns may be write them down or talk to
your counsellor and get them out of your head! Now your minds feeling
free and easy let’s move onto my last tip!
14) Lyme a little live a lot
My final piece of advice is, try
not to make Lyme disease your whole life. Easy said then done I hear
you say! Now don’t take me the wrong way talking about how you feel and
connecting with other people with Lyme disease is SO important and when
you're deep in the middle of a bad herx I know it's going to be hard
to ignore! I'm just saying don’t let it consume you. We all have
things we want to achieve and experience in life so don’t let Lyme disease take
over and control your dreams. Educate yourself, set up your health regime on
auto pilot and then get out there and make your life happen! You’re not that
girl/guy with Lyme disease you're YOU and your bloody spectacular!!
*cough.. steps off soap box*
err ok well I hope this has
helped in some small way! Feel free to drop me a line if you have
any questions and I'd love to hear about some of your experiences and
advice too!
until next time!
jen :P
