He criticised the path that Lyme disease research had taken over the past 30 years. He believed that Borrelia Burgdorferi was a persistent infection and that current serological testing methodologies needed to “start from scratch”, with people not knowing the results of their research beforehand.
Before entering this section, we would like to clarify that in this chapter, everything written corresponds to extracts from scientific studies published in Scientific Journals.
The texts in inverted commas are the translation of those extracts with their corresponding link.
The texts without inverted commas serve as an introduction to them.
ALCE cannot and does not wish to provide medical knowledge. It presents the most recent knowledge and research available and always refers to medical/scientific publications.
Lyme disease is a multisystemic and multisymptomatic inflammatory infection, a zoonotic disease whose spread is increasing rapidly in many parts of the world. It is the most common vector-borne disease in Europe and the United States and it is transmitted by ticks of the genus Ixodes.
European Parliament resolution on the fight against Lyme disease (borreliosis) (2018/2774 (RSP)
On November 15th, 2018, the European Parliament listed Lyme disease as a European health problem and passed a resolution in which it “calls on the Commission to draw up a European plan to plan to combat Lyme disease that is commensurate with the seriousness of this silent epidemic”. The resolution establishes the base for a joint effort by all Member States to agree on the diagnosis and treatments of the disease, as well as inviting them “to set up an information and awareness campaign to alert the population and all those concerned to the existence of Lyme disease, first and foremost in the regions most affected by its spread.”
Lyme disease was first described in the 70s, but it existed long before that.
In fact, Borrelia burgdorferi was found on Ötzi, a 5,500-year-old mummy discovered on the Alps in 1991, 3,210 meters high.
In the United States, there are 30,000 diagnosed patients, however: “Due to reporting requirements, only about 30,000 cases are reported to health authorities, which the CDC has acknowledged is likely less than 10 percent of actual cases,” Adams said. “There are 329,000 or more new cases of Lyme disease diagnosed each year in the U.S.”
In 2006, the WHO reported 85,000 cases in Europe alone. However, in addition to the increasing number of reported cases year by year, it is worth noting that not all countries require Lyme cases to be reported. This, on top of the fact that most cases are left undiagnosed due to unawareness, leaves no doubt that the actual case numbers are much higher.
The previously mentioned European Parliament Resolution of 2018 states that Lyme borreliosis is the most common zoonotic disease in Europe, with an estimated 650 000 – 850 000 cases in Europe..
2008 Nobel Prize winner in Medicine, Professor Luc Montagnier (co-discoverer of HIV) categorizes this disease as an epidemic because of its scope, claiming that its risks are not being taken seriously and that current diagnostic tests are ineffective.
Ticks need to feed on blood at every stage of their life cycle and do so on a wide variety of wild and household animals, including birds and reptiles. Transmission to humans can occur during visits to the vector’s habitat, when host birds or mammals and their associated ticks migrate to the urban environment, or when pets bring ticks into homes.
“The proportion of ticks carrying LB can vary widely and in one study of eleven regions of Switzerland between 9% and 47% of ticks were found to be infected. In a 2011 paper by Brown (unpublished data) presented at the 10th Tick Borne Disease conference hosted by Lyme Disease Action in the UK, tick populations were monitored over a number of years showing dramatic growth in population density with a threefold increase in feeding females from 1994 to 2004, and a 20-fold increase in Borrelia infected ticks from 1991 to 2009.”
“It is often claimed that there is a very low infection risk, or even no risk at all, if the tick is removed within the first 24/48 hours after the bite. Upon studying the literature on animal subjects, it has been found that transmission can actually occur in less than 16 hours. A minimum time of attachment necessary for transmission of infection has not yet been established. Various potential infection mechanisms have been suggested for the early transmission of spirochetes, based on their presence in different organs of the tick. For instance, studies have found that systemic infection and the presence of spirochetes in the salivary glands of ticks prior to feeding can cause rapid transmission.”
“Therefore, LB infection can never be excluded after a tick bite irrespective of the estimated duration of attachment time.”
“These results suggest that in cases where the spirochetes are present in the tick salivary glands, they can be injected into the host during the preparatory transfers of antihistamines and anticoagulants prior to the commencement of feeding, i.e., immediately after attachment of the tick to the host.”
“There is also evidence showing that virulence depends on the different tick genospecies, the different strains of Borrelia and whether the bacteria come from the midgut or the saliva of the tick.”
“Borrelia that cause Lyme disease are collectively known as Borrelia burgdorferi sensu lato. B. burgdorferi sensu lato currently includes at least 18 known species of Borrelia.”
“However, new species are continuously being discovered, so the number will probably rise. Three of the most important human pathogenic species of Borrelia are B. burgdorferi sensu stricto in the USA and Europe, and Borrelia afzelii and Borrelia garinii in Europe and Asia.”
“Below are some of the additional species of Lyme disease Borrelia discovered worldwide:
B. japónica, B. andersonii, B.lusitaniae, B. bissettii. B. spielmanii, B. californiensis, B. mayonii, B. lusitaniae”
These ticks can also transmit other bacteria and viruses (such as Babesia, Erlichia, Anaplasma, Bartonella etc.), which are known as co-infections A French study in The Ardennes showed that 50% of the ticks studied were coinfected with two to five pathogens.
It is common for Lyme patients to be treated only for Borrelia while left unchecked or untreated for the so-called co-infections, that is, other pathogens they might have been transmitted by the tick. The patient is therefore not able to recover as long as he is not free from these pathogens.
Lyme borreliosis (LB) is a multisystem disease that can affect many organs, including the heart, joints, central nervous system, and brain, and can cause a big array of symptoms, including extreme fatigue, flu-like symptoms, arthritis, peripheral neuropathy and cognitive dysfunction.
Lyme disease during pregnancy is another reason for controversy. The one thing everyone seems to agree on is that there are not enough studies on it.
“Due to the variability in the study size and study design, the lack of evidence in the epidemiological research does not rule out uncommon consequences of LD during pregnancy. There is some evidence to suggest that it is biologically plausible for B. burgdorferi to be vertically transmitted to the fetus, however these studies have been unable to define a characteristic pathological effect of B. burgdorferi infection in the fetus, thus there are significant knowledge gaps about the relationship of B. burgdorferi infection and adverse birth outcomes. Given the uncertainty around the impact of B. burgdorferi on the fetus and the consistent evidence suggesting fewer adverse birth outcomes if LD is promptly treated, it is recommended that physicians continue to remain thorough in their diagnosis and treatment of LD in pregnant women and that new research address the knowledge gaps identified in this review.”
“Gardner and other authors have conclusively shown that certain individuals infected with Borrelia acquired their disease gestationally. This is further supported by the finding of Borrelia in semen, and by the similarity to which Treponema transmission has been abundantly documented in the literature.”
“Borrelia b. has been found in the placenta and various fetal organs during autopsies (liver, spleen, kidney, bone marrow, brain, heart, adrenals), not only by various microscopic identification techniques but also in culture. But unlike the observations of congenital syphilis, the presence of the spirochete has never been associated with signs of inflammation, so its pathogenic role remains debatable.”
“We wish to emphasize that our article demonstrates culture detection of live Borrelia spirochetes in genital secretions from Lyme disease patients using a combination of light and darkfield microscopy, silver staining, immunostaining, molecular hybridization and PCR techniques.”
According to the CDC (Centers for Disease Control and Prevention), the spread of Lyme disease via blood transfusion is a possibility, since Borrelia bacteria “can live in the blood from a person with an active infection that is stored for donation.” Studies conducted in laboratories have proven this without a shadow of a doubt.
The WHO, in their Guidelines on Assessing Donor Suitability for Blood Donation, states the following: “the spirochete Borrelia burgdorferi […] can survive blood storage temperatures. Transfusion transmission is possible but has not been reported. Infected individuals […] are likely to be identified and excluded by careful donor selection.” Under Recommendations, they advise to “defer for 28 days following full recovery and completion of treatment, whichever is longer.”
As for Babesia, a possible Lyme co-infection, they advise to “defer permanently for individuals who have ever had a diagnosis of babesiosis.”
The Spanish Ministry of Health and Consumer Affairs, on its Basic Criteria for the Selection of Blood and Components Donors, states the following regarding Lyme: “it may be accepted after recovery.”
As for Babesia: “permanent exclusion. Can donate plasma for fractionation.”
However, for instance, the questionnaire of the Cordoba Center for Transfusions, Tissues and Cells of the Andalusian Health Service does not include either Lyme disease nor Babesiosis as a possible exclusion.
In many circles, there is concern that people with undetected Lyme and false negatives by standard Lyme tests donate blood, with the resulting risk of contagion via transfusion.
“A mouse study by Burgess et al. demonstrated transmission of the spirochete from infected to uninfected animals of the same sex”. “Another mouse study by Wright and Nielsen demonstrated B. burgdorferi transmission from infected males to uninfected females following intercourse.” “A third mouse study by Altaie et al. demonstrated spirochetal transmission from infected males to their offspring, presumably via maternal contact transmission.”
“He observed that sexually active patients had a marked propensity for antibiotic failure and speculated that re-infection occurred by intimate person-to-person contact.”
The size of the tick, depending on its life stage (nymph and adult larvae), varies from the size of a poppy seed to 1cm. During mating, the tick injects a complex mixture of bioactive products into the host, cytokine inhibitors to mediate the host’s immune response, anesthetics, and anticoagulants to facilitate blood absorption. Because of this, many people do not remember ever being bitten by a tick, even when the disease has been confirmed. It is very common for ticks to cling to wet and thin-skinned areas of the body such as the head, where they are almost impossible to see and, if very small, also to feel. Ticks are active all year round, their peak being during the warmer months (April to September).
Lyme disease has several phases. A person could potentially suffer the first phase only, jump to the second without ever going through the first, or even reach the third without having suffered any of the two previous ones.
FIRST PHASE: LOCALIZED EARLY ILLNES
Symptoms can begin hours, days, or even weeks after a tick bite. At this time, the infection has not yet spread throughout the body.
A skin rash called erythema migrans may appear. The CDC (Center for Disease Control and Prevention) estimates that only 60-80% of cases suffer from this rash.
“According to a study conducted in the Netherlands, only 45-55% of general practitioners recognized a typical case of erythema migrans as Lyme disease.”
In a study carried out by Dr. Navarro in collaboration with ALCE on 182 Lyme patients, only 15% of them presented erythema migrans.
Other flu-like symptoms may appear, such as fever, muscle aches, headache, overall malaise, etc. And, as explained above, a very characteristic rash on the skin called erythema migrans may also appear. In this case, the diagnosis should be quite easy, but unfortunately not all doctors know how to identify it.
This phase is treated with 21 days of antibiotics and it is believed to definitively cure the infection in virtually all cases. However, there is evidence, both in primates and mice, that the 21-day treatment does not always heal the infection completely.
PHASE TWO: EARLY DISSEMINATED LYME DISEASE
The early spread of Lyme can occur several weeks to months after a tick bite. Bacteria start to spread throughout the body. In addition to flu-like symptoms, this stage is often characterized by the proliferation of symptoms, such as:
Chills, fever, headaches, fatigue, pain, weakness or numbness in the arms and/or legs, vision alterations, heart issues such as palpitations, chest pain, facial paralysis (Bell’s palsy).
Erythema on the skin may appear.
STAGE THREE: LATE DISSEMINATED LYME DISEASE
If the disease is not treated early or effectively in the first two stages, late-spread Lyme disease appears weeks, months, or even years after the tick bite. By then, Lyme bacteria have spread throughout the body and many patients develop chronic arthritis, as well as further neurological and cardiac symptoms. Symptoms at this stage can include:
Arthritis in the joints or near the point of infection, severe headaches or migraines, vertigo, dizziness, migratory pains that come and go in the joints/tendons, stiff and sore neck, sleep trouble, insomnia, heart rhythm disturbances, brain fog, focus issues, numbness in the arms, legs, hands or feet, problems following conversations and processing information, severe fatigue and others.
Symptoms vary from person to person, depending on the co-infections they may have been transmitted by the tick, the amount of time they have been suffering from the disease, which organ or tissue has been affected, and their individual immune system.
“Borrelia pathogenesis could predispose individuals to polymicrobial infections because it can suppress, subvert, or modulate the host’s immune system to create a niche for colonization by other microbes”.
“Long-term exposure of the host immune system to spirochaetes and/or borrelial compounds may induce chronic autoimmune disease. The study of bacterium-host interactions has revealed a variety of proinflammatory and also immunomodulatory-immunosuppressive features caused by the pathogen.”
The IDSA (Infectious Disease Society of America) and the doctors who follow its guidelines do not recognize Lyme as a chronic disease. They call it Post-Treatment Lyme Disease Syndrome (PTLDS), not acknowledging its chronicity or persistence.
NOTE: From now on, we will call IDSA and the doctors who follow its guidelines and deny the complexing of this desease, the possible chronic Lyme desease and the thousands os sick people all over the World, we will call them “denialist” medicine for short.
However, there are many studies and publications that prove that it is indeed a disease that can become chronic.
Autopsy study of a Lyme patient treated with long-term antibiotics. Published on October 2019:
“We found significant pathological changes, including borrelial spirochetal clusters, in all of the organs using IHC combined with confocal microscopy.”
“The aggregates contained a well-established biofilm marker, alginate, on their surfaces, suggesting they are true biofilm.”
We found of large biofilm-like aggregates in all organs.”
As demonstrated in the following article (to which the images below belong), Borrelia b. is capable of forming biofilm, which makes the infection much more difficult to eradicate.
“In summary, we have found substantial evidence that Borrelia burgdorferi is capable of forming biofilm in vitro. Biofilm formation by Borrelia species might play an important role in their survival in diverse environmental conditions by providing refuge to individual cells.”
“Inside the biofilm, bacteria grow protected from the action of the antibodies, phagocytic cells and antimicrobial treatments.”
“The presence of infiltrating lymphocytes in the vicinity of B. burgdorferi biofilms suggests that the organism in biofilm form might trigger chronic inflammation.”
“A current matter of concern are polymicrobial infections and the increasing number of reported cases of co-infections in critically ill patients. Although B. burgdorferi continues to be the most transmitted tick-bite pathogen, co-infections with strains of Ehrlichia, Bartonella, and Babesia are being reported more and more in patients with Lyme disease, particularly those with chronic disease. Recent studies suggest that Lyme disease is more severe and resistant to treatment in coinfected patients, making detection and concurrent treatment of co-infections mandatory.”
Jenna Luché-Thayer, former Human Rights advisor to the United States Government and the United Nations and author of the book $lyme, recounts how she and her team gathered the information necessary for the WHO to increase the codes for Lyme disease. In her book, she condemns the irregular practices thanks to which patent owners, laboratories, insurance companies and private medical organizations maintain the current situation of this disease. Referring to the PTLDS, she explains:
“According to CDC’s website, ‘patients who have symptoms like fatigue, pain and joint and muscle aches after the treatment of Lyme disease have posttreatment Lyme disease syndrome (PTLDS) or post Lyme disease syndrome (PLDS)’”.
“Guess what? Neither PTLD$ nor PLDS is recognized in (WHO) ICD11, nor were these syndromes recognized in the previous versions of the ICD. Why won’t you find PTLD$ in the ICD11? Because this syndrome has never been validated as a diagnosis.”
“Furthermore, the theoretical basis for this syndrome is a psychosomatic condition which has been repudiated by the American Psychiatric Association and deleted from their guidance.”
A scientific publication by a German doctor explains, referring to Lyme, that “chronic diseases may require immunosuppressive treatment”.
Dr. Zhang’s studies on Lyme disease (J. Hopkins University) confirm the persistence of the infection despite antibiotic treatment.
Dr. Kim Lewis (Northeastern University) states: “I find it amazing that when you show up at the doctor’s office you are not told that there is a 10 to 20 percent chance that your life as you know it has ended”. He adds: “Nobody seems to be focusing on the next step: how to prevent the subsequent rise of the chronic condition.”
Studies by both researchers have shown that there are Borrelia bacteria that can remain inactive (persistent or latent) and are not killed by antibiotics. They have also shown that Lyme bacteria become inactive and alter their composition and protein form when exposed to antibiotics, thus growing back when treatment is stopped.
This is consistent with what many patients experience. The antibiotic treatment may make them feel discomfort at first, due to the toxic effect of the dying bacteria (Herxheime reaction), followed by improvement of symptoms. However, when antibiotics are stopped, symptoms return. The reason is now apparent: the bacteria that were inactive do not die, instead they become active and reproduce after treatment is finished.
This explains the reason behind the chronicity of this disease. Until an effective treatment capable of killing both active and inactive bacteria is found, these patients who relapse again and again cannot be cured.
According to an ongoing study approved by U.S. National Library of Medicine, “approximately 10-20% of patients experience ongoing symptoms despite having received standard antibiotic therapy for Lyme disease. Possible explanations for persistent symptoms include persistent infection and/or post-infectious causes.”
This study aims at testing the effectiveness of Disulfiram as treatment for cases showing such resistance, with two different durations of treatment.
Although the IDSA does not recognize chronic Lyme disease, in their response to an open lawsuit against them in the State of Texas they stated that they “knew it was a mistake to deny the existence of chronic Lyme disease “. The IDSA has already faced two Lyme-related lawsuits.
The WHO, which has recognized and included 13 new codes in its new classification of Lyme disease, does not recognize the PTLDS, meaning it does not recognize any type of Lyme-associated syndrome.
This disease is known as the great imitator, for it causes a wide variety of symptoms identical to those of many other diseases. This makes it even harder to diagnose, which unfortunately in some cases takes many years. Lyme can be misdiagnosed as Alzheimer’s, multiple sclerosis, ALS, schizophrenia and many other diseases. A well-known example is the case of Canadian singer and actor Kris Kristofferson, who for years was treated for Alzheimer’s until it was ultimately discovered that he suffered from Lyme disease instead. This case is well known because it concerns a celebrity, but there are countless anonymous cases like his.
Lyme disease is listed as a rare disease. A disease is considered rare when it only affects 5 people out of 10,000. According to official data from the European Union, Lyme disease currently affects 850,000 people in Europe, which represents 11% of the entire population. On top of this percentage, all unreported cases should also be taken into account (since it is not mandatory to report them in much of the EU, including Spain) as well as the cases that are left undiagnosed due to the numerous false negatives resulting from insensitive tests.
We can thus firmly claim that:
LYME DISEASE IS NOT A RARE DISEASE.
According to the WHO, population of Ixodes ricinus is increasing due to climate change. Ticks are now found all around the globe except Antarctica.
Migratory birds have been shown to participate in the enzootic maintenance of B. burgdorferi s.l., and their role in the distribution of infected ticks is well documented.
“Migratory birds of diverse species can play significant roles in the ecology and circulation of some arboviruses e.g….Borrelia burgdorferi sensu lato, ….”
A recent research project found ticks carrying Lyme disease in Richmond Park and Bushy Park in London.
How strict is the geographical association of the different species of B. burgdorferi s.l. and what defines the limitations of the worldwide distribution of the spirochete and therefore of the disease?
Field sampling has shown that a large percentage of ticks carry Borrelia, of which another, not insignificant, percentage are infested with other pathogens that can be transmitted to us.
The field samplings carried out have shown that a large percentage of ticks are Borrelia carriers, of which a non-negligible share is infested with other pathogens they would also transmit to us.
Obviously, people living in cities who are rarely in contact with animals or who do not frequent parks and gardens are unlikely to contract it through a tick.
The areas where one is most likely to be bitten by a tick are tall grass fields, forests, sides of trails, etc. Animals such as sheep, horses, dogs, etc, are also potential transmitters.
In northern Spain, there is a very real risk of contracting the disease. Surely many locals, farmers, hunters, etc., from Castilla, Extremadura and Andalusia among other regions have seen ticks out in the field or on animals, and have even been bitten. As a matter of fact, there are recorded Lyme sufferers in those regions.
In Cádiz, where reporting Lyme cases is mandatory, patients are being diagnosed. This begs the question: if there is Borrelia in Cádiz, why not in nearby Badajoz or Malaga?
It is therefore quite clear that anyone can potentially get this disease easily. Which is why:
In many European countries, Lyme-warning signs are put up in forests and other risk areas. At universities, forest rangers, farmers and other workers at higher risk of exposure are advised on this topic.
As it happens, in France everyone knows about Lyme disease. Pharmacies sell special hooks to extract the tick safely. In Spain, if you bring up Lyme, people do not know if you are talking about an exotic condiment, a videogame or who knows what. This dangerous lack of information makes it very unlikely for people to take the appropriate measures if bitten by a tick.
A vaccine was released on the market year ago, but it was withdrawn because it caused symptoms like the disease itself. Moreover, having already been bitten by a tick carrying Borrelia and suffering from the disease does not make you immune to future potential infections.
An official American publication states: “Effective and safe vaccines using recombinant outer surface protein A have been developed, but have not been propagated because of fears that autoimmunity might be induced.”
When going to the countryside, especially to higher-risk areas, it is advisable to wear light-colored clothing, pull up your socks over your pants and wear a hat. After each walk, hike or workday, take a shower and check your body for ticks, including your head. Do the same with any animals that were with you. There are anti-tick repellants with permethrin to spray on clothing (do not use on children under 2 years of age or pregnant women). Remember to check for any potential nymphs: they will be tiny, but no less dangerous.
To highlight the importance of prevention, we want to emphasize the fact that people do not always notice they have been bitten by a tick. In a study on 182 patients carried out by Dr. Navarro in collaboration with ALCE, only 41% were aware that they had been bitten.
The European Parliament, in the resolution below, “invites the Member States, which will be able to call on the Commission’s logistical support, to set up an information and awareness campaign to alert the population and all those concerned to the existence of Lyme disease, first and foremost in the regions most affected by its spread.”
If bitten by a tick, it must be removed very carefully. There are small and cheap hooks made specially for this purpose.
After removing it, we recommend that the tick be stored in a jar and frozen to be analyzed as soon as we start noticing any symptoms. Treatment can be then received as quickly as possible, whether for Borrelia or for any other pathogen that the tick might carry. The sooner the disease is treated, the bigger the chances of full recovery. This way we will make sure we stay healthy.
Our main goal is to make people aware of this risk. It is not about creating social alarm, but a conscious society where each individual is aware of the disease and can adopt preventive measures to avoid contracting it.
We are used to protecting ourselves from the sun, mosquitoes, and wearing appropriate clothing to avoid scratches or injure our feet while walking or hiking. We merely need to have the same attitude towards ticks.
All aspects of this disease are greatly controversial, the diagnosis being the first big obstacle Lyme sufferers face.
It should be bear in mind that it is very difficult to reach an accurate diagnosis based only on current tests. For one thing, there is a wide variety of Borrelia genospecies that can transmit the disease. Laboratory tests only test for one, usually B. Burgdorferi, so they will give a negative result if one is infected with any other of the Borrelia bacteria.
The diagnosis of Lyme disease faces two main problems: misdiagnosis and delayed diagnosis.
For Lyme disease to even be considered as a possible diagnosis, you need to live in prevalence areas. However, there are no studies that determine which areas apply in Spain, since only a small northern region has been studied. In addition, the fact that a potential patient might have traveled to risk areas either nationally or abroad is often ignored.
Nevertheless, the SEIMC (Spanish Society of Infectious Diseases and Clinical Microbiology) warns that “in areas where the seroprevalence of antibodies in the population is high (northern Spain), the positivity of a serological result should be evaluated with caution, excluding other diagnostic possibilities before making a definitive diagnosis.”
If we are to follow this, Lyme disease will not even be considered outside risk areas, and a positive result in risk areas would be likely questioned. Such a restrictive approach makes it extremely difficult to be diagnosed with Lyme disease despite having it. To make things worse, positive diagnoses are further called into question as a possible cross reaction if, for example, you have suffered from Mononucleosis and you test positive for Epstein-Bar.
Since there are no reliable diagnostic tests, the diagnosis should be made on the basis of the patient’s symptoms, supported by tests.
The European Parliament resolution recognizes that Lyme disease “is still underdiagnosed, in particular because of the difficulties encountered in the detection of symptoms and the absence of appropriate diagnostic tests.”
The CDC and IDSA recommendation of a “two-tier test” is official practice. The ELISA test is done first. If the ELISA is negative, no further testing is recommended. If the ELISA is positive or unclear, an Immunoblot is performed for confirmation.
A systematic meta-analysis of 20 years of published data showed an average sensitivity of only 35.4% in the acute stage and 64.5% in the convalescent stage, with an overall sensitivity of only 59.5%. As a reference, the sensitivity for the HIV/AIDS antibody test is over 99%.
“Lyme disease is caused by various species of Borrelia with a worldwide geographic distribution:”
In a 2018 study in a small area of Northern Spain, they found the following:
“B. miyamotoi was amplified in 4 specimens, and Borrelia burgdorferi sensu lato in 27 (8 Borrelia afzelii, 7 Borrelia garinii, 8 Borrelia lusitaniae, 3 Borrelia valaisiana and 1 B. burgdorferi sensu stricto).”
“B. miyamotoi should be considered in the differential diagnoses of patients with confirmed or suspected tick-bite in Spanish endemic areas for Lyme disease.”
It is essential to take into account, when performing diagnostic tests, all possible Borrelia and the different strains. Here eradicates one of the many difficulties in establishing a true diagnosis.
“Fewer than 50% of patients with Lyme disease recall being bitten by a tick, and most patients aren’t tested for Lyme until they display long term health problems.”
ELISA IgG e IgM
Blood serological test that looks for antibodies generated against a pathogen.
After the bite of an infested tick, the human body takes at least 20 days to produce antibodies to the bacteria, so a serological test before those 20 days will always be negative.
Lyme sufferers often have a Borrelia-induced immunodeficiency that limits antibody production.
Moreover, as explained before, there are different strains of Borrelia, which makes an accurate result even harder to achieve.
If ELISA is positive or unclear, the following test is performed:
Highly specific test, so it produces false positives, but very insensitive at the same time, so it can produce false negatives.
The Western Blot or Immunoblot detects antibodies against a set of preselected protein antigens. The reactivity of antibodies to these antigens is indicated by “bands”. An antigen is deemed present when a band has an intensity equal to or greater than that of a control band.
IgM antibodies develop early in the infection, during the acute phase, and IgG antibodies develop later in the disease.
Currently, Lyme disease surveillance criteria require at least 2 out of 3 IgM bands or 5 out of 10 IgG bands.
This test can be done by looking for any amount of protein. Each laboratory can measure what they deem necessary (3, 5, 15 etc.).
You can search for specific proteins and, again, each laboratory is free to choose which ones to look for.
Given the unreliability of both tests, many cases of Lyme go undiagnosed.
“Recent studies, in fact, report that the ELISA and Western blot can miss up to 60% of well-defined Lyme disease cases.”
Genetic enlargement technique.
“The slow-growing characteristics of B. burgdorferi in culture and the poor distribution of bacteria in blood and tissues are responsible for the low sensitivity of this test. The most successful cultures and PCR are done in samples from the edge of the rash (erythema migrans), a manifestation that does not require culture or PCR to confirm the diagnosis, provided the physician is able to identify it”.
“A positive result means that Lyme disease is present, but a negative result does not rule out the disease.”
“Patients in the late stage of Lyme or very early in the disease can be negative by serological tests and direct screening tests such as PCR and antigen detection. In this case, T-cell testing may be useful.”
“patients with poor immune system , or very early in the disease when antibodies to B. burgdorferi are absent, the Western Blot and Immunoblot tests will not yield any answers.”
T-lymphocyte activation technique.
Borrelia infections not only activate an immune response through the creation of antibodies, but also activate a T-lymphocyte response. The test shows the actual activity of Borrelia in both chronic and recent infections.
The EliSpot test can be useful when monitoring treatments.
This test should be done in Germany, where it is much more reliable. In Spain, it is not regarded for the “official” diagnosis. How can a medical test that is done in Germany be considered a fraud?
Unfortunately, when it comes to the diagnostic tests and treatments for this disease, we often run into a myriad of patent economic interests, insurance benefits, etc.
CD57 + CD3 CELL COUNT
NK (Natural Killer) cells that recognize and kill cells infected by bacteria.
Their count is below average especially in people with borreliosis, mainly in cases of chronic borreliosis and particularly in those who have severe neurological symptoms and persistent immune defects
Test by direct observation.
It is done by enlarging and observing a small sample of capillary blood under a microscope. When it comes to Lyme disease, you may be infected and still not see the bacteria in your blood.
Borrelia b. in dark field. Image of the blood of a chronic Lyme patient who was denied, by some physicians, the diagnosis of Lyme and later confirmed by Western Blot.
Even if the microscope shows spirochetes in the blood sample, it is impossible to be sure which kind it is, since the spirochete family includes several types of bacteria other than Borrelia b. – such as Treponema pallidum, that causes syphilis. There are several spirochetes known to cause disease in humans. Based on the symptoms, it should be possible to work out the relevant disease.
If spirochetes are seen, and the patient does not present symptoms of any other possible diseases caused by spirochetes but does present symptoms of Lyme, it seems only logical that a Lyme diagnosis would be undeniable. Still, the “official” medicine refuses to accept this test for diagnosis.
The “Recommendations on the diagnosis and treatment of infection by Borrelia burgdorferi. Lyme disease” by the SEIMC, this test is not deemed valid for diagnosis.
Considering that the dark field test is recommended and used for the diagnosis of other spirochetes such as Treponema pallidum or Leptospira, this refusal when it comes to Borrelia burgdorferi is shocking to say the least. Furthermore, the dark field test is also recommended and used for the diagnosis of relapsing fever, a disease caused by Borrelia recurrentis, Borrelia duttoni and others. Why is Borrelia burgdorferi any different?
Here are several links to studies on this topic, including a text by the CDC recommending the use of the dark field test for the diagnosis of Borrelia recurrentis.
Relapsing Fever; Borrelia recurrintis
“The diagnosis of TBRF may be based on direct microscopic observation of relapsing fever spirochetes using dark field microscopy or stained peripheral blood smears.”
Sífilis, Treponema pallidum:
Why, then, isn’t the dark field test recommended for the diagnosis of Borrelia burgdorferi?
Today, unfortunately, there is still no specific clinical test, or any other kind, for Lyme disease that is reliable enough and has the scientific consensus for the detection of this disease.
New, more reliable diagnostic tests are being investigated in different countries.
New diagnostic tests that seem more reliable are already on the market, but it is still too early to be sure and their use is still not widespread:
Phagotest PCR PCR is a test that looks for the specific Borrelia phages that are present in active infections and that feed on it.
Tick Plex is a serological test similar to ELISA but improved in that it detects round / persistent forms. It looks for antibodies to Borrelia and 7 other tick-borne pathogens.
Test ELISA C6. is a somewhat more reliable ELISA test.
“The blood serological tests for Lyme are much less reliable than the tests for tuberculosis and other potentially fatal infectious diseases. An HIV antibody can be detected in more than 99 percent of infected persons. The third generation of hepatitis C serology tests has a sensitivity of approximately 98 percent. The sensitivity of tuberculosis serological tests range from 1 to 60 percent and the specificity from 53 to 99 percent. The tuberculosis serological tests are widely recognized as unreliable.”
When it comes to diagnostic tests and treatments for this disease, we find ourselves under a pile of economic interests, patents, insurance profits, etc.
Given the above-mentioned unreliability of the tests carried out by the “denialist” medicine, Spanish Lyme patients have no choice but to undergo tests abroad in hopes to find out if they, in fact, have Lyme disease and seek treatment if needed.
These tests are not paid for by Social Security or any private health insurance.
The EliSpot is usually done in Germany and the Immunblot / Western blot in the United States. The dark field test is done in Spain. Prices range from 150 to 350 euro.
Unfortunately, not much. Spain, as most countries, follows the guidelines of the IDSA, a private US company that establishes the guidelines for the treatment of infectious diseases. As Jenna Luché-Thayer claims in her book $Lyme, the IDSA profits greatly from (ineffective) diagnostic patents for Lyme. In the last 18 years, despite new discoveries and advances, IDSA has not changed its protocol for the diagnosis or treatment of Lyme disease. “Nothing has changed other than the number of disabled and deceased people”, states Jenna Luché-Thayer in her book.
In Spain, Lyme disease is barely investigated.
In addition, medical schools continue to teach the same as decades ago, disregarding any research advances and new knowledge.
We found the following statement on Lyme in a study book for Spanish hospital residents: “Lyme disease is caused by the spirochete Borrelia Burgdorferi. The vector that transmits this disease is the tick of the genus Ixodes. The disease is characterized by the presence of: an initial skin rash in the area of the bite… “
The rash they refer to (erythema migrans) does not always occur and, when it does, it is not always identified by doctors. Indeed, according to the Mayo Clinic, “erythema migrans is one of the hallmarks of Lyme disease, although not all people with this disease develop this rash.”
Even in France, which is far ahead of Spain with a specific national plan for this disease, Lyme continues to be taught while disregarding all the current scientific advances, as reported by Dr. Perronne (Professor of Infectious and Tropical Diseases at the School of Medicine in the University of Versailles, Head of the Department of Infectious and Tropical Diseases at Garches Hospital and President of the French Federation against Diseases Transmitted by Ticks): “We regret that university professors neglect or do not read the published scientific data that support, on the one hand, the existence of a chronic form of Lyme disease and, on the other, the current deficiencies of biological diagnosis.”
So, what can we expect from the Spanish Public Health System when, as revealed before, hospital residents are taught that erythema migrans is a characteristic symptom of Lyme disease? Future (and most current) doctors will never request Lyme tests for patients who do not show the rash, even if they do show other Lyme symptoms. As it happens, they will most likely confuse it with another disease and misdiagnose the patient.
As has been made clear in the previous point, if you do not have a rash and have positive ELISA and Immunoblot tests, it is almost certain that you will not diagnose and treat Lyme disease despite having it.
In Spain the doctors who know how to treat this disease are counted on the fingers of one hand (and some are left over). They are brave doctors who risk criticism, if not, persecution by that “denialist” medicine that despises and neglects Lyme patients.
For this reason, many patients leave Spain to be treated but not all can afford these costs.
There is a significant gap between the “theory, diagnosis and denialist” of Lyme disease (using a mere 21-day antibiotic treatment, abandoning patients who do not get cured due to not being in the first phase, and disregarding many undiagnosed patients) and the approach taken by doctors worldwide who are actually and truly treating the disease.
Even though chronic Lyme disease has no cure yet, it can be controlled, symptoms can improve and, in some cases, remission is possible.
The Spanish Ministry of Health plans to make the reporting of Lyme cases mandatory.
Crédito: David Piedrabuena Estrada (biólogo)
Fuente de los datos: Bonet Alavés, E., Guerrero Espejo, A., Cuenca Torres, M., y Gimeno Vilarrasa, F. (2016). Incidencia de la enfermedad de Lyme en España. Medicina Clínica, 147(2), 88-89. doi: 10.1016/j.medcli.2016.01.021
This map shows the annual average of acute Lyme disease by province, from 2009 to 2012, out of cases taken in by hospital emergency services.
We must not forget that reporting Lyme cases is not yet mandatory in Spain, so the actual numbers for that period were undoubtedly higher. On top of this, as explained before, there is the fact that there are many false negatives and that, year after year, the incidence of Lyme disease increases worldwide
Furthermore, there is no data on the incidence of the third chronic-persistent phase of the disease.
Independent bodies such as the WHO (World Health Organization) and the European Parliament have acknowledged the extent of what they call an epidemic as well as the current defenselessness of the infected. They are finally taking steps to improve research, diagnosis, treatment, and patient conditions.
The WHO has included new codes for Lyme disease, acknowledging implications that were not covered before, like Lyme dementia.
The European Parliament has passed an ambitious resolution in which, among other things, “calls for mandatory reporting in all Member States affected by Lyme disease” and “asks Member States to expand the use of clinical examination so that doctors can diagnose Lyme disease even if the serology tests are negative, in order to help patients break the ‘therapeutic deadlock’.”
The CDC (US Centers for Disease Control and Prevention) is changing its definition for Lyme disease and warns that in no case is such definition valid as a guide in the treatment of the disease. This change is being implemented in “all individual case definition pages, including the 2017 Lyme case definition page”.
Unfortunately, not all efforts go in the logical, scientific, and decisive direction necessary to help this regrettable situation.
The IDSA (INFECTIOUS DISEASES SOCIETY OF AMERICA) is a private company, despite boasting the misleading “of America” in its name. Making this clear is crucial because, after all, it is a business and, as such, it is undeniably profit-oriented. As mentioned previously, they have financial interests in outdated patents for Lyme diagnosis and they have already faced two lawsuits against their Lyme disease guidelines.
The IDSA is immensely powerful and its infectious disease guidelines are followed by almost every country in the world.
After many years not updating their Lyme guidelines despite research advances, they now have.
The draft of this update was so restrictive, so poorly adjusted to new discoveries and research advances and, of course, so disregardful of patients that the potential new situation would have been even more damaging for Lyme-infected people than before.
In light of this discouraging outlook, 9 countries and 85 organizations came together under the name of “Ad Hoc Patient and Physician Coalition”, writing a document in rebuttal to the draft.
On November 30th 2020, the IDSA published their new guidelines, which confirmed the fears of the international Lyme community: not only did they not include any of the proposals or considerations put forward by the “Ad Hoc Patient and Physicican Coalition”, but the chances of diagnosis and treatment were further restricted than in the old guidelines.
For the sake of brevity, here are but just three examples of this absurd, self-discrediting approach. We hope Spanish and international doctors will recognize this regrettable document for what it is and mistrust these guidelines.
1. Until now, their guidelines recommended a maximum of 21 days of antibiotics, which has clearly been shown to be insufficient in most cases. Now they reduce treatment to 14 days. Of course, they completely disregard the myriad of studies and significant research showing that, with such a short period of antibiotics, the disease, in many cases, will persist.
2. At the same time, they make a liability disclaimer regarding their own guidelines on antibiotic treatment, as well as all others.
“Neither IDSA, AAN, ACR nor their officers, directors, members, employees, or agents will be liable for any loss, damage, or claim in respect of any liability, including direct, special, indirect, or consequential damages, incurred in connection with these guidelines or confidence in the information presented.”
3. They themselves do not believe in their own guidelines, since the disclaimer states:
“Although IDSA, AAN and ACR make every effort to present accurate and reliable information, the information provided in these guidelines is presented as is without any guarantee of accuracy, reliability or otherwise, either express or implied.”
Their own statements make it impossible to trust their guidelines.
While any patient with a chronic disease is at risk of marginalization, Lyme disease patients also face several particularly tough challenges: the stigma of a controversial diagnosis, the medical polarization regarding diagnosis and treatment, the challenge of getting private insurance coverage, if lucky to have any, for treatment beyond the acute phase of the disease, and the fact that it is not recognized as a chronic disease, which takes the possibility of disability or work disability off the table. All of this leads to family, social and work isolation caused by this unknown and poorly treated disease.
“Every day we see many patients suffering from chronic fatigue with various pains and symptoms, well described in the medical literature, wandering around and rejected by the healthcare system.”
“Compared to the general population and patients with other chronic diseases reviewed here, patients with Chronic Lyme Disease (CLD) reported significantly lower health quality status and higher use of healthcare services.”
All these factors, together with the previously explained controversies, add to the already debilitating burnout of patients battling the very real effects of Lyme disease daily.
In addition, the medical uncertainties surrounding tick-borne diseases may lead many physicians to avoid intervening in these diseases or coordinating with a colleague who is treating Lyme.
Patients are misdiagnosed and, sometimes, their symptoms can even be mistakenly blamed on a psychiatric diagnosis or mere pretense.
The cumulative effect of all this means that many patients end up marginalized in all aspects of life.
Moreover, the medical uncertainties surrounding tick-borne diseases may lead many physicians to choose not to intervene in these diseases or not to coordinate with a colleague who is treating Lyme.
Patients are misdiagnosed and sometimes their symptoms may even be mistakenly attributed to a psychiatric diagnosis or faking.
The cumulative effect of this is that many patients become marginalised in all aspects of life.
The chart above shows the funding dedicated to Lyme research in 2017 and the cases reported that year compared to other diseases in the United States. There is no need to comment on this.
“However, although the incidence of Lyme disease is nearly 8 times the number of people diagnosed with HIV/AIDS each year in the US (38,500), the number of clinical trials for Lyme disease lags behind that of leprosy, which has an incidence of less than 200 cases per year.”
In summary, and speaking mainly about chronic or persistent Lyme disease, we can say:
1 – It is a very difficult disease to diagnose so there is no real data on its incidence. This leads to the mistaken belief that it has little or no prevalence.
As a result, as Dr. Navarro says, we find ourselves in a vicious circle that is difficult to break:
As there is almost no data available, the disease almost does not exist, as it almost does not exist, there is almost no research or publications and, as there is almost no research or publications, it almost does not exist.
2 – It is not a rare disease but a poorly understood and unknown disease.
3 – It is a disease that is easy to contract and difficult to cure.
THE INFORMATION GIVEN ON THIS PAGE CANNOT REPLACE A MEDICAL DIAGNOSIS, IT IS GIVEN FOR INFORMATION PURPOSES ONLY.
Hadid, Bella, Yolanda y Anwar https://www.abc.es/estilo/gente/abci-yolanda-hadid-y-anos-lucha-contra-enfermedad-lyme-201708250139_noticia.html
Ally Hilfiger (hija del diseñador), https://getwellbe.com/inspiration/ally-hilfiger-chronic-lyme/
Jamie Lynn Singler, https://www.shondaland.com/inspire/a26837293/jamie-lynn-sigler-motherhood-ms/
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