mine is a very long story - too long t go into here
but in essence, both my partner and i became ill with the same symptoms at the same time while on holiday in the lake district - we had been hiking.
we trusted that the doctors would find out what it was and treat us - how wrong we were!!
despite the symptoms being very typical of Lyme - neither of us had a bulls-eye rash.
we were basically sent away multiple times with various non-diagnosis of
-allergic reaction ( both of us???!!)
-Hysteria
-psychosematic illness
-CFS
-Fibromyalgia
-post viral Fatigue
we heard all the usual quotes we have since heard many others have been told
"there is no Lyme around here" ( despite the disease being present in migrating garden birds in the UK )
"you don't have a rash so it can't be Lyme "
"you would have this symptom of that symptom"
"The C6 ELISA is negative so you cant have Lyme" (despite 20% of infected people never making any detectable antibodies)
all the old favourites !!
the reality is GP's and even infectious disease experts are hopelessly undereducated about
tick bourne illbess and whayt education they do have is usually hopelessly wrong and out of date you could learn more in a day with google than the vast majority know - but they cannot tell you this.
the royal college of GP's have created a short course ( an hour or so long) on Lyme disease n collaboration with Lyme disease UK or one of those charities
only a tiny percentage of GP's have taken it
i kept pushing for tests and diagnosis and jumping through hoops to try to get treatment.
i would have to put everything in writing and press for appointment after appointment to avoid being fobbed off
i had to change GP surgeries due to the poor treatment and blatant unprofessional behavior
we were referred to the London infectious diseases center in city hospital London
they ran a few basic tests ( TB, Blood counts etc ) and said it couldn't be Lyme as it does not present as a chronic illness - and we would be much sicker ( when actual studies show 50% of chronic Lyme patients are still working in some type of employment ( neither of us could )
i eventually got referred to an infectious disease "expert" in Nottingham who i had researched and identified as one of the best in the NHS - after 4 months of waiting to see him, he proceeded to tell my partner he thought she had a psychiatric condition and didn't even want to do any blood tests ( in reality she was understandably stressed and anxious about
her collapsing health and needed help getting to the bottom of it).
it has been an unmitigated disaster from start to finish.
my partner refuses to go to see them any more - she finds it so insulting there will be 1000's of people like us in the uk with a diagnosis of CFS. Fibromyalgia etc
I have been to groups and met them!
if you got a diagnosis via the NHS at all - you are one of the very lucky ones.
Post Edited (Garzie) : 10/27/2020 3:16:16 PM (GMT-6)