When I went to see the consultant in Liverpool in April 2008, I was hopeful to get some treatment. My memory was failing me, I had given up work for 3 months and it affected my muscles, joints and ultimately my mood. All I could do was hope that someone could listen, that someone could take me seriously enough.
The consultant seemed nice enough, although alarm bells should have warned me when he confidently said that 3 weeks of doxycycline was more than enough to kill any Lyme bacteria....Guess he had not heard of L or Cystic form of the Borrelia spirochaete and the fact that Chronic Lyme Disease exists as an entity. If you need evidence there are many papers all around the world published in the matter.
I was discharged from clinic ultimately saying that my bloods had been sent to the Health Protection Agency and that the report had worded that there may have been too much background staining and therefore dismissing my previous positive result. I had Erythema Migrans which is pathognomonic of Lyme disease clinically...What do you say to that?? Re write medicine??
But according to them anyway, Lyme Disease does not exist in New Zealand...Wrong again...Better check your facts. Oh and they also had lost some of bloods...Who am I going to trust here do you think?
In July 2008 I repeated a second test in Portugal which remained positive. It was then after writing an article about my experience with Lyme, that a few good people equally suffering from Lyme disease put me in touch with a Lyme Literate Doctor in the UK. I had lost faith in the NHS, so I went private and have not regretted it ever since. The improvements are remarkable and although there are still some minor issues I can't thank my LLMD enough.
I was determined not to let the Lyme stop me from what I loved doing, my work and my travelling. So I decided to work as a ship doctor in the South Pacific and then again in the Caribbean. I was very lucky and privileged but also worked very hard to balance everything.
In March 2009 as I was changing antibiotics I developed a significant Herxheimer reaction. Some of the old Lyme symptoms were creeping up again. The senior doc agreed to send my bloods for further testing in the lab in Florida guess what? my IgM WB was positive for Lyme Borreliosis as per CDC criteria. IgG was negative but then my infection is still active and current. As I recall Florida sees a lot more Lyme cases than the labs in the HPA.
What do you say Health Protection Agency? Do you claim to have more experience than the CDC and three other positive WB tests ( two done in Portugal and one in Florida ) ? A formal enquiry instigated by the governor of Connecticut has currently frozen the IDSA guidelines. But what about UK or even European guidelines? Are we going to be dictated by the corrupt insurance companies in the States who had vetted interest in 9 out of 14 members, the same people responsible for producing guidelines ? The same guidelines which are then accepted as the gold standard for the rest of the world ??
In my work as a General Practitioner in the NHS, I take my time as much as possible, I am thorough and patients later thank me for it. They often say it is because you listen. There are many things I do not know and I search for help and guidance when I don't know. I am not afraid to ask for help. I do not have the arrogance that some of my fellow colleagues so clearly express The old mantra ..If I can't explain it then it does not exist seems to work for them.
This is incredibly frustrating. We have the lowest consultations times in Europe which leads to large amount of stress amongst staff, GPs and patients. I believe in an NHS system and free health care but sadly government changes dictate that doctors spend most of their time worrying about QOF points, profits and hospital stars and less about adequate patient care.
At the end of the day, I sleep well at night thinking I have positively influenced the lives of a few people simply by listening and daring to open the can of worms.Thankfully I am not alone and there are a few willing and great doctors out there.
Post Scriptum: Oh and may I suggest you watch the documentary Under Our Skin ?You will learn something.
