This is a disease that is really important to talk about because it is a real disease, but it has been hijacked by alternative practitioners of all descriptions globally, leading to fear and misinformation. As we will talk about later, at extremes, some alternative practitioners have even managed to “diagnose” it and charge patients equivalents of €20,000 for “treatments” — in countries where there is no Lyme disease.  This is not just an Irish problem, or a post-Covid problem.  It’s been going on globally for quite a few years.

So, let’s break Lyme Disease down:  What it is (and what it is not), where it is found – how it can be prevented! – how it is transmitted, who can get it, what the symptoms are, and how it can be treated.

Lyme disease is caused by a bacteria, not a virus. 3 specific bacteria spirochete species called the Borreliella. The “Borrelia Burgdorferi” is mostly in the US and species “Borrelia afzelii” and “Borrelia garinii” in Europe.

It was discovered in 1977 in Connecticut when doctors investigated why a number of teenagers had early onset arthritis.

How is Lyme Disease transmitted? This is are first part of #mythbusting today!  

It is spread through the bite of certain ticks only. (And it takes several hours of the tick feeding on host to transmit disease.) That’s it. Let’s de-bunk some internet fear-mongering:

• There is no evidence that Lyme disease is transmitted from person-to-person by ANY means, including touching, kissing, or sex.

• There is no evidence of Lyme disease transmission from breast milk.

• Your dog or cat can get Lyme disease, but they cannot spread the disease directly to you. However, they can bring infected ticks into your home, and that tick can bite you. So, it is worth talking to your vet about protecting your pet from ticks.

• You can not get Lyme disease from eating game.

• There is NO evidence that Lyme disease can be transmitted through air, food, water, or from the bites of mosquitoes, flies, fleas, lice, or ANY other insect except for certain ticks. No, not possible. This has to do with the borrelia spirochete itself. It’s very picky.

Prevention

Have your children cover skin by wearing long trousers and long sleeved shirt and closed shoes, as well as wearing a hat and tuck in hair when rambling, walking, or cycling outdoors.  Ticks can be found almost everywhere in Ireland, even in urban areas.

Key Step 1: Use an insect repellent containing DEET. As previously discussed at length here, DEET is the most effective repellent and is the safest for pregnant women, infants, and young children. Look for around 25 – 30% DEET products, if available.

Key Step 2: The Nightly Tick Check! Check your children’s skin, hair and warm skin folds (especially the neck/scalp) for ticks EVERY evening after your children have played outside.

Found a tick? If a tick is removed within the first few hours, the risk of infection is VERY LOW. Remove entire tick with tweezers by gripping it close to the skin, careful that the mouthparts don’t break off. Wash the area with soap and water. https://youtu.be/27McsguL2Og

Lyme Disease symptoms are notoriously different from patient to patient. There are many possible symptoms, and can mimic other diseases. The majority of patients don’t recall a tick bite. (Remember, a tick falls off after it has had a good feed.) So, if you never noticed it, it still could have happen. #

Because the symptoms of Lyme disease can be quite vague, it means that diagnosis can be difficult at times, especially as patients may present late to the doctor or present to the doctor with symptoms that are initially hard to pinpoint. Many patients don’t remember a tick bite at all.

What symptoms are we talking about?

Early disease:   A special rash called “erythema migrans” often appears (see pic). But not EVERY patient gets this classical rash. It can also look very different in some patients. Certain patients can also have an allergic reaction to the tick bite (like they would to a mosquito bite), making it more confusing. The rash can appear anywhere from 3 – 30 days after the tick bite. So, if you or your child gets bitten, watch that area for one month. Want some examples of what that rash might look like? The CDC has a useful picture guide here.

Patient may complain of fever, chills, headache, fatigue, muscle and joint aches, and/or swollen lymph nodes. Do those symptoms sound familiar to you? It does to your doctor, too. Unfortunately, early Lyme Disease can often mimic glandular fever, flu, covid, or that local viral bug going around.

Patients may also complain of severe head and neck pain, more rashes on other areas of the body away from original bite, severe joint pain and swelling, particularly the knees and other large joints. Sometimes, patient temporarily have weakness in the facial muscles. There can be pains in tendons, muscles, joints, and bones. Less commonly, patient can have heart palpitations, dizziness, or shortness of breath. Some patients complain of sensation of “brain-fog” or problems with short-term memory.

Late Disease: The infection spreads and can cause inflammation to joints, causing pain and swelling. While, it can spread to the heart tissue, or to the brain/spinal cord, this isn’t common, but affects between 10- 20 people in Ireland each year.

Post-Lyme Disease Syndrome or Chronic Lyme: Like many other diseases, the end of a disease/infection doesn’t always mean that you are automatically feeling better.  Long Covid is another example – but we are still no closer to really understanding either.  An infection has passed, but your body will still have symptoms until you fully recover. And certain diseases ARE worse for this than others. This phenomenon isn’t unique to Lyme Disease, but certainly, it is one of the worst examples of where this phenomenon has led to patient exploitation.  It is worth noting that Long Covid patients are currently often targeted by the same practitioners that targeted chronic Lyme prior to 2020.

After Lyme Disease, patients often complain of headache, fatigue, and joint pain for months after the treatment of Lyme disease has ended. However, these symptoms DO resolve, and there is no need for long courses of additional antibiotics to improve your symptoms. Understandably, patients are often frustrated or even depressed by the ongoing symptoms.  Some patients are left with permanent long-term fibromyalgia after Lyme disease, another target for exploitation by unethical alternative practitioners.

Complementary therapies can be helpful for long term problems from Lyme Disease, but practitioners providing these therapies should not make misleading claims for cures, financially exploit patients, peddle additional expensive pseudoscience tests or promote unsafe treatments.  They should also be fully transparent about their financial interest in any non-standard treatment recommended or prescribed, including supplements or hyperbaric oxygen.

How IS Lyme Disease Diagnosed? By working with your doctor. It is usually diagnosed based on symptoms and the rash. However, not every patient’s rash is characteristic and becomes more difficult if the disease is in later stages. The blood test for Lyme disease doesn’t become positive for about a month after infection, so while your doc may take blood tests, expect that your doctor may repeat it later or even recommend waiting to take the blood test.

The nature of the disease, we covered above, means that diagnosis can sometimes be difficult. The natural course of the disease — even when properly diagnosed and properly treated!! — can leave patients with frustrating long term symptoms, especially pain and fatigue, that have no quick cures. Patients get depressed or angry that there is no test that can tell them when they will get better or any pill that can make all their symptoms go away. Reassurances from doctors are often felt to be inadequate. They want more to be done. Patient support groups have a role here.

 The danger here is when these patient support group members stop actually supporting the patients they are advocating for. How could a patient advocacy group ever fail a patient? This can happen several ways, usually online. Sometimes, the group begins to share and promote pseudoscience theories (“Lyme disease is really a type of cancer”), hard-core paranoia/conspiracy theories (“Lyme disease is a cover-up for a Nazi bioweapon tested by the US in the 70’s” ) or just allows fear-mongering (“My life was ruined, yours will never get any better either.”), or unknowingly allows in group members who are targeting the group with exploitative or unethical for-profit alternative therapies/practitioners (“I was so unwell until my friend told me about this lady who has this test/cure/herb/clinic.” Add extra Red Flag if “DM for details.”).

The complicating factor is that there are a number of patients who self-diagnose or use alternative testing for Chronic Lyme Disease. The problem with this is that when these patients disengage with conventional medicine (some self-identifying as Lyme Warriors), that another real diagnosis such as chronic fatigue syndrome, fibromyalgia, cancer, or any number of autoimmune or rheumatology conditions such as lupus may remain undiagnosed and/or untreated. Australia has provided us with fascinating clinical studies on patients who began to present with self-diagnosed chronic Lyme disease — in a country with no endemic Lyme disease. [interested? Read more: https://onlinelibrary.wiley.com/doi/epdf/10.1111/imj.13746]

The media also knows this is REALLY click-bait stuff, and reporting on Lyme disease is sometimes less than responsible.

The pseudoscience industry here is expansive. Everything from alternative tests (they don’t work) to expensive therapies (they don’t work) at expensive centres (that aren’t accredited) are targeted to people with either 1) long term symptoms from Lyme disease 2) symptoms similar to long term Lyme disease but actually have never had Lyme disease. Even as I was putting together links and resources for this series today, my feed and search engines are being bombarded for offers of testing and “natural” treatments.

What do experts recommend?

1. Choose a doctor you trust and who can work closely with you.  Make sure you check their credentials, and that they are IMC registered.  Remember that legally a practitioner must be a registered physician to diagnose and treat disease.  [This includes “Functional Medicine” appointments; these should not be offered by anyone who is not a IMC registered doctor.]

2. If your doctor agrees to start antibiotics for several months, make sure you talk about the risks and cost, as this can be dangerous and expensive.  Online dial-a-doc services have been a new problem in something called “antimicrobial resistance” – when we use antibiotics too often and when they aren’t needed. 

3. Make sure not to rely solely on antibiotics. The evidence for a benefit from antibiotics is weak, and experts should rely mostly on their physicians’ clinical experience and interest in the disease to design a personalised therapeutic plan. For some, a more holistic approach may be the way to go.

4. If you try supplements, remember that they are not regulated and don’t be afraid to think about whether the person prescribing or recommending these directly or indirectly profits from selling you these supplements. We don’t have a law in Ireland that requires prescribers to declare conflict of interest or prevent them from prescribing supplements from which they directly/indirectly profit. 

5. Consider asking your GP for referra to public/HSE programmes with ongoing research on how to diagnose and treat Lyme.[My note: Your GP can refer you or help you research a reputable study or centre that won’t charge or exploit you, and will be governed by strict medical ethics.]  

Want more resources that you can trust on Lyme Disease?  https://www.hse.ie/eng/health/az/l/lyme-disease/ and https://www.hpsc.ie/news/hse-hpsc-advises—be-tick-aware-keep-you-and-your-family-safe-from-lyme-disease.html