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.