Lyme Disease Factsheet

About Lyme Disease

In recent years there has been an increasing amount of information published online about Lyme and other tick-borne diseases

Whilst it is wonderful news that Lyme disease is becoming more talked about and understood, there is still much mis-information and inaccuracies being spread about the ease of its diagnosis and treatment, and the ability to cure quickly and simply.

In this article we share with you the most common symptoms that patients experience when they have moved into chronic or late-stage Lyme disease.

We also share some facts about the disease, and some of the common misconceptions and myths that you may have heard. This article is not an exhaustive list of everything a patient may experience, and if you believe you have a tick-borne disease, we encourage you to seek further reading and advice on approved website sources which can be found in the resources section of our website.

Lyme disease is an incredibly challenging condition to treat. The Lyme bacteria (Borrelia) moves very quickly through the body and is highly resistant to the immune system.

Lyme Borrelia is a bacterium that is highly evolved and sophisticated and manages to hide, mutate and evade the immune system with ease. It then is able to set up residency in the hardest to reach areas of your body with the least amount of blood supply such as tendons, connective tissue, the brain and other organs. These hard to reach areas are difficult for your immune system and conventional antibiotics to reach, and therefore the Borrelia bacteria becomes very difficult to kill.

This is when chronic, or late stage Lyme develops as colonies of the bacteria are able to replicate, thrive and live undisturbed in the body for many years, slowly making the patient more and more unwell.

Misdiagnosis is common

Lyme Disease is known as the ‘great imitator’ because its symptoms can be similar to other illnesses such as fibromyalgia, ME, Chronic Fatigue Syndrome, Multiple Sclerosis, Alzheimer’s Disease and Parkinson’s Disease as well as more minor illnesses such as feeling depressed, ‘flu-like’ or feeling ‘under the weather’. This is why many doctors dismiss or overlook the disease believing that the patient is not truly unwell.

Many conventional tests that are conducted, often come back as ‘within range’ or ‘normal’ and the medical practitioner therefore believes that the patient has no ailment or condition of concern.

This is further exacerbated by the fact that a patient can often report rapidly changing symptoms from day to day making it very hard for the average doctor or health practitioner to pinpoint and correctly diagnose what is wrong with the patient, often believing that the patient is ‘making it up’ or experiencing ‘psychosomatic’ symptoms.

Misdiagnosis carries an additional health risk

When a Lyme patient is misdiagnosed with another illness or disease, and subsequently given a treatment for that disease or illness, there is often an additional health risk to the Lyme patient as they may be given a drug that exacerbates symptoms and the disease in the patient. This can lead the patient to become more unwell and further weaken their immune system.

For example, many Lyme patients are often given steroids to help with pain and inflammation. Steroids are known to lower the immune system, which in a patient with Lyme disease (who already has a dangerously low immune system due to the Lyme bacteria suppressing it), enables the Lyme Borrelia bacteria the opportunity to take a stronger hold within the body, thereby making the patient even more unwell.

The most common chronic Lyme symptoms include:

  • Feeling like you have the flu
  • A general feeling of malaise / not feeling well
  • Fatigue and exhaustion
  • Heaviness and tiredness of limbs
  • Joint pain
  • Headaches and/or eye pain
  • Stiff neck and sore muscles
  • Low grade intermittent fever
  • Night sweats
  • Swollen lymph nodes
  • Heart palpitations
  • Neurological shakes
  • Gastro-intestinal issues
  • Weight loss
  • Unexplained skin rashes
  • Hair loss or thinning
  • Brain fog, confusion and/or short-term memory loss
  • Anxiety, depression and panic attacks

And the list goes on…

False negative blood tests can confuse people

There is a very small window of time of between 10 days – 6 weeks when a standard Lyme blood test (the kind available on most government health care systems around the world) is likely to be accurate in diagnosing Lyme Disease.

At this early stage of the disease the first line of defence by the body are IgM immunoglobins – which the immune system produces to fight off the infection. These IgM immunoglobins are detectable in basic tests, but only if the body’s immune system hasn’t already been supressed by the Lyme bacteria. Antibiotic treatment may also interfere with an accurate blood test result, even at this early stage.

After two or three months, IgG immunoglobins should still be active and the antibodies they create to defend the body against more persistent infection may still be detectable. If however, a blood test is done too soon after the tick bite, then the IgM may not show up, hence the timing of an IgG blood test is crucial for the most reliable outcome.

After three months, the only course of action is to go to a specialised lab that uses much more sophisticated and modern testing methods that enable the Lyme bacteria and the many co-infections that may be present within the patient, to be detected.

It is also worth noting, that a tick can pass not only the Lyme Borrelia bacteria, but a whole host of other bacteria and parasites to the patient. These other bacteria, known as co-infections, are not part of standard testing by most health care organisations, and undiagnosed present their own series of health complications and symptoms.

If you are bitten, don’t wait until you feel unwell

If you suspect you have been bitten by a tick and may have Lyme Disease go to your GP and talk to them. Time is of the essence and even if you don’t feel unwell, it is important to be treated for acute (early) Lyme disease.

An erythema migrans rash, also known as a bull’s eye rash, is not present in all patients and so do not rely on this as a reliable method to determine whether you contracted Lyme disease or not. It may be that your body simply did not produce a reaction when infected.

The first few weeks are key. If you get treated early enough with the standard first line of treatment (often an antibiotic x 4wks) then you stand a good chance of preventing the onset of late stage or chronic Lyme.

Lyme disease cases are increasing in the UK

Lyme disease is a significant and increasing threat to human health in the UK. The NHS estimates conservatively that there are 3,000 new cases diagnosed annually in the UK (data from 2019).

However, Lyme disease charities and support groups believe the figure is much higher and estimate approximately 9,000 new cases in 2019 alone. The number of cases in the UK is predicted to rise every year as the disease becomes more prevalent across the UK and Europe. Warmer weather attributed to climate change, is also providing the ideal environment for ticks to breed and spread geographically.

Lyme disease infects between 650,000 and 850,000 Europeans every year and in the last 12 years, cases have quadrupled around the globe. This is a global epidemic on the rise and medical professionals need to become more aware of the multitude of different and often unusual ways Lyme disease symptoms presents itself in a patient.

We believe it is essential that medical professionals stay alert to the possibility of Lyme disease within their patients and look out for ‘odd’ or ‘out of the ordinary’ symptoms reported by patients that appear unrelated but actually have a common cause.

Is there a cure yet?

Yes and no.

Yes – if it’s caught early and treated appropriately.

No – if it isn’t treated by conventional and other supportive treatments.

Without quick treatment the Lyme bacteria will quickly establish itself in the body and the patient may spend many years with poor health, seeking a diagnosis to determine the cause of their mysterious illness. Once chronic Lyme disease has taken a hold of the body, the only route to regaining good health is through finding a reputable and qualified Lyme literate clinic who can diagnose, treat and support the patient to return to good health.

There is currently no programme of treating chronic Lyme disease in most public health care systems around the world.

What is being done in the UK to further research and treatment into Lyme disease?

There is a growing awareness in many countries around the world that Chronic Lyme disease exists. Lyme doctors and researchers are working together more and more to share knowledge, diagnostic tools, treatment protocols and improve the quality of life and treatment outcome for patients.

However, many countries, including the UK, still struggle to accept chronic Lyme as a legitimate disease and therefore many patients spend many years visiting specialist after specialist struggling to determine what is wrong with them, and if diagnosed with Lyme disease, they often still cannot get appropriate long term treatment through their standard healthcare provider.In the UK, GPs currently only have a protocol for Acute Lyme Disease for which they prescribe antibiotics for 3-4 weeks.

Chronic Lyme Disease cannot be treated by a short course of antibiotics. It requires private clinics such as our Lyme Disease Clinic here in the heart of London to help patients receive a correct diagnosis, support and a personalised treatment protocol made up of many different medications and supportive treatments to help kill the bacteria and support the immune system. Even then, some chronic cases in patients can take several years before they return to ‘normal health.’

Common Myths & Misconceptions about Lyme Disease

Myth #1 – Only Ticks carry Lyme Disease

No, ticks do not carry only Lyme disease. Most ticks carry four to six other diseases. They are said to have a ‘dirty mouth’ as they carry many bacteria, viruses, fungi and protozoans which they transmit in a single bite. When a tick bites you, all the bacteria they are carrying from the blood of previous organisms they have bitten (including deer, squirrels, rats, dogs and cats) goes into your blood stream causing co-infections.

Myth #2 – Ticks are only a problem in the Summer

Not so – ticks survive even freezing temperatures and you are just as likely to be bitten in the winter months. In addition, if your dog or cat has ticks, they can crawl on to you too so checking your pets on a regular basis is very important.

Myth #3 – Lyme disease is rare and very low risk

Not true. Ticks are everywhere. From farmer’s fields, to forests and grasslands, to your own back garden. They are not restricted to a few areas in England or abroad. Ticks are found in every county in the UK and we regularly see patients from areas that are reported as ‘tick free’ having been bitten by a tick when camping, walking, gardening or picnicking with family. Where there is long grass anywhere in the world, there is the risk of a tick bite. And where there is a tick, there is Lyme disease. Do not be complacent and the best way to not get this disease is through prevention.

Want to know more?

If after you have read this article you feel that you may have Lyme disease and would like to speak to our Lyme Team, call us on +44 (0)203 095 0009 to book an initial consultation.

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