Submission to Lymes Senate Enquire

History:

I am a 53 year old Company Director based in . I am married with 1 child and have always enjoyed good health throughout my life. I have operated a medium sized manufacturing and consulting business with offices located throughout Queensland for the last 25 years.

In early March 2013 I was bitten by a tick in the upper leg area at on the Atherton Tablelands in Queensland and after the tick was removed the area became very red and itchy with a bullseye type rash. Soon after I travel to to attend a conference and began feeling unwell with very sore feet and exhaustion and I latter recalled that the area around the tick bite was very itchy at this time. I assumed the unwell feeling was caused from standing all day and that it would go away soon however in the following weeks other issues began occurring including dry mouth, memory loss, coughing, aching joints and blurred vision which I thought was some type of chronic fatigue. I was unaware at this time that tick bites can cause issues so the two were never connected.

In June 2013 I was unable to walk after doing some physical work so sort medical advice and after blood tests showed nothing untoward it was assumed the condition was chronic fatigue so I began cutting back on my work schedule and any physical activities such and mowing and manual work.

The condition continued in an up and down patten until March 2014 when I began to feel very unwell with pain in the upper chest and back, difficulty in breathing and severe fatigue. I had lost 5 kg in weight in a short space of time and a blood and CT scan showed pancreatis so I stopped work completely for a few weeks until the condition stabilised. I then began working limited hours and cut back or ceased many family activities.

Up until this time the cause of the condition was still a mystery until I read a Cairns Post article regarding another person that had become unwell and diagnosed with Lymes after a tick bite and it was only then that I realised the symptoms were the same as mine and advised my Doctor of the tick bite. Special blood test were performed by a Sydney clinic and a naturopath without positive results however the symptoms continued in the same patten with some days being confined to bed. Condition seems to be worse latter in the day than mornings. Condition seems to improve somewhat after several days off work with rest.

Current symptoms:

1. Exhaustion 2. Fatigue 3. Blurred vision 4. Breathless 5. Poor concentration and confusion 6. Memory loss 7. Loss of interest / initiative 8. Moody and short temper 9. Flu like symptoms 10. Increased cold / flu effect 11. Skin marks 12. Sore / aching feet 13. Ache joints 14. Hot and cold feeling 15. Heavy / jelly legs 16. Wake up tired 17. Persistent cough 18. Sore throat 19. Sore knee requires strapping 20. Lower abdominal pains both sides 21. Driving after 2 hours difficult

Current medication and treatment:

1. Antibiotics when required 2. Rest 3. Limited work hours

Effects this has had on my lifestyle:

I am unable to work full time let alone run hands on business so have had to employ a full time manager and list my business for sale. I am unable to do any physical work and can only walk short distances before becoming exhausted. The condition seems to come in waves over a 3 month period with peaks and troughs type of scenario so I am unable to plan ahead with regards to travel or appointments due to the uncertainty of my health. My memory is effected on a regular basis and I become confused when writing reports or when trying to concentrate.

Conclusion:

I have no doubt that the cause of my illness originated from the tick bite in March 2013 and would be best described as a Lymes like tick borne virus. One of the main frustrations I and other sufferers have experienced is the apparent denial by some medical experts including the AMA that Lyme’s Disease exists in Australia. I believe that this type of approach has taken the focus away from the important issue of helping suffers and finding a treatment or cure. Lyme’s or not what is undeniable is that people all over the place are becoming very ill after getting bitten by ticks and the symptoms are simular or identical to Lyme’s so if it’s not Lymes what is it ? As my Doctor put it – “If it’s not Lyme’s it’s a very close cousin to Lyme’s.”

One other important point is I believe that if this virus is treated with a course of antibiotics within the first few weeks of being bitten with a it can be cured however under the current system Doctors are unable to diagnose the symptoms within their internal computer systems as Lymes is not listed and can be similar to other conditions such as chronic fatigue. In my case if I was aware that tick bites can be dangerous I could have alerted my Doctor to the fact I had been bitten and possibly been treated.

I believe I would speak on behalf of all suffers of this condition in saying we don’t care what you want to call it just please recognise that there is some type of tick borne virus in Australia that is similar to Lymes and allow Doctors to treat it.