I have worked out that to heal you have to tread the fine line of understanding your illness without giving it enough time that it consumes you. This can be said of any health concern big or small. So for those wanting to learn more about Lyme Disease and those interested in the health journey, here is some more information.
Does it really matter if people don’t understand what causes Lyme Disease, or any disease for that matter?
Why do different people talk about different stages of Lyme Disease, and why is there rarely any consensus with treatment for disease?
Does it really matter what i read and where i read it when it comes to disease?
There are so many different questions surrounding Lyme Disease and it isn’t any wonder. It is a disease that is hard to test for, diagnosis is disagreed upon and there is no guaranteed treatment for its cure. I believe it is very important to distinguish between the plethora of information out there on the world wide web. You need to be informed but please realise that “textbook” information is very different to “lyme literate” information. So how do you distinguish between opinion versus fact and lyme literate versus textbook? The answer is not an easy one.
Slowly you learn which authors and websites to trust and the more you understand about Lyme Disease the more savvy you get. I have a background in health and medicine and I still find it hard. Below is my understanding of Lyme Disease and the stages it can be categorised into to help you along your way. This information can be used to apply to whatever illness or health concern you may have. All I can say is, make sure you have trusted sources of information – Google is a dangerous doctor!
What is Lyme Disease?
Lyme Disease is caused by a spiral shaped ‘spirochete’ bacteria called Borrelia burgdorferi (Bb), typically from an infected tick bite. There are varying opinions about how long the tick must be attached before it can transmit the bacteria, from 4 hours to 36 plus hours. Tick saliva accompanies the spirochete into the skin during the feeding process and contains substances that disrupt the immune response at the site of the bite, allowing a protective and (often un-noticeable) protective environment to be set up allowing the spirochete to establish the infection. Here the spirochetes multiply and migrate outward within the dermis of the skin, which is often what creates the characteristic EM rash. For some reason neutrophils fail to appear in the developing EM rash (which are essential in eliminating the invasion), allowing the bacteria to survive and spread throughout the body.
Days to weeks after Bb transmission, the spirochetes spread via the blood stream to joints, heart, nervous system and distant skin sites which may give rise to the symptoms of the disseminated stages of the disease. If untreated the bacteria may persist in the body for months and even years, despite the production of antibodies by the immune system. The spirochetes may avoid detection and or elimination by the immune response in many ways including decreasing their expressions of surface proteins that are targeted by antibodies, inactivating key immune components, changing their form to either L-shaped or cyst form, that either resemble normal bodily tissues or hide in the extracellular matrix. It is also believed if under threat from antibiotic, anti-microbial or immune response that the cyst form can clump together forming clusters protected by a biofilm which is very hard to break down or penetrate.
Diagnosis of late stage, chronic Lyme Disease is often complicated by multifactorial non-specific symptoms which is why Lyme Disease is known as the “great imitator”. Lyme Disease is often misdiagnosed as MS (Multiple Sclerosis), Parkinson’s Disease, RA (rheumatoid arthritis), CFS (chronic fatigue syndrome), Lupus, Fibromyalgia, Motor Neurone Disease, Crohn’s Disease, Alzheimers or other auto-immune and neuro-degenerative diseases.
What are the Stages of Lyme Disease?
From a lyme literate viewpoint there are various stages to Lyme Disease. Some experts use 3 categories and some use 4 as outlined below. You need to be aware when you are reading the literature what each stage represents as the symptoms, treatment options, and healing time will all be affected depending on the duration of the infection and how many complicating factors are present.
Early Localised
The days to weeks after transmission of Bb before the infection has become widespread in the body. This is the time that symptoms such as EM (erythema migrans) rash will be seen (only 15-50% of people get this rash depending on what research you read), flu like symptoms, fever, muscle soreness, general malaise and headaches may set in. Please note that some people may be totally asymptomatic.
Early Disseminated
Occurs weeks to months (but less than 1 year) after transmission of Bb bacteria, as the infection begins to spread through-out the body. This stage is usually marked with a change in symptoms and severity of symptoms as the infection invades. Symptoms may include skins rashes expanding, joint problems (swelling, redness and/or pain), early nervous system issues (such as pain and weakness especially in the arms and/or legs and face), muscle pain (especially in the large joints such as knees), and occasionally heart issues (usually palpitations, arrthymia, or slowing of the heartbeat that can cause dizziness). Pain and symptoms are often migratory.
Late Disseminated
Symptoms present more than 1 year after the initial transmission of the Bb infection (if known) and it has had time to spread right through-out the body. These patients are usually quite ill and often immune suppressed. Joint problems can resemble or even become arthritic, late nervous system issues (pain, weakness, numbness, headaches, migraines, memory loss, brain fog, loss of short term memory, stiff neck), emotional instability (anxiety, depression), heart issues (include tachycardia, arrhythmia, palpitations, heart pain), and can affect speech and movement if severe.
Chronic (Persistent/Recurrent)
This category consists of patients who have an active, persistent infection of prolonged duration and are significantly co-infected. Often these people get mis-diagnosed initially or not diagnosed at all so the infections have had a long time to invade the patient. These patients are often severely ill, chronically immune suppressed, have higher spirochette loads, have issues with detoxing and methylating and have significant amounts of opportunistic, concurrent and collateral infections. All of the symptoms from above are likely plus others like loss of libido, hypotension, persistent fatigue, blackouts/fainting and paresis if severe.
Based on John Barrascano’s 2008 clinical data and the latest published information, he believes to have chronic Lyme Disease, the following three criteria must be present:
- Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels).
- Have persistent major neurologic involvement (such as Encephalitis/Encephalopathy, Meningitis, etc.) or active arthritic manifestations (active synovitis).
- Still have active infection with B. burgdorferi (Bb), regardless of prior antibiotic therapy (if any).
