"Left in limbo with Chronic Lyme"

I feel NHS treatment of chronic Lyme Disease is desperately out of date.

With Highland tick populations ever increasing and typical bullseye missing in 30% of cases this is a huge concern.

I went 5 years undiagnosed despite presenting with a faded bullseye and photo to my nurse and checked by my GP, I was told was no concern and without my own research I still wouldn't know.

Symptoms over a few years that if viewed as a whole could have been a red flag for a Lyme Disease test (although every Lyme case is different due to multiple strains):

Carpal tunnel type nerve problems Suspected Chronic Regional Pain Syndrome (CRPS) after steroid injection (contraindicated with Lyme) Multiple sinus infections Chronic inflammation and fatigue Untreatable mental health issues, anxiety, depression, worsening ADHD, Autism, rage. Ear cysts and skin issues. Bursitis/ knee pain Joint and nerve pain Low ferritin Significant sick note time for multiple, migratory pain and mental health conditions. Deteriorating cognitive capacity and memory issues. Dramatic mobility and health improvements after strong/dental antibiotics- CRPS for a year then crutches not needed.

I have seen so many doctors, nurses and specialists, some repeatedly in the 5 undiagnosed years, invariably ending up in mental health services as my physical symptoms were largely unexplained.

I was lucky? To test positive for Lyme given the statistics for false negatives and the testing also needs to be reviewed.

Patients with positive serology and after treatment (acute not chronic treatment) with chronic, neurological symptoms should not have to agree to an invasive and dangerous lumbar puncture procedure with around 13% testing accuracy to get further and better antibiotic treatment for a neuro degenerative condition with high suicide rates.

These patients, like myself are vulnerable to making terrible decisions with taking their care into their own hands.

I am told the lumbar puncture typically only detects the most severe cases anyway, leaving the rest of us who still have some brain function and mobility in limbo.

Diagnosing and treating this condition early could have saved my local NHS hundreds of valuable appointments in the last 7 years. More detailed testing could have helped target any coinfections which are rife in tick bites and also present with severe symptoms.

Now I am left with no NHS Lyme treatment after refusing a lumbar puncture due to its inefficacy and Cerebrospinal Fluid (CSF) Leak risk with Hypermobile Ehlers-Danlos syndrome (hEDS).

I live with debilitating; life changing symptoms and Infectious Diseases have said there's no more they can do.

All the NHS doctors I have seen seem to have their hands tied with these terrible out of date and irrelevant guidelines.

I feel it's time to look at new research which has increased since long covid and update the NICE guidelines which do not acknowledge chronic Lyme or the effect a combination of conditions can have such as long covid and ensure patients aren't left in limbo.

These doctor's and specialists are doing what they can with chronically unwell patients but a new approach is needed with Lyme kept firmly in mind, particularly by GPs and the mental health team who seem to end up dealing with it all.

I have wanted to write to every specialist I saw while undiagnosed to consider Lyme so I appreciate this opportunity.

Please see work by the Lyme Resource Centre.