Archive for the ‘Lyme’ Category

Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group

https://www.mdpi.com/2079-6382/8/4/269

Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group†

by Samuel Shor 1,*, Christine Green 2, Beatrice Szantyr 3, Steven Phillips 4, Kenneth Liegner 5,6,7, Joseph Burrascano, Jr. 8, Robert Bransfield 9 and Elizabeth L. Maloney 10
International Lyme and Associated Diseases Society.
Antibiotics 2019, 8(4), 269; https://doi.org/10.3390/antibiotics8040269 (registering DOI)
Received: 8 October 2019 / Revised: 9 December 2019 / Accepted: 11 December 2019 / Published: 16 December 2019
(This article belongs to the Special Issue Antibiotics Resistance of Borrelia)
Download PDF

Abstract

Objective: Chronic Lyme disease has been a poorly defined term and often dismissed as a fictitious entity. In this paper, the International Lyme and Associated Diseases Society (ILADS) provides its evidence-based definition of chronic Lyme disease. Definition: ILADS defines chronic Lyme disease (CLD) as a multisystem illness with a wide range of symptoms and/or signs that are either continuously or intermittently present for a minimum of six months. The illness is the result of an active and ongoing infection by any of several pathogenic members of the Borrelia burgdorferi sensu lato complex (Bbsl). The infection has variable latency periods and signs and symptoms may wax, wane and migrate. CLD has two subcategories, CLD, untreated (CLD-U) and CLD, previously treated (CLD-PT). The latter requires that CLD manifestations persist or recur following treatment and are present continuously or in a relapsing/remitting pattern for a duration of six months or more.
Methods: Systematic review of over 250 peer reviewed papers in the international literature to characterize the clinical spectrum of CLD-U and CLD-PT.
Conclusion: This evidence-based definition of chronic Lyme disease clarifies the term’s meaning and the literature review validates that chronic and ongoing Bbsl infections can result in chronic disease. Use of this CLD definition will promote a better understanding of the infection and facilitate future research of this infection.
This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited
Shor, S.; Green, C.; Szantyr, B.; Phillips, S.; Liegner, K.; Burrascano, J., Jr.; Bransfield, R.; Maloney, E.L. Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group. Antibiotics 2019, 8, 269.
_________________
**Comment**
Please give this to each and every doctor and nurse you know.  This is not conjecture.
Thousands of people are walking around with chronic Lyme disease and it’s not going away.

https://madisonarealymesupportgroup.com/2019/05/18/more-than-2-million-could-suffer-from-post-treatment-lyme-disease-syndrome-in-2010-study-says/

Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy  Over 700 peer-reviewed articles showing pathogen persistence.

It’s also congenital (spread from mother to baby):  https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/

https://madisonarealymesupportgroup.com/2018/02/26/transplacental-transmission-fetal-damage-with-lyme-disease/

https://madisonarealymesupportgroup.com/2018/05/24/new-berlin-mom-given-life-altering-lyme-disease-diagnoses-after-pregnancy/

https://madisonarealymesupportgroup.com/2018/11/11/gestational-lyme-other-tick-borne-diseases-dr-jones/

Dr. Lida Mattman, an expert on the cell wall deficient form of borrelia believes Lyme can be transmitted in many ways – including sexually:  https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

 

Category:

Lyme, Lyme Disease Treatment

Lyme Insurance Claims Make Huge Jump in U.S.

https://www.lymedisease.org/fair-health-lyme-claim-lines/

Dorothy Kupcha Leland
10 DEC 2019

TOUCHED BY LYME: Lyme insurance claims make huge jump in US

FAIR Health logo

FAIR Health is a nonprofit organization that manages the nation’s largest database of privately billed health insurance claims. It seeks to bring transparency to healthcare costs and health insurance information.

This week, FAIR Health brought clarity to several aspects of Lyme disease that until now have been mostly ignored. It accomplished this by publishing a white paper report called “Trends and Patterns in Lyme disease: An Analysis of Private Claims Data.”

The report grew out of an invitation from the federal Tick-Borne Disease Working Group. A subcommittee of the TBDWG asked FAIR Health to present information about insurance coverage for Lyme disease. Fair Health did so on October 18.

Now, the organization has compiled that information into a report that is available to the public.

According to the report, claim lines with the diagnosis of Lyme disease increased nationally 117%, between 2007 and 2018.

(These are not individual cases of Lyme disease. A “claim line” is a separate procedure or service listed on an insurance claim. So, if you had a blood test and an x-ray, that would be two claim lines.)

Among FAIR Health’s other findings

Predominance. Claim lines for Lyme disease accounted for 94 percent of claim lines for tick-borne diseases in 2018.

Geographic spread. In 2007, the five states with the highest number of claim lines with Lyme disease diagnoses as a percentage of all medical claim lines by state were all in the Northeast, but in 2018, one (North Carolina) was in the South.

Gender. In both rural and urban areas in 2018, more claim lines with Lyme disease diagnoses were submitted for females than males.

Other diagnoses. In 2018, the 10 most common “other diagnoses” found in patients who had been diagnosed with Lyme disease were, in order from most to least common, general signs and symptoms, dorsopathies (disorders of the spine), soft tissue disorders, other joint disorders, disorders of the thyroid gland, anxiety and other nonpsychotic mental disorders, osteoarthritis, skin and subcutaneous tissue symptoms, dermatitis and eczema, and mood (affective) disorders. All were more common in patients with Lyme disease than in all patients.

Age. In both rural and urban areas in 2018, individuals aged 51 to 60 held the largest share of the age distribution of claim lines with Lyme disease diagnoses. The age group 41-50 held the second largest share in both rural and urban areas.

Monthly distribution. In 2018, July was the month with the highest share of the distribution of claim lines for Lyme disease. The month with the lowest share was December.

Lots of interesting information in this 39-page report. Click here to read it: FAIR_Health_White_Paper

What about those absent from claim lines?

I feel compelled to point out that if your doctor refuses to acknowledge the possibility that you might have Lyme disease, you ‘re unlikely to show up in any Lyme-related claim lines. (We know this happens way too often.)

And unfortunately, medical politics keep many Lyme-treating physicians out of the insurance system entirely. So lots of would-be claim lines don’t ever get the chance to happen.

Thus, an analysis of insurance claims only gives part of the picture.

But it’s an important part that has remained hidden for too long. Kudos to FAIR Health for bringing it to light.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-President and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

__________________

For more:  https://madisonarealymesupportgroup.com/2019/12/14/trends-and-patterns-in-lyme-disease-an-analysis-of-private-claims-data/

https://madisonarealymesupportgroup.com/2019/12/14/new-research-on-lyme-disease-surges/

Category:

Lyme

General Symptom Questionnaire-30 (GSQ-30): A Brief Measure of Multi-System Symptom Burden in Lyme Disease

https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full

ORIGINAL RESEARCH ARTICLE
Front. Med., 06 December 2019 | https://doi.org/10.3389/fmed.2019.00283

The General Symptom Questionnaire-30 (GSQ-30): A Brief Measure of Multi-System Symptom Burden in Lyme Disease

Brian A. Fallon1,2*, Nevena Zubcevik3,4, Clair Bennett1,2, Shreya Doshi1,2, Alison W. Rebman5, Ronit Kishon1,2, James R. Moeller1,2, Nadlyne R. Octavien3 and John N. Aucott5

Introduction: The multi-system symptoms accompanying acute and post-treatment Lyme disease syndrome pose a challenge for time-limited assessment. The General Symptom Questionnaire (GSQ-30) was developed to fill the need for a brief patient-reported measure of multi-system symptom burden. In this study we assess the psychometric properties and sensitivity to change of the GSQ-30.

Materials and Methods: 342 adult participants comprised 4 diagnostic groups: Lyme disease (post-treatment Lyme disease syndrome, n = 124; erythema migrans, n = 94); depression, n = 36; traumatic brain injury, n = 51; healthy, n = 37. Participants were recruited from clinical research facilities in Massachusetts, Maryland, and New York. Validation measures for the GSQ-30 included the Patient Health Questionnaire-4 for depression and anxiety, visual analog scales for fatigue and pain, the Sheehan Disability Scale for functional impairment, and one global health question. To assess sensitivity to change, 53 patients with erythema migrans completed the GSQ-30 before treatment and 6 months after 3 weeks of treatment with doxycycline.

Results: The GSQ-30 demonstrated excellent internal consistency (Cronbach α = 0.95). The factor structure reflects four core domains: pain/fatigue, neuropsychiatric, neurologic, and viral-like symptoms. Symptom burden was significantly associated with depression (rs = 0.60), anxiety (rs = 0.55), pain (rs = 0.75), fatigue (rs = 0.77), functional impairment (rs = 0.79), and general health (rs = −0.58). The GSQ-30 detected significant change in symptom burden before and after antibiotic therapy; this change correlated with change in functional impairment. The GSQ-30 total score significantly differed for erythema migrans vs. three other groups (post-treatment Lyme disease syndrome, depression, healthy controls).

The GSQ-30 total scores for traumatic brain injury and depression were not significantly different from post-treatment Lyme disease syndrome.

Conclusions and Relevance: The GSQ-30 is a valid and reliable instrument to assess symptom burden among patients with acute and post-treatment Lyme disease syndrome and is sensitive in the detection of change after treatment among patients with erythema migrans. The GSQ-30 should prove useful in clinical and research settings to assess multi-system symptom burden and to monitor change over time. The GSQ-30 may also prove useful in future precision medicine studies as a clinical measure to correlate with disease-relevant biomarkers.

_______________

**Comment**

The good thing about this is it clearly shows that there is a significant change in symptom burden after antibiotic therapy.  In other words – the proof is in the pudding.  If you treat this properly, patients will improve.  This should shut the IDSA/CDC up, but it won’t.

Unfortunately they decided to keep the CDC/IDSA “Post Treatment Lyme Disease Syndrome” moniker rather than deal with persistent infection.  Until this issue is laid to rest, research will be skewed and authorities will not treat this appropriately.  There’s over 700-peer reviewed articles showing the persistence of Lyme disease: Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy

Another good thing this shows is the seriousness of symptoms that patients can be left with – the total scores aren’t significantly different from those with traumatic brain injury or depression. The symptoms are very, very real and very, very serious.

Please remember that those with the EM rash is highly variable:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Rashes-larger-blog-3

It is a bit of a head-scratcher as to why the authors felt compelled to do this study when a validated symptom questionnaire already exists:  https://madisonarealymesupportgroup.com/2017/09/05/empirical-validation-of-the-horowitz-questionnaire-for-suspected-lyme-disease/

https://madisonarealymesupportgroup.com/wp-content/uploads/2016/01/symptomlist.pdf

This symptom checklist is far more accurate than any serology testing at this point.  Doctors would be wise to utilize it.  There are also checklists for Babesia and Bartonella as well:

https://madisonarealymesupportgroup.com/2011/09/25/the-babesia-checklist-copyrighted-2011-james-schaller-md-mar-version-20/

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/

What we really need are checklists such as these for ALL tick-borne infections.  Then we desperately need doctor education.

Category:

Lyme, research, Testing

Dr. Neil Spector – Presentation on Therapeutic Strategies for Lyme Disease

 Approx. 50 Min.

State of the Art, Neil Spector, MD

Dr. Spector talks of collaborating with other groups to find new therapies for Lyme.  One of those is Argonne National Lab outside Chicago, which happens to have the largest genomic data base for prokaryotes.   borrelia (Lyme) and Bartonella.

_______________

For more:  https://madisonarealymesupportgroup.com/category/lyme-disease-treatment/ Dapsone and Disulfiram are both discussed within this link.

Spector wrote, “Gone in a Heartbeat: A Physician’s Search for True Healing” – a memoir about his battle with Lyme disease in which he required a heart transplant.

More by Spector:  https://madisonarealymesupportgroup.com/2019/04/25/tick-talk-a-conversation-about-lyme-dr-neil-spector/

 

 

 

Category:

Lyme, research, Treatment

Immunosuppressive Proteins Found in Tick Saliva – In Every Life Stage

https://www.ncbi.nlm.nih.gov/pubmed/31734217

2019 Nov 10:101332. doi: 10.1016/j.ttbdis.2019.101332. [Epub ahead of print]

Immunosuppressive effects of sialostatin L1 and L2 isolated from the taiga tick Ixodes persulcatus Schulze.

Sajiki Y1, Konnai S2, Ochi A1, Okagawa T1, Githaka N1, Isezaki M1, Yamada S1, Ito T3, Ando S4, Kawabata H4, Logullo C5, da Silva Vaz I Jr6, Maekawa N1, Murata S1, Ohashi K1.

Abstract

Tick saliva contains immunosuppressants which are important to obtain a blood meal and enhance the infectivity of tick-borne pathogens. In Japan, Ixodes persulcatus is a major vector for Lyme borreliosis pathogens, such as Borrelia garinii, as well as for those causing relapsing fever, such as B. miyamotoi. To date, little information is available on bioactive salivary molecules, produced by this tick. Thus, in this study, we identified two proteins, I. persulcatus derived sialostatin L1 (Ip-sL1) and sL2 (Ip-sL2), as orthologs of I. scapularis derived sL1 and sL2. cDNA clones of Ip-sL1 and Ip-sL2 shared a high identity with sequences of sL1 and sL2 isolated from the salivary glands of I. scapularis. Semi-quantitative PCR revealed that Ip-sL1 and Ip-sL2 were expressed in the salivary glands throughout the life of the tick. In addition, Ip-sL1 and Ip-sL2 were expressed even before the ticks started feeding, and their expression continued during blood feeding. Recombinant Ip-sL1 and Ip-sL2 were developed to characterize the proteins via biological and immunological analyses. These analyses revealed that both Ip-sL1 and Ip-sL2  had inhibitory effects on cathepsins L and S. Ip-sL1 and Ip-sL2 inhibited the production of IP-10, TNFα, and IL-6 by LPS-stimulated bone-marrow-derived dendritic cells (BMDCs). Additionally, Ip-sL1 significantly impaired BMDC maturation. Taken together, these results suggest that Ip-sL1 and Ip-sL2 confer immunosuppressive functions and appear to be involved in the transmission of pathogens by suppressing host immune responses, such as cytokine production and dendritic cell maturation. Therefore, further studies are warranted to investigate the immunosuppressive functions of Ip-sL1 and Ip-sL2 in detail to clarify their involvement in pathogen transmission via I. persulcatus.

_________________

For more:  https://madisonarealymesupportgroup.com/2019/08/14/what-tick-saliva-does-to-the-human-body/

https://madisonarealymesupportgroup.com/2018/01/20/potential-medical-adhesive-tick-saliva/

https://madisonarealymesupportgroup.com/2019/04/26/three-strains-of-borrelia-other-pathogens-found-in-salivary-glands-of-ixodes-ticks-suggesting-quicker-transmission-time/

https://madisonarealymesupportgroup.com/2018/12/28/relapsing-fever-spirochete-uniquely-adapted-to-highly-oxidative-salivary-glands-of-soft-bodied-tick/

https://madisonarealymesupportgroup.com/2019/07/29/how-quickly-can-an-attached-tick-make-you-sick/

https://madisonarealymesupportgroup.com/2019/11/19/to-milk-a-tick/

https://madisonarealymesupportgroup.com/2018/05/22/mosquito-spit-alone-may-significantly-alter-your-immune-system-for-days-after-a-bite/

Category:

Lyme, research, Testing, Tickborne Relapsing Fever, Ticks