THE POST-LYME DISEASE TREATMENT SYNDROME (PTLDS) A REVIEW OF ITS ORIGIN AND ITS CONSEQUENCES IN THE SOCIO-ECONOMIC SPHERE. !!!
The Post-Lyme Disease Treatment
Syndrome (PTLDS) a review of its origin and its consequences in the
socio-economic sphere.
Lapenta J1*, Lapenta JM2
1Lapenta, J. Medic
Surgeon, Specialty Dermatology. Member of the Ad Hoc committee for the Lyme
disease codes ICD-11 as an expert reviewer, University of Carabobo, Venezuela.
Ceo Dermagic Express.
2Lapenta, J.M. Medic Surgeon.
University of Carabobo. Diplomat in Body and Facial Aesthetics, Occupational Medicine, Prehospital Auxiliary, and Integral Ultrasound. Resident Doctor
Ambulatorio Del Norte Maracay Aragua State. Coo Dermagic Express.
*Corresponding
author: Lapenta
J, Medic Surgeon, Specialty Dermatology, 24 years of exercise. University of
Carabobo, Venezuela, Email: www.dermagicexpress.blogspot.com
ABSTRACT
In the 90s began to describe a set of signs and
symptoms in patients who after being diagnosed with Lyme disease, which is
caused by the bite of a tick, which transmits the spirochete Borrelia Burgdorferi, living agent that
causes all this symptomatology. These symptoms that were described months after
having concluded the treatment of the disease began to be reported by various
scientists around the world and were called Post Treatment Lyme Disease
Syndrome (PTLDS), mainly characterized by cognitive deterioration, recurring
headaches, fatigue, memory problems, musculoskeletal pain and many others. For
some organizations the syndrome is true, for others it is only a psychosomatic
disease squeal of Lyme disease, leaving out of treatment the thousands of
people who present these symptoms after treatment of Lyme today; there is now a
great controversy surrounding this issue. In this research we will make a
chronological description of this 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 whose deadline for it is May of 2,019.
In addition to this aspect, clarify the true meaning of this term and scope in
medical and non medical society; also propose a treatment for this 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 nations.
SECONDARY OBJECTIVES
• Determine if this Post Lyme Syndrome is a scientific
reality that should be:
• Considered within the new ICD-11 codes
(International Classification of Diseases year 2.018). ?
• It is a sequential psychosomatic disease after the
treatment of Lyme disease. ?
• It really exists as a clinical entity but its term
or definition is poorly implemented. ?
• Propose a new alternative treatment for Lyme disease
that would mainly cover the second, third and sequel of the same, a topic that
we are considering in the present investigation.
METHODS
The methods to be used are fundamentally based on
making an analysis of all the databases and articles published in this regard,
both for or against Lyme disease post treatment syndrome (PTLDS), fundamentally
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. Consider based
on the findings found the objectives we set, determine if this syndrome is a
reality, is a psychosomatic disease or its definition is poorly structured, describing
the term given to this syndrome by the CDC (Center for the control and
prevention of Diseases) and the one described by the scientists in their
investigations. In addition to that, we will explain why this term is causing
so much controversy today, before few months of the recognition of the new
ICD-11 codes for Lyme disease; and finally we will propose a new treatment that
should be considered by the world health authorities for the treatment of this
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 (CDC) and by the
scientists concerned to study these clinical manifestations.
INTRODUCTION
DEFINITION OF THE TERM
ACCORDING TO THE CDC
The CDC says textually: “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, one
of the entities perhaps the most important in the USA, this Post-treatment of
Lyme disease syndrome (PTLDS) is of "unknown cause" and in addition
he alleges that the term "Chronic Lyme Disease" (CLD) should not be
used, it does not exist, because most patients are "cured" with
adequate antibiotic therapy.
DEFINITION OF THE TERM
ACCORDING TO THE RESEARCHERS:
Lyme disease is
caused by a bacterium Borrelia Burgorferi.
Many patients, months or years after being properly diagnosed and treated with
antibiotic therapy, show persistent neurological and organic symptoms
(post-treatment Lyme disease syndrome (PTLDS), among which the following stand
out: cognitive alterations: memory loss, verbal flexibility, association, speed
of thought, fatigue, musculoskeletal pain, weakness and many others, being the
cause of this a chronic encephalopathy caused by the Borrelia burgdorferi when reach brain, because this bacterium as Treponema pallidum (syphilis) is highly
neurotropic what it means that it has an affinity for nerves and brain tissue.
[2]
Also many, perhaps
most researchers recognize the term "Chronic Lyme Disease (CLD), widely
described in the literature [2], and that would be the same post-treatment Lyme
disease syndrome (PTLDS). In addition, they consider 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 missdiagnoses, could contribute
in all that symptomatology; therefore, there was no "success in healing",
which contradicts what was stated by the CDC.
CHRONOLOGIC EVOLUTION
1.990-2.000
In the year 1.991 Krupp,
L.B, et al. [3], describes 15 patients treated for Lyme Borreliosis 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 burgoderferi antibodies in
blood or cerebrospinal fluid, nor was evidence found in magnetic resonances
made to affected patients or to symptoms of depression. The authors conclude
that it is an encephalopathy of unknown cause, where factors such as the sequel
of systemic infection by Borrelia and other toxic metabolic factors may be
partly responsible for these symptoms.
Perhaps this represents
the first study, about what later was and is called 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 Neuroborreliosis
this term is not mentioned, it is spoken of the chronic manifestations of the
disease as part of the second or late phase of the same, but not with the term
"post-treatment" until 1.991 where these researchers publish this
study. [2-3]
1.995
After the description of
Krupp et al., another scientists Benke, T. 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]
1.996
One year later Bujak, DI. Et al. in 1.996 published a study of 23 patients of 23 years of age 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 (almost 100%), 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 scales.
The authors conclude
that despite treatment with appropriate antibiotics for Lyme disease may be
sequels, mainly neurocognitive disorders, persistent arthralgias and fatigue.
[5]
1.997
In this year, Gaudino, E.A. 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]
1.998
Bloom, BJ et al. in 1998 they studied 5 children
from the neurocognitive point of view after having been diagnosed with Lyme
disease being seropositive for Borrelia
burgdorferi, finding intrathecal antibodies against the spirochete. 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 cerebrospinal
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], [3], [4].
In this study it was demonstrated that the post-treatment
syndrome of Lyme disease (PTLDS) not only affects adults, but also children can
be affected, and it is reaffirmed that the cause of it is an encephalopathy
caused by the infection of the Borrelia
burgdorferi.
1.999
In the year of 1.999 Elkins LE, 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 that: the
mood of PLS participants was characterized by reduced levels of positive
affect (PA) and typical levels of negative affect, concluding that the authors
that these symptoms are the most useful markers in patients with Post Lyme
Syndrome (PLS). [8]
That same year of 1,999 Kaplan RF, et al. conducted
a study where they claim that a small group of patients with Lyme develop
encephalopathic symptoms mild to moderate months to years after diagnosis and
treatment. The most common symptoms reported are 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 cerebrospinal
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 aspect
in relation to healthy controls. [9]
2.000-2.001
In the year 2001 Klemper MS, 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]
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]
This year of 2.001 Morgen K, 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 conclude 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 conclusively two facts:
1.) Many patients DO NOT IMPROVE with long-term antibiotics after presenting
chronic symptoms post Lyme and 2.) It is demonstrated that there are obvious
findings of the damage of the cerebral white matter in post-Lyme patients
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 having
started his symptoms, even after having disappeared also after proper treatment.
To not make it longer we will place you the most
frequent symptoms found and described by other qualified scientists in the almost
last 20 years about Chronic Lyme Disease (CLD) or post-treatment Lyme disease
syndrome (PTLDS):
2.001-2.018
CHRONIC LYME DISEASE SYMPTOMS:
1.) Fatigue and lack of resistance,
2.) Nocturnal sweating.
3.) Pale, dark circle under the eyes.
4.) Abdominal pain.
5.) Diarrhea or constipation.
6.) Nausea.
7.) Cardiac anomalies: Lyme carditis
8.) Orthopedic disorders: sensitivity, spasms and generalized muscle pain, rigidity and / or retarded motion.
9.) Respiratory infections of the superior tract and otitis.
10.) Arthritic disorders and painful joints.
11.) Neurological disorders:
A.) Headache.
B.) Drowsiness.
C.) Loss of memory.
D.) Convulsions.
E.) Facial paralysis
F.) Irritability.
G.) Bad mood.
12.) Suicidal thoughts.
13.) Anxiety.
14.) Anger or rage
15.) Hallutinations.
16.) Earning disorders and humor changes:
A-) Cognitive speaking.
B-) Speech delay.
C-) Reading-writing problems.
D.) Problems of vocal articulation.
E-) Auditory / visual processing problems.
F-) Word selection problems.
G-) Dyslexia.
17.) Aggression or violence.
18.) Irritability,
19.) Emotional disorders.
20.) Depression.
21.) Hyperactivity.
22.) Photophobia.
23.) Gastroesophageal reflux with vomiting and coughing.
24.) Secondary eruptions.
25.) Other eruptions.
26.) Ocular problems: posterior cataracts, myopia, stigmatism, conjunctive erythema
(Lyme eyes), optical nerve atrophy and / or uveitis.
27.) Sensitivity of skin and noise (hyperacuity).
28.) Demyelinization of the nervous system.[12-45]
28.) Demyelinization of the nervous system.[12-45]
Probably there are more, the evidence is that there really are chronic symptoms in Lyme disease, with or without adequate treatment. For no one is a secret of the large number of patients in North America, Europe and Asia who suffer from chronic Lyme. The bibliographical references presented in this research and the others that we have published are too strong. [2-45]
CONCLUSIONS
1.) It is demonstrated that the chronic symptoms of Lyme disease are a reality both in adults and childrens; some scientists call it:
A.) Chronic Lyme disease (CLD); others:
B.) 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 and alleges that the majority of patients are cured after an adequate treatment with antibiotics. [1]
• With respect to this, we conclude that the CDC is totally wrong because it is demonstrated that months or years after adequate treatments with antibiotics, the patients have the same or worse symptoms, which gives truth to the term: chronic Lyme disease (CLD), which they deny themselves.
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:
A.) Lyme positive patients who were never treated.
B.) 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.
C.) 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.
D.) Well-diagnosed Lyme patients who never responded to the treatments recommended by the CDC.
• We also conclude that the CDC is wrong 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".
• For the generation of neurological damage due to the persistence of Borrelia Burgdorferi in tissues that do not regenerate, such as the nerve cells.
• Or inflammatory processes that remained chronically in the nervous system and tissues after eliminating the causative agent, which is debatable today.
2.) The coexistence of other diseases such as Erlichiosis, Babesiosis and Bartonella, which at the end, what they do is worsen the symptoms and hinder the treatment.
3.) 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.
4.) In May is the limit for the recognition of ICD-11 CODES (International classification of diseases, year 2.018) for Lyme disease and some countries refuse to recognize them all, which would make the affected society even worse, I mean the code: Congenital Lyme. [46-51]
5.) 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 in all levels.
6.) 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 the patients: "you have nothing, go to a psychologist ... when your blood and brain are sailing in a sea of Borrelias.
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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