Information/Symptom List

Straight Forward Symptom List

Some Australian Statistics ~ Small Man and I are going to stuff up theirs stats!!

If you think you could be affected by Lyme or it's co-infections and your GP won't test you for it....

Get a new GP.

It's your life.

In early May I would never have even considered Lyme disease ~ we would NEVER have improved without this treatment.

G
x♥x

And On The 5th Day....

I'm travelling pretty well :)

I have had episodes of 'weird stuff' come over me and then go again

I have had this weird stuff before, so there is nothing new, just haven't had it all in one or two days like this

Nausea after I eat

Big time pins and needles in my head

Crawly feelings (kids used to say I was on crack when I used to get this!) - like something is crawling on your face/head but there's nothing there

The cicadas in my head got pretty loud

Air hunger last night

Random coldness

Word block is insane

Some shortness of breath

Feeling like my knees and elbows are swelling up, but they look ok

Feeling emotional ~ a bit teary

I even went to bed early

And woke up early!!!

Small Man on the other hand

Has had an insane headache

Waves of tiredness

Feeling like he is drugged out

Sleeping a lot more

I find it interesting how we have the same thing,

Yet we are so different symptomatically

Crazy disease

The chemist, and organising medication was ridiculously stressful
We ended up starting Doxycycline on the same day
The next round of stuff we need to add I have had to order from the mainland
May as well be living on the moon sometimes

Feeling grateful for friends that care
That keep asking how we are going
That are happy for us 
And supportive

My man has vacuumed this week, unpacked dishwashers, got groceries, offered to put washing away (I had to decline on this, god love him for offering but I may need to find these things again at some stage :P )♥

Mum has been up and folded a heap of washing for me ♥

I had offers of help to pack the order ♥

I find it hard to accept help
Being married to a shift worker
The rare event that anyone looked after my kids
Have all made me very independant
That's not to say that I run a spotless household and everything gets done
Of course it doesn't
I haven't exactly been well for 13 years
But I find it hard to let anyone help me with many things
I also need to do what I can when I can
In case there is a day when I can't
And I do need help

I have cooked sooo much food this week
Cos just in case... 

G
x♥x

That time when....

Long story short

Our appointment went very well

I have Lyme disease

 There, I said it....

I have Lyme, Bartonella, Rickettsia, and possibly/probably Babesia

I need testing for insulin resistance, thyroid function, hormone levels...to name a few.

Small Man has Bartonella, Rickettsia possibly Babesia and possibly/probably Lyme.
He needs cardiological investigation to rule out any damage to his heart from Bartonella.
We are hoping to get further 'evidence' of Bartonella before he sees the cardiologist here, in case he is sceptical or doesn't handle it 'well'.
Last thing we need is another one of 'those' appointments.

I will need the same, but one thing at a time, but probably before the end of this year.

We both had a mountain of blood tests done yesterday, at two different laboratories

Definite diagnosis for a few of the co-infections depend on the test results



For now we are both being treated

As soon as I can collect the scripts

He has started me on tablet form YAY!! 



Yesterdays tests cost $1900

I hadn't quite prepared for that

All necessary though

We had extra blood taken

To be stored for up to 3 months

For testing in the USA

That will be another $1000

Consultation fee could be $1000 - $1400

BUT

Small Man could be much better within a few months!!!

It may take a few years for me to fully recover

But it's there

That light

At the end of this shit

So much to take in

My head was going to explode

I was lucky

I had the experience of TWO very good doctors for my consultation

I had them pretty excited a few times

With my bizarre repertoire of symptoms

 Positive Babinski sign

Stupid curved fingernails

Rickettsia rash (YAY!! now I know what it is!!!)

Bartonella rash on my hip

And Small Man's whole back!!

We are far from there

Treatment can get rough

But we will mange

We always do :)

G
x♥x

Slightly Nervous

An extract from the web page of the doctor we are seeing soon:

Treatment Options

When considering antibiotic treatment, do we use Oral, IM or IV? There are many choices to be made and combination therapy is needed. There is no single wonder drug, and treatments need to be cycled every 6-12 weeks depending on response.

If a patient has had long standing symptoms and is debilitated orals will not work so well and possibly not at all. The same applies to any patient over 60 and also those who have ever had cortisone by oral or parenteral routes since the onset of Lyme disease. Indeed some proponents advocate this latter group must have parenteral antibiotics.

*Parenteral

Not in or through the digestive system. Parenteral nutrition is given through the veins of the circulatory system, rather than through the digestive system.

I was given prednisolone - heaps of it.

For around 12 - 18 months until I realised it wasn't helping me and stopped taking it.

Thank GOD I refused steroids for Small Man.

G

x♥x

p.s. Ear is still ringing :/