Is This Lyme Disease?
Summary
Is This Lyme Disease? asks whether my persistent infection of ten years could be Lyme Disease. Lyme disease is a tick-borne bacterial infection that is caused by the bacteria Borrelia Burgdorferi. It is also known as borreliosis, and it is spread through the bite of an infected tick. The early signs and symptoms of Lyme disease are a circular or oval-shaped rash around where the tick-bite occurred.
A Cool Dentist
I had a wonderful dentist in Halifax, West Yorkshire. She would belt out pitchy renditions of Beautiful South songs while she doing a scale and polish. I can remember so clearly how convinced she was that I had Lyme disease. It was the chronicity of my symptoms that fuelled her conviction.
My singing dentist urged me to contact the Phones 4U founder, John Caudwell. John Cauldwell hit the UK headlines in 2018, when he and his family were struck down with Lyme Disease. He pledged his own money in a bid to spark a government-led research program into Lyme disease ‘to improve the NHS’ woeful lack of understanding of the illness.’ [1] Five years on, I question whether my dentist may have been right. Do I have Lyme disease?
How It Started
My illness began in 2013. It started with a flea bite. I think it was a flea that bit me, but I’m not entirely sure. I was staying at a monastery on a residential retreat. This monastery was in North Yorkshire. It was surrounded by rural woodland, where there are relevant tick and wildlife populations.
The chambermaids had not changed the bed sheets in my room before I arrived. I stupidly got into the bed. Fleas bit me on my arms, legs, and stomach. One flea bit me on my left eyelid. Immediately, I had a red bump on my eyelid. That bump clenched my eyelid for five months. The red lump didn’t resemble the classic oval Lyme rash, but because it was on my eyelid, perhaps it looked different. My infection stemmed from that red bump. The swelling spread from my eyelid, down to my cheek, and around the left side of my head.
Lyme Symptoms – Stage 1
There are three stages to Lyme disease symptoms. Stage 1 is the Early Localised Stage. Symptoms include fever, headache, fatigue/loss of energy, malaise, chills, neck pain, muscle aches, and swollen lymph nodes. I can remember the early stage of my illness vividly. I suffered all of the symptoms associated with the first stage of Lyme. During the first two years, I had no energy. I had constant chills, especially around my parotid area, and I was exhausted. I suffered with muscle aches and a very stiff neck. For the entire 11 years, I have had a consistently raised neutrophil and white blood count, indicative of bacterial infection.
Lyme Symptoms- Stage 2 & 3
I suffered with the symptoms that are congruent with stage 2 of Lyme disease. This is known as the Early Disseminated Stage. My symptoms were neck pain, an irregular heartbeat (tachycardia), painful swelling in the tissues of my eyelid and eye, swollen lymph nodes, and flu-like symptoms. I have not suffered with pain or numbness in my hands or feet. Nor have I had joint pain. I have not experienced arthritis in my joints either. Arthritis is a symptom that is associated with the late-disseminated stage. However, according to The Mayo Clinic, in the late stage, ‘you may still have symptoms from the earlier stages, and more serious cases may also cause damage to tissues.’ [2]
Reflection
What the Mayo Clinic says about patients experiencing early-stage symptoms later on resonates with my experience. I still have painful swelling in the tissue around my left eye. Doctors detected reactive lymph nodes in my soft tissue. If I do not take antibiotics, I become unwell and weak. It seems possible from looking at my radiology images that the soft tissue on the left side of my face is calcified. I haven’t been able to find out about this. Medical consultants have been unwilling to answer my questions, but I do wonder if this could be Lyme-related.
Doxycycline
Doxycycline is an antibiotic from the tetracycline class. It treats a broad spectrum of bacterial infections, including urinary tract infections, respiratory, ophthalmic, and soft tissue infections, cellulitis, and erysipelas. It is a first-line standard of treatment for adults with Lyme disease. Doxycycline treats all aspects of Lyme, including Lyme arthritis and Lyme carditis.
It is currently one of the antibiotics recommended for the treatment of Lyme Disease by the Infectious Diseases Society of America.
Medical News Today.
According to The UK’s National Institute for Health and Care Excellence (NICE), other antibiotics, which are effective treatment options for Lyme disease are; Azithromycin, Ceftriaxone, Cefotaxime, and Amoxicillin. In On Antibiotics, I explain that Doxycycline and Cefalexin are two of the most effective antibiotics for my facial pain, (aside from Linezolid). Doxycycline has been a mainstay medication for me over the last ten years. It subdues my symptoms, my energy levels increase, and I feel much better systemically, when I take it, but when I come off these tablets, my symptoms return.
Cephalexin is also a highly effective antibiotic for my facial pain. It soothes the localised symptoms most effectively, but it does not give me the same relief from the systemic feeling of malaise that Doxycycline provides. Cephalexin is from the same Cephalosporin family as both Ceftriaxone and Cefotaxime. These antibiotics are also effective standards of treatment for Lyme disease.
Reflection
Doxycycline and cephalexin are the most therapeutic antibiotics for my condition. They subdue my symptoms faster and more effectively than other medicines. They are both first-line standards of treatment for Lyme disease. Therefore, I wonder if it could be the latent Borrelia Burgdorferi bacteria in my system, or soft tissue, that is responding to these antibiotics.
Lyme Testing
The website IGeneX.com, explains that the most accurate Lyme tests are serological tests. ‘They do not detect the bacteria or its antigens, but they detect the antibodies, that an infected person produces in response to these antigens.’[3]
The most common Lyme Disease tests are, Enzyme-Linked Immunosorbent Assay (ELISA) and the Western Blot. Both show the reaction between antibodies in an infected person’s blood to the bacteria, causing Lyme Disease. To receive a diagnosis of Lyme disease, you must test positive with both Elisa and Western Blot blood tests. According to IGeneX.com, there are numerous strains of Lyme Borrelia. The Elisa and Western Blot tests can only detect one strain. These tests, therefore miss infections caused by other strains. IGeneX.com has created its own Immunoblot Lyme test to solve these problems. It is a ‘serological test, that increases specificity, so that more species of Lyme Borrelia are detected.’ [4]
A common problem with Lyme disease testing is that antibodies do not show up early on in the disease. If a patient tests too early, his/her body may not have produced enough antibodies to show up in a test. This can create a false-negative test. I had two Lyme disease tests in 2014. Both of my Lyme serums came back negative, but I had both of my Lyme disease tests done within the first three months of my illness. I do not know which Lyme disease tests the clinician used. However, if antibodies for Lyme disease do not show early on, I wonder if my Lyme test results could have been false negative ones.
If your blood test comes back negative, that does not necessarily mean you don’t have Lyme Disease.
Global Lyme Alliance
Chronicity of Symptoms
An infection lasting eleven years is extraordinary. It is possible that I have suffered with an infection for eleven years. I have been reading material about persistent symptoms in Lyme Disease, published by The John Hopkins Lyme Disease Research Centre.
The information available through this research centre explains that untreated Lyme disease will become a chronic, persistent infection in the majority of people. It says that people who develop chronic symptoms can be related both to the bacteria Burgdorferi and to the human immune response to the bacteria. Additionally, an infection may start in the skin at the site of the tick-bite but then enter the bloodstream and the lymphatic system. It can then affect certain tissues, including the neurological system. Delayed diagnosis can be a contributing factor in persistent symptoms, and Lyme disease can be complicated by other infections. If somebody gets more than one infection from a tick-bite, it can create a more complicated infection.
Rigorous evaluation is necessary to determine if Lyme disease could be the trigger for ongoing disease processes.
John Hopkins Lyme Disease Research Centre.
Post Treatment Lyme Disease
The John Hopkins Research Centre explains that Post-Training Lyme Disease (PTLD) is the term used to describe people who go on to have ongoing symptoms despite receiving treatment. The John Hopkins Centre states that the mechanisms behind PTLD could be autoimmunity and immune dysfunction, inflammation due to persistent bacteria, or left-over bacteria that have not been eradicated during treatment. Auto-immunity and immune dysfunction can also cause inflammation.
Final Reflections
Doxycycline and cephalexin are the two first-line treatment options for Lyme disease, both of which I respond positively to. I have suffered with the symptoms that are synonymous with the first 2 stages of Lyme disease. I have had raised infection markers for 11 years, particularly my neutrophils. This indicates the presence of a bacterial infection. It is so frustrating that the surgeon who removed my parotid tissue in 2018 did not culture it. If he had done so, we may have found out what this was. However, we still do not know what the bacteria is that is potentially causing my facial pain. I do wonder if the bacteria, Borrelia Burgdorferi is causing my illness. Or, if I have had Lyme disease, which has developed into a chronic infection?
The article What to Know About Doxycycline for Lyme Disease in Medical News Today, states that ‘due to Doxycycline being highly protein-bound in circulation, it is unlikely to sufficiently diffuse into the tissues affected by Lyme disease bacteria.’ I am curious if this could explain why the repeated doses of Doxycycline that I have taken over the years, has not penetrated my soft tissue sufficiently.
Was My Dentist Right?
Was my singing dentist right? Do I have chronic inflammation that is caused by bacteria that has not been eradicated? Have I got an immune dysfunction? Is my illness Lyme Disease, or a chronic infection that untreated Lyme Disease triggered?
I am seeking a physician or infectious diseases consultant who can diagnose and treat my chronic symptoms of eleven years, which seem most congruent with bacterial infection. If you are a physician with an interest in chronic infections and Lyme disease, please get in touch. You can email me at info@myfacialpain.com, find me on X @myfacialpain, or message me via the contact form on my website. Thank you.
References
[1] Caudwell, John; I have taken these words directly from the letter that John Caudwell wrote to the then, Health Secretary, Jeremy Hunt, in 2018.
[2] Mayo Clinic; Lyme Disease; Symptoms and Causes.
[3] IGeneX Inc; The Best Test for Lyme Disease
[4] IGeneX Inc; The Best Test for Lyme Disease
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