Conversations about Lyme Disease with Sufferers and Lyme Experts
In the summer of 1998 I was finding it an effort to keep up the usual momentum of family life with 2 children, an 8 year old and a 14 month old.I felt flu-ish, I tired easily and struggled to remember things.I had always had a photographic memory but now I couldn’t remember anything.At the end of July I noticed some red circles on my right upper arm: there was a white bump in the centre and the circles grew bigger and redder.Roughly 5 inches round.
It’s called a bulls eye rash, or an erythema migrans, but not everyone with Lyme gets a rash.
A week later, an American friend saw my arm and exclaimed “Oh my God, you’ve got Lyme Disease!” She recognized my bull’s-eye rash from warning signs on the East Coast of America and posters she had seen in a Doctor’s Waiting Room there.My American friend urged me to have a blood test.
I didn't know anything about Lyme at the time, but I remembered that ten years earlier I had met an accountant in London who couldn’t work because he had caught Lyme Disease in the U.S. That was the extent of my knowledge then.
The next day I went to my local surgery where I was told by a Doctor that I should go home as “we don't get Lyme disease in this country.”I insisted on a test.He disappeared and came back with a book which said you could get Lyme in this country, but only in the New Forest.As I hadn't been to the New Forest and was living in Berkshire, the Doctor said it was unlikely to be Lyme disease and suggested that I came back in a week if the circles got bigger - as he thought they would probably disappear.
After much insistence, the Doctor agreed to give me a blood test to eliminate the possibility of Lyme Disease.
A week later I rang the surgery and I was told by the receptionist that my test was negative for Lyme disease.I was extremely relieved.The summer holidays were in full swing but all the time I felt something was not quite right.My memory was muddled, my muscles and joints ached, I had blinding headaches, acute hearing, hot flushes, jumpy vision, vertigo and tingling down one side of my body.
My symptoms continued, I felt weepy, I had no appetite, I was losing weight and I had diarrhoea and thrush.My neck and shoulders ached.I also had dyslexia - when I signed my name or wrote anything it was a jumble.I was finding it hard to keep up.It must be said that when I looked in the mirror I looked no different. After about two weeks the mysterious red circles on my arm disappeared, so I thought there was no need to panic.
One Friday evening in August, I had been aware of tingling down one side of my body and I remember wondering if I was going to have a stroke.At the same time, I was surprised to receive a phone call from my Doctor who told me that my blood test was actually positive, and that I had Lyme Disease “whatever that is, but it has probably gone by now,” he said.
The test for Lyme is a two stage test. The first test, is an Elisa test - if it is negative the patient is usually told they don't have Lyme disease.However, it is possible that because I had a rash the second test, a Western Blot test was done and this proved to be positive.Hence my Doctor ringing me to tell me that I had Lyme Disease “whatever that is.”
I was relieved to have a diagnosis because I could now put a name to my symptoms and I had validation that I was feeling ill.I went to bed that weekend knowing that there was a reason I felt so ill.
Over the weekend, a friend, who was a Doctor, researched Lyme on the internet and sent me a mile long fax of information about Lyme cases in America and urged me to start taking antibiotics immediately.So, on the Monday, my Doctor was surprised to see me in his surgery but agreed to a 10 day course of oxytetracycline, an antibiotic.
I then began to research Lyme Disease.
The problem for diagnosis is that the illness starts with flu like symptoms which can progress to other symptoms like tiredness or headaches, mimicking many different illnesses. So unless a Doctor asks the right questions, patients can be misdiagnosed with conditions such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Multiple Sclerosis (MS), Parkinson’s Disease, POTS, Alzheimer’s, Bi-polar disease and Autistic spectrum disorder (ASD).Fibromyalgia and depression.A Lyme specialist, however will recognize a pattern to these seemingly varied symptoms.
Lyme Disease is usually spread by the bite from a tiny tick, which attaches itself to you and injects an anaesthetic, so you don't know you have been bitten.They may be attached to you for hours, but they are easy to miss because they are as tiny as poppy seeds. These are called 'nymphs'.
The tick transmits a bacterium called Borrelia Burgdorferi into the body, which can cause havoc if not picked up early enough.This bacterium doesn’t travel alone, it usually has some co-infections and viruses with it too. If left untreated it can attack the whole body, including the nervous system, brain, heart and joints. It can also cause paralysis in some parts of the body, blindness or mental illness - even causing death.
The good news is that not all ticks carry the bacterium - but we don’t know what proportion do.Studies have recently shown that the Lyme bacterium can be transmitted by horseflies, mosquitoes and fleas.
I was still unwell after 2 weeks of antibiotics so I showed my Doctor the studies I had found and he increased my antibiotics for a further 2 weeks.Then I tracked down a local Doctor who I'd heard had treated some of his patients for Lyme Disease.He told me that he believed many cases went undiagnosed because doctors didn't know what to look for.
I spoke to someone who lived near me who had contracted Lyme 3 years earlier.Her Doctor had been baffled by her symptoms but treated her for shingles.Eventually one side of her face became paralysed with Bells Palsy and she was given steroids.It wasn't until a lab assistant from the New Forest decided to test her blood for Lyme that they discovered what was wrong with her.
(Incidentally, a year after being diagnosed with Lyme Disease I had shingles for the first time in my life.)
Because the immune system is compromised, various symptoms can appear one after another so it can be difficult for patients to be diagnosed - or taken seriously.It’s a good idea to keep a symptoms diary as a Lyme expert would recognise a pattern.
After a month of antibiotics I was still not well.I had chronic fatigue and migrating arthritis around my body, which is when pain moves around the body from finger joints to knee joints and was excruciatingly painful. I managed to arrange a meeting with the chief microbiologist at Southampton Hospital, which was where my blood had tested positive for Lyme disease and she was head of Lyme Disease in this country.I hadn't driven for more than two months and I was in such pain,I had my 16 month old daughter with me.At intervals, I would have to stop in lay-bys where I would cry and wait until the pain eased.
When I got to the hospital the chief microbiologist questioned me on what my rash had looked like.She asked me to identify my rash from hundreds of photographs in her filing cabinet.
It was difficult to find an exact match and I wished I had taken a photo of my rash.Eventually, she asked if I would like to have another Lyme test and I was thrilled with this suggestion.I felt I was being fast tracked and given preferential treatment.
Little did I know that the UK test for Lyme disease is an antibody test so that once antibiotics have been taken antibody production gets turned off, so antibodies are unlikely to be found in the blood and the test will be negative.
My test was subsequently negative. It was at this stage that I realised I was completely on my own without any support, but I had to do something.I saw a Doctor in the New Forest and a Consultant at a private hospital in London but they both rang the Chief Microbiologist at Southampton, who told them that I didn’t have Lyme disease any more. I felt abandoned by the system and I was left to treat a disease I was now told I didn’t have.
I found walking painful because my joints ached.I learnt to live with the fatigue as I still had my family to look after.As a journalist I wrote about Lyme in the press to raise awareness and was contacted one evening by Gill, a woman in Yorkshire who had been a pathologist, she had seen my article in ‘The Independent’ newspaper and told me she’d caught Lyme disease from taking ticks off her dog.She was finding it difficult to be believed by the medical world.She was organising a group of people she knew who were also suffering and would I come along to a meeting she was organising in York?
I agreed and met a couple of Doctors there who had Lyme - one of whom said to me“until Doctors have had Lyme disease themselves it wont be taken seriously in this country.”
At that meeting I agreed to help and we formed an organisation called Lyme Disease Action (LDA).I agreed to be the Honorary Secretary and to raise awareness in the media if I could.LDA was eventually given Charity status and held excellent Conferences at various Universities around the country with lectures by Lyme specialists from around the world.Hundreds of people would turn up and I managed to arrange TV and Radio coverage plus some articles in magazines. Later, I decided to spend my time raising awareness about Lyme from home so I resigned but kept in touch.
I was still not better and saw a homeopathic Doctor in London (Marilyn Glanville) who specialises in women’s health.I told her I had Lyme disease and she later sent me some information abouta herb which was supposed to help Lyme Disease symptoms - it was called Samento - a form of cats claw from the Peruvian jungle.It is an antimicrobial.I got hold of it and in time I (miraculously) got better.The brain fog lifted and I was able to cope well enough cognitively to take on a job with a well known Charity.
Arthritis is one of the symptoms of Borrelia Burgdorferi (Lyme) and I still suffered stiff and painful joints, it was difficult to move easily and to walk for any length of time.One weekend I had taken my daughters to London and was in such pain that I remember wanting to cut my leg off.An X-ray showed arthritis in both hips.I struggled with the pain for many years and was given an appointment to have a bilateral hip operation but, because of my demanding job, I kept thinking I would hang on for a bit longer.I was taking pain killers and muscle relaxants at night and never left home without them. By 2012 I realised I had to have the operation and so I took voluntary redundancy and I was admitted to the NHS Nuffield Orthopaedic Hospital in Oxford for a bilateral hip replacement which was very successful.I never looked back -I could walk for miles and play tennis without any pain.The operation transformed my life.
But my immune system has been weakened, since being diagnosed with Lyme I have had shingles five times and persistent chronic fatigue.Chronic fatigue isn’t just tiredness - my brain would shut down - then my body would 'fizz', I had to lie down for a couple of hours, at least, until I had some energy to carry on.
I changed my GP in Berkshire to one in Wiltshire near the Savernake Forest, who I had heard regularly identified Lyme Disease from his patients’ symptoms.I had started a new job with the BBC but went down with shingles.There didn't seem much point in having another blood test for Lyme in this country if it was going to be negative again.I had heard of alternative tests in the U.S. and Germany so in February 2016, with the approval ofmy Doctor, I sent my blood to Armin Labs in Augsburg, Germany, the test there is called the Borrelia burgdorferi- EliSpot test which is more sensitive than a conventional ELISA serology test used by the NHS. The EliSpot is said to detect one single Borrelia borgdorferi- reactive T-cell in the blood sample.Detection levels can be as low as 1 cell in 100,000, it is said to be one of the most sensitive cellular assays available.
The results came back informing me that I had active Lyme borreliosis as well as other coinfections and a virus.I suppose I wasn’t surprised but the real shock is not having a Lyme expert to turn to. I had two options - antibiotics or herbal antimicrobials.I was left to research various protocols on the internet and with some information given by Armin I decided to take herbal antimicrobials seeing as Samento had been so helpful before.After a month of taking an assortment of herbs (bottles of tinctures and capsules) my chronic fatigue stopped.But I was advised by Armin to carry on taking the herbs for a minimum of 6 months.
My Doctor was retiring but on the day he left he saw the German results and said that I had better see an Infectious Diseases Consultant and referred me to the Hospital of Tropical Diseases in London.A few months later in July 2016, I had my first appointment in London.I saw a Registrar and then an Infectious Diseases Consultant, she told me that there wasn’t much Lyme Disease in this country.It was mainly in Europe and America.I was told that my German tests would be ignored and that I would have another test as the test in the UK was perfectly good.She said that German labs were not accredited so I would have to have another blood test.Although she didn’t know where my blood would be tested (Porton Down is PHE’s main centre for Lyme Disease) and she didn't know how it is tested either, I told her that I expected my results to be negative because the test is considered inadequate by Lyme Disease specialists.I said that I was feeling fine and my chronic fatigue had improved after one month of herbs. She told me that if my blood test came back negative I would be referred to a Chronic Fatigue Department for cognitive behaviour therapy and PACE (graded exercise).Treatment which has been recommended for ME sufferers but which has been refuted by the ME Association.
At my next appointment at the Hospital in October I was given the result of my blood test.It was negative.The Registrar didn’t know which lab had tested it, nor which strains had been tested (this is another controversial issue - the UK test only tests for a few strains, not those which are common in the UK). I was told that their hospital was the best and that herbs could be very damaging.I said that I was happy to be discharged.
I have brought you up to date. I am relatively well, but I have to be on the alert for chronic fatigue and making sure that I build up my immune system. I have to work from home so that I can rest in the afternoon, if necessary.
I am one of the lucky ones - lucky because I got a rash.Lucky because in 1998 I got a positive NHS Lyme result. Lucky because I was treated early with antibiotics, which is an important factor in treating this organism.
Since then I have made every effort to raise awareness of this awful disease and have written for national newspapers, magazines and appeared on television and radio.With others I have protested at No. 10 and at Parliament.I have attended meetings at the House of Commons with hundreds of lyme sufferers from around the world.
It has been an uphill task convincing editors that Lyme is an important topic - when the Department of Health says that the disease is ‘rare’.But over the 22 years since my diagnosis things have undoubtedly improved. Thanks to social media there are groups keeping sufferers informed and in touch with one another. There are Charities working hard to inform Doctors and raise awareness.
The last 22 years have been a huge struggle for me but I know there are people who are far worse off than me, because they have reached dead-ends on their Lyme journey and have become very disabled.Over the years
I have had Lyme, I have met too many sufferers with tragic stories, too many to mention here.I met a woman who was bitten by a tick in a park who gradually went blind, she courageously went on hunger strike to raise awareness. I was once writing about a City businessman who got bitten riding his bike through Richmond Park, he became very ill, lost his job and got divorced so he ended up without his family.The paper sent a photographer to his parent's house, where he was living, and said that he looked too ill to appear in their national newspaper.Some months later I heard that he had died.And it is always heartbreaking to hear the struggles that young people suffer from Lyme and the anguish it causes their parents.Some families have had their children taken away from them, accused of munchausen by proxy and others are threatened that if they go abroad to treat their children they will be put in care.I even met an American cancer surgeon, Neil Spector, who had to have a heart transplant - because his Lyme had been misdiagnosed and discovered too late.
It is for all these people, and many others, that I dedicate this podcast - we are in the midst of a corona virus pandemic - but for many Lyme sufferers we know there is another pandemic taking place invisibly because the medical world says it's 'rare' and the number of sufferers aren't counted.Hopefully, once the corona virus has been and gone, the spotlight will then fall on Lyme?