"Lyme Disease"

I am Male aged 59 and had served in Army for a period of 33 years.

On discharge from the Army in 2007, I moved to Newton Mearns in East Renfrewshire on the southside of Glasgow. Health and fitness at this period was A1.

In 2013 I started having health issues (flu like symptoms, headaches, rib pains, lung pain, tiredness, swollen glands, stomach/groin pain, throat issues and lethargy etc).

Attended doctors in Newton Mearns and was diagnosed with flu. After few weeks condition had not improved and attended doctor again. This time diagnosed with Lupus and prescribed medication which in effect made me worse. Attempted to work through pain and condition, however, had to return to doctor after a few months. This time seen a Locom (by this time I was reading up on my symptoms and attempting to identify likely causes/diagnosis) who explained that it was more than likely I had Fibromyalgia and prescribed medication again. At this visit I asked the Locom if this could possibly be related to Lyme disease ( also mentioned thyroid) as having read into the subject in great detail it seemed to tick a lot of the Lyme symptoms for late stage Lyme. His knowledge of Lyme/Ticks was non-existent and explained if you were in USA then possible. 

After few more months (no improvement and more symptoms adding to others) had to return again. Also at this stage I had thrown all prescribed medication in the bin as it had no impact on my condition (statins etc). At this stage things began to ramp up (managed to get colonoscopy (clear),  and prostate checked (enlarged and told "watch & wait") and GP sent blood sample away to test for Lyme (this was negative). Still my condition had no improvement so decided to go for private testing. Over the next few years attended private hospitals getting probes up and down not to mention many many blood tests in an attempt to understand why my body was slowly falling apart. Still limited information but the only diagnosis was cholesterol slightly high. My GPs by this time were really tired of me, I could sense it and tell by their attitude. It became even worse when I handed over copies of blood tests from private clinics.

In 2015 we relocated to a new house in North Lanarkshire. Registered with new Practice and was praying/hoping that new GP may identify my illness. In all honesty after a short period of appointments and blood tests (thyroid and Lyme tests yet again but all negative) nothing to worry about! Gradually getting worse but still no answers, but plenty pills if that was your poison. Having read forums on subjects of Lyme disease, ticks and thyroid disease I was more than convinced I was on the right track. It felt like everyone I came into contact with in the NHS assumed that I suffer from anxiety? Doctors, nurses etal asked that over and over again. 

By this stage I had lost all confidence in the NHS, the only person capable of identifying my condition was me. My health my life so I will now take the lead, to hell with them. Trying to get appointments when ill drove me to despair (im bloody anxious now!) just trying to get through on the phone and then told 2 weeks. Is this what I get after paying National Insurance for 40+ years. No wonder people opt for private clinics/hospitals.

December 2015 took very ill and had to attend A+E in Monklands Hospital (due to severe chest and lung pain with shortness of breath). Blood taken waited for 6 hrs and then turfed out, blood test is clear. So what are the pains I have? I mentioned could this possibly be late stage Lyme (Lyme Carditis)? No-one I spoke to there seems interested never really understood the question and not even a pill.

Now fully convinced I was dealing with late stage Lyme (many hundreds of websites clearly explaining Lyme symptoms and UK Forums with thousands of people being mistreated/misdiagnosed by NHS not to mention the CDC in USA) I decided to concentrate my efforts/money to Lyme Disease & co-infections. Over past 2 yrs have attended following:

Private Hospital Edinburgh - day patient - Health check £2000 Checking for cancer

Private clinic Edinburgh - day patient - scans £600 - Checking for cancer

Private Hospital Mumbai India - 3 days in-patient and they identified positive inducible ischemia and seriously low Vitamin D (best service ever and found issues not identified by NHS) Note: 7 days in India, flights, hotel, food and hospital costs was cheaper than 1 day Edinburgh clinic £1900 

Private  blood testing at two different places - identified Thyroid TSH 7 and Thyroglobulin Antibodies 2500 - Total £500

NHS GP blood tests - still nothing identified (I was told TSH under 10 so you must be fine).

Monklands A&E visit again - same symptoms as before - same result (turfed out)

Attended GP again and handed copies of results from India (about 20 pages of all tests and results). Requested he check out the heart issues and that another blood test for Lyme be sent to Raigmore Hosp in Inverness (has a specialist Lyme department that check blood samples from Scotland). Blood test came back negative (no surprises as approx. 80% of all blood test for Lyme return negative). Doctor arranged for stress test at Monklands Hospital to check heart (whilst there they thought it was possibly Angina, however, that changed after I handed them a copy of my graph paper and report from India explaining it was inducible ischemia. The stress test on my heart failed to identify anything wrong (by this stage I was 100% convinced this was chronic Lyme Disease which we were dealing with). However, not a single doctor, consultant or nurse would discuss Lyme disease or any co-infections. On the strength of the India Hospital report the Consultant decided to refer me to Hairmyres Hospital for an angiogram. 

In the meantime, I sent my blood to a Clinic in Germany to test for Lyme Disease. As I expected, the test was positive for Lyme and co-infections. 

Attended Hairmyres Hosp for the Angiogram that was clear, nothing identified. Prior to going into theatre I asked the doctor if this is showing classic Lyme Carditis symptoms - just blanked me. Back to the drawing board then.

By this stage (approx. 4 yrs) still have not received a diagnosis. This so far must be costing NHS a fortune. I know at this stage this has cost me about £30k (medical and business losses) not to mention my sanity and no quality of life, and the saga continued. 

Submitted private thyroid blood test panel results to my GP (got wiser to the fact that the NHS thyroid test is very basic), TSH now 13 and Thyroid Globulin Antibodies at 2650 with the report saying classic underactive thyroid and also Hashimottos disease. GP now had no option but to prescribe Thyroxine medication. Unknown to me I thought the NHS was doing a thorough and full panel test on my Thyroid, but it appears that this was not the case. So for the past 18 months I was told by GP, "thyroid results fine within range" absolute garbage. The website Thyroid UK provided me with the information/ammunition to challenge my GP.

Still no formal diagnosis by NHS I decided to attend another private clinic in Liverpool to undertake a Health Check. Full body MRI scans and another two days lost from work. Results were fine as was the clinic and staff. But another £1700 cost to me. Discussed the results with my GP and submitted copies of the reports for my files (note; all private test have been copied to GP for my file).

I was now determined that this was Lyme and all NHS blood tests I had undertaken for Lyme were indeed flawed. GP reluctantly arranged for me to see the infectious disease department at the Monklands Hospital (taken over 3 yrs to get here). Whilst attending GP clinic I submitted to him a copy of the NICE guidelines (revised 2018) pertaining to Lyme Disease. From his attitude he did not take too kindly to a patient updating him on Thyroid policy. A month later attended infectious disease department at Monklands Hospital, they took notes and blood which was sent to Raigmore Hospital in Inverness (managed to work out they did not have all my records available on computer whilst trying to diagnose me, so how that works I will never know) Lyme department. Attended two weeks later to get results which were negative for Lyme. From what I have read (scientific fact as can be seen on many German and American websites) the NHS tests for Lyme are unfit for purpose.

Reported to GP 3 weeks later to discuss blood results which in effect was their cue to dismiss Lyme in all its forms. No more action and no more discussions, end-off. At this stage I informed the GP as to why they were failing to follow the NICE guidelines protocol pertaining to Tick bites and Lyme as per the latest issue dated April 2018. They state quite clearly that a negative blood test or indeed the lack of a tick/tick bite (erythema migrans rash) does not mean that a patient will be discounted from treatment. The guidelines clearly state that a clinical judgement is as important when the patient symptoms are taken into account. Additionally, it is vital to get the patient history/details ie; employment, countries visited, sport, hobbies etc. Having explained that I have spent over 33 yrs in Army and been in many of the countries where ticks and Lyme is endemic seem to fall on deaf ears. Countries like; USA (endemic), Canada, Central America, Africa, Spain, Portugal, Greece, Turkey, Poland, Germany, Norway (yes endemic too), Sweden, and Australia with plenty more) so why no treatment or confirmation of Lyme? Pathetic.

In the meantime my condition worsens, neuro Lyme very much in evidence and have just returned from Cyprus having undergone Hyperbaric Oxygen Treatment and Ozone with additional medications - not to worry NHS only cost me £10,000. Oh by the way, also had to give my business up in April 2018. As at today the NHS failures in many levels have cost my family about £60,000 (private medication and business loss). Will now be a burden on the state as condition worsens. Expect this will manifest itself as MS, Dementia or Parkinsons like many others who have been misdiagnosed.

Still waiting to discuss the next stage with MPs. Onwards and upwards. Also just changed GPs to see if I can find one who is Lyme literate.