In de VS heeft een zorgnetwork uit de regio New York recent een zeer interessant medisch handboek uitgegeven voor wat ze noemen Infection-Associated Chronic Illness (IACI), een paraplu begrip waar Lyme/tekenbeetinfecties, ME/CFS, Q koorts en inmiddels ook long covid allemaal onder vallen.
https://static1.squarespace.com/static/ ... pdf#page61
Infection-Associated Chronic Illness (IACI) manual
Re: Infection-Associated Chronic Illness (IACI) manual
@Guizen, dank je wel voor het delen van het interessante Handboek. Voor mij persoonlijk staat er veel bekende informatie in te lezen. En ook Rob Wüst; Bron viewtopic.php?f=5&t=2595&start=590#p31904 en Bron; viewtopic.php?f=5&t=2595&start=590#p31546 wordt genoemd. En wat mij opvalt is dat er helaas nog geen behandelingen zijn voor de genoemde IACIs (Long Covid, (chronische) Lyme en ME/CFS) die voor genezing kunnen zorgen. Het gaat helaas enkel om symptoombestrijding.
De behandeling van de ziekte van Lyme bij Mount Sinai New York (NY) is; Bron https://www.mountsinai.org/health-libra ... me-disease
Lees en leer meer; Bron viewtopic.php?f=38&t=2751&start=10#p31108
Ter verificatie:
- IGeneX Inc. (Amerika) heeft
géén ISO 15189 accreditatie van ANAB Amerika (ANSI National Accreditation Board); Bron https://anab.ansi.org/ En staat niet vermeld in de lijst ISO 15189 Medical Laboratory Accreditation; Bron https://anab.ansi.org/iso-15189-medical-labs en; Bron https://search.anab.org/
- En hetzelfde geldt voor Quest Diagnostics.
ILAC Mutual Recognition Arrangement (ILAC MRA); Bron https://ilac.org/ en de
geregistreerde leden ILAC MRA Signatory Search; Bron https://ilac.org/signatory-search/
- ANAB Amerika (ANSI National Accreditation Board) is lid van ILAC MRA; Bron https://ilac.org/signatory-detail/?id=79
10 oktober 2024: Mount Sinai Opens State-of-the-Art Center for Patients With Complex Conditions Including Lyme Disease and Long COVID; Bron https://www.mountsinai.org/about/newsro ... long-covid
En in herinnering:. geen samenwerking met R.H; Bron viewtopic.php?f=5&t=2595&start=450#p30409
..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..
De behandeling van de ziekte van Lyme bij Mount Sinai New York (NY) is; Bron https://www.mountsinai.org/health-libra ... me-disease
En de diagnosestelling gaat met de testen van de commerciële laboratoria Quest Diagnostics en IGeneX Inc. met CLIA licence...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..
Lees en leer meer; Bron viewtopic.php?f=38&t=2751&start=10#p31108
Ter verificatie:
- IGeneX Inc. (Amerika) heeft

- En hetzelfde geldt voor Quest Diagnostics.
ILAC Mutual Recognition Arrangement (ILAC MRA); Bron https://ilac.org/ en de

- ANAB Amerika (ANSI National Accreditation Board) is lid van ILAC MRA; Bron https://ilac.org/signatory-detail/?id=79
10 oktober 2024: Mount Sinai Opens State-of-the-Art Center for Patients With Complex Conditions Including Lyme Disease and Long COVID; Bron https://www.mountsinai.org/about/newsro ... long-covid
En in herinnering:. geen samenwerking met R.H; Bron viewtopic.php?f=5&t=2595&start=450#p30409
..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..
~ I may not be there yet, but I'm closer than I was yesterday ~
~ There is nothing more beautiful than a rainbow but it takes both rain and sunshine to make a rainbow ~
~ So encourage each other and build each other up - Positive connections ~
~ There is nothing more beautiful than a rainbow but it takes both rain and sunshine to make a rainbow ~
~ So encourage each other and build each other up - Positive connections ~
Re: Infection-Associated Chronic Illness (IACI) manual
@Guizen, er worden een paar Trails gestart; Bron https://www.coresinai.org/trials en Bron; https://www.mountsinai.org/clinical-tri ... e-syndrome
Pilot study - 'Lumbrokinase for Adults With Long Covid, Post-treatment Lyme Disease Syndrome, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome' by David Putrino (gebruik 12 weken); Bron https://www.coresinai.org/trials/lumbrokinase
Een Pilot study is een kleinschalige voorstudie die wordt uitgevoerd om de haalbaarheid, duur, kosten, bijwerkingen te evalueren en het onderzoeksontwerp te verbeteren voorafgaand aan de uitvoering van een grootschalig onderzoeksproject.
Pilot study - 'Lumbrokinase for Adults With Long Covid, Post-treatment Lyme Disease Syndrome, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome' by David Putrino (gebruik 12 weken); Bron https://www.coresinai.org/trials/lumbrokinase
Het is wachten op de publicatie van de resultaten van de Pilot study...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..
Een Pilot study is een kleinschalige voorstudie die wordt uitgevoerd om de haalbaarheid, duur, kosten, bijwerkingen te evalueren en het onderzoeksontwerp te verbeteren voorafgaand aan de uitvoering van een grootschalig onderzoeksproject.
~ I may not be there yet, but I'm closer than I was yesterday ~
~ There is nothing more beautiful than a rainbow but it takes both rain and sunshine to make a rainbow ~
~ So encourage each other and build each other up - Positive connections ~
~ There is nothing more beautiful than a rainbow but it takes both rain and sunshine to make a rainbow ~
~ So encourage each other and build each other up - Positive connections ~
- VerlorengezondheidM
- Berichten: 2596
- Lid geworden op: Za 19 Sep 2015, 23:59
- Locatie: Tilburg
- Contact:
Re: Infection-Associated Chronic Illness (IACI) manual
Proposed research classification criteria for Lyme disease in infection associated chronic illness studies
Brian A. Fallon,,
Brian A. Fallon1,2,3*Mara Kuvaldina,Mara Kuvaldina1,2Nevena ZubcevikNevena Zubcevik4Roberta DeBiasi,Roberta DeBiasi5,6Sarah B. Mulkey,Sarah B. Mulkey5,6Charles Chiu,Charles Chiu7,8Felicia ChowFelicia Chow9Kristopher PaolinoKristopher Paolino10Randy Lai,Randy Lai1,2David PutrinoDavid Putrino11Amy ProalAmy Proal12Martina PavlicovaMartina Pavlicova13John Aucott,John Aucott14,15
Reviews of clinical trials of previously treated Lyme disease indicate that studies may exclude over 90% of those who are screened (3, 15).
Bron: frontiersin.org, lees meer
Lyme Test Negative?
It Still May Be Lyme Disease!
Na 19 jaar onbehandeld rondlopen met een klinisch ziektebeeld: Chronische Lyme, Q-koorts, Bartonella, Babesia, Anaplasma, Chlamydia, Mycoplasma, Rickettsia, Yersinia, Coxsackie A16+ B, HHV-6.
It Still May Be Lyme Disease!
Na 19 jaar onbehandeld rondlopen met een klinisch ziektebeeld: Chronische Lyme, Q-koorts, Bartonella, Babesia, Anaplasma, Chlamydia, Mycoplasma, Rickettsia, Yersinia, Coxsackie A16+ B, HHV-6.
Re: Infection-Associated Chronic Illness (IACI) manual
Wie zijn de leden van The Lyme Clinical Trials Network (CTN)?; Bron https://www.lymectn.org/ en Bron; https://www.lymectn.org/Team.aspx Studies; Bron https://www.lymectn.org/Studies.aspx
..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..
~ I may not be there yet, but I'm closer than I was yesterday ~
~ There is nothing more beautiful than a rainbow but it takes both rain and sunshine to make a rainbow ~
~ So encourage each other and build each other up - Positive connections ~
~ There is nothing more beautiful than a rainbow but it takes both rain and sunshine to make a rainbow ~
~ So encourage each other and build each other up - Positive connections ~
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