Life keeps getting in the way.
It's been hectic.
Some days I'm really struggling to keep up.
I joined a support group on Facebook for parents of children like Small Man.
Parents from all over the world in a similar situation, children and young adults in varying degrees of ill health.
Recently there has been a lot of discussion regarding Lyme disease, which I kind of half read with the concentration of an exhausted, worn down person who has been fighting for a very long time....(fighting?? schools, doctors, family, 'friends', illness.....)
That was until a few posted photos of their kids rashes
Rashes that look exactly like the one Small Man has on his back
This is his lower back, in the middle.
I assumed these were some sort of stretch marks.
I posted the photo on the group page and it prompted a flurry of activity, friend adds and messages and research - and then the photo was emailed to one of the few specialists in Australia.
The response has been that it looks very much like Bartonella streak rash.
Bartonella is a co-infection of Lyme disease.
Lyme disease causes Chronic Fatigue.
My brain went into overload for at least a week.
To cut a long story short we each have symptoms specific to Lyme.
LICHEN SCLEROSIS - is considered to be a co-infection of Lyme disease - yes really.
This one was a bit too specific for me to ignore this.
We are seeing our GP tomorrow.
Hopefully he is open to this.
If not I will need to navigate our path to the mainland.
Blood tests here (in Australia) are considered unreliable.
If we have to send tests to USA it will cost....
$1500 EACH for full testing.
If they will treat without testing that would be totally fine with me, I'm not looking for validation any more.
I want my baby well.
I want ME well.....
I am trying so hard not to get my hopes up :/
Will keep you in the loop.....
***Just to add***
http://www.skinsensibility.com/treating-lichen-sclerosus-with-antibiotics/
Just one site of interest....
Today went very well, will update tomorrow some time ~ pretty tired now xx
2 comments:
I have had Lichens for around 20 years now. It usually attacks the genitalia but I have read of it presenting elsewhere. Biopsy is the only way to confirm it and it is treatable. Lichens is also hereditary. It will be interesting to hear what the doctor says. Lisa xx
Hi Lisa,
Yes, I know you have it too. You are the only other person I know that has it, which makes sense as it only affects something like 1% of the population.
I have had it for about 7 years, maybe longer?
Some medical people are now saying it's a co-infection of Lyme disease and can be treated with antibiotics...I have read of people being treated with antibiotics and being cured....
I thought it may interest you :) xx
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