What would you think?
I was diagnosed with M.E. approx. 25 years ago after living with a very long list of strange and chronic debilitating symptoms for a number of years. The last few years I have began to doubt my diagnosis.
Other than experiencing most of a very long list of typical M.E./CFS typical symptoms and Fibromyalgia. I have experienced a wide range of unrelated conditions and symptoms that have baffled specialists especially rare symptoms in my left eye, in-fact threatened eye loss in my twenties.
But as more very strange neurological complications have appeared, the more I have came to question is it Chronic Lymes Disease I have. You see at the age of about 14 I had strange bites in my leg which left my legs and feet so swollen, I couldn’t put my shoes on which now on observation looked very like the bulls-eye rash caused by lymes.
But Lymes Disease isn’t straight forward to diagnose or treat. There is a huge out cry around the world on inadequate lymes and lymes co-infection testing, particularly around UK NHS testing. Most world wide research suggests the NHS testing in the UK is not fit for purpose and one of the most inadequate tests at detecting the actual disease and or it’s co-infections. So much so the masses of potential lymes sufferers in the uk are being tested and treated abroad, for many it’s costing tens of thousands in treatment.
So let’s take a closer look at the differences, although both conditions have a very long list of many of the same symptoms, chronic untreated lymes is said to mimic many illnesses and is known to cause a lot of unexplained neurological and eye complications.
Medical research papers show eye complication include optic atrophy, optic nerve atrophy, a swollen optic disc, detaching retina, light sensitivity, low intro-ocular pressure, chorioretinal folds, abnormal pupil size, dry eye … are all chronic lymes symptoms which I have suffered over the last 20 years that top specialists have never been able to explain the cause of.
Research also demonstrates a very long list of neurological symptoms and chronic lymes complications. Temporary paralysis (something I suffered regularly in the first 10-15 years), paraesthesia plus a wide range of cognitive problems; short term memory issues, poor concentration, poor recall and word retrieval ( I remember at one point being unable to remember my own sisters names, unable to count or able to read a child’s book) as well as sudden spatial awareness challenges, I trained as a pattern maker/dressmaker from the age of 17 years and then suddenly had challenges working out distance and space in my early twenties. But the challenge now is extreme noise sensitivity, a movement disorder; violent jerking, shaking, tics plus balance, co-ordination, and motor skills challenges. I am now mostly housebound, going out is very uncomfortable, exhausting and extremely challenging particularly in a car or around traffic and specific noises.
I have been told there is no treatment and I have to accept that my symptoms may fluctuate but won’t go away. But as a healer and therapist I have a different view.
I have a very long list of not so nice other health challenges that never seem to co-relate and didn’t fit in relation to my age and lifestyle. In-fact according to the Horowitz Lymes- MSIDS Questionnaire if you score over 46 you have a high probability of a tick borne disorder, (lymes or one of its related co-infections). I scored 126.
So after a lot of neurological tests and bit of battle with the NHS here in Scotland, I managed to get a NHS test early this year for lymes, but as suspected and according to statistics my result was negative, but despite having many very obvious symptoms related to possible lymes co-infection, I was not tested for this.
Now after a lot of careful thought I have decided to go for private testing from the most highly recommended lab in Germany. Knowing sadly, that even if it comes back positive, like many people living with chronic lymes, I will not be treated by the NHS here in the uk and that I may not have the resources to receive private treatment. The NHS does not accept test results outside the UK and most sufferers need to go privately and the longer you have the condition, the longer and more intense the treatment, the reason so many have to spend tens of thousands on treatment abroad.
But sadly I have to say a part of me is angry and sad, like so many people diagnosed with M.E., lymes or similar misunderstood conditions, I have spent most of my income trying to heal myself for the last 25 years. I live in the uk, where we are supposed to be all treated equally, to be entitled to free medical treatment, but most of my life I have never fitted into a specific medical category, illness or symptom that was fully supported, treated and most often not recognised, so like so many have been passed on to one specialist to another and told you just have to live with it.
I believe this isn’t good enough, I deserve more, everyone of you, in a similar situation deserves more. Don’t get me wrong, I will be forever grateful how these health experiences helped me find my life’s purpose as a healer, coach and therapist. But I cannot deny it robbed me, of so many areas and huge parts of my life that only my closest friends and family understand and recognise.
A person’s quality of life can be so seriously supported or thwarted by not just the limits of their disease, illness or condition but by the perception, limitations and/or neglect of care, we are given socially and medically. Those living with M.E/CFS, Lymes and other similar neglected conditions deserve so much more care, compassion, medical recognition, medical support and social responsibility. Let’s hope that no matter what, if its Lymes, M.E or whatever …that I and others in similar situations start to get a lot more compassion, care, support, hope and the medical treatment we need and deserve.