Archive for the ‘Lyme’ Category

URGENT: Calling all Wisconsin Moms Who Gave Their Children Lyme/MSIDS Congenitally

Calling All Wisconsin Moms

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My daughter with KG, the apples of my eye

Moms, I’m asking you to consider helping the plight of patients in Wisconsin by stepping up to the plate and being willing to discuss your congenital Lyme/MSIDS case with the media for Lyme Awareness in May – here in Wisconsin.

They are interested specifically in congenital cases here in Wisconsin.  

I understand your hesitancy.  I understand your fears, but it is my firm believe that the ONLY way this mountain is every going to move is if we move it ourselves.  It’s going to take all of us working together.

I know you’ve already suffered so much watching your little ones suffer and I realize I’m asking you to rehash probably the most painful chapter of your life but the world needs to know.  Future moms need to know of the risks.  They need to hear from you – someone who’s gone or is going through it.

If you are willing, please contact me a.s.a.p. as this is all going down quickly.  We hope to get the story out before the Lyme Awareness event in May & the showing of “Under Our Skin.”  https://madisonarealymesupportgroup.com/2019/04/02/save-the-date-may-is-lyme-awareness-month-free-showing-of-under-our-skin-best-primer-on-lyme-disease/

Hopefully, with your help, many will attend this event to learn about this serious 21st century pandemic that you can contract in your backyard, congenitally, and very probably STD.

You are all heroines in my book.

Contact:  Lymecoordinator56@gmail.com

 

 

 

 

 

Category:

Activism, Lyme

Missing Links? Connect the Dots Between Lyme & Mental Health

https://www.enaturalawakenings.com/FAIR/April-2019/Missing-Links/

Missing Links?

Connect the Dots Between Lyme and Mental Health

BY ROSEANN CAPANNA-HODGE

Is it possible that a tiny little tick could assault the brain and body and cause lingering mental health issues in its wake? Yes. But even with decades of research that demonstrates a causal link between infectious disease and psychiatric issues, our healthcare system still isn’t appropriately identifying and treating those afflicted with Lyme disease. The real question is: why are we missing these individuals?

It isn’t an easy answer. Ultimately the complexity of how the disease impacts the brain and body and how uniquely the symptoms can present is a major factor, as some show symptoms right away and delete others not until months or years later. A lack of definitive diagnostics is another factor in accurate identification. Lastly, a lack of acceptance of the disease and not enough Lyme-literate medical and mental health professionals is a hurdle in both diagnosis and treatment.

Research on Lyme Disease and Mental Health

Since the early 1990s, research has demonstrated a clear link between psychiatric conditions and Lyme disease, and continues to signify a connection. In 2002, Tomáš Hájek, MD and colleagues found that 33 percent of screened psychiatric patients showed signs of an infection with the Lyme spirochete, Borrelia burgdorferi. Many mental health issues have been linked to tick-borne bacteria, including: depression, mood lability, bipolar disorder, irritability, anxiety, panic attacks, obsessive compulsive disorder, attention and executive functioning problems, memory issues, word finding difficulties and even psychosis.

A 2018 study by Shreya Doshi, MA and colleagues found that in patients with post-treatment Lyme symptoms, they had depression symptoms 8 to 45 percent of the time, and suicidal ideation was reported by 19.8 percent of these patients. In 2017, Dr. Rosalie Greenberg’s study found that 89 percent of participants diagnosed with Pediatric Bipolar Disorder tested positive to one or more pathogens, including tick-borne Babesia, Bartonella and Lyme, as well as Mycoplasma pneumoniae.

Even with many research studies over decades that demonstrate a causal link between infectious disease and mental health, the average person sees between five and seven doctors before a diagnosis of Lyme disease.

Lyme’s Effect on the Brain

When Lyme disease affects the brain, it is frequently referred to as Lyme neuroborreliosis or Lyme encephalopathy. Neuroborreliosis is an infection within the brain that can mimic virtually any type of encephalopathy or psychiatric disorder and is often compared to neurosyphilis. Both are caused by spirochetes, are multi-systemic and can affect a patient neurologically, producing cognitive dysfunction (memory, word finding, attention problems) and organic psychiatric illness (anxiety, depression, OCD).

The causative agent of Lyme disease, Borrelia burgdorferi, is a highly neurotropic organism that not only can produce neurologic disease, but also can exist dormant within the central nervous system (CNS) for long periods—even months or years. It is an evolved pathogen that uses several strategies to survive in both human and animal hosts, including using a screw-like mechanism that allows the bacteria to embed in the cell’s membrane.

There are multiple ways in which Lyme disease affects the brain and body and produces changes in the CNS that leads to mental health issues. The Lyme spirochete can burrow into the brain and nervous system, causing damage within the brain that leads to long-term issues. It causes brain swelling or inflammation that leads to psychiatric issues, causes immune reactions to the bacteria and impacts the endocrine system and hormones. Lyme can impact any area of the brain, including the emotional center of the brain: the limbic system. The bacteria in Lyme releases toxins in the brain and body, and these exotoxins are continuously released as waste material that may cause symptoms.

Why is Lyme Disease Hard to Identify?

Lyme disease is known as the great imitator because its symptoms mimic and overlap with so many other diseases that it can be hard to diagnose. It is a multi-systemic illness that can affect the CNS, causing a wide array of neurologic and psychiatric symptoms. In 1994, Fallon and Nields noted up to 40 percent of patients with Lyme disease develop neurologic involvement of either the peripheral or central nervous system.

Most people don’t realize that there are three stages of Lyme disease: early with dermatological symptoms, disseminated, and late stage. Late stage Lyme is when there is a dissemination of the bacteria to the CNS, which can occur within as little as two weeks. Lyme disease may lie dormant for months to years before symptoms of late infection emerge when something (head injury, toxins, EMF) causes the bacteria to cross the blood-brain barrier into the brain.

Patients with late stage Lyme disease present with a variety of neurological and psychiatric problems, ranging from mild to severe, which makes it very hard to connect to infectious disease. Most patients have no recollection of tick bite or falsely believe that a tick has to be engorged to carry bacteria and parasites that can be transmitted. Moreover, they are often told that their prior Lyme disease was “cured” and can’t be related to their current symptoms. These problems delay treatment and make it more likely to have late stage Lyme with a neurocognitive or neuropsychiatric impact.

Common Features of Psychiatric Issues Due to Lyme

Since tick-borne bacteria affects the CNS as noted previously, a multitude of symptoms can present. Afflicted individuals can show symptoms immediately or months later and can show a combination of physical, cognitive or psychiatric issues.

Common symptoms of tick-borne disease include: chronic fatigue, sleep problems, brain fog, cognitive and memory impairments, slowed cognitive processing, attention or executive functioning deficits, depression or mood dysregulation, anxiety, OCD, sensory sensitivity, irritability, anger and headaches.

It is important to note that one can have a pre-existing condition prior to Lyme disease that can exacerbate with infectious disease, which further complicates proper diagnosis and treatment. Lyme and tick-borne disease is co-morbid with ADHD, autism, sleep disorders, depression, anxiety disorder, pain and migraines, and can be a source of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

What Should You Do? 

If you or your child has a history of unexplained medical and mental health symptoms or haven’t gotten better with traditional therapies and psychotherapy, consider that infectious disease might be the source of your mental health issue. It is important to note that infectious disease takes many forms and that one may have a single illness, but it is more likely that one is affected by more than one infection, including strep, virus, other bacteria or environmental contaminants such as mold.

The first step is to find a Lyme-literate medical or mental health professional for proper diagnosis and treatment. The best way to do that is to seek a referral from a trusted friend or from Lyme organizations at the regional or national level, such as ILADS, your state Lyme organization or PANDAS.org. As many a patient who has taken this path can attest, you waste your time and may cause further damage to your health by going to an untrained professional. 

Dr. Roseann Capanna-Hodge is an integrative psychologist, certified neurofeedback practitioner and director of wellness centers in Ridgefield and Newtown. She is a member of ILADS and is a co-author of Brain Under Attack: A Resource Guide for Parents and Caregivers of Children with PANS, PANDAS, and Autoimmune Encephalitis for the nonprofit organization Epidemic Answers. Connect at 203-438-4848, Info@DrRoseann.com or DrRoseann.com. 

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**Comment**

So thankful for mental health professionals who understand what’s happening in Lyme-land.  Her advice about finding a Lyme literate professional was also spot on as you will waste a lot of money if you see mainstream medicine for this.

For more on what Lyme/MSIDS can do to the brain:  https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/

https://madisonarealymesupportgroup.com/?s=psychiatric+lyme

https://madisonarealymesupportgroup.com/2010/08/09/tom-grier-lyme-lecture-outline/

https://madisonarealymesupportgroup.com/2010/08/18/lyme-on-the-brain-part-2-by-tom-grier/

https://madisonarealymesupportgroup.com/2010/08/27/lyme-on-the-brain-by-tom-grier-part-3-a-lecture-notes/

https://madisonarealymesupportgroup.com/2010/08/29/lyme-on-the-brain-by-tom-grier-part-3-b-lecture-notes/

https://madisonarealymesupportgroup.com/2010/08/30/lyme-on-the-brain-by-tom-grier-part-4-lecture-notes/

https://madisonarealymesupportgroup.com/2019/02/16/lyme-is-all-in-your-head-a-wake-up-call-to-mental-health-professionals/

 

 

Category:

Lyme, Psychological Aspects, research

Ability of Stationary Phase Persister/Biofilm Microcolonies of Borrelia Burgdorferi to Cause More Severe Disease

https://globallymealliance.org/gla-pov-ability-stationary-phase-persister-biofilm-microcolonies-borrelia-burgdorferi-cause-severe-disease/?

Ability of Stationary Phase Persister/Biofilm Microcolonies of Borrelia burgdorferi to Cause More Severe Disease

borrelia-burgdorferi_mice

by Timothy Sellati, Ph.D., Chief Scientific Officer, GLA

Ying Zhang, Ph.D., a Global Lyme Alliance (GLA)-funded investigator, and his team at Johns Hopkins University just published a seminal study in the journal Discovery Medicine titled “Stationary phase persister/biofilm microcolony of Borrelia burgdorferi causes more severe disease in a mouse model of Lyme arthritis: Implications for understanding persistence, post-treatment Lyme disease syndrome (PTLDS), and treatment failure”.

Lyme disease patients, infected via tick bite with the bacterial spirochete B. burgdorferi, are routinely treated with two to four weeks of Doxycycline, Amoxicillin, or Cefuroxime, which is curative in many cases if treated at the onset of the infection. However, research shows that despite treatment, up to 20% of patients continue to suffer lingering symptoms of fatigue, pain, or joint and muscle aches, and neurocognitive manifestations that last 6 months or more.  This clinically-defined condition is known as post-treatment Lyme disease syndrome (PTLDS).  A long-standing mystery is whether development of PTLDS reflects

  1. persistence of B. burgdorferi in a patient’s tissues, consistent with chronic infection, or
  2. self-perpetuating inflammation caused by tissue damage triggered by the original infectious insult.

Zhang and colleagues published several influential papers over the past five years revealing a potential answer to this mystery. His lab showed that in vitro stationary phase (non-growing) cultures of B. burgdorferi contain different morphological variants. These bacterial variants include planktonic (free-swimming) spirochetal forms, round body forms, and aggregated microcolony (biofilm-like) forms, which have varying levels of persistence (e.g., the capacity to tolerate antibiotic exposure) in comparison to the log phase culture, which mainly consists of rapidly growing spirochetal forms with no or few persisters. B. burgdorferi develops into these morphological variants under stress conditions but their relevance to severe and persistent Lyme disease was unclear until the publication of this new study.

Zhang et al. report that biofilm-like microcolony (MC) and planktonic (free-swimming spirochete and round body; SP) variants found in stationary phase cultures were not only more tolerant of exposure to antibiotics but also caused more severe arthritis in mice than the log phase spirochetes (LOG). Importantly, the authors show that the murine infection caused by LOG could be eradicated by Ceftriaxone (CefT) whereas the persistent infection established with MC could not be eradicated by Doxycycline (Doxy), CefT, or Vancomycin (Van), or Doxy+CefT or Van+CefT, but could only be eradicated by the persister drug combination Daptomycin (Dapto)+Doxy+CefT.

This GLA-funded work establishes for the first time that:

Varying levels of persistence and the severity of disease pathology caused by infection with B. burgdorferi is linked to different morphological forms of the spirochete.

The following facts highlight the importance of this novel discovery. The number of patients developing PTLDS, or chronic Lyme, which is less clinically well-defined, is on the rise; a trend that is consistent with the rise in annual incidence of Lyme disease, which is ~427,000 cases. The absence of a full understanding of the cause(s) of PTLDS hampers efforts to effectively treat patients suffering with this syndrome. The authors demonstrated that the degree of persistence or persistent infection varied with different inoculae, where biofilm-like microcolony inoculae produced a more severe and persistent disease that could not be eradicated by the current Lyme antibiotics or even some two-drug combinations but could be eradicated by the persister drug combination Dapto+Doxy+CefT. In contrast, the disease induced by the log phase spirochetal forms is more readily eradicated by CefT. That the inclusion of persister drug Dapto, in combination with Doxy and CefT, is critical for eradicating the persistent infection established by persister inoculae validates the relevance of Dr. Zhang’s GLA-funded efforts to screen for drugs or drug combinations against stationary phase bacteria enriched in persisters in vitro, which were published by Feng et al. in 2014 and 2015 (see influential papers here).

Finally, the reported findings may not only provide a new understanding of PTLDS and perhaps chronic Lyme disease, but also will inform and accelerate development and testing of novel persister drug combination regimens that can more effectively cure persistent Lyme disease in the future. GLA’s goal in the near future will be to support human clinical trials to evaluate if the persister drug combination could more effectively treat or cure patients with PTLDS/chronic Lyme disease.

Pictured: Image of joint histopathology taken from a mouse infected with micro-colony/biofilm-like B. burgdorferi. Read Dr. Zhang’s full paper here.

timothy sellatiTimothy J. Sellati, PH.D. is Chief Scientific Officer at Global Lyme Alliance

As GLA’s Chief Scientific Officer, Dr. Sellati leads GLA’s research initiatives to accelerate the development of more effective methods of diagnosis and treatment of Lyme and other tick-borne diseasesmorphological variantshttps://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR  Metronidazole led to reduction of spirochetal structures by ~90% and round body forms by ~80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ~80%–90%.
In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%. Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonie

_________________

**Comment**

Great work by Zhang et al.!  Paper found here:  http://www.discoverymedicine.com/Jie-Feng/2019/03/persister-biofilm-microcolony-borrelia-burgdorferi-causes-severe-lyme-arthritis-in-mouse-model/

Unfortunately, they use the falsely skewed 10-20% percentages regarding the PTLDS group when microbiologist Holly Ahern argues convincingly that when ALL subgroups are added, it’s more like 60% that develop chronic/persistent symptoms:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  This is quite important and reveals the true state of affairs.

When I heard Dr. Zhang a few years back, he was working on this very concept, and please know the mycobacterium drugs have many side-effects that require close monitoring:  https://madisonarealymesupportgroup.com/2016/10/09/mycobacterium-drugs-for-ld/

The drug we used effectively throughout our treatment was Tinidazole which we pulsed throughout the entire time with 2-3 other antibiotics focusing on Bb’s different morphological variants as well as the various coinfections we had:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/  Dr. Eva Sapi found:

https://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR  Metronidazole led to reduction of spirochetal structures by ~90% and round body forms by ~80%. Tigecycline and tinidazole treatment reduced both spirochetal and round body forms by ~80%–90%.  In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%. Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonies.

 

 

 

 

Category:

Lyme, research, Treatment

Post Treatment Lyme Disease Syndrome: A Review of its Origin & its Consequences in the Socio-economic Sphere

https://www.ommegaonline.org/article-details/The-Post-Lyme-Disease-Treatment-Syndrome-(PTLDS)-a-review-of-its-origin-and-its-consequences-in-the-socio-economic-sphere./2407#.XKLo6qbumDo.linkedin

Mini-Review
Publish Date : 2019-03-04
Investigative Dermatology and Venereology Research

The Post-Lyme Disease Treatment Syndrome (PTLDS) a review of its origin and its consequences in the socio-economic sphere.

DR. JOSE LAPENTA
Lapenta J, Lapenta JM

Abstract

In the 90s patients treated for Lyme disease, caused by the bite’s tick, which transmit the spirochete Borrelia burgdorferi began to show a set of signs and symptoms that started months after concluded the treatment; they began to be reported by various scientists around the world and called Post Treatment Lyme Disease Syndrome (PTLDS), mainly characterized by cognitive deterioration, recurring headaches, fatigue, memory problems, musculoskeletal pain and many others. For some individuals the syndrome is clinically evident, while for others it has a psychosomatic element. In this research we will make a chronological description of post-Lyme syndrome, when it appeared, its symptoms and if it really deserves to be recognized by the World Health Organization (WHO) in the new ICD-11 codes. In addition to this aspect, we will clarify the meaning of this term and scope in medical and non medical practice. We will propose a management regimen for Lyme disease that could eliminate this bacterium that is causing so much deterioration in the affected population worldwide.

Main Objective

Make a chronological description of the Post Treatment Lyme Disease Syndrome (PTLDS) from its beginnings to the present, its clinical characteristics in all affected age groups regardless of sex, age, race and nationalities.

Secondary Objectives

  • Determine if Post Lyme Syndrome is a scientific reality that should be:
  • Considered within the new ICD-11 codes (International Classification of Diseases year 2018). ?
  • They are cognitive symptoms after the treatment of Lyme disease?
  • It’s a term clearly defined?
  • Lead to new alternative treatments for Lyme disease that would mainly cover the second, third and sequel of the disease.

Methods

The methods to used include analysis of all the databases and articles published in this regard, both for or against Lyme disease post treatment syndrome (PTLDS), using the National Library of Medicine of the USA. (Pubmed, Medline). Scientific and technical literature on Health in Latin America and the Caribbean (LILACS), and Europe (SCOPUS, EMBASE); make a chronological description of the post-treatment syndrome of Lyme disease from the first time it was mentioned in the scientific literature to the present day, highlighting the most relevant. The objective was to determine if this syndrome is a clinical reality, a psychosomatic disease, or a spectrum of conditions needing better defining. In addition to that, we will explain why this term is causing so much controversy today, and we will propose a new treatment regimen that should be considered by the world health authorities for the treatment of Lyme disease.

In the chronology of Post-Treatment Lyme Disease Syndrome (PTLDS) we will highlight the most relevant ones in the timeline, describing the term first, by the health authorities, and by the scientists concerned in the study of these clinical manifestations.

Introduction

Definition of the Term According to the CDC the definition of Lyme disease as:

“Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. Physicians sometimes describe patients who have non-specific symptoms (like fatigue, pain, and joint and muscle aches) after the treatment of Lyme disease as having Post-Treatment Lyme Disease Syndrome (PTLDS) or Post Lyme Disease Syndrome (PLDS). The cause of PTLDS “is not known.”

The CDC also dismisses the use of the term “Chronic Lyme Disease” (CLD), arguing that this term is confusing in the scientific community and has been used at times to describe symptoms in patients who “never had actual or past contact” with Borrelia Burgdorferi infection[1].

In summary: For the CDC, Post-treatment of Lyme disease syndrome (PTLDS) is of “unknown cause” and in addition the term “Chronic Lyme Disease” (CLD) should not be used.

Definition of the term According to the researchers: Lyme disease is caused by a bacterium Borrelia Burgorferi. Some patients show persistent neurological and organic symptoms (Post-Treatment Lyme Disease Syndrome (PTLDS), even after proper antibiotic therapy. The PTLDS symptoms include: cognitive changes: memory loss, verbal flexibility, association changes, speeds of thought, fatigue, musculoskeletal pain, weakness. It is thought that the cause of this is a chronic encephalopathy caused by the Borrelia burgdorferi when it reaches the brain[2,9-15].

Also many, perhaps most researchers recognize the term “Chronic Lyme Disease (CLD), widely described in the literature[2], and could be considered the same Post-Treatment Lyme Disease Syndrome (PTLDS). In addition, it is considered that in many cases the diagnosis was made late due to failures in the blood tests and resistance to the treatment with antibiotics.

In summary: for the scientific community, the term “post-treatment of Lyme disease syndrome (PTLDS)” is a reality and, in many cases, the cause of this is a chronic encephalopathy that causes the symptoms. The failure of the treatment with antibiotics, or the late establishment of it by misdiagnoses, could contribute to the symptomatology.

Chronologic Evolution

Decade from 1990 to 2000

In the year 1991 Krupp et al[3].; describes 15 patients treated for Lyme disease who complained of persistent cognitive difficulty after 6 to 7 months of treatment with antibiotic therapy; they were compared with 10 healthy controls. Post-Lyme patients showed a marked deterioration in cognitive tests: memory loss mainly in selective recognition. Memory deterioration did not correlate with anti-Borrelia burgdorferi antibodies titers in the blood or cerebrospinal fluid. No evidence of alterations in the magnetic resonances was found in the affected patients, also symptoms of depression. The authors conclude that it is an encephalopathy of unknown cause, where factors such as the sequelae of systemic infection by Borrelia and other toxic metabolic factors may be partly responsible for these symptoms[3].

Perhaps this represents the first study in Post-Treatment Lyme Disease Syndrome (PTLDS), or Post-Lyme Syndrome (PLS) because patients were evaluated months after receiving treatment and presented neurological damage symptomatology in this case chronic encephalopathy[3].

Note: In all the previous studies of Lyme disease the term Post-Lyme Treatment Syndrome (PLTDS) is not mentioned; they describe chronic manifestations as part of the second or late phase of Lyme disease, but not this term until 1991 where these researchers publish the study[2-3].

1995: After the description of Krupp et al., another scientists: Benke, et al.[4], in the year of 1995, published a study on 20 patients with Lyme Borreliosis previously diagnosed several years earlier, with an average of 4.3 years after the acute phase of Lyme, compared with a control group; This study revealed that patients with Lyme revealed deficits in verbal memory, mental flexibility, verbal associative functions and vocal articulation. The authors suggest that these findings are similar to those reported by Krupp et al. in 1991 and reaffirm that it is an encephalopathy associated with a long-term neuropsychological deficit that predominantly affects internal functions[4].

1996: One year later Bujak, et al. in 1996 published a study of 23 patients after had Lyme positively tested with ELISA, and previously treated with standard antibiotic regimens for the disease; neurocognitive impairment, persistent arthralgia, fatigue and memory loss were evaluated, finding the following facts: 7 patients (30 %) had fibromyalgia, 3(13 %) had chronic fatigue syndrome and 22 of 23, they complained about memory problems or decreased concentration. The scores for the attention scale, verbal memory, visual memory, sleep problems, mood swings and depression symptoms were higher for Post Lyme patients (PLS) than the normal.

The authors conclude that despite treatment with appropriate antibiotics for Lyme disease, sequelae mainly neurocognitive disorders, persistent arthralgias and fatigue can arise[5].

1997: In this year, Gaudino, et al. published a study to evaluate the differences and similarities between chronic fatigue syndrome (CFS) and post-Lyme syndrome (PLS) studying 25 patients with chronic fatigue syndrome (CFS) with exclusion criteria for Lyme disease, 56 healthy controls and 38 patients with Post Lyme syndrome (PLS), seropositive for Borrelia burgdorferi with positive criteria by the CDC for Lyme, who presented symptoms of severe fatigue 6 months after having complied with the treatment of antibiotics for Lyme disease. All the patients underwent structured psychiatric interviews, evaluating: attention tests, verbal memory, verbal fluency and motor speed.

Patients with chronic fatigue syndrome (CFS) and Post Lyme syndrome (PLS) were similar in several somatic symptoms and in the psychiatric profile. Patients with PLS had a worse performance on cognitive tests compared to healthy controls.

The authors conclude that despite the overlap of symptoms, patients with Post Lyme Syndrome (PLS) show greater cognitive deficits than patients with Chronic Fatigue Syndrome (CFS) compared to healthy controls. This fact became more evident among patients with PLS who lacked premorbid psychiatric disease[6].

1998: Bloom, et al. studied 5 children from the neurocognitive point of view after having been diagnosed with Lyme. They were treated for 2 to 4 weeks with intravenous ceftriaxone and evaluated comprehensively including detailed neuropsychiatric tests. The main objective of the study was to consider the possibility that Lyme disease after treatment left a sequel in children as well, as it had already been demonstrated in adults.

The 5 children were followed up for a period of 2 to 7 years after the treatment with antibiotic (ceftriaxone) and it was found that months after the treatment the children after having had the classic erythema migrans, cranial neuropathy or Lyme arthritis, developed behavioral changes, forgetfulness, decreased school performance, headache, fatigue and in two cases complex seizure disorders.

The five patients were found IgG antibodies against Borrelia burgdorferi in serum, intrathecal IgG antibodies and two of them pleocytosis of the Cerebro Spinal Fluid (CSF). Despite normal intellectual functioning, the five children had mild to moderate impairments in auditory or visual sequential processing.

The authors conclude that children can develop neurocognitive symptoms together with or after the classic manifestations of Lyme disease, and attribute it to an infectious or postinfectious encephalopathy related to Borrelia burgdorferi, confirming previous studies in adults[7].

In this study it was demonstrated that the Post-Treatment Syndrome of Lyme Disease (PTLDS) not only affects adults, but also children, and it is reaffirmed that the cause of it is an encephalopathy caused by the infection by the Borrelia burgdorferi.

1999: In the year of 1999 Elkins et al. published a work on 30 patients with Post Lyme Syndrome (PLS), who were surveyed to determine the neuropsychological status found as a fundamental aspect: the mood of PLS ​​participants was characterized by reduced levels of positive affect (PA) and typical levels of negative affect. Authors conclude that these symptoms are the most useful markers in patients with Post Lyme Syndrome (PLS)[8].

That same year Kaplan, et al. conducted a study where they claim that a small group of patients with Lyme develop encephalopathic symptoms months to years after diagnosis and treatment. The most common symptoms reported were fatigue, memory loss, sleep disorders and depression with a controversial etiology of the syndrome (PLS). The study was done comparing patients with Lyme and abnormal Cerebro Spinal Fluid (CSF), patients with Lyme and normal CSF and healthy controls. Both groups with Lyme showed memory deficits, but more accentuated and measurable in those with abnormal CSF; they also showed higher score in the depression in relation to healthy controls[9].

2000-2001: In 2001 Klempner, et al. conducted a study to test the efficacy of antibiotic treatment in Lyme-positive patients with persistent symptoms and a history of Lyme disease. Two groups of patients were studied: 78 seropositive patients and 51 seronegative patients for Borrelia burgdorferi. Patients received intravenous ceftriaxone, 2 g daily for 30 days, followed by oral doxycycline, 200 mg daily for 60 days, or corresponding oral and intravenous placebos. Each patient had well documented and treated Lyme disease, and had persistent musculoskeletal pain, or dysesthesia associated with fatigue. The authors conclude that there is a considerable deterioration in health-related quality of life among patients with persistent symptoms despite prior treatment for acute Lyme disease. In these two trials treatment with oral or intravenous antibiotics for 90 days did not improve symptoms more than placebo[10].

Morgen, et al. performed a brain Magnetic Resonance (MR) study in 27 patients with post-treatment Lyme disease syndrome to try to help identify the pathological mechanisms of the disease. Of the total, four (4) patients had focal neurological deficits, recurrent remitting disease and lesions in a typical electron microscopy (EM) distribution; 23 (85 %) patients presented non-focal symptoms, such as fatigue, subjective memory deficiencies and mood disorders. Twelve of these patients (44%) had normal magnetic resonance imaging (MRI); 10 (37 %) had mainly punctate and subcortical lesions, and one patient had multiple periventricular lesions.

The authors concluded that in a portion of patients with Lyme disease syndrome after treatment, hyperintensities of the white matter tend to occur in subcortical arteriolar watershed areas and are not-specific[11].

These last two studies show:

  • Many patients do not improve with long-term antibiotics after presenting chronic symptoms post Lyme and
  • It is demonstrated that there are obvious findings of the damage of the cerebral white matter in post-Lyme patient’s treatment, found by means of Magnetic Resonance Imaging (MRI).

This means that in the line of time and for the 90s and the beginning of the 2000s, a harsh reality is uncovered: Lyme disease is an illness that in many cases becomes chronic, months or years after symptoms begin, even after having disappeared with proper treatment.

The most frequent symptoms of Chronic Lyme Disease (CLD) or Post-Treatment Lyme Disease Syndrome (PTLDS):

2001-2018

Chronic Lyme Disease Symptoms:

  • Fatigue and lack of resistance
  • Nocturnal sweating
  • Pale, dark circle under the eyes
  • Abdominal pain
  • Diarrhea or constipation
  • Nausea
  • Cardiac anomalies: Lyme carditis
  • Orthopedic disorders: sensitivity, spasms and generalized muscle pain, rigidity and / or retarded motion
  • Respiratory infections of the superior tract and otitis
  • Arthritic disorders and painful joints
  • Neurological disorders: Headache Drowsiness, Loss of memory, Convulsions, Facial paralysis, Irritability, Bad mood
  • Suicidal thoughts; Anxiety; Anger or rage; Hallucinations
  • Eating disorders and humor changes: Cognitive speaking, Speech delay, Reading-writing problems, Problems of vocal articulation, Auditory / visual processing problems, Word selection problems, Dyslexia
  • Aggression or violence
  • Irritability
  • Emotional disorders
  • Depression
  • Hyperactivity
  • Photophobia
  • Gastroesophageal reflux with vomiting and coughing
  • Secondary eruptions
  • Other eruptions
  • Ocular problems: posterior cataracts, myopia, stigmatism, conjunctive erythema (Lyme eyes), optical nerve atrophy and / or uveitis
  • Sensitivity of skin and noise (hyperacuity)[12-45].

Probably there are more, the evidence is that there really are chronic symptoms in Lyme disease, with or without adequate treatment.

Conclusion

It is demonstrated that the chronic symptoms of Lyme disease are a reality, referred to as:

Chronic Lyme disease (CLD); or Syndrome- Post-treatment of Lyme disease (PTLDS).

As we said at the beginning, the CDC does not recognize the term Chronic Lyme Disease (CLD) because it is confusing[1].

With respect to this, we conclude that the CDC is wrong because data demonstrated that months or years after adequate treatments with antibiotics, patients can have the same or worse symptoms, which gives truth to the term: chronic Lyme disease (CLD).

On the other hand, the CDC alleges that the term Post-treatment of Lyme disease syndrome (PTLDS) is used by some scientists to define symptoms after the treatment of the disease and that it is due to “unknown cause”:

With regard to this aspect, the “so called” Post-treatment of Lyme disease syndrome (PTLDS), is the same chronic Lyme disease, consisting of:

  • Lyme positive patients who were never treated.
  • Positive Lyme patients who after treatment in acute phase relapsed months or years later, and reached the secondary or late stage with symptoms equal or more severe than at the beginning.

Patients who were misdiagnosed due to lack of effective diagnostic tests and reached the chronic stage. Today the CDC recognizes that its diagnostic tests are not 100% effective.

Well-diagnosed Lyme patients who never responded to the treatments recommended by the CDC.

  • We also disagree with the CDC about the definition of “unknown cause” when most studies and research show that it is a chronic encephalopathy produced by Borrelia burgdorferi, either by:
  • Its persistence in the bloodstream, cerebrospinal fluid and tissues due to resistance to treatment, under the well-known mechanism of “Biofilm”.
  • Generation of neurological damage due to the persistence of Borrelia burgdorferi in tissues that do not regenerate, such as the nerve cells.
  • An inflammatory process that remained in the nervous system and tissues after eliminating the causative agent.
In some patients, the coexistence of other diseases such as Erlichiosis, Babesiosis and Bartonellosis, which worsen the symptoms and obstruct the treatment.

We find with an unprotected society, the reality is that thousands of patients are discarded as positive Lyme after 4 months of treatment, because the treatment guidelines of the CDC say that in that time or less you will be cured, which we prove is false in a good proportion of patients.

In 2019 May, is the limit for the recognition of ICD-11 Codes of Lyme disease (International classification of diseases), and the WHO refuse to recognize them all, which will cause patients without coverage for their treatments. One of the unrecognized codes is congenital Lyme[46-54] .

The global community of patients with Lyme must organize well and adequately claim from health authorities such as the World Health Organization (WHO) to recognize the entire Lyme codes, and ensure coverage of their treatment at all levels.

The Syndrome post-treatment of Lyme disease (PTLDS), which is nothing more than the ”chronic symptoms” of the disease, is being used perversely to cover the reality of this disease, avoid coverage by health insurance, and tell patients: “you have nothing, go to a psychologist” … when their blood and brain are sailing in a sea of ​​Borrelias.

Comments

With regard to the proposal of new treatment guidelines for Lyme disease, we prefer to wait for what the health authorities at the world level will propose; then we will make a new publication about it.

Dr. José Lapenta Dermatologist

Dr. José M. Lapenta Md

Acknowledgments

To the Lyme world community that fights for its rights to be treated as real patients and not as psychiatric patients.

To my son J. Miguel MD, for his logistical support and co-author.

To all patients with Lyme especially Stacy Cellier Gomez whose story was quite motivating.

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_________________

For a list of 700 peer-reviewed articles on the persistence of Lyme:  https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILADS.pdf

Great article by microbiologist Holly Ahern where she takes the PTLDS moniker head-on showing that the actual number of those with persistent/chronic symptoms is more like 60%:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

Please spread the word on this as researchers seeing the falsely skewed low percentages of 10-20% aren’t going to see the relevance in studying this further.  If; however, they see that 60% of patients are affected chronically, that puts the whole matter into a different urgent category.  We need to point out CDC/NIH errors.

 

 

 

Category:

Lyme, research, Treatment

Be a Victor Not a Victim

https://globallymealliance.org/be-a-victor-not-a-victim/

by Jennifer Crystal

Many patients of tick-borne disease take years to get diagnosed. A lucky few ones find a bull’s-eye rash or an embedded tick, go to a physician who just happens to be Lyme literate, and get started on antibiotics right away. If they respond well to initial treatment, they can be cleared of Lyme in a month’s time.

Most patients are not this lucky. Even of those who do get treated right away, 10-20% go on to suffer after treatment. And for people who are not immediately treated, Lyme bacteria and quite possibly other co-infections the tick has introduced to ones body can spread through their bodies and brains for months, years, even decades before they are  accurately diagnosed. By the time of diagnosis, the person is often bedridden, plagued by exhaustion, joint aches, migraines, brain fog, and other neurological impairments. The unluckiest can suffer paralysis or schizophrenia.

When you’re a victim of unbearable physical and neurological suffering and you’re fighting to get a diagnosis, it can be the most natural thing in the world to also fall victim to a woe-is-me mentality. In some respects, you have to. Just to get people to take you seriously. If you’re like me, you might be used to putting on a good face even in the toughest times.

I’ve always been a glass-half-full person, an optimist fundamentally, but in order to get people to really understand what was going on under my mask of a smile, I had to complain. I was doing myself no favor by remaining stoic. Some might say I was throwing a pity party. But I needed to do so in order to be heard.

When I finally did get accurately diagnosed with Lyme and two of its co-infections, babesia, and ehrlichia, I wanted to shout from the rooftops, “Hey world, guess what? I have Lyme disease!” After eight years battling mystery symptoms, two years being utterly bedridden, and countless pointless doctors appointments where I was told, “Maybe it’s all in your head” or “You just need to exercise more,” I finally felt validated, I had a true physical disease—multiple diseases, in fact three of them—and the tests and clinical diagnoses to prove it.

Getting that validation can make you want to go back to all those naysayers and gleefully howl, “I told you so.” But many of those same people are the ones you will still need support from, whether it’s emotional or financial support from friends and family or medical support from physicians. For that reason, you have to take the moral high road. You have to extend understanding to those people, recognizing that they simply didn’t know enough about tick-borne diseases. Yet you have to educate them so they can meet you where you are and help you the manner best suited for your illness.

Inside, you may be very angry indeed. You may feel like a victim for all you’ve been through. When you start having Herxheimer reactions and start feeling worse than ever, you may even curse the tiny tick that did all this to you, the doctors who wouldn’t listen to you, the friends or family who didn’t advocate for you. You may curse the world for not understanding your suffering.

I say you may only to suggest that this could happen, but also to give you permission to have these feelings. It’s okay to be angry. It’s okay to be sad. It’s okay to be frustrated. It’s okay to mourn the months or years of your life that you’ve lost.

It’s not okay to stay in that place. It’s not okay to get stuck in your own anger. For then, you indeed become a victim, you become bitter. The tick, the disease(s) it carried, and the naysayers all win, because you’ve let them get the best of you. Please don’t do this. You are better than that.

You are a fighter. You deserve to regain your health. But your body cannot heal if you weigh it down with toxic emotions. You can have them, sure; that’s only natural. But at some point you must need to move beyond them. You must release yourself from them, so that your body has a real fighting chance to heal.

Don’t send your body the message that you’re a victim because it will believe you. Send your body the message that you are going to treat it kindly, be patient with it, and support it every step of the way on its journey to health.

Be a victor instead of a victim.

jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com. 

_________________
**Comment**
Great, great reminder.  You can have all those emotions but don’t stay in that place forever.  Rise above it.  Come to support group and vent.  That’s what we are here for.
One point that is important – way more than 10-20% of us have chronic symptoms.  Microbiologist Holly Ahern wrote an incredible piece pointing out it’s more like 60%: https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  This is a prime example of how this plague has been downplayed using statistics and wrong definitions.  
We need to issue well known as it is being used against patients. Researchers are taking the falsely skewed statistic of 10-20% and making this sound rare – when it is not.
Please get the word out.  This PTLDS definition must change.

 

 

 

Category:

Activism, Lyme, Psychological Aspects