Lyme disease is an infection caused by a tick bite. Diagnosis is not easy, as the symptoms vary from patient to patient and the blood tests available in the UK are not reliable.

The problem is compounded because the health service, NHS and private, are not aware of the problems caused by Lyme Disease.

In the past five years cases of Lyme disease have risen dramatically. However many GP's still know little, about the more serious symptoms of chronic Lyme disease.

This site does not offer medical diagnosis, just the suggestion that if you have an undiagnosed problem, then it may be worth investigating Lyme.

In June 2004 Readers Digest had an article on the 10 diseases that doctors miss, Lyme was one of them. 

Help Someone
 

Lyme Disease Action

Undiagnosed Headaches 

At the start of October 2001 I had a headache, it lasted for over 5 years. I can now make it go away with antibiotics.

My Story in the Daily Western Press

It has been present 24/7 ever since, it is not as bad as a migraine, it is dull and not located in any one point. Occasionally it feels like someone is drilling a hole in my head, but most of the time it is just like a bad hangover. I also feel tired, confused and unable to concentrate, see list later for full list of symptoms. Taking Metronidazole has helped, but only whilst medicated.

Prior to the headaches, I had been very active, with Sailing or Tennis most days of the week. I have been unable to work since August 2002.

Headache Investigations

I have seen four GP's, two Neurologists, an Ophthalmologist, three Dentists and a Physiotheraphist. I have had a CT Scan, two MRI's and various medications have been tried, all without success. 
The diagnosis given was Tension headache, despite the fact that I did not meet all the symptoms. In fact the symptoms closely ressemble NDPH (New Daily Persistent Headache) but the treatment is no different. Neither of these are real diagnosis, it bit like calling chicken pox, "red spots which ..." without actually understanding them.
The approach of the health service, is to accept that people suffer from long term headaches and to wait for them to go away on their own. 
Throughout the entire process I have had to specifically ask for investigations, at no point has the NHS accepted that I have a problem, which they need to resolve. I repeatedly stated that I felt confused and unable to concentrate, yet still the NHS failed to take a proactive role. 

I have also tried Acupuncture, Homeopathy, and a Chiropractor. 

Antibiotics cure headaches

At the start of May 2004 I was prescribed Metronidazole for a Gum infection, within a few days the headaches were not as bad, I was less tired and had better concentration. So I typed "antibiotics cures headaches" into Google and discovered Lyme disease. It seemed incredible that simply typing antibiotic cures headaches into Google could solve all my problems.

Diagnostic Problems

I thought my problems were over, unfortunately this was not correct. I quickly discovered that my GP knew nothing about Chronic Lyme disease, however he quickly organised the NHS recommended Lyme disease test. Whilst waiting for the results to come back I investigated futher and through sites like Eurolyme http://health.groups.yahoo.com/group/eurolyme/ I quickly discovered that the test was likely to give a false negative. I therefore arranged to see a private GP, who clinically diagnosed me with Lyme and started the treatment, with private prescriptions.
On return to my NHS GP, he refused to give any prescriptions on the NHS, as he knew nothing about Lyme. At no point did he suggest how to get Lyme treatment on the NHS and he wasn't interested in reading the Lyme literature I had obtained from the internet. In fact he told me if I left it at the surgery it would end up in the bin. He appeared to know nothing about the false negatives given by the NHS test and that a clincial diagnosis was the best way forward. 

Playing word games with the NHS

I had tests performed at Igenex in the USA Results, these showed Lyme in my system, but didn't prove an active infection. However taken with the clinical diagnosis it did suggest Lyme. I explained this to my GP and asked for treatment on the NHS. He refused. I then explained that I was self diagnosing myself, that I would take responsibility for my own treatment and requested 500mg of Tetracycline, 3 times a day, for a trial period of 4 months. He immediately agreed and gave me the first months prescription. It would appear that getting medication depends on playing word games with your GP.

NHS - Ignoring the facts

By March 2005, my heacaches were no longer constant, but I was by no means cured. At this stage I was referred to an ID Consultant and the Tetracycline was stopped. I stopped taking Metronidazole as well. The ID Consultant diagnosed me, without consultation or taking full case history, as not having Lyme. The letter explaining diagnosis was factually incorrect. I tried complaining to the ID Consultant, my GP and my surgery, and was ignored by all. The GP’s were not interested in my positive reactions to antibiotics, they beleive it is all in my mind.

Since this the headches and the brain fog have returned. I find it incredible that healthcare professionals don't want to help me.

Hindsight

Of course with hindsight things things look much simpler. I can now look back and find other possible connections to Lyme, although I don't think I will every really know.

As a two month old baby I was covered in a rash that sounds like Erythema Migrans, my mother is sure I wasn't bitten by a tick. In fact to this day I have no recollection of ever being bitten by a tick. Although I have always spent a lot of time outdoors, either Climbing or Sailing.

From early childhood I have always had stiff joints and back trouble.

For a long time whenever I had a cold, cough, or was feeling ill, I also had problems concentrating and a feeling of pressure or swelling in my head. This always occured at the same point, on the lump of bone near the middle of the back edge of the ear, mostly on my right ear. 

From the late 1980's to current day, I have had a lot of Gastrointestial problems, vomiting and nausea. This was diagnosed as an acidic stomach and is now controlled by sleeping on a bed with the head raised.

In 2000 suffered from memory problems, personality changes, mood swings, slurring of speech and was diagnosed as depressed. I also had flu-like symptoms which spread to a chest infection.

In 2002 I noticed problems with word block, confusion and an inability to concentrate. I have also suffered from a twitch in my left eye. 

More recently I have had neck, knee and chest pains.

Undiagnosed Symptoms

These are listed in alphabetical order. I have listed all symptoms I have suffered, including those before the headaches started, as I now believe I have had Lyme for a long time. In fact I had the EM rash as a two month old baby. Some of these symptoms may have nothing to do with Lyme. I have highlighted my worst symptoms