"Lyme Disease & coinfections"

About: General practices in Fife Queen Margaret Hospital / Pain management Victoria Hospital / Audiology Victoria Hospital / Dermatology Victoria Hospital / Ear, Nose & Throat Victoria Hospital / Ophthalmology Victoria Hospital / Physiotherapy

(as the patient),

I was in full time employment having worked for years, walked my dog 6 miles per day, helped care for my grandchildren and led an active and busy social life. 

In Feb 2016 i came down with “the worst flu ever”. 2 weeks later i noticed a large ringed rash which turned into an eschar requiring dressings from the practise nurse for weeks, it felt like acid was being poured inside. A week later another rash appeared, i thought this was due to heat patches i was using for my back pain. 

As the weeks wore on i developed agonising spine pain and arthritis in every joint. I slept on the living room floor, crawling to the toilet with constant vomiting, often passing out. I found it very hard to breathe, developed dizziness, gastritis, bladder incontinence, bowel paralysis and severe eye pain and migraines that lasted for up to 5 days. I had liver, spleen and gallbladder pain and extremely sore feet, especially the soles. I had 2 tennis elbows simaltaneously with carpal tunnel. I wore neck, back, elbow, wrist, knee, ankle and neck braces to try to alleviate the pain. 
The pores of my skin felt as if they were being electrocuted and had crawling and itchy sensations over my whole body. I once took a sharp knife to relieve the itching on the soles of my feet. 
My skin lost its elasticity and developed strange rashes all over and ulcers and lesions that wouldnt heal. 
My brain felt as if it was on fire and developed severe neurological issues. My throat, nose, cheeks and tongue became numb and odd patches throughout my body. My body would jerk and twitch and developed chronic insomnia. I became word and number dyslexic and became lost in my own home, unable to remember how to switch a kettle on, switch lights on and couldnt finish a sentence. I couldnt remember what age i was and began phoning my husband at his work as i wanted to die to take me out of the hellish pain. 
I had drenching night sweats but freezing through the day, even in summer i was wrapped up in thick pyjamas and sox inder the duvet with electric blanket on shivering all day. 
My vision become blurry then had double vision forcing me to wear an eye patch. I felt like scooping my eye out with a teaspoon to rid me of the pain.
I was so fatigued i could barely brush my teeth and required assistance in all areas of personal care. 
During this time i was at the GP nearly weekly with new ailments. I was initially diagnosed by rheumatology with osteoarthritis and somatoform disorder. I was insulted to have somatoform on my record, my GP then kindly wrote to rheumatology who then wrote fybromyalgia. 

I had many tests and was referred to many consultants, ENT, physio, orthordics, gastroentologists, neurologist, dermatology, pain management, cbt therapy. 

Nobody could find out the cause of my illnesses. I never managed to return to work and was medically retired a year later aged 51.

As my illness progressed, i began researching and eventually connected the dots to my rashes and health problems... Lyme Disease. I tested negative on NHS, but I believe this can happen as the NICE guidelines admit testing is unreliable. As i had many steroid and antibiotic treatments, my body wasnt producing antibody response. I tested privately and i was negative again for Lyme but positive for some other things. 

I decided to treat privately with a Head of Infectious Disease and Microbiology Specialist who clinically diagnosed me with Lyme and Babesia on top of other infections and viruses. 

I had multiple antibiotics and antiparasitics, the treatment was brutal and i had to stop twice due to overload of dying toxins. It took a year to get to 70% of my formal self. I am still in treatment. I dont know if i will ever reach remission but i am thankful i am not in that hell where my myself, family  and friends thought i was dying(and wished it on many occasions).

Frontline staff(including nursing practioners, chemists, GP’, A&E staff) need to be aware of the long term consequenses of untreated Lyme & co-infections. If caught early, these infections can be treated without developing into chronic illnesses. Some people dont have the classic bullseye rash which makes it even more difficult to diagnose. 

I hope telling my story will allow others to prevent the nightmare i have gone through and those involved will take the Lyme RGCP course.  I think this should include all consultants.  I understand that some specialists seem to deny Chronic Lyme even exists.

Lyme is very common, underdiagnosed and very hard to treat if not caught early.

Responses

Response from NHS Fife

Dear Lymewarrior

Thank you for sharing your experience on patient opinion. I was sorry to read that you have had such a difficult time but am glad to hear that you are now on the road to recovery.

The Chief Medical Officer for Scotland has recently written to all doctors highlighting the identification and management of Lyme disease. This communication includes links to specific educational resources as well as reminders to clinicians not only of their role in the early diagnosis and management of Lyme disease but also around promoting tick awareness. These resources are publicly available on the NHS Education for Scotland website.

Within NHS fife we are expanding our Infection service to ensure that our patients, when needed, are able to access a specialist Infectious Diseases opinion.

Kind Regards

Chris McKenna

Medical Director

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