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….

 

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3 Comments (+add yours?)

  1. matthewmford
    Mar 20, 2014 @ 17:49:15

    Reblogged this on Matt's Lyme journey.

    Reply

  2. Annelise Procter
    Jun 14, 2014 @ 10:57:58

    Who is the LLD in Perth your being treated by? I’m 21 and being told I might have MS but I’ve been unwell since I attended a school trip in the USA in 09, just want all options explored before I start down the MS path, any help would be majorly appreciated

    Reply

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