The Lyme Disease Controversy

This article covers the main areas of contention surrounding Lyme disease. Whilst the medical profession has traditionally regarded Lyme disease as fairly mild and easily treated, there are now many patients and doctors who are claiming that the current treatment guidelines simply don't work and leave many patients with life long symptoms, and they are being systematically dismissed and ignored.

What is the controversy?

Many thousands of patients with generic symptoms of illness, pain, mental problems and fatigue claim to have Lyme disease.

Some claim that scientists, insurers and government institutions are colluding to deny research, testing and treatment to them. Some claim that Lyme disease came from a government research lab located close to the original outbreak. Some claim that the attempts to develop a vaccine lead to many patients becoming seriously ill, and that testing methods were deliberately changed to not detect this condition, which as a result caused the standard blood test to be inaccurate. Organisations such as ActionLyme promote this view. (The “ActionLyme” camp).

Others claim that some researchers and institutions are approaching Lyme disease with a closed mind, and don’t realise that the original research into Lyme disease was at worst dishonest and deeply flawed, and at best simplistic and overly optimistic. They say that the testing is unreliable and misses many cases, and that people often remain infected and ill after standard treatments. Organisations such as the International Lyme and Associated Diseases Society, and the Lyme Disease Association hold this view. (The “ILADS” camp).

And other scientists and well respected organisations claim that Lyme disease is a storm in a teacup, has become a fashionable illness, and that existing testing and treatment is extremely effective. They say that whatever these patients have, if anything, it isn’t Lyme disease. Organisations such as the American Lyme Disease Foundation, the Infectious Diseases Society of America, and the American Center of Disease Control fall into this category. (The “IDSA” camp).

Controversy around the definition of Lyme disease

Lyme disease is a bacterial infection that is most commonly spread by ticks (minute bugs that attach to your skin and feed off your blood). It causes a variety of very nasty symptoms and often leaves patients incapacitated, suffering neurological problems, pain, chest inflammation, joint inflammation and being unable to work and function normally.

The IDSA camp have the narrowest definition of Lyme disease, which they restrict to the active infection stage of the disease, which they say only occurs before antibiotic treatment.

The ILADS camp prefer to treat the whole patient and talk about “Lyme and associated diseases”, including additional infections and parasites carried by ticks and post-treatment symptoms. A recent article the Journal of Chronic Disease proposes that post-treatment symptoms should also be considered part of the disease. This seems to make more sense from a patient’s perspective.

Others (the ActionLyme camp) argue that Lyme disease is fundamentally an illness of the immune system, caused by substances released by the Lyme bacteria. Thus even killing the bacteria does not cure the patient, as is often observed. The ongoing symptoms are due to an incapacitated immune system. For this reason they sometimes refer to Lyme as an AIDS-like illness.

Controversy over diagnosis

Since Lyme disease has such vague symptoms, it is often called “the great imitator”. This makes diagnosis a nightmare, for the patients anyway. The most controversial point is the accuracy of the standard blood test.

The IDSA camp claim that the blood test is extremely accurate, whereas other research papers say that the blood test is extremely inaccurate, finding just over half of cases. Some suggest this is due to the Lyme bacteria disabling the immune response, a key requirement for the blood test to work. A recent paper found that the blood test for HIV is 500 times more accurate than the test for Lyme. Furthermore, the ActionLyme camp claim that the blood test was deliberately degraded to exclude so-called neurological Lyme, a late manifestation of Lyme disease, and think there is criminal culpability behind this decision (thus the "Lyme Crime"/”Cryme”).

It is also disputed how often patients get a “bulls eye rash”, which is a red ring occurring at the site of the tick bite. The IDSA camp claims that this rash occurs in most cases, whereas the Lyme Disease Association say that the rash occurs in about 1 in 4 cases.

Controversy over alternative diagnoses

Since IDSA claim that the standard blood test is almost completely reliable, it is only natural that they say that any other method that contradicts this blood test must be flawed. However the ILADS doctors noticed that the blood test seemed to be missing very many of their patients who had all the classic symptoms and were responding to antibiotics. So they diagnose instead based on symptoms.

IDSA says that such diagnosis is unreliable because the general population experiences pain, fatigue and feeling unwell.

There are other blood tests, including viewing live blood samples under the microscope and culturing the bacteria in a lab. Since these techniques find many more cases, IDSA dismiss these tests are unreliable, unvalidated, fraudulent or are a result of contamination.

Controversy over numbers
The Center of Disease Control recently updated the number of reported cases of Lyme disease in the US to 300000, up from 30000. In the UK, the official figure from Public Health England stands at around 3000 cases per year, but Caudwell Lyme charity claims the true figure is nearer 45000. In France, around 33000 cases are reported each year. Researchers claim that Lyme disease does not exist in Australia, citing "no evidence", but many patients claim otherwise.

Deaths from Lyme disease are harder to come by. Since Lyme disease is a well evolved parasite, it does not intentionally kill its host.

Controversy over treatment

ILADS and the Lyme Disease Association observe that up to half of patients remain very ill after a standard 2-4 week course of antibiotics. They therefore surmise that they still have Lyme disease, and the treatment failed. They also point to numerous studies claiming evidence that bacteria are still present, something that IDSA regards as a hoax because it so flatly contradicts what they believe.

ILADS believe that treatment should be based on clinical response, and that patients should be treated until they get better, not until some arbitrary date. IDSA point to studies that do not show benefit on giving antibiotics longer term, ILADS say these studies are flawed, and ILADS point out that the current guidelines are based on incorrect expert opinion rather than have any sound basis or offer any evidence that the bacteria are gone.

Controversy over alternative treatments

In addition to long courses of antibiotics, there are numerous alternative therapies for Lyme disease. These include: Herbs, Rife machines (destroying bacteria with resonant frequencies), ozone therapy, oxygen therapy, stem cell therapy, heating up the body, homeopathy, pulsing antibiotics, functional nutrition, ketogenic diets, biofilm busters, cyst busters, acupuncture etc.

Some people claim that these treatments are curative, but most people agree that these treatments are at best partial, have health risks, and that people often get better anyway. With the exception of antibiotics (which seem to work in some cases), I side with IDSA on the point that it’s very hard to recommend treatments that are not fully understood. ILADS deserve criticism on this point for selling treatments whose effectiveness is not fully understood, and patients can spend a lot of money of treatments that are ultimately ineffective. If the treatments work, please publish a study.

That said, many patients do find success with these treatments, particularly antibiotics, and treatments should be based on clinical response. Given the severity of the symptoms, patients should have the choice on what therapies may work for them. Mainstream medicine just sends these people home with paracetamol, and hope they don't really have Lyme disease.

Controversy over the Lyme disease industry

Since IDSA seem oblivious to the suffering of patients with Lyme disease, and believe their treatments to be effective, it follows that all of these alternative treatments and tests are a waste of money, and there are doctors who are preying on vulnerable people and fool people into thinking that they have Lyme disease, invent bogus test results and enrol them on expensive and futile treatments. While there are some charlatans, and perhaps functional nutritional has its limits, there is no real evidence of widespread fraud.

The reality is that people rarely just go to the doctors for the purposes of attention seeking, and patients quickly cotton on to treatments that don’t work. Patients only go private due to poor treatment by their regular doctors. ILADS on the other hand claim that many people go undiagnosed, that their treatments help many, and that mainstream medicine is outrageously ignoring the suffering of people with Lyme disease.

The ActionLyme camp goes further and claim that organisations such as IDSA and the CDC know that there is a problem but are deliberately covering it up for political and financial motives.

Controversy over money

As well as accusations of profiteering by ILADS, there are counterclaims that the US medical insurance industry, reluctant to pay for expensive and open-ended treatments, have effectively bought a number of scientists (such as the American Lyme Disease Foundation) and buy influence in the CDC. There are claims that scientists own patents behind the standard blood test, who fraudulently exclude other more accurate blood tests for profit. There are further claims that the blood tests were changed to hide the fact that the vaccine for Lyme disease caused/activated latent Lyme disease. There are also claims that research funds for Lyme disease were misspent.

I don’t know if any of this is true. I hope it isn’t.

Controversy over Post-Treatment Lyme Disease Syndrome

Some patients have enduring symptoms following treatment of Lyme disease. These include fatigue, pain, nerve and brain symptoms long after the patient is supposed to be “cured.” These can often be life changing.

The Center for Disease Control acknowledges post-treatment symptoms and says their cause is unknown. ILADS and many Lyme patients regard post-treatment symptoms as a simple treatment failure, and point to hundreds of peer-reviewed studies showing bacteria persisting long after treatment. They also claim that while the Lyme disease may be in remission, patients also have other infections such as bartonella, babesiosis and chlamydophylia pneumoniae which are themselves very hard to shift and require long courses of antibiotics. They claim that “post-treatment lyme disease” is simply Lyme disease, and it’s a perverse fudge because the IDSA scientists put their own reputations ahead of patient care and cannot admit their mistake.

IDSA scientists point to studies showing that post treatment symptoms almost always resolve within a year. Yet the Lyme Disease Association says that nearly half of treated Lyme patients develop permanent disability. The same study that IDSA often cite claiming that prolonged antibiotic therapy is ineffective (published in April 2016 in the New England Journal of Medicine), also shows that Lyme disease patients in fact remained extremely ill for the one year duration of the study. IDSA cannot cite a paper and then say “yea but we didn’t mean that bit.”

My own experience (yes I have/had Lyme disease) is that these post-treatment symptoms are awfully infection-like, and similar in many ways to pre-treatment Lyme disease.

The ActionLyme camp regard post-treatment symptoms as an immunity disorder triggered by the Lyme bacteria, and that patients are also suffering from a range of bacteria and viruses thriving on a compromised immune system.

Controversy over chronic Lyme disease

Many patients report long term symptoms related to Lyme disease, long after “successful” treatment. Some of these will have had positive blood tests and are fairly certain to have had Lyme disease, can can definitely relate their current symptoms to a tick bite or treatment. Other people have similar symptoms but do not recall a tick bite, a rash, or may have a negative blood test, or had a positive blood test using “unvalidated” tests. Some patients may have had treatment, others not. Some patients have additional infections, or have Lyme disease plus other conditions.

IDSA claim essentially that symptoms after treatment simply is no longer Lyme disease. Patients find it perverse to be told that they no longer have Lyme disease when they are still very ill. ILADS cite hundreds of peer-reviewed papers showing that bacteria are present long after treatment, yet IDSA do not acknowledge this, and even if true, that there is no evidence that remaining bacteria are responsible for symptoms.

The ActionLyme camp regard chronic Lyme disease as an AIDS-like condition that is only initially caused by bacteria. This is not as crazy as it sounds, there are some recent reports of people developing allergies to meat as a consequence of tick bites. Parasites have evolved to reprogram the host and evade our immune systems over millions of years.

Controversy over the Lyme disease vaccine
The original Lyme disease vaccine, LymeRix, was approved in 1998. The IDSA camp maintains to this day that the vaccine was safe and effective, but that patient hysteria, combined with an anti-vaccine momentum put undue pressure on the FDA to withdrawn the vaccine.

ActionLyme claims that LymeRix caused severe harm to many patients, because the compounds used in the vaccine are the very same compounds that cripple the immune system and cause chronic Lyme disease.

Controversy over Lyme hysteria

The tragedy in all of this is that patients are being blamed for being ill, and are naturally angry at their lack of recognition and treatment. The CDC have even referred to them as “Lyme Loonies”. What I believe has actually happened is that the internet has allowed patients to communicate and has shown a pattern of illness that simply wasn’t apparent before. Lyme disease is quite common, and whilst most cases resolve successfully, it now seems that a proportion of these cases go bad.

The Lyme Disease Associate says up to half experience life-long symptoms, and given the large number of cases, millions worldwide annually, so the number of members inhabiting these forums is by no means excessive. Tens of thousands of people are becoming Lyme zombies each year, with no hope of treatment. This is the real story. Not that there are doctors who are trying to help them.

The real story is that patients are being harmed by outdated dogma that treats Lyme disease as a nuisance infection that rarely causes serious complications, and is in any case easily treated. This simply isn’t true.

I have moved in these forums for many months now. Of course, not everyone who thinks they may have Lyme disease actually does. But their stories are similar. Many people have fallen severely ill after tick bites. Some have had a diagnostic rash, and many have positive blood tests and have been treated for a while by national health services, then left to rot. Yet the characterisation of these people as “gullible”, “attention-seeking”, or any other nasty names that they get called is grossly unfair. These people are compassionate, intelligent, well read, and have previously lived active outdoor lives, the exact opposite of a typical hypochondriac. They don’t drink the Lyme kool-aid. They know which therapies help them, even just a little bit, and support each other the best they can.

Where does the truth lie? We should not be surprised that there is a range of scientific opinion on Lyme disease. Scientists disagree all the time, as new data and new theories are developed. There is a huge amount of new research coming through. What is surprising however is the extent to which patient experience differs from the theory of Lyme disease, and how reluctant leading researchers and authorities are to take on board the new findings. The new findings show that the blood tests for Lyme disease are not particularly accurate, that the bacteria can cause irreversable immunosuppression, that there are many different coinfections, and that in many cases the bacteria persist after treatment. Like all scientific theories, they get refined. The official line on Lyme disease - that it is generally mild, self limiting, and treatable is mostly correct. Yet what has become apparent in recent years is that a proportion of patients do not recover according to the rule book. Given that millions of people get infected with Lyme each year, this is very concerning. What is going on? It simply isn't credible to say that all these thousands people claiming to be ill are deluded hypochondriacs. Some of these case are equivocal - we can't be sure if all of them have Lyme disease - but others are fairly clear cut. My own experience is one - my official blood tests were strongly positive and my health went to hell due to treatment with a short course of antibiotics. What isn't quite known is why some people suffer such long term effects, or seem to take so long to recover. It should be the case that the top researchers, the top journals, and official government agencies are the gold standard for truthful information. If I hadn't experienced Lyme disease myself, I would probably still believe that.