Archive for the ‘Lyme’ Category

6 Top Tips to Avoid Holiday Stress

https://fibromapp.com/6-top-tips-to-avoid-holiday-season-stress-fibromyalgia-cfs-me/ (Full Article here)

6 Top Tips to Avoid Holiday Season Stress

The holiday season is once again upon us!  For those of us living with chronic pain, the holidays can mean something very different… Increased pain, flare-ups, stress, guilt and frustration to name just a few issues. So!  Here’s our top 6 tips on surviving the holidays when living with fibromyalgia, CFS/ME and other chronic pain conditions…

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For more:  https://madisonarealymesupportgroup.com/2019/11/16/holiday-stress-how-to-cope/

https://madisonarealymesupportgroup.com/2019/11/23/surviving-the-holidays-when-youre-chronically-ill/

https://madisonarealymesupportgroup.com/2019/12/05/a-holiday-letter-to-loved-ones-from-the-chronically-ill/

https://madisonarealymesupportgroup.com/2019/11/07/5-effects-of-stress-on-the-mind-and-body-10-tips-to-reduce-stress/

https://madisonarealymesupportgroup.com/2019/07/06/study-finds-listening-to-music-can-help-regulate-mood-during-a-stressful-situation/

 

 

 

 

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/

 

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/

 

 

 

 

Editorial: Newly Proposed Lyme Disease Guidelines Strike Out

https://danielcameronmd.com/proposed-lyme-disease-guidelines-strike-out/

EDITORIAL: NEWLY PROPOSED LYME DISEASE GUIDELINES STRIKE OUT

In 2000, the Infectious Diseases Society of America (IDSA) published the first set of guidelines for the treatment of Lyme disease. The guidelines were criticized for not recognizing the existence and severity of chronic Lyme disease. The second set of guidelines, released by IDSA in 2006, again failed to recognize chronic Lyme disease. [1] Now, it would appear that the next set of soon-to-be-released guidelines are in danger of striking out again and not recognizing the existence and severity of chronic Lyme disease.

There is growing evidence supporting the existence and severity of chronic manifestations of Lyme disease. Studies have found that at least 1 in 3 patients treated for Lyme disease remained ill years after treatment. Furthermore, 4 clinical trials sponsored by the National Institutes of Medicine (NIH) documented the existence and severity of chronic manifestations of Lyme disease.[2-6]

Treating Lyme disease, whether it’s in the chronic or early stages of illness, can be complex and challenging. Many of the Lyme disease patients in the NIH trials remained ill for years, despite treatment. In fact, researchers reported that chronic Lyme disease patients’ quality of life “was equivalent to that of patients with congestive heart failure; pain levels were similar to those of post-surgical patients and fatigue was on par with that seen in multiple sclerosis,” according to the International Lyme and Associated Diseases Society’s (ILADS) 2014 evidence-based guidelines.

Meanwhile, studies from Johns Hopkins indicated that patients diagnosed with “post-treatment Lyme disease syndrome (PTLDS)” continued to be ill following antibiotic treatment, even though they received antibiotic therapy early on. PTLDS patients in the study suffered severe fatigue, pain, cognitive complaints, and poor function.

“Studies using rodent and primate models have suggested that the persistence of bacteria and/or spirochetal antigens after antibiotic therapy may drive disease,” explains Aucott from Johns Hopkins University School of Medicine.  

IDSA’s proposed Lyme disease guidelines dismiss psychiatric, behavioral and neurodevelopmental manifestations due to Lyme disease. CLICK TO TWEETThe IDSA guideline committee is again at-bat. This time, the committee included representatives from a broad range of other organizations in developing the guidelines. Their proposed Lyme disease guidelines have accepted the existence and severity of just one chronic manifestation of Lyme disease. That being, post-treatment Lyme arthritis.

“In patients who have failed one course of oral antibiotics and one course of IV antibiotics, we suggest a referral to a rheumatologist or other trained specialist for consideration of the use of disease-modifying anti-rheumatic drugs (DMARDs), biologic agents, intra-articular steroids, or arthroscopic synovectomy,” states the latest IDSA guidelines draft from August 2019.

Proving causality: Lyme disease and chronic manifestations

Unfortunately, the proposed guidelines do not accept the existence and severity of other chronic manifestations of Lyme disease, particularly those involving psychiatric, behavioral or neurodevelopmental manifestations. The committee dismissed these chronic manifestations of Lyme disease as not causal. As the authors state:

  • “No studies suggest a convincing causal association between Lyme disease and any specific psychiatric conditions.”
  • “There are no data to support a causal relationship between tick-borne infections and childhood developmental delay or behavioral disorders (such as attention deficit hyperactivity disorder, autistic spectrum disorders, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), learning disabilities, or psychiatric disorders).”

The committee’s argument is arguably similar to the debate on whether smoking causes lung cancer.  “At that time, the results of epidemiological studies had shown associations of smoking with increased risk for lung cancer and other cancers, for coronary heart disease, and for ‘emphysema’ and ‘bronchitis,’” writes Glass from Johns Hopkins University in the Annual Review of Public Health. [15]

The tobacco industry questioned the evidence. “Even as the epidemiological evidence mounted, the tobacco industry implemented a wide-ranging strategy to question the credibility of epidemiological evidence generally and of the most pivotal studies specifically,” writes Glass.

They created and spread doubt, as Glass explains, “The manufacture and dissemination of doubt remain strategies today, widely used by stakeholders whose interests are potentially threatened by a causal finding.”

The Infectious Diseases Society of America appears to be using the causality argument to question the evidence and manufacture and disseminate doubt.
If this draft is finalized, the committee is arguably about to strike out again for both doctors in clinical practice and their patients.

Editor’s note: Dr. Cameron is the first author for the 2004 and 2014 International Lyme and Associated Diseases Society (ILADS) guidelines that accepted the existence and severity of chronic Lyme disease.

It has become clearer that patients initially identified as having chronic Lyme disease suffer from a broad range of presentations including:

  1. Lyme encephalopathy [8]
  2. Lyme neuropathy [8]
  3. Neuropsychiatric Lyme disease [9]
  4. Pediatric neuropsychiatric disorders – PANS [10]
  5. Lyme carditis [11]
  6. Autonomic dysfunction – POTS [12]
  7. Post-treatment Lyme fatigue – Post-Lyme disease [6]
  8. Neuropathic pain [13]
  9. Persistent symptoms after Lyme disease [5]
  10. Lyme disease with co-infections (e.g. Babesia) [14]
References:
  1. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
  2. Asch ES, Bujak DI, Weiss M, Peterson MG, Weinstein A. Lyme disease: an infectious and postinfectious syndrome. J Rheumatol, 21(3), 454-461 (1994).
  3. Shadick NA, Phillips CB, Logigian EL et al. The long-term clinical outcomes of Lyme disease. A population-based retrospective cohort study. Ann Intern Med, 121(8), 560-567 (1994).
  4. Fallon BA, Keilp JG, Corbera KM et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology, 70(13), 992-1003 (2008).
  5. Klempner MS, Hu LT, Evans J et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med, 345(2), 85-92 (2001).
  6. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
  7. Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.
  8. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
  9. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
  10. Sigra S, Hesselmark E, Bejerot S. Treatment of PANDAS and PANS: a systematic review. Neurosci Biobehav Rev. 2018;86:51-65.
  11. Muehlenbachs A, Bollweg BC, Schulz TJ, et al. Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. Am J Pathol. 2016.
  12. Kanjwal K, Karabin B, Kanjwal Y, Grubb BP. Postural orthostatic tachycardia syndrome following Lyme disease. Cardiology journal. 2011;18(1):63-66.
  13. Simons LE. Fear of pain in children and adolescents with neuropathic pain and complex regional pain syndrome. Pain. 2016;157 Suppl 1:S90-97.
  14. Krause PJ, Telford SR, 3rd, Spielman A, et al. Concurrent Lyme disease and babesiosis. Evidence for increased severity and duration of illness. Jama. 1996;275(21):1657-1660.
  15. Thomas A. Glass, Steven N. Goodman, Miguel A. Hernán, and Jonathan M. Samet. Causal Inference in Public Health. Annu Rev Public Health. 2013; 34: 61–75.

Bill Would Create Postage Stamp to Help Pay For More Lyme Disease Research

https://www.lymedisease.org/lyme-disease-postage-stamp/

Bill would create postage stamp to help pay for more Lyme disease research

Dec. 6, 2019