My Summary

This disease is very evil and attacks all your organs (I would have probably had a heart attack and died had I not got immediate treatment in hospital by my GP, and the doctors advised that they would not have been able to be revive me as blood had thickened with too many bad toxins, due to complete Kidney shutdown) and also muscles cramping at night meaning I had to walk around the hospital for 5 hours with severe sleep deprivation and breathlessness making me feel you like it will either kill me or I will want to kill myself just to stop the torture it does as it sweeps through your body all day and night.

I suspect that I got the disease from either rolling in the contaminated canal from either rats or cattle urine, however it is more likely that a rat had urinated recently on the low water level bank that I used to get out of my kayak, and then I had touched my face/mouth whilst getting changed before going to the pub and not thoroughly washing my hands before drinking a pint of beer and eating peanuts and crisps with my hands again.

Kayaking Diary for period prior to infection:

29th May 2013 – Grand Union Canal, Nr Tring -
2nd June 2013 – River Thames, Oxford -
5th June 2013 – Grand Union Canal, Nr Tring -
7th June 2013 – Grand Union Canal, Hemel Hempstead -
9th June 2013 – Lee Valley White Water Centre (Legacy) -

Symptoms, Diagnosis & Treatment Diary:

12th June 2013 – Occasional coughing

13th June 2013 – Full on Man Flu, rested in bed.

15th June 2013 – Flu Symptons went, now vomiting, hot sweats and cold shivering with raging headache, dizzy, a further 2 days in bed sleeping.

17th June 2013 – Got up, children to school and nursery, drove to work still feeling dizzy with sore throat and very hungry. Ate some food on journey home and was violently sick at midnight and unable to pass any urine.

18th June 2013 – Phoned doctors and got an emergency appointment for midday. By this time I hardly felt well enough to walk and my throat glands had swollen up, but wanted to just make sure I was just suffering from a bad dose of man-flu. My doctor check my vital signs, I had a dangerously low blood pressure and she felt my stomach stating it was very hard and it hurt when she pressed it, she immediately called the Surgical Assessment Team (SAT) at Stoke Manderville Hospital (SMH) and sent me to attend the Accident & Emergency department armed with a letter from her stating that they were expecting me as an emergency case. I still had no idea what might be wrong with me.
The Doctors at SMH SAT took my blood which at this stage was black and dried to the side of the sample tube as it was being taken from me. They asked me for a urine sample but I was only able to provide a very small thimble full sample after drinking a litre of water. The Doctors re-examined my belly, by which time had relaxed a little but was still tender at the front at which point the Doctor was going to allow me to go home as no obvious signs of surgical treatment being needed and I was told to wait again in the waiting area. 10 minutes later I was told that the blood results had returned and that I needed to have a catheter fitted (which caused me to bleed and doctors took over from the 2 nurses to complete the process) and fluids in my blood by IV. I was asked about my work and lifestyle and I explained that my work was office computer based but my hobby is canoeing and that I may have Weils Disease which the Doctors originally dismissed as being unlikely but offered no other possible cause for my illness other than bacteria of some sort. Later that evening I was given IV Fluids all night and one bag of Tazocin by IV.

19th June 2013 – I was given IV Fluids and Tazocin again in the morning and sent to Ultrasound for a scan which found no problems with my organs. Mid morning my doctor arrived to advise that my Kidneys had failed and were now working at <10%, as no surgical treatment was deemed necessary I was moved to a ward to continue recovery, I was given fluids all day/night but no longer any Tazocin.

20th June 2013 - I was given fluids all day/night but no longer any Tazocin and provided a 24 hour urine sample after my catheter was removed. That afternoon, 2 patients were discharged from the bay of the ward that I was staying in and 3 new patients arrived, one gentleman was 90 years old with respiratory problems and given days left to live, another had serious mental health problems and tried to strangle the 90 year old patient at around 4am in the morning whilst I was still awake in pain and the third was an elderly prisoner handcuffed to his bed. It was during the early hours that I decided I may not be in the best possible place and I had been forgotten with no further medication being given to me and no further tests being undertaken, even my 24 hour urine sample had been left uncollected for 12 hours after I had finished the period. I could not sleep due to pain and muscle cramps so spent the rest of the night/morning walking up and down the ward corridor observing that the average age in the ward was 85 years old and I was the only patients not to be wearing a adult nappy.

21st June 2013 – At 7am I got myself showered, shaved and dressed, packed my belongings and told the nurses that I wanted to request a discharge as I did not feel safe in my bed (other patients were an obvious danger and not helping my stress levels to cope with my own illness) and that I had felt neglected as I had no further medicine or tests undertaken. I was told to wait for the doctors to find a solution, a new ward bed, better treatment, but after 6 hours they said that they were unable to provide any other solution but that I would be leaving hospital against medical advice and that I had a 50% chance that I may die. I arrived back home just after 3pm by taxi and rested in bed, later that night the muscle cramps woke me up and the pain was unbearable.

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SMH – Discharge Summary
Diagnosis – Acute Kidney Injury
CRP & Renal function improving = IV Fluids and Tazocin
CRP = 138 Urea 20.2 (31.4 on admission)
Creat 286 (744 on admission)
Medication on Discharge = NONE

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22nd June 2013 – At 5:30am I called my parents and spoke to my Dad in Kent and asked him to drive over 100 miles to collect me and take me to a Hospital in Kent for better treatment. I first arrived at Maidstone Hospital and provided urine and blood samples, the doctor then advised that my blood was fine so I was safe to go back home. Shortly after a arriving at my parents and having a 30 minute sleep I was suddenly woken up by a Wave of heat sweeping down my body making me sweat, hyper ventilate, scratch my skin uncontrollably, and red strawberry blotches appeared on my belly. My mum called 101 and the NHS spent 20 minutes on the phone which was also the same length of time that the attack took on my body. My mum was then told to go to William Harvey Hospital (WHH) and had an appointment time for me to see the doctor at 7pm. I was immediately admitted to the A&E Clinical Decisions Unit and urine, blood samples were taken along with vital signs etc. Then I was placed on IV Fluids and injected with Tazocin along with anti-blood clotting injections. Around midnight the doctor agreed to investigate the possibility that I may have Leptospirosis and authorised samples to be sent to a specialist blood laboratory in London (Tropical Diseases?), in the meantime I had another Ultrasound Scan (no problems other than lots of gas in my belly showing no signs of damaged organs but blood results showed than my Liver had been affected as well as my Kidneys which were still only functioning at <10%. Again that night I could not sleep due to strong muscle cramps across my whole body and the pain killers had no effect.

23rd June 2013 - I was placed on IV Fluids and injected with Tazocin (3 times a day) along with anti-blood clotting injections; I had a CT Scan and Chest X-Ray all showing no signs of damaged organs. Again that night I could not sleep due to strong muscle cramps across my whole body meaning I was pacing around the ward corridor for 5 hours without a break or sleep and the pain killers had no effect, this time I was given Oramorph with two other pain killers (tablet form) which helped stop the pain but only for 45 minutes. The muscle cramp pain seemed to always start at 11:45pm and stop at 7:30 am without explanation from any doctor; I grabbed my sleep when I could during the day cat napping.

24th June 2013 - I was placed on IV Fluids and injected with Tazocin (3 times a day) along with anti-blood clotting injections. Again that night I could not sleep due to strong muscle cramps across my whole body meaning I was pacing around the ward corridor for 5 hours without a break or sleep and the pain killers had no effect, this time I was given Oramorph with two other pain killers (tablet form) which helped stop the pain but only for 45 minutes. The muscle cramp pain seemed to always start at 11:45pm and stop at 7:30 am without explanation from any doctor; I grabbed my sleep when I could during the day cat napping.

25th June 2013 - I was starting to feel better and was still on IV Fluids and injected with Tazocin (3 times a day) along with anti-blood clotting injections. Again that night I could not sleep due to strong muscle cramps across my whole body meaning I was pacing around the ward corridor for 5 hours without a break or sleep and the pain killers had no effect, this time I was given Oramorph with two other pain killers (tablet form) which helped stop the pain but only for 45 minutes. The muscle cramp pain seemed to always start at 11:45pm and stop at 7:30 am without explanation from any doctor, I grabbed my sleep when I could during the day cat napping.

26th June 2013 – I was taken off IV Fluids but still injected with Tazocin. The Doctor advised that I could go home now as my Liver function had improved and my Kidneys were now functioning at about 80%, I was given Doxycycline and took 2 tablets when I was discharged that evening and told to take one a day in the morning for the next 7 days and go to my doctors for new blood test results in two weeks time. Round patches of ‘black’ dead skin appears on wrists and ankles.

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WHH Discharge Summary
Medication on Discharge = Doxycycline capsules 100mg, morning, oral, 7 days
Mode of Admission: Emergency
Diagnosis: ?Leptospirosis
Operations & Procedures = None

Clinical Findings: Patient admitted with constitutional symptoms and pyrexia following a recent admission to Stoke Manderville hospital with ? Acute Kidney Injury (AKI) and sepsis. On admission his inflammatory markers were raised with deranged LFT’s and raised creatinine. The most likely diagnosis was thought to be Leptospirosis and he was treated with IV antibiotics to good effect. He has been discharged with a 7 day course of doxycyclin. Serum for Leptospirosis has been sent and results awaited.

Relevant Results/Investigations: Bloods on Discharge – Hb138 WCC9.8 (down from 15.4) Na138 K4.6 Ur6.0 Cr108 (from 120) Alb31 Pro70 Bili18 AlkP229(from305) ALT55(from 149) USS abdo – Suboptimal images due to overlying bowel gas. Right kidney appeared normal, measuring 11.6cm in length. Left kidney appeared normal in size, measuring 10.6cm in length. No evidence of hydronephrosis seen. There was a 23x23mm well defined hypoechoic area in the left upper renal cortex. Appearances may represent a prominent column of Bertin, however other pathologies cannot be ruled out. Further investigation advised in view of patient’s clinical history. Areas of liver seen, gallbladder, CBD, abdominal aorta, spleen had normal ultrasound appearances. Pancreas was poorly visualised due to overlying bowel gas, but no obvious focul lesions seen. CT abdo pelvis – No abnormality has been identified in either the solid/hollow viscus of the abdomen/pelvis. Particularly in the left kidney no abnormality is noted in relation to the US findings. Some fullness of the renal tracts on either side is most likely due to markedly distended urinary bladder, no hyperdense stones. No lymph nodes/ascites.

GP Actions Required: Please chase the results of the Leptospirosis serology, and kindly repeat U&E’s in 2 weeks to confirm ongoing improvement creatinine clearance.

gosh, i'm having a food poisoning right now and feel terrible, but your story is a completely different dimension. so after that antibiotics treatment it started to get better? good luck with that!

Hi Jereon,

Sorry to hear your ill too...hope you start to feel better soon as food poisoning is a very nasty thing to have and get over...

I had my bloods tested by the official UK Leptospiro Reference Unit as 'Positive' so I deffo have Weils Diesease (which strain is yet to be determined by more tests), upshot is that I am still infected with the bacteria and my symptoms have returned so now on a 2 week double dose of Doxycycline which is starting to taste/feel pretty nasty in my mouth/throat/stomach...reading the drug leaflet it says it helps prevent Leptospirosis which means to me...it probably wont cure/kill it once its in my system...all in all...it leaves me very worried, difficult to manage family life and keep my boss at work happy as so far been ill for almost a month now and maybe will still be unable to return to work as before for another month..fortunately I can work from home on the computer but do still need client meetings, sign documents at the office and help cover staff holidays etc....

It seems I must have been just unlucky to get the worst case of Weils but lucky that I did not die because of it...assuming I now get the right treatment eventually which may include dialysis in 2 weeks time....

Its tricky to identify what lessons can be learned from my Weils experience....

1. Firstly clubs dont want to deter members/joining paddling by saying about the risk of weils and that it can kill you albeit rare 1 in a million chance...even though I was that 1 person...
2. The BCU dont have a Doctors Information on the back of membership cards to help early treatment that I did not get...probably for the same reason as above...
3. You cant not get water in the mucous of your nose/mouth when rolling, splashing, practicing techniques.
4. You cannot wash your hands thoroughly during a mid trip lunch break stop...
5. It is difficult to wash/clean/shower yourself when you get out of the water properly as facilities are just not available riverside.
6. It is hard to convince a doctor/hospital that you might have Weils...as I found...and even when you do...the diagnoses arrives too late and the proper treatment has not even began or completed properly as in my case...