I don’t like putting a lot of FB stuff on here. Would send you the odd informative content, usually a link, if you like but don’t have your email.

I seem to remember reading somewhere about remote people in the tropics, ie with fairly constant day length and no clocks. They’d be up at dawn, active in daylight, then sit around by firelight for three hours or so before sleeping. I guess that would be our default state before we got civilised.

Chronic Lyme Disease – Another Negative Study

and

Lemons and Lyme: Bogus tests and dangerous treatments of the Lyme-literati

Confirmation bias and the Lyme-literati

Individuals who believe they have Lyme disease that was missed by their own providers will sometimes seek out so-called “Lyme-literate” providers; I’ll call them Lymlits. Often these individuals believe they are suffering from chronic Lyme disease (a non-entity discussed elsewhere), and are hoping to confirm this diagnosis. Lymlits provide the confirmation bias these patients are looking for. They quickly empathize with these patients and offer what they claim to be a more informed approach to their diagnosis and treatment. Like all alternative medicine providers (and make no mistake, that is exactly what we are talking about here), they are quick to cast the patient’s more conventional provider as shackled by convention, or to Big Government or Big Pharma. Often they claim a more holistic approach as well, infusing other sCAM modalities or spiritualism into the mix. Again, like many sCAM providers, they claim special knowledge and insights not available to or ignored by conventional providers. To the sCAM-credulous, the Lymlits represent an open, understanding ear and long-sought answers to their problems.

The websites of Lymlit providers clearly pander to the fears, anxieties, and preconceptions of their clients. Often they contain entire sections devoted to the “problem” of undiagnosed (but not over-diagnosed) Lyme disease, and how the Lymlits can help uncover the diagnosis and provide the correct (often dangerously incorrect) treatment. The patients I see at my practice who have bought into a wide variety of woo diagnoses and treatments have often been seen by providers of the Northampton Wellness Center, and the over-diagnosis and treatment of Lyme disease is no exception. Their services are so typical of this this kind of practice that I will use them as an example. A quick perusal of their website’s Lyme disease section should be of concern to anyone who cares about the practice of EBM and SBM. Like many sCAM practitioners, this group does not serve as primary care providers but rather as “consultants”. This is a misnomer, however, as they are rarely consulted by science-based providers. Rather, patients typically self-refer. Using a “holistic” approach, they claim the ability to help patients with chronic illness who have not been helped by their conventional providers. What they offer is reassurance that they have come to the right place, that they will get the answers they are looking for, and receive treatments not available through most providers. Ironically, their diagnostic tests and treatment modalities are usually described with terms borrowed from true science, and are often claimed to be evidence-based as well. The Northampton Wellness Center’s website seems to do everything possible to reaffirm people’s fears about their chronic or undiagnosed Lyme disease. It explains why the organism is so tricky to diagnose and treat (it really isn’t), and how they can do so safely, effectively, and often “naturally” and “holistically”. They hype the existence and importance of biofilms, co-infections, weakened immune systems, and heavy metals in the pathogenesis of Lyme disease, and explain how they can help diagnose and fix these problems. And unsurprisingly, the Northampton Wellness Center website has the clear red-flag seen on many other sCAM practice websites – the ubiquitous web store. These stores typically hawk all manner of supplements, potions, and snake oils to treat your every ailment. I couldn’t access the Northampton Wellness Center’s web store without being a patient, so I don’t know exactly what they offer the chronic Lyme sufferer. Perhaps most alarmingly, Lymlits like those at the Northampton Wellness Center hype unapproved and non-recommended laboratory tests for diagnosing Lyme disease in their patients. One example is an extended, purportedly-superior Western blot assay. According to their website:

Unfortunately, most laboratories leave out the most specific bands, 31 and 34, on their Western Blot assays. If we use a special laboratory and get a positive band 31 result, we can confirm that this is truly related to the Lyme organism by doing a “31 kDa epitope” test, to make sure it is not positive from a cross-reaction, which could occur from having a chronic viral infection.

Without getting too deep into the weeds here, the Internet is rife with conspiracy theories about why the CDC would fail to include the 31 kDa band in the group of bands required to be present for a positive Western blot interpretation. At the heart of the conspiracy is the belief that this band, which represents OspA, the outer surface protein of B. burgdorferi, was left out because OspA was the main component of a Lyme vaccine (Lymrix) which is no longer available but was given to nearly 2 million people before it was taken off the market. The allegation is that the band was not included because people who had received Lymerix would likely test falsely positive. Given the limited number of individuals vaccinated with Lymerix, this seems an unlikely explanation. Another allegation is that the CDC and FDA do not want people to be diagnosed with Lyme disease as a result of a conspiracy involving the insurance industry. However, as explained by Halperin et al. in the book Lyme disease: an evidence-based approach, the explanation is much more mundane (and rational) than this:

the bands selected for use in the Western blot were chosen not because they are unique to B. burgdorferi but rather on the basis of statistical considerations that included an analysis of those combinations of bands that provided the best predictive values for well-characterized specimens known to have been obtained from individuals with and without Lyme disease

In other words, though OspA is a relatively specific marker for infection with B. burgdorfori, in the assessment of actual patients it was not found to be among the group of bands which best distinguished Lyme disease patients from controls.

Wblot

They go on to add that that:

laboratories using criteria other than these must establish the validity of their own criteria based on equally rigorous scientific assessments.

Scientists are actively working on better, more sensitive and specific diagnostic tests for Lyme disease. But it will take reproducible and validated results to move these tests forward. Not the direct marketing of unsupported tests to Lymlits by specialty labs. Other examples of unapproved and non-recommended tests discussed on the Northampton Wellness Center website and recommended by many Lymlits include dot-blot testing, PCR, and T-lymphocyte response assays. The CDC clearly states that none of these tests are sufficiently reliable for diagnosing Lyme disease. In 2005, the CDC became so concerned about the proliferation of non-validated and potentially dangerous tests for Lyme disease, that it issued an alert in its Morbidity and Mortality Weekly Report (MMWR). In April of this year, the CDC issued yet another warning about a new laboratory-developed culture method that has been made available commercially. Again, the CDC has warned that the results of these types of “home-brewed” tests should not be relied upon. According to the warning:

Published methods and results for this laboratory-developed test have been reviewed by CDC. The review raised serious concerns about false-positive results caused by laboratory contamination and the potential for misdiagnosis.

The CDC’s warnings are justified. While Lymlits claim these specialized tests are better able to detect Lyme disease than those used by conventional practices, what they do, in fact, is produce a predictable increase in false-positive results. Thus, by pretending to have superior testing options than those provided by the patient’s primary care provider, Lymlits provide patients with the elusive Lyme disease diagnosis they are searching for, and then offer unnecessary treatments for a non-existent infection. Ignoring the science-based treatment recommendations of the Infectious Disease Society of America (IDSA), Lymlits often recommend dangerously long, sometimes intravenous courses of antibiotics, in addition to myriad other potentially dangerous sCAM modalities for the treatment of these questionable infections. Additionally, the misdiagnosis of Lyme disease in these individuals potentially delays the diagnosis of other, real conditions, which then go untreated.

Ironically, Lyme advocates and Lyme-conspiracy proponents were at the forefront of the manufactroversy surrounding the demise of Lymerix, the first FDA-approved Lyme vaccine. Although Lymerix, whose main component was the OspA protein, was not the most effective vaccine (with an efficacy rate <80%), it was still a cost-effective preventative strategy for people at risk in endemic areas. Unfortunately a slew of adverse events reported soon after the vaccine was licensed, combined with an irresponsible (but predictable) media storm, put a chill on the use of the vaccine, eventually leading to its economic failure and being pulled from the market. Pre- and post-marketing studies involving large numbers of patients failed to link any significant adverse events to Lymerix beyond the usual injection site redness and swelling and occasionally fever seen with other vaccines. There was some evidence that a small subset of people with the HLA-DRB1*0401 genotype might be at risk for developing an autoimmune reactive arthritis in response to the vaccine, though the data was inconclusive and did not prove causality. Still these concerns, combined with the spreading fear of unsupported adverse events and the ensuing media frenzy was enough to put an end to the vaccine, a vaccine that could have led to the prevention of many cases of Lyme disease.
Conclusion: Lymlit tests are not supported by good evidence

Lymlit doctors claim they are providing their patients with a service that most others are either unwilling or lacking the knowledge to provide. They balk at the argument that these tests are not supported by sufficient evidence of validity, citing junk science, data from the proprietary labs themselves, or anecdote to support their position. These arguments are often shrouded in conspiracy theory, invoking closed-door sessions in which physicians and scientists do the bidding of Big Pharma or the insurance industry. So-called Lyme advocacy organizations have evolved to support individuals who believe they have chronic Lyme disease or Lyme disease undiagnosed by their doctors. While research is underway to develop even more sensitive and specific tests for diagnosing Lyme disease, the current strategy recommended by the CDC is the best we have to date. Unfortunately, as long as there are providers willing to pander to conspiracy theorists and to patients looking to confirm their fears, people will continue to be needlessly treated, and our societal approach to science will move further back in time.

Tags: children, chronic Lyme disease, complementary and alternative medicine, diagnostic tests, IgG blood tests, IgM blood tests, Infectious disease, Lyme disease, Lyme-literate MDs, pediatrics, Scam, Western blot

Posted in: Diagnostic tests & procedures, Science and Medicine
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Let me be a little bit controversial, and recommend a psychologist to cure your chronic lyme disease.

Tom – this is a US Oncology Doc’s experience of LD testing and diagnosis. If you don’t like the LD content, stick with it, at the end is the moving story of his heart transplant.

oops, started watching it…

The thing is with mavericks like Dr Spector, is that 99 times out of 100 they are wrong – Peter Duesberg, once an eminment scientist worthy of a nobel is now a nobody due to his continual AIDs denialism.

The further they climb, the harder they fall – I’ll keep listening to the mainstream consensus for now – until a good review offers some credible evidence. As it stands, there is none.

My ex likely developed AVNRT due to an infection of flu, there is no way in hell he can prove that had anything to do with chronic lyme. Developed arthitis and heart issues after being stressed and overworked for four years in middle age……must have had lymes…lol.

He seems like a massive bellend, eminent in his field so thinks that his opinion overules that of cardiologists and infectious disease specialists.

Bill C-442 and “Chronic Lyme Disease”: the parallels with “chronic brucellosis”

‘Chronic brucellosis’ disappeared following the medical community’s insistence that no evidence supported the diagnosis, and yet, despite similar concerns and skepticism, the idea of chronic Lyme disease is only gaining momentum today. This trend of patients dictating the details of their disease coupled with physicians hesitant to offend or upset can only result in confusion, misdirected care, and ultimately harm to the patient.

Ya’ll suffering from mass psychosis.

Does this guy seem sane to you?

http://www.duesberg.com/

Someone that you should listen to and think, yeah AIDs isn’t caused by a virus….it’s caused by something else!!!!!!

Lol….also….UC Berkley again. Anyway, don’t get upset – once I’ve banged the idea that you’re not sick into you, you’ll magically get better. It’s amazing.

Let me add, people don’t even know how to be scientific mavericks these days either. You don’t go on tv with some SOB story about your life and some anecdotal evidence, you go and quietly beaver away for years on some ground breaking work so that the evidence is utterly convincing – shock the world and then say “I told you so” to everyone that doubted you, win a nobel and walk away from it all never to be heard from again – so that you’re talked about in hushed tones in dimly lit academic corridors for the next 50 years. If you think you’re right, walk the walk.

Let me be a little bit controversial, and recommend a psychologist to cure your chronic lyme disease.

Tom – if you want to be listened to then you’ll need to lose the above insult. No need for that, it’s not conducive to intelligent discussion.

Hmmm, says the woman who suggested not long agi that ‘the NHS’ just want some people to go away and die. Pot meet Mr kettle

Thanks Tom. It might be confirmation bias at work but that long quote supports my own feelings on the matter.

I seem to remember reading somewhere about remote people in the tropics, ie with fairly constant day length and no clocks. They’d be up at dawn, active in daylight, then sit around by firelight for three hours or so before sleeping. I guess that would be our default state before we got civilised.

There was a recent study IIRC that dismissed this idea. They simply went to the most un-touched hunter-gatherer societies they could find, lived with them a bit, and found that they sat around the camp fire chinwagging til late at night just like everyone else does.

I’m not sure if there’s misguided cynicism or just bad trolling going on here.

I can tell you, from first hand experience, that it is very, VERY unpleasant to become ill with an disease that the NHS is woefully unequipped to diagnose, let alone treat. And we’re just talking about LYME here, not even co-infections that often massively complicate things.

NHS have barely even heard about those, so you had better hope you don’t hit the jackpot when you’re out biking, Doxycycline will barely touch Babesia or Mycoplasma that often come with tick bites. You mention those terms to a GP and they will likely look blankly and go scurrying for a reference.

Co-infections like these OFTEN make mono antibiotic therapy fail, EVEN if you catch it early enough.

So imagine if you’ve had your standard 2-3 week Doxycycline therapy and your GP says “oh you’re fine, off you toddle” – when you still have a Babesia co-infection that won’t go away until you treat it with Mepron and Zithromax. Sometimes Babesia will hit the patient 2 months after exposure, long after that Doxycycline has finished.

Oh but wait… you’ve had your 3 weeks of Doxycycline so you’re fine. Best go and see a psychologist then? 😆

This is why Lyme Literate doctors are required, until the point where GPs become more aware and specialists less entrenched in outdated means of testing, treatment and understanding. It is a highly complex disease and it’s not going away.

I’m stunned that we are still so backward in how we look at this.

Chronic Lyme disease doesnt exist or at least isnt caused by virus left in the body, saying that it does/is – makes you as bad as an aids or global warming denialist. It is literally that simple. That’s the level of opposition to evidence that lymies operate at.

Everythung you’ve just stayed is quite literally made up, people laugh at some of Jambalayas opinions on brexit – but he hasnt got anything on the above post.

But yes, psychogenic disease is terrible and requires treatments other than high doses of various antibiotics.

Quite why you think you’re entitled to multi drug long term anti biotic therapy despite a lack of evidence for their effiacy is beyond me.

Antibiotics are a strategic resource for all of humanity, that are rapidly losing their effectiveness due to over use. The level of arrogance to think that your western yuppy disease warrants their further deterioration pisses me off to the core.

Tom, I’m not sure if you are just a hobbyist or an over-zealous med student, but perhaps read Buhner’s work as I have suggested. It is quite enlightening.

Once you have done that, if you want to attempt to pick apart his work be my guest.

Many have wanted to and failed, because he has done his homework, he is a biochemist at heart and has been treating Lyme and co-infections for years.

Perhaps look at the bigger picture. Not much more I can say without wasting the rest of my evening doing your research for you.

CG you have Mail

Im not even going to waste my time with him, if he had something real to say it would be found in a literature review in Nature. He doesn’t, so he wrote a book. Btw, all the current systematic reviews indicate that there is no evidence for co-infection in Lymes.

I’m a BmedSci grad, that’s been accepted on an Infectious Disease masters at a top school – with a few years experience in molecular biology…not some med student or hobbyist.

I’m suprised some of the other angry scientists and medics like Zokes and DrJ havent weighed in.

slowoldgit – Member

I remember trimming yew hedges and bagging up the cuttings to be picked up by a truck. They were used to make tamoxifen, I believe. It will have been a taxol derivative that the yew clippings were used for – a cancer drug. Very complex natural product that cannot be synthesised in a cost-effective way in the lab, so has to be made from natural pre-cursors.
Tamoxifen is also an anti-cancer drug but a different molecule that is easy to synthesise.

I assume Tom_W1987 also still thinks the world is flat. 😀

Just because something cant be proven by current levels of research/understanding doesnt mean its not real for those who have it.

But then again its clearly just easier to deny its real and suggest that we all need to see pyschologists than have an open mind.

See also; ghosts, aliens, fairies and religion.

You missed off unicorns and yetis

@ c_g – I’m willing to believe you’re no longer a teenager, but young in mind still…

http://www.telegraph.co.uk/science/2016/10/31/smartphones-and-tablets-in-bedrooms-disrupt-sleep-even-when-swit/

… the things could still be a distraction.

And Garry, thanks, I guess the management thought the detail was beyond the grasp of we gardeners. I ought to add – we took it seriously, nothing but yew was collected, we took care to exclude anything else, there would be no trace of weeds, dead leaves and such.

And things that go bump in the night, eh?

slowoldgit – thanks! Have been pretty diligent re EMF so extremely rarely have a phone in the bedroom and, in any case, there’s no mobile signal where I live. Had made a conscious decision to limit use of mobile phone. Tablet stays firmly in the lounge, Kindle battery ran out yonks ago as it just doesn’t get used, never had a telly in the bedroom either.

It’s the overwhelming fatigue though, never had anything like it. 😐

c_g: there might be something for you here…

https://www.newscientist.com/round-up/sleep-guide/

… I have the copy if the linky doesn’t work.

Thanks sog and a shame that there’s only a limited amount of info due to it being subscription only.

May be worth experimenting with stopping PC use a couple of hours before retiring but I think the biggest problem is that my mind won’t switch off due to excessive reading. Appreciate there’s an adjustment period due to becoming inactive although I do try to get out regularly for little walks to enjoy these gorgeous Autumn colours.

Don’t really want to take any more pills but may have no option.

slowoldgit – thanks! Have been pretty diligent re EMF

It gets even better.

Are you trolling?

I assume Tom_W1987 also still thinks the world is flat.

I assume that you still think that Phrenology is a real subject.

‘Genes and age determine susceptibility to Lyme disease’

https://www.sciencedaily.com/releases/2016/11/161104102026.htm

Some interesting research there.

Is it not pretty much true that

‘Genes and age determine susceptibility to Lyme disease’

?

I think this Tom_W1987 chap needs to stop sitting on the fence and just speak his mind for a change…

Interesting stuff.

Anyone got any knowledge of doctors in central Scotland which good knowledge of Lyme? I am getting a flare up of symptoms which fit the pattern of lyme which I have had on and off for decades. Of to my GP next week but I want to be well informed beforehand.

Tom – medicine is not static. What was once not thought to be true can become the accepted truth – see the acceptance of chronic fatigue syndrome for an example. Even the nHS now accepts there could be long term implications from Lyme – completely denied a few years ago

I’m a long-term lurker on the forum, and regularly find myself coming here for advice from like-minded people on everything from tyre choice to kitchen appliances! Resurrecting this post as I’ve been having some issues over last 6 months, wondering about Lyme as cause and looking for some advice / experiences of testing and treatment options. Would anyone on here be willing to PM?

paul0 – have sent you a PM.