Welkom bij het Lymeforum

..Reviewers & Expert Contributors
..Rob Wüst, PhD – Assistant Professor of Physiology, Vrije Universiteit Amsterdam..

..Assessing & Treating Tick-Borne & Vector-Borne Illnesses
There are no drugs currently approved for treating IACIs caused by chronic tick and vector-borne illness. Some cases can be prevented by treating promptly after a suspected tick or mosquito bite..

..Recovery is not One-Size-Fits-All
Recovery is about helping individuals reclaim control over their lives and find ways to thrive, even in the presence of ongoing health challenges. Recovery is a multifaceted, deeply personal process that varies between individuals. It does not necessarily mean a complete cure or the elimination of symptoms. It encompasses the restoration or improvement of various aspects of life—including physical health, emotional well-being, social connections, and overall functionality..

..Recovery Does Not Equate to a Cure
The goal is to help patients move from a state of overwhelming symptoms to one where their condition is stabilized and more manageable. Recovery is still attainable in the sense of improving functionality, managing symptoms effectively, and adapting to a new normal..

..Recovery of Function
For some patients, recovery involves regaining the ability to participate in meaningful activities like work and hobbies. This requires medical interventions, physical therapy (PT), and energy management strategies (pacing). The goal is to help patients rebuild practical aspects of their lives and engage in what matters most. Recovery includes regaining strength, mobility, and endurance, approached carefully to prevent setbacks. For IACIs, pacing rest are essential to manage energy and avoid flares. Tailored exercise and medical therapy support improved function over time, with each small step contributing to a better quality of life..

..Outlook (Prognosis)
If diagnosed in the early stages, Lyme disease can be cured with antibiotics. Without treatment, complications involving the joints, heart, and nervous system can occur. But these symptoms are still treatable and curable.

In rare cases, a person keeps having symptoms that interfere with daily life after they have been treated with antibiotics. This is also known as post-Lyme disease syndrome. The cause of this syndrome is unknown.

Symptoms that occur after antibiotics are stopped may not be signs of active infection and may not respond to antibiotic treatment.

Possible Complications
Stage 3, or late disseminated, Lyme disease can cause long-term joint inflammation (Lyme arthritis) and heart rhythm problems. Brain and nervous system problems are also possible, and may include:
- Decreased concentration
- Memory disorders
- Nerve damage
- Numbness
- Pain
- Paralysis of the face muscles
- Sleep disorders
- Vision problems..

..and I sent David Putrino my Lyme course with hundreds of peer-reviewed references supporting how we get patients better. They were going to open up a Lyme clinic at Mt Sinai, my alma mater, and I told them to review what I do and not take 30 years to catch up with our knowledge of the disease. I told them to contact me if they had questions, and offered them the opportunity to be part of a RCT in the future. No word to date..

..This will be a pilot multi-arm clinical trial investigating the feasibility of Lumbrokinase (LK) as an intervention in three clinical cohorts:
- Long Covid (LC)
- Post-treatment Lyme disease syndrome (PTLDS)
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)..

..The purpose of this study is to test if the dietary supplement, lumbrokinase, may have an effect on the overall symptom burden of several chronic illnesses: Long COVID, Post-Treatment Lyme Disease Syndrome, or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome..

Proposed research classification criteria for Lyme disease in infection associated chronic illness studies

Reviews of clinical trials of previously treated Lyme disease indicate that studies may exclude over 90% of those who are screened (3, 15).

..Introduction
..In 2020, a clinical trials network for the study of Lyme and other tick-borne diseases (LTD-CTN) was established in the United States to facilitate clinical trials capable of identifying more effective treatments for patients with acute and persistent manifestations of Lyme and other tick-borne diseases (10)..

..4. Discussion
..Limitations of this classification system include the fact that these criteria were delineated for use in studies in North America; the criteria may need modifications for studies in Europe given their more diverse genospecies and somewhat different clinical features (e.g., Borrelial lymphocytoma) and different laboratory criteria for confirmation (23, 24). Second, laboratory tests for Lyme disease are imperfect with known limitations in sensitivity and specificity at different stages of illness (25). The focus on the Western blot over the last two decades has been problematic as the original two-tier assays relied upon antigens derived from whole-cell cultured B. burgdorferi; these assays did not include antigens expressed only in vivo and included antigens which may bind non-Borrelia antibodies due to epitope cross-reactivity (25). Testing for Lyme disease is rapidly evolving with newer tests providing better sensitivity and specificity (26). The Western blot is included in our classification system because potential study participants with persistent symptoms spanning a decade or more will present with tests conducted using both older and/or more novel technologies. For the purposes of research studies, our classification system includes suggestions for laboratory testing for each of the classification groups. To keep the Class 1 assay list at the end of Table 2 current, a link is provided at the end of the Classification table to assist researchers who wish to identify all Lyme disease assays that have been FDA cleared, including those newly approved..

..We conclude by emphasizing that this classification system is for research purposes, not for clinical application. Clinical decision-making regarding diagnostic and treatment decisions for patients with persistent symptoms is often challenging, as the symptom patterns although compatible with the diagnosis of Lyme disease are not specific, and the differential diagnosis is broad. Each patient needs to be evaluated as an individual, with attention to the diversity of inter-related factors that may contribute to the persistent symptoms and to the factors that may lead to false negative or false positive test results. In planning treatment strategies, the clinician needs to attend to the multiple possible mechanisms that may drive persistent symptoms, such as ongoing immune activation triggered by persistent infection or residual borrelia components, a dysregulated immune response (e.g., autoimmunity, inflammation), abnormally activated central nervous system networks, genetic vulnerability, environmental stressors, or the presence of other disorders or infections that may better explain the clinical picture (13). Given the diversity of individual clinical and immunologic responses to infection with Borrelia burgdorferi, some patients with Lyme disease will not meet the criteria for Groups 1–3..

..5. Conclusion
The proposed research classification system should improve the quality of clinical research by providing standardized case definitions for enrollment. This will promote and support research that includes the larger group of patients with sequelae from Lyme disease who until recently have been largely excluded from research studies, while still maintaining the scientific rigor required to draw clinically relevant conclusions..