The recent article by Shapiro, Baker and Wormser in the American Journal of Medicine [1] exemplifies the struggles facing Lyme disease patients. It seems that for now, traditional thinking about Lyme disease still has the ear of the mainstream medical journals. The authors repeat the traditional view of Lyme disease, which is that Lyme disease is easy to diagnose and easy to treat. The authors assert that any challenge to this view is "fake news."
The problem is that the same names keep cropping up in defence of this traditional view of Lyme disease, but there is much dissent among the research community, practitioners and patients about what Lyme disease actually is.
Superficially, Lyme disease is bacterial infection, Borrelia burgdorferi, which affects various parts of the body. In theory once the bacteria have been treated with antibiotics, the patient should get better.
Unfortunately, theory and practice diverge. Tens if not hundreds of thousands of people are now seriously ill long term from Lyme disease, so-called post treatment Lyme disease syndrome (PTLDS). The so-called cure is no such thing. Something is going on. There are hundreds of thousands more who are going undiagnosed, or are having terrible symptoms following tick bites, only to be told that they don't have Lyme disease. The patient may look healthy but they know they are not.
And even worse, Shapiro et al are insistent that their view of Lyme disease is definitive and correct, which only exacerbates patient suffering.
Lyme disease is far more complicated than the authors make out. The current testing and treatments are completely inadequate, yet the authors fail to acknowledge this.
The golden rule of science is that when theory and practice differ, theory must be changed. In physics, it is always a source of consternation when results match theory perfectly - there are no clues to a new theory. Not so with Lyme disease research. Any challenge to the status quo would be career ending for the Lyme cabal, as everything they have ever said about Lyme disease seems to be wrong. Being wrong is part of science - it's how you respond that shows your true character.
Other criticisms
Huib Kraaijeveld [2], Dr Daniel Cameron [3] and Carl Tuttle [5] have written some excellent responses to this AJM article. I'm writing this only because I feel compelled to rant about this low ebb in medical science.
On chronic fatigue
The authors state
According to the latest CDC figures, around 300,000 Americans each year are diagnosed with Lyme disease. An equal number may only get it mildly or unsymptomatically, or have other serious conditions which are not diagnosed as Lyme. Even if just a percentage of those people develop severe long-term symptoms, this is a big problem.
On testing
The authors state,
The underlying issue is one of denial. Lyme disease is defined by the authors as the condition detected by their test, and this causes much patient misery and wasted medical expense. More reputable and knowledgeable sources say that Lyme disease should be a clinical diagnosis.
The reason the current serological tests are so inaccurate is because many people in the population have some exposure to borrelia burgdorferi, and therefore a positive test means nothing. To attempt to salvage the test, the response to the test needs to be strong, has a pre-screening (ELISA) step, and needs to include several additional bands which often fail to include relevant strains of Borrelia.
Chronically ill Lyme patients often do respond positively to the test (as Wormser points out), but often their immune systems are severely compromised by the infection (and coinfections) and cannot mount an adequate immune response against either the bacteria or the 2-tier test.
The authors fail to mention any of these limitations.
By defining Lyme disease as that which is detected by their test, other tests which show different result to this test are by definition wrong. This is perverse.
The authors repeatedly claim, here and elsewhere, that Lyme disease is generally over-diagnosed. There is absolutely no evidence that this is the case. It is based on opinion. In fact there are thousands of people who are experiencing life-changing symptoms following tick bites, all following a similar pattern and collection of specific symptoms. Many of these people are sero-negative, yet had have bulls-eye rashes and test positive to other types of test. The authors would have us believe that their illness is all in their heads.
On bacterial persistence
A leading theory of PTLDS is bacterial persistence in round forms and biofilms. There are plenty of studies [6] pointing to viability of Borrelia in treated patients, in-vitro cultures and in vivo in monkeys, and you can even see the spirochaetes in the blood in dark-field microscopy. In spite of this, the authors state without evidence that,
One suspects that the reason the authors are against the idea of persistence is to save their own reputations.
On additional treatments
Nevertheless, this shows clearly how inadequate the current treatments for Lyme disease are. Yet the authors fail to mention this as well.
There is plenty of evidence, as well as patient experience, that longer course of antibiotics are sometimes necessary. But it is certainly is true that many alternative treatments regimes fail, as indeed is often the case even in traditional medicine.
A lesson in ethics
In spite of ample evidence that the tests and treatments don't work, the authors have achieved nothing in Lyme disease in 30 years. In fact, they've held it up. Isn't it time that they, along with their traditional thinking were discarded?
The accusation is often made that there are many unscrupulous and ineffective tests and treatments for Lyme disease. Actually this is true, but let's look at the authors' own scruples shall we? Many of the original Lyme researchers worked in biowarfare. I cannot think of anything less ethical. Coincidentally the first outbreak of Lyme was detected in the vicinity of their biowarfare research lab...
Shapiro and Wormser take payments from the insurance industry, where they specialise in denying treatment to many sick Americans by convincing insurance companies to withhold funding for people's medication, accusing parents of sick children of child abuse, attempt to get doctors struck off for not following the flawed treatment guidelines, and actually attempting to help people who have become chronically ill following these flawed guidelines.
The patients' view
I have MSIDS and PTLDS, confirmed serologically. I passed Wormser's flawed test and have many characteristic symptoms. Articles such as this one perpetuate old and unjustifiable myths, and do nothing but hamper patient care.
Lyme is only easy to diagnose and treat from a physician's view. You order a blood test, and if it comes back positive, the patient gets 2-4 weeks antibiotics. Any more whinging from the patient can be denied, and put down to psychological issues.
Seen from a patient's view, the important one, Lyme is anything but easy. It is a very unpleasant and life changing disease. Even if you are fortunate enough to get a positive blood test, you will only get 2 weeks of antibiotics which often doesn't cure the disease. Articles such as this one misinform and undermine the entire medical community.
A proportion of the 300,000 new US cases of Lyme each year go bad. Patients are jumping up and down shouting that they are seriously sick from tick bytes, often having positive blood tests, only to be fobbed off that they're not really ill. Are patients really this stupid? I have a PhD in computer science - am I stupid too?
How did things end up like this?
There are two main reasons. Firstly, Lyme is a progressive and emerging disease, and it's only in recent years that the scale of the pandemic is clear. The second reason is the low calibre and questionable ethics of the leading researchers in the field. [5]
Almost everything we thought we knew about Lyme is wrong. This is normal in science. But the response of the leading researchers to this has been reprehensible, causing untold suffering and misery of patients worldwide. A lot of the original research is simply wrong, and was obviously wrong even at the time.
Untold damage has been done to my own health by following outdated treatment guidelines, and I'm now suffering with a disease, PTLDS, which should have been addressed over a decade ago had the Lyme researchers had an ounce of decency. Tens of thousands of others, including many children, have had their lives wrecked due to what is widely claimed is medical negligence, research fraud and insurance fraud.
Patients, researchers and physicians alike are being hoodwinked by articles like this one which fail to acknowledge the severity of the situation. I'm disappointed in the top-tier journals which do not challenge traditional dogma about Lyme disease, and have instead become an echo chamber.
Links and references
1. http://www.amjmed.com/article/S0002-9343(17)30138-9/pdf
2. https://huib.me/en/blog/item/76-fake-news-or-research-misconduct
3. http://danielcameronmd.com/fake-news-charges-do-not-give-credit-to-the-lyme-disease-community/
4. Berende A, ter Hofstede HJ, Vos FJ, et al. Randomized trial of longer-term therapy for symptoms attributed to Lyme disease. N Engl J Med 2016;374:1209-1220. http://www.nejm.org/doi/ref/10.1056/NEJMoa1505425
5. https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/19628804
6. http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf
The problem is that the same names keep cropping up in defence of this traditional view of Lyme disease, but there is much dissent among the research community, practitioners and patients about what Lyme disease actually is.
Superficially, Lyme disease is bacterial infection, Borrelia burgdorferi, which affects various parts of the body. In theory once the bacteria have been treated with antibiotics, the patient should get better.
Unfortunately, theory and practice diverge. Tens if not hundreds of thousands of people are now seriously ill long term from Lyme disease, so-called post treatment Lyme disease syndrome (PTLDS). The so-called cure is no such thing. Something is going on. There are hundreds of thousands more who are going undiagnosed, or are having terrible symptoms following tick bites, only to be told that they don't have Lyme disease. The patient may look healthy but they know they are not.
And even worse, Shapiro et al are insistent that their view of Lyme disease is definitive and correct, which only exacerbates patient suffering.
Lyme disease is far more complicated than the authors make out. The current testing and treatments are completely inadequate, yet the authors fail to acknowledge this.
The golden rule of science is that when theory and practice differ, theory must be changed. In physics, it is always a source of consternation when results match theory perfectly - there are no clues to a new theory. Not so with Lyme disease research. Any challenge to the status quo would be career ending for the Lyme cabal, as everything they have ever said about Lyme disease seems to be wrong. Being wrong is part of science - it's how you respond that shows your true character.
Other criticisms
Huib Kraaijeveld [2], Dr Daniel Cameron [3] and Carl Tuttle [5] have written some excellent responses to this AJM article. I'm writing this only because I feel compelled to rant about this low ebb in medical science.
On chronic fatigue
The authors state
Annual surveys by the Centers for Disease Control and Prevention (CDC) indicate that approximately 15% of women and 10% of men in the United States felt either exhausted or extremely tired either every day or most daysIt is disingenuous, and utterly ignorant, to equate chronic fatigue and general tiredness. The authors are basically claiming, without proof, that Lyme is the new "go to" illness for anyone feeling a bit under the weather. This causes physicians to accuse Lyme patients of making the whole thing up. Outrageous, and causes intense misery and suffering, not to mention cost. The authors cannot face their own culpability, and maybe downplay the severity of the symptoms to ease their own consciences.
According to the latest CDC figures, around 300,000 Americans each year are diagnosed with Lyme disease. An equal number may only get it mildly or unsymptomatically, or have other serious conditions which are not diagnosed as Lyme. Even if just a percentage of those people develop severe long-term symptoms, this is a big problem.
On testing
The authors state,
However, patients who have been infected by B. burgdorferi for many weeks or months are almost invariably seropositive by 2-tier testsciting their own work, and a test developed by one of the authors, Wormser. Unfortunately this is a bare-faced lie. There are plenty of published studies which give a much lower sensitivity (circa 50%) of this method, and the high rates of false positives. [2] As a test, it is hard to conceive a worse one.
The underlying issue is one of denial. Lyme disease is defined by the authors as the condition detected by their test, and this causes much patient misery and wasted medical expense. More reputable and knowledgeable sources say that Lyme disease should be a clinical diagnosis.
The reason the current serological tests are so inaccurate is because many people in the population have some exposure to borrelia burgdorferi, and therefore a positive test means nothing. To attempt to salvage the test, the response to the test needs to be strong, has a pre-screening (ELISA) step, and needs to include several additional bands which often fail to include relevant strains of Borrelia.
Chronically ill Lyme patients often do respond positively to the test (as Wormser points out), but often their immune systems are severely compromised by the infection (and coinfections) and cannot mount an adequate immune response against either the bacteria or the 2-tier test.
The authors fail to mention any of these limitations.
By defining Lyme disease as that which is detected by their test, other tests which show different result to this test are by definition wrong. This is perverse.
The authors repeatedly claim, here and elsewhere, that Lyme disease is generally over-diagnosed. There is absolutely no evidence that this is the case. It is based on opinion. In fact there are thousands of people who are experiencing life-changing symptoms following tick bites, all following a similar pattern and collection of specific symptoms. Many of these people are sero-negative, yet had have bulls-eye rashes and test positive to other types of test. The authors would have us believe that their illness is all in their heads.
A leading theory of PTLDS is bacterial persistence in round forms and biofilms. There are plenty of studies [6] pointing to viability of Borrelia in treated patients, in-vitro cultures and in vivo in monkeys, and you can even see the spirochaetes in the blood in dark-field microscopy. In spite of this, the authors state without evidence that,
It is highly implausible that either patients with chronic Lyme disease or patients who had Lyme disease and have post-treatment symptoms, who are seronegative, who have no objective findings, and who have already been treated extensively with antibiotics would have cultivable B. burgdorferi in their bloodThe authors then find one study which (they claim) was deficient, and therefore insinuate (falsely) that ALL studies into bacterial persistence much be wrong.
One suspects that the reason the authors are against the idea of persistence is to save their own reputations.
On additional treatments
multiple clinical trials that show that patients with well documented Lyme disease who have residual nonspecific symptoms after treatment do not benefit from additional treatment, even with extended courses of IV antibioticsThe article itself cites Berende et al published in NEJM [4], which show that post-treatment Lyme patients often continue to have extremely poor health. The reason this little heresy was allowed past the reviewers is because the article appears superficially to support the idea that the cause of PTLDS is not bacterial.
Nevertheless, this shows clearly how inadequate the current treatments for Lyme disease are. Yet the authors fail to mention this as well.
There is plenty of evidence, as well as patient experience, that longer course of antibiotics are sometimes necessary. But it is certainly is true that many alternative treatments regimes fail, as indeed is often the case even in traditional medicine.
A lesson in ethics
In spite of ample evidence that the tests and treatments don't work, the authors have achieved nothing in Lyme disease in 30 years. In fact, they've held it up. Isn't it time that they, along with their traditional thinking were discarded?
The accusation is often made that there are many unscrupulous and ineffective tests and treatments for Lyme disease. Actually this is true, but let's look at the authors' own scruples shall we? Many of the original Lyme researchers worked in biowarfare. I cannot think of anything less ethical. Coincidentally the first outbreak of Lyme was detected in the vicinity of their biowarfare research lab...
Shapiro and Wormser take payments from the insurance industry, where they specialise in denying treatment to many sick Americans by convincing insurance companies to withhold funding for people's medication, accusing parents of sick children of child abuse, attempt to get doctors struck off for not following the flawed treatment guidelines, and actually attempting to help people who have become chronically ill following these flawed guidelines.
The patients' view
I have MSIDS and PTLDS, confirmed serologically. I passed Wormser's flawed test and have many characteristic symptoms. Articles such as this one perpetuate old and unjustifiable myths, and do nothing but hamper patient care.
Lyme is only easy to diagnose and treat from a physician's view. You order a blood test, and if it comes back positive, the patient gets 2-4 weeks antibiotics. Any more whinging from the patient can be denied, and put down to psychological issues.
Seen from a patient's view, the important one, Lyme is anything but easy. It is a very unpleasant and life changing disease. Even if you are fortunate enough to get a positive blood test, you will only get 2 weeks of antibiotics which often doesn't cure the disease. Articles such as this one misinform and undermine the entire medical community.
A proportion of the 300,000 new US cases of Lyme each year go bad. Patients are jumping up and down shouting that they are seriously sick from tick bytes, often having positive blood tests, only to be fobbed off that they're not really ill. Are patients really this stupid? I have a PhD in computer science - am I stupid too?
How did things end up like this?
There are two main reasons. Firstly, Lyme is a progressive and emerging disease, and it's only in recent years that the scale of the pandemic is clear. The second reason is the low calibre and questionable ethics of the leading researchers in the field. [5]
Almost everything we thought we knew about Lyme is wrong. This is normal in science. But the response of the leading researchers to this has been reprehensible, causing untold suffering and misery of patients worldwide. A lot of the original research is simply wrong, and was obviously wrong even at the time.
Untold damage has been done to my own health by following outdated treatment guidelines, and I'm now suffering with a disease, PTLDS, which should have been addressed over a decade ago had the Lyme researchers had an ounce of decency. Tens of thousands of others, including many children, have had their lives wrecked due to what is widely claimed is medical negligence, research fraud and insurance fraud.
Patients, researchers and physicians alike are being hoodwinked by articles like this one which fail to acknowledge the severity of the situation. I'm disappointed in the top-tier journals which do not challenge traditional dogma about Lyme disease, and have instead become an echo chamber.
Links and references
1. http://www.amjmed.com/article/S0002-9343(17)30138-9/pdf
2. https://huib.me/en/blog/item/76-fake-news-or-research-misconduct
3. http://danielcameronmd.com/fake-news-charges-do-not-give-credit-to-the-lyme-disease-community/
4. Berende A, ter Hofstede HJ, Vos FJ, et al. Randomized trial of longer-term therapy for symptoms attributed to Lyme disease. N Engl J Med 2016;374:1209-1220. http://www.nejm.org/doi/ref/10.1056/NEJMoa1505425
5. https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/19628804
6. http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf
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