Archive for the ‘research’ Category

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.

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**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.

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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.

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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

New Research on Lyme Disease Surges

https://drroseann.com/lyme-disease-surges/

New Research on Lyme Disease Surges

©Roseann-Capanna-Hodge, LLC 2019 – Used With Permission

tick sitting on a leaf

New data analysis shows that not only are Lyme and Tick-borne Disease insurance claims and diagnosis are on the rise but that demographics are changing. A nonprofit organization working for national healthcare cost and insurance transparency, FAIR Health, analyzed data from 2007-2018 from over 30 billion private healthcare claims.

According to a FAIR Health analysis, Lyme disease claims in the U.S. increased 117 percent, from 0.027 percent of all private medical claims in 2007 to 0.058 percent in 2018.

Each year, according to the Centers for Disease Control and Prevention, approximately 300,000 Americans are diagnosed with Lyme disease. Lyme Disease is a bacterial infection caused by a spiral-shaped bacteria, Borrelia burgdorferi (Bb). It is usually transmitted by the bite of an infected tick, but many also believe spiders and other biting insects can pass it on. Symptoms of Lyme and Tick-borne Disease can be physical, such as pain, headaches, fever, neuropsychiatric such as rage, anxiety, ocd, or neurocognitive such as word retrieval and memory problems or attentional difficulties. Here are common symptoms:

Neurocognitive Tick-Borne Disease Symptoms

  • Short-term memory loss
  • Difficulty with working memory and executive functioning tasks
  • Executive functioning Impairment
  • Difficulty sequencing information
  • Verbal fluency difficulties – such as name or word retrieval
  • Slow processing (listening, oral, and with the written word)
  • “Brain Fog”
  • Sustained attention
  • Attentional switching
  • Problems with writing, math, and sustained reading/comprehension

Neuropsychiatric Tick-Borne Disease Symptoms

  • Irritability
  • Emotional dysregulation
  • Sudden rage/anger
  • Nightmares
  • Impulse control/hyperactivity
  • Conduct problems/oppositional behaviors
  • Easy tearfulness
  • Anxiety or Panic attacks
  • Depression
  • Withdrawn behaviors
  • Confusion
  • Mania
  • Obsessive Compulsive Disorder
  • Paranoia
  • Auditory/visual hallucinations
  • Sleep disturbances (too much or too little)
  • Sensory hyperarousal (typically auditory, visual, and touch)
  • Social skill deficits
  • PANS and Autism (it is estimated that 25% of those with Autism have PANS/PANDAS – O’Hara, N. (2014). Lyme Connection Mental Health Conference.

Other Physical Tick-Borne Disease Symptoms

  • Chronic Fatigue
  • Headaches
  • Nausea
  • Fibromyalgia
  • Bell’s Palsy
  • Nerve Pain
  • Arthritis symptoms
  • Joint pain/Chronic Pain
  • Multiple Sclerosis symptoms/Lupus
  • Seizures
  • Stomach problems (very common sign of Tick-Borne Disease in children)
  • Frequent urination
  • Constipation
  • Vestibular dysfunction/Visual issues
  • Cardiac problems or POTS (25% of those with cardiac problems have Lyme) Phillips, S. (2015). Lyme Connection – Leir Center Conference
  • Unusual infections
  • Low nutrient levels in the blood

Tick-borne disease symptoms may be acute, or they can wax and wane in a more long-term, chronic manner. Some symptoms appear immediately after a tick bite, but sometimes weeks, months or years pass before the disease presents making diagnosis and treatment even more complex. This waxing and waning of symptoms is confusing, leading to uncertainty regarding underlying cause. This makes one wonder if the tick bite or Lyme Disease one had months ago could be related to current symptoms. When in doubt, find a Lyme Disease specialist.

If your symptoms are more of a sudden onset, consider PANS/PANDAS and also seek out specialist care. You can find a PANS/PANDAS specialist on the national PANS/PANDAS organization, ASPIRE’s website.

Here are some key findings from the FAIR Health analysis:

  • The number one treatment sought by Lyme patients was psychological care 
  • There was a 121 percent increase in urban areas (Ticks aren’t just in rural areas because mice carry it)
  • The highest share of claims were in June (10.7 percent) and July (11 percent) but it is a year round disease
  • The five states with the most Lyme disease claims were in the Northeast (New Jersey, Connecticut, Rhode Island, North Carolina and Vermont) and one (North Carolina) was in the South
  • Individuals ages 51 to 60 were the highest grouping of diagnosed individuals
  • More men than women are diagnosed with Lyme but more insurance claims are submitted for women. The belief is that testing isn’t as accurate for women and that they are less likely to test positive even though they have the disease.
  • Not every state carries mandatory chronic Lyme Disease coverage (New York doesn’t)
  • Most diagnosed with Lyme are also diagnosed with “other” conditions too

Most common “other” diagnosed conditions for Lyme Patients in 2018:

  • General signs and symptoms (e.g., malaise and fatigue)
  • 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
  • Mood (affective) disorders

Are you a mental health provider looking for Lyme Disease and PANS/PANDAS provider training?

Lyme patients are seeking out mental health care because they are often told it is in their head.  Providers need training to support this influx of those afflicted with Lyme, tick-borne Disease and PANS/PANDAS with mental health and cognitive issues.  As an APA approved CE sponsor, we will be doing our part to educate and train mental health providers about Lyme and PANS/PANDAS in 2020. If you are interested in getting on our training list, email us at info@drroseann.com

Looking for Lyme Disease help or PANS/PANDAS help?

If you have Lyme or PANS/PANDAS and don’t know where to turn, then we can help address neuropsychiatric, neurocognitive, and pain symptoms with proven therapies that can support brain fog, anxiety, depression, and pain. Take a few minutes and speak with one of our client specialists or come to one of our free workshops. Your or your child’s health and future are worth it.

Call our center today to discuss how we can help you or your child with our clinically effective and natural therapies, such as neurofeedback or biofeedback, addressing Lyme, PANS/PANDAS, ADHD, anxiety, depression, and numerous other conditions.  We also offer counseling, executive functioning coachingand behavioral support for children and families, and parent coaching sessions with our staff psychotherapists. To set up an appointment for a consultation with Dr. Roseann, or to meet with one of our psychotherapists, call: 203.826.2999 or email: info@drroseann.com.

Live out of state? We work with children, individuals, and families through our intensive therapies program “The 360° Reboot® Program”.

Dr. Roseann is a Psychologist and Therapist and our center provides expert-level care for children, adults, and families from all over the US, supporting them with research-based and holistic therapies that are bridged with neuroscience. She is a Dr. Roseann is a Board Certified Neurofeedback (BCN) Practitioner, a Board Member of the Northeast Region Biofeedback Society (NRBS) and Epidemic Answers, Certified Integrative Medicine Mental Health Provider (CMHIMP) and an Amen Clinic Certified Brain Health Coach. She is also a member of The International Lyme Disease and Associated Disease Society (ILADS), The American Psychological Association (APA), National Association of School Psychologists (NASP), Connecticut Counseling Association (CCA), International OCD Foundation (IOCDF) International Society for Neurofeedback and Research (ISNR) and The Association of Applied Psychophysiology and Biofeedback (AAPB).

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For the link to the claims data as well as my take on it:  https://madisonarealymesupportgroup.com/2019/12/14/trends-and-patterns-in-lyme-disease-an-analysis-of-private-claims-data/

 

Category:

Lyme, research

Trends and Patterns in Lyme Disease: An Analysis of Private Claims Data

https://s3.amazonaws.com/media2.fairhealth.org/whitepaper/asset/Trends%20and%20Patterns%20in%20Lyme%20Disease%20-%20An%20Analysis%20of%20Private%20Claims%20Data%20-%20A%20FAIR%20Health%20White%20Paper.pdf Full paper found here

December, 2019

Trends and Patterns in Lyme Disease: An Analysis of Private Claims Data

A FAIR Health White Paper

Conclusion

Lyme disease is the nation’s predominant tick-borne disease, and it is growing. Claim lines for Lyme disease more than doubled as a percentage of all medical claim lines from 2007 to 2018.  Fair Health , an independent nonprofit organization dedicated to bringing transparency to healthcare costs and health insurance information found the following:

  • Lyme disease increase was more prominent in urban than rural areas.
  • Although Lyme disease is historically associated with the Northeast, North Carolina was one of the top five states in 2018 for Lyme disease claim lines as a percentage of all medical claim lines.
  • The summer months are the peak season for Lyme disease, but claim lines with Lyme disease diagnoses were submitted year round in 2018.
  • More claim lines with Lyme disease diagnoses were submitted for females than males in 2018.
  • In that year, the largest share of Lyme disease claim lines was held by individuals aged 51 to 60.
  • In 2014 and 2018, the laboratory and the office were the places of service most often used for services associated with Lyme disease patients. In 2018,the 10 most common “other diagnoses” received by patients who had been diagnosed with Lyme diseasewere all received by a greater percentage of Lyme disease patients than of the total patient population.
  • Among these were general signs and symptoms, dorsopathies (back pain), soft tissue disorders (including fibromyalgia) and other joint disorders.
  • Also in the top 10 other diagnoses for Lyme disease patients were anxiety and other nonpsychotic mental disorders, as well as mood (affective) disorders.

Much still remains unknown about Lyme disease. FAIR Health conducted this study to help fill the gap in knowledge and to provide a foundation to advance the work of other researchers.

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**Comment**

Very interesting paper with many informative graphs, although all the data is skewed and inaccurate.  I appreciate that the authors admit that many go on to develop chronic symptoms and that the reason(s) for this are contested.

One problem; however, are the international classification of disease codes they used for the entire thing: (ICD-9-CM and ICD-10-CM) diagnostic codes reported on claims in the FAIR Health dataset, FAIR Health examined claims that were indicative of Lyme disease (e.g., ICD-9-CM 088.81, Lyme disease, and ICD-10-CM A69.2, Lyme disease, unspecified) and other tick-borne diseases (e.g., ICD-9-CM 082.0, tick-borne spotted fevers [including Rocky Mountain spotted fever], and ICD-10-CM B60.0, babesiosis).

For more on this topic:  https://madisonarealymesupportgroup.com/2018/08/02/recognition-of-lyme-borreliosis-in-11th-international-classification-of-diseases/

Excerpt:

Lyme codes are largely based on science that is rife with conflicts of interests and is globally promoted by the Infectious Diseases Society of America (IDSA). The codes also ignore many of the serious, potentially fatal complications from the disease.

https://madisonarealymesupportgroup.com/2019/04/13/lyme-disease-corruption-in-our-healthcare-system/

https://madisonarealymesupportgroup.com/2019/01/19/ad-hoc-committees-historical-improvement-in-the-icd-codes-for-lyme/

While improvement is being made, these codes, when they exist at all, are far from perfect missing many patients.  This is not a new problem but a very old issue that has always been present.  Doctors can’t report things that don’t have a specific code.  Patients have been falling through the cracks for decades.

By going to the paper in the first link (above the title) you will see a pie chart showing the claims for the various tick-borne illnesses.  Please note that Bartonella didn’t even make the graph which clearly shows this chart is way off the mark.  Nearly every patient I know has Bartonella.  Why isn’t it presented?  I’ll bet there isn’t a code for it.  Also, testing is abysmal.  Only Lyme literate doctors are looking for it.

And lastly, North Carolina sticks out as one of the top 5 states in this paper for medical claims, yet this article stupidly states it’s rare there:  https://madisonarealymesupportgroup.com/2019/11/25/hundreds-of-people-impacted-by-tick-borne-illnesses-in-north-carolina/  People in the South have been battling this misnomer since the disease was discovered.

For a lengthier read on this claims data:  https://madisonarealymesupportgroup.com/2019/12/14/new-research-on-lyme-disease-surges/

 

 

 

 

Category:

Lyme, research