Acceptance

I am upset a bit this morning as I have just got an email for my blood results that Dr D made me have in December.  This is the second lot I have had to send overseas (they went to Germany again) to be tested for something that was missed on my original testing. I have tested positive for another co-infection of Lyme disease.  It is so hard to see it written in front of you in black and white. Yet another bug in my system doing it’s damage.  Getting these results is like another kick while I am down.

You know, the stupid thing is that I am still in denial about the Lyme. Even though I have had the positive results for months, I am struggling to accept that I have it.

Some days I feel that I am going to die from this. I wish I had the strength to turn my thoughts around on these bad days and say I am going to win and whack all these bugs until they die off and I am right again. I feel so tired all the time. I don’t know where I would be without Matt and my hubby (especially Matt) reinforcing that I am going to beat this. I have to. I want my life back. 

Two weeks ago, I started on my first anti-biotic and felt quite good.  I had some good days and was over the moon.  My protocol is one week on/one week off the anti-biotics.  This week off has been hell.  I have had a major herx and the jerking has been extreme.  I have been bed bound for most of the week, unable to walk properly, jerking and a shocking headache along with tummy upsets.  My body feels like it has been thrashed from side to side and I am exhausted.  My mind feels shattered from the depression and anxiety which amplify when I herx.

I restart the abx tomorrow and introduce the second one.  Of course, my anxiety is running rampant but I am reassuring myself that I didn’t have any problems going on the first one, so this second one should be ok too.  I just hope it doesn’t induce another herx.

I was determined to push through yesterday as I had about 3 hours of feeling semi-decent.  I decided to tackle the ironing.  Luckily, there was only a small amount.  Standing and wobbling, I managed to get it done.  I draw inspiration from many people.  This time it was someone I know who has been in a wheelchair all his life.  I told myself that this person has never known the joy of standing and I should be grateful that I can.  But I chuckled as I know that he would not have wasted his time standing doing the ironing 🙂

I also managed to do two loads of washing and hang it out.  It made me realise how much I took my good health for granted.  I would grizzle about doing these basic chores before I got sick.  Now, I recognise these as huge accomplishments.

Unfortunately, my window of opportunity ran out but I was so happy to have a couple of hours where I was able to do something productive.

av88

Welcome 2014

My year of positivity (if that’s a word lol)

We were lucky enough to spend New Year’s Eve with friends for a lovely bbq and catch up.  Understanding my condition, we agreed to celebrate New Years based on Sydney time…. 9pm here in Perth 🙂  We really enjoyed our night out and got home about 11pm.  I drove home and had a moment of panic and told hubby he would have to drive.  Of course he couldn’t as he had been drinking, so I used positive affirmations and pressed on until we were safely at home.

The first 11 days of this year have seen me successfully start on my first anti-biotic and luckily with minimal herxing and I was able to reach the full dose within a week.  My regime for anti-biotics is one week on/one week off.

I have managed to achieve some wonderful things so far this year.  I have driven a couple of times by myself, been shopping and managed to do a fair bit of housework.  I even took myself for blood tests which is a huge accomplishment.

I have set myself small goals for the month and so far I am almost on target.  I am taking a break from cleaning today though as it is 44C here and too hot to do anything.

I have had a few days where I am overcome with exhaustion and jerking and these days bring my mood crashing down.  But these days don’t seem to be lasting as long as usual and I am then Blessed with semi-decent or good days.  These good days keep me going.

I have started hypnotherapy to help me deal with my anxiety over taking medications and life in general.  So far I have only had two sessions.  I have a lovely therapist who is kind enough to come to my house to work on me.

Life seems to be a little bit more pleasurable in our household so far this year…..

av87

Christmas 2013

It has been a month since my last post and I can’t believe how fast time has gone.  As I had a lot of time on my hands, I managed to be quite organised this year.  My Christmas cards went out and I had my presents wrapped and under the tree with time to spare.  Thank goodness for online shopping!  I don’t know how I would have coped without it this year.

It is a very sad thing to say, but I really wasn’t looking forward to this Christmas.  Being so withdrawn, I knew that I had to socialise but my pre-emptive  anxiety caused me all sorts of problems.  It was only in the few days leading up to Christmas day that I actually started to think positively and reassure myself that I could get through.  Which I can happily say, I did. 🙂

We had lunch with Gary’s family and it was lovely.  Gary’s two sisters and niece took control and did all the cooking and organising.  It really took the pressure off us (Gary in particular).  We simply had to roll up and enjoy ourselves.  The food was delicious and I settled in to have a nice day.  Gary was able to relax, drink and be merry (thanks to Matt for driving us home) and seeing Gary so relaxed made me really happy.  Thanks girls for making it a wonderful day!

I think I have reached  a ‘stable’ level with my psych meds – well as good as it is going to get.  I have managed to push through on days where I thought nothing was possible.  I am sleeping better again and not so depressed or anxious.

My very brave nurse has been a willing passenger with me driving on a few of his visits and this is definitely helping my confidence.  It is a lot easier to drive with someone else in the car, but I still panic at the thought of driving alone or out of my safe, familiar suburb.  I am sure that the more I push myself to do so, my confidence will gradually return.

I am now on the full dose of my first Lyme med and so far the only side effect was a few really grumpy days.  I couldn’t believe how short and bad tempered I was.  It was only today that I looked it up and realised that this was a side effect of this med.  Luckily it has passed now.  Luckily I have a very understanding hubby also!

I did the most amazing thing on Boxing day.  I drove myself to the Boxing day sales and bought myself a new handbag and top.  The shopping centre was a bit further than I normally venture to and the shops were a lot busier than I really like.  But my determination to have a new handbag won out over the anxiety and wobbliness!  I crashed when I got home for about half an hour.  I was shaking and happily repeating “I did it, I did it”.  This was slightly annoying for hubby as he was engrossed in watching the cricket on tv lol.  I am so proud of myself.

I would like to thank my wonderful friends who popped in for a visit or kept my spirits up prior to Christmas via email.  Thank you for the lovely presents also.  I feel very spoilt and Blessed to have such amazing people in my life. xxxx

I wish you all a safe and happy New Year and for all who need a lift, let’s hope 2014 delivers!

I have a favourite song that I have listened to all year – my inspirational song called “I Was Carried’ by Roma Waterman.  So this beautiful Christmas image is significant to me and a reminder to keep my Faith.  If you are interested in hearing the song,  please click on this link.  http://www.youtube.com/watch?v=WjqnpIZYebw

I was lifted by the Angel's gentle hand...

I was lifted by the Angel’s gentle hand…

 

My New LLMD

 

Well, after waiting 4 months to get in to see Matt’s Lyme Dr (whom I will now refer to as Dr D),  I finally had my first appointment with him last Thursday 21st November.  He is a lovely man and knows his stuff!  

The thing that blew me away is that he treats over 350 patients who have Lyme Disease.  These are people who have tested positive…. and they say LD doesn’t exist in Australia!  Tell that to all the people Australia wide who are suffering every day and like me, bed bound a lot of the time, or even much, much worse.  People like me, who wonder if they will ever regain their health and happiness and are desperately trying to find the strength to get through each day with the hope that the treatment will eventually produce improvements and finally a burst of hope.  Sometimes living minute by minute, hour by hour and day by day, enduring horrific side effects, all in and effort to get well.

The appointment was extremely overwhelming.  Firstly we ran through my test results and my symptoms.  Dr D believes that I have more co-infections (that I was not previously tested for) and wants to test for these.  So this means another set of blood tests off to Sydney and Germany.  He needs to know these results so that he can test me with the appropriate antibiotics.  No use giving me something that won’t be effective.

I immediately had to start a ‘Diet Trial’.  This falls into categories of food that I must eliminate from my diet for 2-3 weeks and then re-introduce recommended foods over the following week/s to challenge and detect any allergic reactions.  I have been mostly gluten and sugar free but the new list is extensive.

  • FRUCTOSE – most fruit, sugar, honey, fruit juices, soft drinks and tomato paste.
  • DAIRY – Cows milk dairy products and Casein protein
  • FRUCTANS – bread, cake, biscuits, pasta etc, rye, onions, artichokes, leeks, capsicum and asparagus
  • LOW STARCH DIET – grains, rice, potatoes (these in minimal doses or avoided), root vegetables and peas (in moderation)

I do have a small list of foods which I am able to eat during this trial, but basically it is salad, protein and stone fruits.  Luckily it is stone fruit season 🙂  It is extremely hard and I cannot thank my hubby enough for taking this on and preparing food that meets these requirements.

I then start taking a med called Plaquenil.  But I have to have an eye test before I can start this med and every 6 months that I am on it.

As written in a previous post, my results for my Bioscreen gut/bowl test were terrible.  So after I have my blood tests next Monday and I have been on Plaquenil for a week,  I am to start on my ‘Bioscreen Prescription’ which consists of many meds including antibiotics and many that I can’t even pronounce.  There are 13 items in total.  I will be introducing them slowly as it is imperative that I know which ones produce a herx reaction, so I can stop them for a couple of days and then reintroduce them.

I then introduce a med called Artesunate once I am settled into the above.

After that, we add in the ‘big guns’ to kill off the Bartonella – a list of very strong anti-biotics.  This treatment will continue for another 3-6 months or so and then we will start treatment for killing of the Borrelia.

Well this is my understanding of it all.  Some of these meds are primarily used for other diseases, but apparently also have their place in treating the many symptoms of LD.  This is where I have to put my faith in Dr D!  After seeing Matt finally starting to get his life back, I am using him for my inspiration.

The WORST thing that I am trying to cope with at the moment (apart from the diet) is the extreme nausea that I am having daily since I changed over one of my antidepressants.  I see my psych today to discuss this, but it is my understanding that this usually lasts for a maximum of three weeks.  I have already lost a couple of kilos in the last 10 days.

The other thing that is really on my mind and making me anxious is the amount of social gatherings that I am unable to attend.  This is embarrassing and I feel so guilty.  But apart from how many physical and mental symptoms I have, I also can’t tolerate noise or crowds.  I am very withdrawn.  I am still hoping for big improvements in my mood level once the new anti-depressant has fully kicked in.

NB: This mostly medical post is for me to be able to look back on and record my progress and I go through treatment.  I have to record med doses, symptoms etc for Dr D and report to him regularly.  I expect there will be many more medical posts as I start out on this leg of my journey.  Terri xx

Right now, I need time for me....

Right now, I need time for me….

 

Life Goes On

 

After my first IV went so well, Dr N decided to double the dose of Vitamin C and KAPOW!   I crashed out majorly.

I think I should explain how this works.  Because I have neuro-borreliosis with the co-infection of Bartonella, the main areas that these bacteria have infected are my brain and nervous system.  They are the cause of my depression, anxiety and MS-like movements.  When we try to start treatment to kill these little buggers off, as they die, they release toxins and make you worse and exaggerate your symptoms for a time.  This is called herxing.  A herx usually affects the area where the bugs are most concentrated, hence my brain which is why my depression and anxiety amplify after these treatments.

As we have been unable to get my mood stabilised all year, I go into these treatments already depressed.  Plunging deeper into depression after the treatments leaves me in the darkest of places where no-one should have to go.  To address this, my medical team have conferred and decided to try adding in a different anti-depressant.  This has helped marginally.  So last week, we all decided that I would try changing the other one (I am on two) to see if this could help.  If I can be more stable before treatment, the reasoning is that I should be able to handle the herxes better after treatment.  I have stopped the IV treatment for now as my last herx was so severe.

The catch 22 is that I have to kill off the bugs to eradicate the depression.  It really is a difficult situation.

I have had a better week and have managed to be out of bed most days. Yesterday I even managed to clean the house.  I think I went a bit overboard and am paying for it today.

I try my hardest to push through and nothing gives me greater joy than for Gary to come home to a tidy, clean house.  I want to be the happy, cheerful wife that he deserves and used to have.

There are so many things that I want.  I would love to be able to drive my car, walk and talk properly, jump out of bed with enthusiasm in the mornings and I would love to return to work.  I want to be able to go visiting, go shopping and be independent.  I want to give Gary back his freedom to live every day without worrying about me.  This is my biggest wish.

I am hoping that 2014 will help me reach these goals.  I know it is going to get worse before it gets better, but I will just have to dig deeper and find the strength to endure and move forward.

So for now, I am trying to reach a better level of mood stability.  I am still almost gluten and sugar free.  I am still detoxing and working towards improving my immune system.  And the exciting news is that I finally have my appointment to see Matt’s lyme Doctor this week.  He is the specialist in this field and I will probably change over to his care if the appointment goes well.

I know a lot of my family and friends don’t understand this illness and that is ok, but please remember I am trying ……

av60

On The Right Track

I can’t believe how fast time is flying by.

I am nearly finished writing out my Christmas cards and have done a little Christmas shopping (online of course).  I haven’t been up to walking around busy shopping centres as yet and it is something I am putting off until I feel a little bit better.

My weeks are mostly filled with medical appointments.  It is consuming and overwhelming.  I couldn’t be happier with the care that I am getting and for the first time in a long time, I believe we are on the right track.   But it is still trial and error working out which protocol is best for me.  This is the frustrating part.  I feel that I have declined a lot over the last few weeks.  But there is hope after receiving results this week which could help me start taking more steps forwards than backwards.

I am so grateful to be Blessed with such a fantastic Naturopath.  She is more like a Doctor and we have complete faith in her.  She ordered saliva testing for my hormones and as usual they are terrible.  I never seem to have any results that are normal!  The worst one of all is my cortisol levels.  A morning result should be between 30-35…… Mine registers (just) at 3.5.  She can’t believe that I am actually able to get up and walk around.  I admit that on most days it is near on impossible and after attempting even the smallest of tasks, I am forced to rest just to recover before trying to tackle something else.  Other days I feel so exhausted I spend most of my time in bed.  I feel so guilty for this and feel that I am losing my dignity.

So, I will be starting on some bio-identical cortisol replacement soon.  I need to have these meds compounded and made specifically for me. (Yet another expense!)  She is hoping that I may start to pick up and have a little bit of the ‘old me’ back before Christmas.  This will be nice.  She is extremely reassuring and unequivocally says that I will get better, but I must be patient and take it step by step.

For now, we are still concentrating on getting my body ready to handle anti-biotics.  It will probably be a few months away yet.  But I have been sick for so long, I can put up with this if I can see small improvements along the way.

I have also started having my IV treatments.  These help in eliminating toxins and boosting my immune system.  I have had to start on a very small dose and will be working upwards as we establish doses that I can tolerate it.  So far, so good.

2nd IV Chelation.  I am so so tired.

2nd IV Chelation. I am so so tired.

A Better Week

 

I must say that I was a bit overwhelmed at the beginning of this week.  Looking at my diary and seeing that I had so many commitments.

But I have coped well and can happily report that I have even had a couple of ‘good’ days in amongst the chaos.

I have been Blessed to have visits from family and friends and we even managed to go out and visit my Aunty who gave me just the dose of medicine the doctor ordered: lots of love, cuddles and encouragement.  It’s amazing how being comforted when you feel so down can lift you up and boost those happy hormones 🙂

I had appointments with both my Lyme Dr and a new Naturopath this week.  They are working together on my case (as it is a little complicated).  This is very reassuring as the lines of communication are open and the treatment for Lyme is a holistic one.  Your body needs to be in optimal condition before starting the heavy duty antibiotics or the ramifications can be horrendous (as I learnt when we tried to hit the bugs hard with full doses of abx and I thought I was going to die).

The Naturopath is amazing.  She is a beautiful soul and extremely knowledgeable.  We are working on a few priorities first.  I have to get my level of thyroid antibodies down, get my gut repaired and gut flora balanced,  open my detox pathways and decrease my inflammation.

It is now official that these little bugs are in my brain and nervous system.  This really scares me as I wonder if they will have any impact on my brain tumor.  I want that little bugger out ASAP, so getting my health back in order is a top priority for me.

I have started on some natural supplements and they taste shocking.  I was very nauseous at first, but that is subsiding, thankfully.  I will only increase from here.  I still have saliva and blood testing to do and depending on the results, I will be adding more sups to my daily list of concoctions.  I have also been told that I will need to IV chelation therapy.  This is rather daunting as it can take hours for the procedure.  Some people react poorly at first, but I am led to believe that once established, the results can be amazing.  I definitely like the word amazing! LOL

I don’t know how we are managing to make ends meet at the moment.  Hubby is taking care of the finances and I must say he is doing a great job.

It seems like the anti-depressant I started on a few weeks ago may be starting to kick in.  I haven’t been nearly as sad, although I still have quite high levels of anxiety.  At least I am not spending my days sobbing and desperate.  Great hey!

Well, I feel like this week we have accomplished so much.  We now have a treatment plan in place and I am coping much better at the moment.  I am trying so hard to focus on the positives and not how crappy I feel.  That can only be a good thing 🙂

av54

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