CHRONIC LYME DISEASE
The Pathogen
Chronic Lyme Disease is caused by a number of Borrelia species, but not necessarily all of them. Species Burgdorferi, Spielmanii, Afzelii and Garinii are the most common ones in Europe, at least Western Blots available test for them. The tick called Ixodes Ricinus is the main vector, but not all of them are carriers for Borrelia and there are conflicting opinions on the actual percentage. Contrary to common beliefs it is not guaranteed that a tick bite from a carrier would result in developing lyme disease every time (just consider how many tick bites rangers collect during their career), since the new environment – the human body – is considerably different to the tick’s digestive tract and the bacteria have to adapt fairly quickly. If this adaptation fails or takes too long and our immune system can mount an adequate response then the bacteria don’t survive this early phase.
The hallmark symptom for Lyme Disease is the bullseye rash (Erithema Migrans), however it doesn’t always appear or perhaps it’s not recognized because of its unusual shape especially at places like elbow or knee. Also, it usually disappears over time. So basically the lack of bullseye rash or its recognition can cause the Lyme disease to become chronic later (years or even decades!) due to omitted therapy.
It’s important to mention at this point that even the medical community is divided over the exact definition of chronic Lyme disease in almost every country around the world. Infectious doctors and non-infectiologist physicians – LLMD meaning Lyme Literate Medical Doctor – have a very different opinion about it. While infectiologists believe that Lyme disease (even if chronic) can be cured with a successful therapy, they would also admit that sometimes there are some strange residual symptoms for some of the patients that consider themselves not cured. This phenomenon is called Post-Treatment Lyme Disease Syndrome (PTLDS) and they are of the opinion that this is no longer caused by Borrelia. Unfortunately they typically can’t provide much guidance as to what other cause may be behind this symptomology.
LLMDs on the other hand think that Borrelia is responsible for post-treatment symptoms and blame therapy failure. They call it Chronic Lyme Disease and would treat it with antibiotics for much longer, even for years.
This creates a lot of confusion and uncertainty for the patients when they see doctors arguing with each other and would get conflicting diagnosis depending on which doctor they visited. Thankfully over the last few years the opinions form the two opposing sides of the medical community started to converge. Infectiologists have always said that „there must be some other reasons” for the PTLDS and LLMDs started to realize that „there must be some additional infections” driving the bus, the so-called co-infections you may get from a tick bite, Babesia and Bartonella namely. It gives real hope for a cure that as LLMDs turned their attention more and more towards addressing these co-infections, they started to see much better outcomes in the past few years.
There is also a semantic issue among the patient’s population as in layman’s term they would use Lyme Disease for both PTLDS and Chronic Lyme. As far as they are concerned they had a tick bite and even after treatment they are no longer healthy; since Lyme Disease is associated with tick bite then they would simply call it that way – period. All they know is that ticks can transmit bacteria that cause illness without really knowing what bacterium it is – and why should they know any better? This would be the job of medical professionals to differentiate and treat!
In order to eliminate any confusion in the world of Lyme-Complex we specify the bacteria that are in question. This article focuses on the official (medical) definition of Chronic Lyme Disease, sometimes also called as Late Lyme Disease or Disseminated Lyme Disease and will also use the term Lyme Borreliosis coined by Dr. Bozsik in Hungary in the ’90s to indicate we are discussing symptoms caused by the Borrelia. Lyme Borreliosis is a term accepted by both parties of the medical community and is used widely in the literature.
The Lyme Disease as in layman’s term that is not caused by Borrelia, but rather by Bartonella or Babesia is discussed in separate articles.
Symptoms
Given that the bacteria causing Lyme Borreliosis were identified more than 40 years ago and numerous clinical researches were conducted, therefore symptoms are now very well documented including those pertaining to Chronic (Late) Lyme Disease. Although we will discuss the chronic form in this article, nevertheless we must mention the hallmark symptom of the acute form which is the bullseye rash. This is important as the chronic phase is obviously preceded by an acute one and this single symptom is regarded as a very clear indication of the disease and warrants the immediate initiation of the treatment without any further lab testing. It is very unfortunate that the rash doesn’t always appear, thus exposure to Borrelia goes unnoticed and this is a recipe for the disease to become chronic.
Ticks can transmit other microbes as well such as the Encephalitis virus or TIBOLA that we don’t discuss now and researchers also suspect that it can be a vector for the so-called co-infections like Bartonella or Babesia – they are described in the articles pertaining to them.
The following symptoms have been observed by clinicians and researchers regarding Chronic Lyme Borreliosis:
Some of these can also occur in other diseases therefore it is important that a specialist doctor determines whether they can be related to Chronic Lyme Borreliosis. They are the ones who are knowledgeable about other diagnostic criteria that can confirm the diagnosis with a high degree of certainty. It is however worth to consider co-infections if Lyme Borrelisos is not confirmed.
Test and Diagnosis
It is important to shed light to the relationship between the presence of the bacteria and the actual disease. Lately a number of new test aiming at the direct detection of the microbe have been put out to the market that often lead to confusing results and false diagnosis in the absence of an appropriate interpretation. This is well illustrated in Dr. Bill Rawls’ book (Unlocking Lyme) by this example: The very first person with confirmed Borrelia exposure – confirmed by molecular PCR test – is actually a man who lived in the Alps 5000 years ago and his body was well preserved. This person was a hunter in his mid 40’s and examinations confirmed he had some mild newly formed arthritis in the knees. However, he was otherwise healthy and obviously wasn’t disabled as he roamed in the mountains. The cause of is his death was an arrow shot. This is a great example that the presence of a pathogen doesn’t necessarily mean the presence of the disease as it can be managed very well by the immune system and maintain a homeostasis. So the real objective is to determine the balance between the microbes and the immune system. The following lab methods are usually used for that:
ELISpot
It measure t-cell immune response and was a very promising new test in the early 2010 when labs started to commercialize it. This can be a really good test in some other clinical pictures such as latent and reactivated TBC infection so much so, that it actually became to gold standard test for this disease. It is unfortunately not so clear-cut for Borrelia. The test will signal if the pathogen is present by detecting active t-cells against it, however it appears it is unable to differentiate whether it is an active infections or just some residual immune response of a past infection. A research conducted by the Dutch National Institute for Public Health and the Environment together with Diakonessenhuis Hospital found that both active infections and past (and healed) infections will show a positive result, thus it just doesn’t correlate with the disease. It was only the negative test that proved to have a 100% negative predictive value, meaning it can tell if someone never encountered Borrelia with a high degree of confidence.
Serology: ELISA and Western Blot
Two-tier testing is actually the gold standard for Lyme Borreliosis. First a standard ELISA test is performed, however it is prone to false negativity, therefore if positive then it is followed by Western Blot or Immunoblot tests. Western Blot will test for multiple species of Borrelia and not just for the whole organism but also for its key proteins that they are made up of – these are called the bands. This methodology ensures less false positive results. IgM antibodies are the ’first responders’ that will appear initially and may persist up to 8 weeks from the tick bite. If a test shows IgM positivity only (no IgG) after the 8-week period then that’s a false positive result. Interestingly ILADS president (2019-2021) Dr. Mozayeni found that many of his patients with Chronic Borrelia infection actually exhibited a false positive IgM result for Borrelia.
If IgG bands are positive that can mean past or currently active infection, even if chronic. Based on research it is now understood that the production of IgG antibodies in Lyme disease increases over time, therefore in a long-lasting chronic phase one should see very strong IgG figures. Another diagnostic option is to compare two serology results taken say 3 months apart – in chronic infection figures should increase during this timeframe. If IgG figures do not increase over time then that’s just residual antibodies of a past and healed infections – in other words the immune system doesn’t have to produce more and more antibodies to keep the surviving bacteria in check and maintain balance and health.
In order to diagnose Neuroborreliosis (CNS involvement) spinal tap and examination of the liquor is required if symptoms warrant it. If the infection exists there then the liquor will contain antibodies and inflammatory markers will be elevated. To confirm the diagnosis the Western Blot done on the liquor and blood must be compared to each other: these two tests should display differing band patterns since intrachetalis antibodies are different to those found in serum.
Serology studies done appropriately exhibit a 100% negative predictive value in Chronic Lyme Borreliosis, meaning that the lack of antibodies can exclude the disease.
To summarize the following types of test are available:
Therapy Options
Options for therapy are fairly similar to those used for acute Lyme, but the duration can be 2 or 3 times longer. Antibiotics typically used: Amoxicillin, Doxyciclin, Cefuroxim or Zinnat. A classic therapy combination is Rocephin IV for 2 weeks followed immediately by oral Doxyciclin for another 4 weeks.
Typically a transient worsening of the symptoms – also called Jarisch-Herxheimer reaction – can occur initially, but that’s followed by marked improvements. Healing at the microbiological level can be controlled by follow up serology tests and therapy can be repeated if warranted.
Referencies
https://www.rivm.nl/en/news/new-test-has-no-added-value-in-lyme-disease-of-central-nervous-system
https://www.cdc.gov/mmwr/volumes/68/wr/mm6832a4.htm
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)64072-X/fulltext
https://pubmed.ncbi.nlm.nih.gov/15606643/
https://pubmed.ncbi.nlm.nih.gov/19362925/
https://pubmed.ncbi.nlm.nih.gov/23314562/
WRITTEN BY
Tamas Erdi
Disclaimer
This article reflects the author’s interpretation of the subject based on the references mentioned and Translational Medicine guidelines and is intended for informational purposes. It should not be taken as medical advice, always consult with your doctor for diagnosing and treating your condition.