Problematic Lyme Testing Shortchanges Patients, Especially Children

January 31, 2022

https://www.lymedisease.org/greenberg-lyme-testing-problems/

Problematic Lyme testing shortchanges patients, especially children

by Rosalie Greenberg, MD

Many scientists and physicians agree that there are important issues concerning present Lyme disease (LD) testing.

In this post, I will address how the commercial testing cleared by the Food and Drug Administration (FDA) and approved by the Centers for Disease Control and Prevention (CDC) results in under-identification of the number of individuals, especially children, suffering from LD.

Two-tier testing

First, let’s review the recommended testing to confirm exposure to Borrelia burgdorferi (Bb), the bacteria that causes LD. Testing consists of two parts or “tiers.” Results of these two tests depend upon the ability to detect the antibodies that our bodies make when exposed to the Bb bacteria.

The first is an enzyme-linked immunosorbent assay (ELISA). The ELISA is considered a screening test. According to CDC recommendations, if the ELISA result is negative, the search is over and no further testing is needed.

Looking for antibodies

If the result is equivocal or positive, the second part of the test, or second tier called a Western Blot (WB), should be done. The WB looks for the presence of antibodies to certain proteins (each numbered according their different weights) associated with Bb.

These proteins are depicted on special testing strips as lines called bands. The bands are numbered 18, 22, 23-25, 28, 30, 31, 34, 39, 41, 45, 58, 66, 73, 88, and 93, reflecting their weight in units called kilodaltons.

Testing consists of exposing the patient’s serum (blood without the clotting factors or blood cells) to the antigen bands to see if a reaction occurs. A positive band is supposed to represent an antibody response to a protein found on the Lyme spirochete. I say “supposed to” because there is the potential that some of the bands can become positive from other infections.

The initial goal of this two-tiered approach, using the ELISA as an initial screen followed by the more specific WB, was to create a test that was highly sensitive and specific in identifying the studied infection.

By eliminating the unlikely cases during the first part of the testing and then using more specific identifiers in the second part, the test should be very good, or specific, in identifying most real or true cases of LD. This, in a nutshell, is the rationale for using the two-tiered testing.

Lyme suppresses the immune system

The problems with this type of testing are many. One major difficulty in using the ELISA and WB is that the bacterial organism responsible for Lyme disease, Bb, is in itself immunosuppressive.

So how could a test that depends upon the person’s immune response (the production of antibodies) be much good if we know the organism suppresses the immune system? In other words, if what you are measuring (antibodies) can be affected by the cause of the illness itself (Bb), then depending on this test to make the LD diagnosis is questionable.

This major flaw in the recommended testing diminishes the value of the test. Unfortunately, relying on a test that is so subject to error is the weak foundation that has provided support for much of LD research. This testing is additionally problematic in many ways.

The ELISA is a poor screening test

The concept of two-tier testing is not unique to LD and has been used effectively in diagnosing other illnesses such as Acquired Immunodeficiency Syndrome (AIDS).

But in LD, the first step, the ELISA, is very limited, on average detecting only 56% of cases. It is so very insensitive, it actually misses 44% of cases of people who do have LD. This is in stark contrast to the 99.5% effective rate found when used in testing for AIDS.1

Compounding this insult, the rule that only those whose results are either indeterminate or positive on the initial ELISA test should go on to the second part of the test.

Basically, present recommended use of the ELISA to screen for LD actually eliminates close to half the LD cases from further testing. According to the official guidelines, testing is halted with a negative ELISA and the individual is told that he/she does not have LD.

Clearly, this easily leads to an underdiagnosis of LD infections. Going on to use the WB in those who were indeterminate or positive on the ELISA, results in a 99% specificity (accuracy). But if you’ve already missed half the infected group, then the testing is quite problematic.

The Western Blot has its own issues

The WB looks for the presence of an immune response to Bb proteins, focusing on two types of antibodies: immunoglobulin M (IgM) and immunoglobulin G (IgG).

When a person comes in contact with an infectious agent, the body makes IgM antibodies as its first line of defense. In general, it takes two to four weeks to be at a consistently detectable level, with production peaking at around four weeks and becoming undetectable after six months.

Persistent ongoing detectable IgM levels beyond the one-month period are subject to controversy in their meaning. Some scientists consider these false positives, while others view them as evidence of persistent infection and associated with chronic illness.

The second antibody produced in the body is IgG. It develops over four to eight weeks after exposure to Bb, peaks at approximately six weeks and is gone in less than one year.

IgG antibodies are produced to target specific threats like viruses, bacteria and other potentially harmful microorganisms, and forms the basis of long-term protection against microorganisms.

Difference between IgM and IgG? Not so clear cut

Typically, with infectious illness exposure, the IgM antibody response decreases after a while and one is left only with the IgG response. But this transition is not so clear with exposure to the Lyme bacteria.

In the WB test, the laboratory compares the patient’s blood with blots representing a pattern of numbered bands to those seen in previously well documented CDC LD cases. To be considered a positive WB, the tested blot must show a match by having the required minimum number of reactive bands.

As noted, the bands are numbered by weight, with the following bands previously identified as: 18, 22, 23-25, 28, 30, 31, 34, 39, 41,45, 58, 66, 73, 88, and 93. All of the bands written in black are specific indicators that are seen only in Bb infections.

Three of these bands have been considered highly specific for LD and are given names based on their outer surface proteins (OSP). These bands are known as OSP A (Band 31), OSP B (Band 34) and OSP C (Band 23).

Some doctors believe that a positive result on even only one of these highly specific bands is good evidence of exposure to the Bb bacteria. It’s important to keep in mind that one can be exposed to an infectious agent (e.g. virus, bacteria, fungus, etc.) but not necessarily become ill. Therefore exposure and actual illness are different.

In the listing, the color blue has been used for bands 28, 45, 58, 66 which are considered nonspecific to LD. This means they can appear positive because the person can have other infections, not only LD . Band 41 is somewhat controversial regarding specificity and that is why I colored it green.

A positive WB assay is based on having two of the following three bands 23, 39, 41 being positive to be considered an IgM (Immunoglobulin M) antibody positive test. A positive WB IgG (Immunoglobulin G) antibody test requires the presence of 5 of 10 bands: 18, 23-25, 28, 30, 39, 41, 45, 58, 66, or 93.

“Positive” vs. “false positive”

According to present CDC guidelines, an IgM antibody test can be considered a positive indicator of early exposure to the infection only during the first 30 days after onset of illness.

A positive IgM antibody test is generally considered a marker of an acute (recent onset) illness. The official recommendation is that positive IgM antibody results should be disregarded if the patient has been sick for more than 30 days (i.e. 30 days after the bite.)

After that time, the “gospel” according to the CDC and Infectious Disease Society of America (IDSA) proclaims that a positive IgM antibody test is a false positive. A false positive means that the test is read as positive but isn’t due to LD but caused by another infection or problem.

As noted previously, the typical immunologic progression with infections is a transition from initial production of IgM antibodies to the subsequent production of IgG antibodies. But the situation in LD isn’t typical.

As previously discussed, Bb bacteria are capable of immunosuppression. This means that the organism itself can interfere with the immune system’s response to infections. The normal transition from making IgM antibodies to IgG antibodies can be hindered.

In part, this is because of problems that occur in what’s called germinal centers, the part of the lymphoid tissue where the antibodies are made.2

“The rule” that all IgM antibodies present after 30 days from the initial infection must be considered false positives, effectively serves to dismiss and minimize the number of real cases of LD.

A negative IgM WB test with a positive IgG WB are considered to indicate either late-stage LD or are a residual result left over from a past infection that is no longer present.

The result of this two-tiered testing system is meant to be 99% specific – meaning these are real cases of LD and not false positives.

This present testing approach is so flawed that a statistical analysis by Cook and Puri found that the LD two-tiered testing resulted in 500 times more false-negative (read as non-Bb but really is) outcomes than similar two-tiered tests used in the diagnosis of AIDS.3

Dearborn conference

The 1994 Second National Conference on Serologic Diagnosis of Lyme Disease was held in Dearborn, Michigan. It was attended by representatives of the Association of State and Territorial Public Health Laboratory Directors, CDC, the FDA, the National Institutes of Health (NIH), the Council of State and Territorial Epidemiologists, and the National Committee for Clinical Laboratory Standards.

The goal was to establish a set of nationwide standards for LD testing for the purpose of creating consistency in reporting WB results. Unfortunately, the standards selected at that meeting are still in use. In addition to selecting the two-tier testing, the decision was made to eliminate two of the highly specific bands, 31, and 34, from the required testing.

​These bands were removed because a vaccine against LD using these proteins was in the planning stage. Investigators knew that the use of these two specific proteins in the vaccine could create false positives for these bands in vaccinated individuals. Put another way, because these proteins were to be used in the vaccine, the vaccinated individuals could test positive for these bands but not have LD.

Participants at the Dearborn meeting seemed to doubt the ability of doctors to remember to ask if the individual had already received the vaccine when the person was getting new testing for LD. Could it be that such a simple step, of asking a question, was all that would have been needed to retain these two highly specific bands as possibilities for optimal testing?

LYMErix

In 1998, the FDA approved a Lyme vaccine, LYMErix™, which absolutely did have the potential to make these two very specific bands become positive in vaccinated individuals. Although for a variety of reasons that are complicated and will not be addressed here, by February 26, 2002, SmithKline Beecham withdrew the vaccine from the market.

What was accomplished by removing these two highly specific bands? It’s important to keep in mind that these bands were so significant that they were used to make the vaccine. Eliminating them from the diagnostic testing detracted from the WB test’s diagnostic sensitivity.

Band 31 is also special because it is not seen until at least months after initial infection. Its presence could potentially serve as an indication of an ongoing infection (chronic rather than acute infection at time of testing.)

In addition, bands 31 and 34 have been associated with the presence of neuropsychiatric illness in LD, which could have a crucial impact in the approach to treatment in similarly affected patients. Eliminating these bands removed potentially critical information.

Continuing to omit these bands from the tests defies logic.

Dr. Paul Fawcett and colleagues reported results of an important study at a Rheumatology Symposia Conference in Texas in 1995. The research was designed to look at the effect of eliminating the two specific bands from the WB criteria.4

The authors compared the diagnostic utility of applying the older criteria (including bands 31 and 34) vs. the newer WB criteria (as decided at the Dearborn meeting) to 66 child patients with known histories of a tick bite, an erythema migrans rash and symptoms of the illness.

Inclusion of bands 31 and 34 resulted in the identification of 100% of the youth as positive for LD. Using the newer criteria where OSP A and OSP B were omitted resulted in only 31% of the youth being identified as positive for LD.

Grossly inadequate

From their analysis, the investigators concluded:

“The proposed Western Blot Reporting Criteria are grossly inadequate, because it excluded 69% of the infected children.”

Basically by eliminating these bands from the WB, kids became discriminated against and undercounted in the statistics.

It’s unconscionable that these bands were never put back nor to my knowledge has there been significant discussion to reinstate them. This leaves doctors in the position of missing more people who really have LD.

There is more to consider in how the official change in testing criteria has shortchanged children, adolescents and even adults. Common sense dictates that testing for bands 31 and 34 in anyone born after 2002 (when the vaccine was taken off the market) would result in higher sensitivity and specificity. The more bands available for identifying the illness, the more likely you’ll identify positive individuals. Why would any medical professional argue against this?

The omission of bands 31 and 34 presents yet another problem for kids. Evidence in the medical literature indicates that positivity for these bands is associated with the presence of neuropsychiatric issues such as autism. Wouldn’t one want to include in the testing, markers that might alert one to these issues, especially in children?

Continuing to omit these bands for more than two decades has only served to deny the real number of people who have in the past, and perhaps still continue, to suffer from LD. By removing these two bands, we may be removing years of optimum health, as well as impairing social and cognitive development for some children for their lifetime.

Current two-tiered testing is indirect

Since the bacteria is difficult to isolate, much of the current testing is designed to look for reactions indicating that the bacteria is present, further complicating the diagnostic process.

Let me explain. Present approved testing looks for the presence of and intensity level of an individual’s immune response to the LD bacterial proteins. Testing would be much less controversial if the organism could be directly cultured or identification of the bacterial DNA occurred. Most scientists would agree that the indirect approach of looking at antibody response with an illness that can cause immunosuppression is inherently fraught with problems and limitations.

Interestingly, at present some research laboratories are focused on developing better and more direct methods of testing for Bb. This is sorely needed. Consider that in 2020, the National Institute of Health allotted only 13% ($5.3 million) of its total LD budget to advance diagnostic Lyme testing.5

Given that testing is the foundation of much research on the diagnosis and treatment, and present recommendations are problematic, 13% is a small amount. It is disturbing to realize that 30% of this allotted money went toward more antibody testing research (i.e. more indirect testing). This only serves to perpetuate the present problem of using an indirect method to identify an immunosuppressive bacterium.

Current tests only identify a few species of Bb

There are multiple strains or types of Borrelia bacteria that can cause Lyme as well as other diseases (e.g. Borrelia miyamotoi causes tick-borne relapsing fever.) Most labs use the strain B 31 for LD testing. IGeneX laboratory uses two strains: B 31 and Bb 297. The more strains used as possibilities, the increased likelihood of getting a positive test result.

This is part of why IGeneX gets more positive testing for LD than bigger labs like Quest and Labcorp. How many types of Borrelia that cause illness are we missing because of the limitations of our tests?

As you can see, there are multiple problems inherent in the recommended testing. It is crucial to acknowledge that the present faulty testing, which serves as the foundation for many studies, creates bias in all the research that is dependent upon it.

This major flaw has affected and colored too many aspects of our knowledge about LD. The present system of testing results in a significant underestimation of the number of individuals who suffer from LD. Our people, and especially our children, deserve much better from American medicine.

Dr. Rosalie Greenberg is a Board-Certified Adult, Child and Adolescent Psychiatrist, known for her expertise in the diagnosis and management of complex psychiatric problems in children, and pediatric psychopharmacology. Her website is rosaliegreenbergmd.com.

References

1 Stricker RB and Johnson L. Lyme disease diagnosis and treatment: lessons from the AIDS epidemic. Minerva Med 2010 Dec;101(6):419-25. PMID: 21196901.

2 Hasley CJ, Eisner RA, Barthold SW and Baumgarth N. Delays and Diversions Mark the Development of B Cell Responses to Borrelia burgdorferi Infection. J Immunol June 1, 2012, 188 (11) 5612-5622;

3 https://doi.org/10.4049/jimmunol.1103735. Cook MJ and Puri BK. Application of Bayesian decision-making to laboratory testing for Lyme disease and comparison with testing for HIV. Int J Gen Med. 2017; 10: 113–123. Published online 2017 Apr 10. doi: 10.2147/IJGM.S131909 PMCID: PMC5391870.

4 Paul Fawcett et al. Rheumatology Symposia Abstract # 1254. 1995 Rheumatology Conference in Texas.

5 https://www.documentcloud.org/projects/nih-lyme-research-funding-2

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“Setting arbitrary level of antibodies to diagnose a disease that has not been amenable to Koch’s postulates seems open to question.  By the same token, ignoring antibody results unless they meet arbitrary levels seems suspect.  The vast majority of patients in this series showed some WB antibody exposure, but many did not meet the arbitrary limits set….in our present state of knowledge, the diagnosis of chronic Lyme disease is a clinical one.  Many of the patients in this series have suffered serious ‘hurts’ when they have been told that they could not have LD because their WB did not meet arbitrary limits.”   ~ Dr. Burton Waisbren

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Lyme, Testing

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Nurse Whistleblower: “Vax” Victims Overflow into Refrigerated Trailers & Attorney Reveals Alarming COVID Shot Safety Signals Being Ignored

January 27, 2022

https://rumble.com/vta710-vax-victims-overflow-morgues-bodies-fill-morgues-overflow-into-refrigerated  Video Here (Approx. 13 Min)

Stew Peters Show

Jan. 25, 2022

“Vax” Victims Overflow Morgues into Refrigerated Trailers

Corrine Lund is a registered nurse who has been one of our top whistleblowers regarding events unfolding in our hospitals. Back in September she told us how hospitals were vaccinating sedated elderly patients without their consent. Now, Corrine says she’s seen the inevitable sequel to that surge: the die-off. Corrine says there are so many bodies that the local morgues have overflowed and they have to put extras into trailers in the parking lot. She says people are dying of myocarditis, atrial fibrillation, strokes, respiratory failure, every ailment you can think of, and they’re all brain and heart clot related.

  • Lund was a supervisor for entire first year of the ‘pandemic’ and states she did NOT see an uptick in deaths caused from COVID.
  • Lund also points out that the COVID test does NOT detect the variants. She questions and is alarmed by the talking point that people are getting certain variants. This can not be confirmed by current available routine testing.
  • She is alarmed that her colleagues are “dumbing down”, not thinking for themselves, and walking in “lockstep” with whatever the CDC says.
  • Lastly, Lund points out that they have put the National Guard in very prominent public places in her area to “help” alleviate the “overcrowding” of the hospitals by answering phones, despite the fact that for the past two decades hospitals have running at or above capacity.  At or above capacity does not mean there isn’t any room.  It simply means there are only enough health care workers that can provide for a certain number of patients. Lund does not see how their presence is going to help overcrowding which doesn’t exist.

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https://tennesseestar.com/2022/01/26/lawyer-thomas-renz-miscarriages-and-cancers-up-300-percent-neurological-problems-up-1000-percent-in-past-year/

Lawyer Thomas Renz: Miscarriages and Cancers Up 300 Percent, Neurological Problems Up 1000 Percent in Past Year

Admin
by Debra Heine

During a panel discussion in the United States Senate Monday, attorney Thomas Renz, a member of America’s Frontline Doctors’ legal team, revealed several alarming vaccine safety signals that the U.S. government has ignored. The information was provided by three military doctors who have access to vaccination data that has been withheld from the general public.

Senator Ron Johnson (R-Wis.) convened a panel of world renowned doctors and experts to provide their perspectives on the global pandemic response, including their perspectives on “early and hospital treatment, vaccine efficacy and safety, what went right, what went wrong, what should be done now, and what needs to be addressed long term.”

The panel discussion was titled, “COVID 19: A Second Opinion.”

Renz said three Department of Defense whistleblowers—Lt. Col. Theresa Long, Dr. Samuel Sigoloff, and Lt. Colonel Peter Chambers—have provided stunning inside data about “vaccine” injuries. (See link for article)

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SUMMARY:

  • Miscarriages and cancers have increased by about 300% in the past year over the 5 year average.
  • Neurological problems have increased by 1,000%.
  • Dr. Colonel Long, an aviation safety officer, had to ground “vaccinated” pilots with symptoms of myocarditis due to fear they might die of heart failure in mid-air. Her efforts to inform senior medical leaders were ignored and the military proceeded to rush out the Pfizer & Moderna shots. A military gag order allows Dr. Long to give testimony upon request to political representatives despite banning her from media appearances.
  • The Biden administration is ignoring a lawsuit seeking an injunction against the military “vaccine” mandate.
  • Attorney Renz also discussed shocking DOD documents called “Project Salus” which examined data on 5.6 million Medicare beneficiaries.
  • Go here to see the latest VAERS data and mounting list of adverse reaction and deaths reported after COVID shots.

Category:

Activism, vaccines, Viruses

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Nurse Whistleblower: Possible Botched Admin of COVID Shots on Kids. ‘Some People Got the Wrong One’

http://  Approx. 11 Min

Jan. 26, 2022

Recordings of Possible Botched Administration of COVID Vax on Kids “Some people got the wrong one”

  • Medical supervisor admits “some people got the wrong one.”
  • There is NO package insert in the box with COVID shot vials. No ingredients listed.
  • Nursing staff told to “YouTube it” when asking how to mix the COVID-19 Vaccine 
  • Nursing staff on video: “wrong mixture could cancel out [the protection of the vaccine] or have adverse effects.”
  • A pediatric nurse came to Project Veritas to blow the whistle on New York contracted healthcare provider DocGo, and their subsidiary Ambulnz, who may have jeopardized the safety of thousands of people, including young children, through negligent administration of the COVID-19 “vaccine”. 
  • Recordings from the whistleblower show fellow medical staff acknowledging mistakes of improperly mixing and administering the Pfizer children’s vaccine with the wrong diluent (bacteriostatic water), lack of proper training, lack of incident reporting. 
  • Pfizer, the CDC, and the FDA are all very clear: the COVID-19 vaccine should only be administered with the proper saline solution; bacteriostatic water is NOT to be used. 
  • Project Veritas reached out to Pfizer, multiple doctors, and scientists. None were able to state with certainty what the adverse effects are on children getting the wrong mixture, or adults getting overdosed with the COVID-19 vaccine.
  • It is unclear if patients, including parents of children who were vaccinated, were ever notified, despite company supervisors appearing to be aware of the problem.
  • According to the nursing staff, no incident reports were filed.
  • A full version of Capone’s response to the Project Veritas release is available at projectveritas.com.
  • More children have died after COVID shots than from COVID.
  • Go here for the latest VAERS information and mounting list of adverse reactions and deaths.

Regarding Children

Injecting children with this experimental gene therapy, who rarely get COVID or transmit it, and have more than a 99.9% chance of surviving is the height of insanity. A team of Johns Hopkins researchers recently reported that when studying a group of about 48,000 children, they found zero COVID deaths among healthy kids, and a new study from Germany shows extremely few deaths among healthy children overall and ZERO deaths in 5-11 year olds, suggesting most studies are designed to distort the risk to kids.  Go here to read and listen to Dr. Prasad on how many are citing research that is flawed.

A recent report by Public Health Ontario showed heart inflammation following these shots is significantly more prevalent in young people, with over 100 needing hospitalization for “vaccine”-related heart problems.  And a preprint study, showed healthy boys between ages 12-15 were 4-6 times more likely to be diagnosed with myocarditis from the COVID injections than they were to be hospitalized with COVID.  As of Nov. 24, 2021, VAERS has received 1,949 reports of myocarditis or pericarditis among people ages 30 and younger who got the jab.  There are currently 666 cases of carditis after the shots in the 12-17 age range. To date there have only been 630 deaths in 17 year olds and under who tested positive for COVID, which again, may or may not be the only cause of death.  We can truthfully say that more children have died from the injections than the disease itself, and those numbers are only going to increase.

A respected geneticist has issued a warning for young people stating,

“the risk is higher to be vaccinated by Astra-Zeneca than not to be vaccinated. That’s it. It’s as clear as that.”

Large U.K. study, the most comprehensive on the topic to date, backs up clinical reports that show children and teens are less likely to be hospitalized or face severe effects from the virus.  The UK advisory panel does not recommend COVID injections to healthy 12-15 year olds due to the potential of heart inflammation. They also state children are at such a low risk from COVID that the jabs offer only a marginal benefit.

Go here to listen to “A Call to Europe: The Future of our Children is at Stake!”

Category:

Activism, vaccines, Viruses

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Exponential Clinical Outcomes 2021 Notes

https://www.betterhealthguy.com/eco2021

ECO 2021 Live

I had the opportunity to attend ECO 2021 held online on October 28-30, 2021.   ECO stands for Exponential Clinical Outcomes.  This is one of the most forward-thinking events I have attended.

The event is the brainchild of Dr. Todd Watts and Dr. Jay Davidson who also created CellCore Biosciences and Microbe Formulas.  I’m grateful for their products, and I take several of them daily.

CellCore Biosciences is their practitioner line while Microbe Formulas is their consumer line. While many of the products are available from both companies, there are some differences in some products in terms of formulation or availability in the Microbe Formulas product line.

Disclaimer: Nothing in this text is intended to serve as medical advice. All medical decisions should be made only with the guidance of your own personal licensed medical authority.

Disclaimer: This information was taken as notes during the training course and may not represent the exact statements of the speakers. Errors and/or omissions may be present.

Note: As this information may be updated as any errors are found, I kindly request that you link to this single source of information rather than copying the content below. If any updates or corrections are made, this will help to ensure that anyone reading this is getting the most current and accurate information available. ~ The Better Health Guy

Topics covered:

  • Glyphosate toxicity
  • The protocol approach
  • Mastering Mitochondria
  • The Krebs Cycle
  • Optimizing Mitochondrial function
  • Is your Water keeping you sick?
  • Solutions for the Parasite Epidemic
  • #1 Stealth Infection you are missing
  • The Gut, The Brain, and Autism
  • The Wrecking Ball of Estrogen Dominance
  • Chemicals and Biotoxins in Dentistry
  • Case studies: Skin Changes
  • Thoughts on Vitamin D
  • Importance of Emotional Clearing to Detox
  • Mental and Emotional Case Studies

For more:

Category:

Adrenals, Dentistry, Detoxing, diet and nutrition, Gut Health, Herbs, Parasites, Supplements, Treatment, Viruses

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Points of View: Lyme Disease & Patients

https://danielcameronmd.com/points-of-view-lyme-disease-patients-and-physicians/

Points of view: Lyme disease patients and physicians

frustration in lyme disease patient as he talks to doctor

Raffetin and colleagues explore the perceptions and experiences of Lyme disease patients in an article entitled “Perceptions, Representations, and Experiences of Patients Presenting Nonspecific Symptoms in the Context of Suspected Lyme Borreliosis.” [1]

By

The authors looked at the perceptions, representations, and experiences of patients who had Lyme disease with nonspecific symptoms and no objective manifestations of the disease. This small study included 12 patients with confirmed and non-confirmed Lyme disease or unexplained symptoms.

“Our study highlights that some physicians may also experience a lack of knowledge and information about [Lyme Borreliosis], increasing the difficulty to answer the patient’s needs,” wrote Raffetin et al. 1

The investigators described several themes from their interviews with patients, along with patient statements expressing their frustrations.

Painful Experience with the Disease, Leading to Confusion and Fear

  • “Nothing could bring me relief …, the pain was almost unbearable.”
  • “Always tired, tired … tired, tired.”

Incomprehension, Fear, and Doubt when Faced with the Lack of Explanation for the Symptoms

  • “We kept doing the analyses, we didn’t understand.”
  • “The patients expressed a feeling of fear of unpredictable flare-ups, of not being cured, etc.”
  • “I was afraid of not knowing how I would end up.”

Long and Difficult Treatment Path, Experienced as an Obstacle Course

Fight against the Medical World

  • “My GP, I am reluctant to ask him, he doesn’t want to believe me.”
  • “They don’t listen, … they look at everything medical, and as long as the tests are negative, they say that you have nothing.”
  • “The absence of consensus on recommendations at the time of the study has reinforced the feeling of abandonment by the scientific community.”

Disease Taking a Serious Toll on the Patient’s Health

Multiple and Negative Repercussions, Experienced as an Injustice

  • “At the professional level, the patients reported absences linked to multiple medical consultations, repeated leave from work, etc.”
  • “Activities were impacted by the unpredictability of the symptoms, leading to the feeling of being overwhelmed by the disease.”
  • “The patients described either a lack of understanding from their relatives, or unconditional support, sometimes with the family adapting to their condition.”

Frustration expressed by doctors

The authors also described the frustration among doctors treating Lyme disease patients. “According to a survey, one-third of general practitioners experience difficulty when faced with the ‘insistent’ demands of ‘hyper-informed’ patients.”

“The major challenge for the doctor is to determine on one hand the limits of his own knowledge and his capacity to answer the patient, and on the other hand the quality of the patient’s information sources.”

Some of the problems lie in the lack of education. “The patients highlighted the poor training of physicians regarding persistent symptoms, as has also been shown in several studies on somatic symptom disorders.”

“These results are consistent with the views of the [general practitioners] interviewed in a study by Lisowski et al., 87% of whom said they were uncomfortable following up with patients who had symptoms after a full course of antibiotics due to having failed to provide codified management.”

The authors emphasized the need for a “coordinated care pathway and careful listening and recognition.” They also suggested that specialized reference centers might help meet these expectations.

Related Articles:
Lyme disease myths lead to frustrations for doctors
References:
  1. Raffetin A, Barquin A, Nguala S, et al. Perceptions, Representations, and Experiences of Patients Presenting Nonspecific Symptoms in the Context of Suspected Lyme Borreliosis. Microorganisms. Jul 15 2021;9(7)doi:10.3390/microorganisms9071515

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