"Experiences have impacted my trust"

I am someone who had the classic "bullseye rash" over 30 years ago as a teenager and who developed a very complex medical history from my late teens.  And have tested positive as having late-stage lyme co-infections by two private clinics. I am very disappointed by the experiences I have suffered at the hands of the NHS - particularly over the last few years.

It's not just NHS testing, which I realize is not straight forward. But the way Dr's and specialist handled the request and the process. As someone with a very long history of a lot of unexplained medical conditions including complications with threatened eye loss several years ago, neurological problems and much more. I was originally diagnosed with M.E. Fibromyalgia - with a whole host of symptoms regarded as unexplained.

After seeing pictures of the bulls-eye rash a few years ago and taking the Horowitz Lyme-MSIDS Questionnaire I was shocked to see so many of the very very long medical symptoms I had over 30 years, that were never explained.  I scored very high, suffering from more than 95% of the symptoms listed.  

Now as someone who spent a lot of time in the countryside as a teenager due to living location and volunteer as a young cub scout leader. Finally, after a lot of requests and refusals, I finally got a Lyme test through Monklands infectious disease unit. But was refused the co-infection testing despite I feel having most of the symptoms. Other than the process to get this test being very long, it didn't appear to include at any point along this way someone who actually specialised in Lyme Disease.

My NHS Lyme test showed negative but the two tests I had at private clinics, showed otherwise. Showing that I did indeed have Lyme and co-infections (which the NHS refused to test me for). I do realise that many private labs may not have total accuracy but it is also supposed to be in Lyme specialists view that symptoms should be taken into consideration even if the test shows negative. Especially as I demonstrated many of the symptoms associated with key features of late-stage Lyme. But at no point of my journey has an NHS Dr or specialist consulted with a Lyme specialist about my history.

Although I believe there are issues in NHS around Lyme testing, the way I was treated all through this process start to finish was very poor. My request for this test did not at any point appear supported.  I asked if the testing ever changed would I be allowed to be re-tested and was told a flat NO. 

In this situation and in visits to other specialist related to my complex neuro symptoms I was flatly told nothing could be done and was told I just had to accept my symptoms, with no explanation.  Part of this problem included for the last several years extreme pain and noise sensitivity in my right ear which literally knocks me off balance and leaves me with very little control over my body movements. I was continually refused a request for my hearing to be tested and told there was nothing wrong. Until several months ago I found out I could get a private hearing test at home, which demonstrated very extreme levels of hyperacusis and hearing loss in one ear. Only because of the recommendation by these audiologists I am finally getting further tests.

On too many occasions through different testing and visits to different specialists, I feel I have had too many medical professionals make too many assumptions around my symptoms. I feel that on more than one occasion, a staff member has made discriminating assumptions that I obviously suffer from an anxiety disorder and need CBT, meditation or anxiety management when they see the violent muscle tremors. Most have been very surprised when I explain teaching these things was my main occupation for 20 years. And something I practice daily. 

As a patient, I feel that I have suffered not only a lot of discrimination due to a range of misunderstood illnesses and diagnoses, but one of the key problems I see in these sorts of cases is that most Dr's or clinic don't seem to want to, or have the resources to, look at the wider picture. Most specialists I have ever seen have only shown interest in the area they specialise in and only the sort of symptoms that are related to their area. From copies of my medical letters, too many seem not to read notes or listen to what I have said properly, or to look at previous diagnoses properly. When in fact in my notes there is a lot of already clearly presenting evidence.

I believe that too many patients like myself get passed to pillar and post and it appears very very few Dr's actually have the resources or position to look and help patients with the bigger picture. Especially in long term complex cases like M.E. and Lyme and other mystery illnesses. In my experience, if you don't fit into a box they often seem to put a psychological label on you. No one seems interested in putting the jigsaw of symptoms together.

To be honest these sort of experiences have seriously impacted my trust in the NHS and in the medical profession. I've spent a substantial amount and most of my life going doing other private and holistic routes because of the way the NHS seems to treat certain types of conditions.