Why the Lymish delay?

Health a lot better these past couple of days. Fit and able with a shovel and pick. Slipped and fell on a cliff path yesterday afternoon, feared the worst but the neck held up. Felt a bit wobbly for a few hours but no harm done (touch wood). Just one thing annoys me: why have I still not got a date for the biopsy? Regular readers will recall that testing positive for Lyme four times is not enough to prove that I have Lyme. My neurologist, taking advice from Southampton, told me two weeks ago that a biopsy would be arranged while I still had the Lyme (or not Lyme) rash. As it happens, the rash is showing no sign of going anywhere and, if anything, seems to be slightly more livid lately. But why the delay in organising the biopsy? Surely it's in everyone's interests to nail this test as soon as possible?

Comments

[Joanne]

Well you would think so wouldn't you. But the longer you wait the less the chance of a positive and after all that would then support what HPA are saying now.

However were you to produce a positive then that would show that persistent infection can remain despite 'adequate' antibiotics.

In fact I believe your ongoing EM rash already shows persistent infection 7 months, despite 2 months Doxy, but then of course your rash would be dismissed as a shaving rash!!!

You are damned if you do and damned if you don't Alex. Welcome to the mad, bad world of Lyme.

I am pleased to hear your symptoms are better of late perhaps your immune system is coping better at present.

[Lucy]

Welcome to the mad, bad world of the NHS!! Keep hammering on doors, persistence is sometimes effective. He who shouts loudest sometimes gets heard!! Lx

[Ticksick]

Patients with Lyme can find that their symptoms wax and wane in cycles. It is worth keeping a diary of symptoms and also a record of your body temperature on rising, it usually runs low with Lyme.

All of this will be very useful information for a Lyme literate doctor, who I suspect you will end up seeing in the not too distant future when you realise the NHS are failing to treat you properly.I think the penny is starting to drop now based on your recent experiences. I would book your appointment soon as waiting lists can be long.

[neelu]

EM Lyme rashes can often disappear on their own after a few weeks or months. Perhaps the delay is deliberate in the hope that the rash will disappear and you will no longer have the rash which in itself should be diagnostic of the disease. Sounds cynical I know but we're treated in such a way that leaves very little room for optimism.

Neelu