Sep 27 2012

MS and Lyme Disease

The world must be a very scary place for a conspiracy theorist. In their world there is a vast sinister conspiracy that can control entire industries and professions, that supersede governments, and have almost limitless power.  In the mind of a conspiracy theorist the very people who are supposed to help and protect us are instead villains exploiting the public in the most heinous way for their own profit – and not just some individuals, but entire professions.

As experienced as I am examining conspiracy theories I always experience an uncomfortable cognitive dissonance when reading a new conspiracy theory – how can someone actually believe this stuff? Their brain must operate under a different set of algorithms from my own.

Recently I was sent a link to this website claiming, without a hint of self-doubt, that there has been a 100 year conspiracy to lie to the world about multiple sclerosis (MS). Scientists and doctors, they assert, know that MS (and many other neurological diseases, like ALS, Parkinson’s disease, and Alzheimer’s disease) is really caused by a Borrelia infection of the brain – Lyme disease.

The story the author has constructed is a simplistic cardboard caricature with the usual villains and motives. There isn’t even any imagination in this one. Because the website is monetized I always have to suspect that the author is not even sincere – they are just packaging a standard conspiracy theory for their intended audience, in whom they have utter contempt. I have no idea if this is the case, we just cannot assume that those selling conspiracy theories like this always believe their own nonsense.

In any case – what we have here is boringly predictable: Big Pharma wants to maintain their billions in profits from symptom management of disease X so they suppress knowledge of the real cause and cure of disease X and bribe doctors and researchers with funding and kickbacks to toe the corporate line and keep it all hush hush. Yawn. You can substitute any chronic illness for disease X and monetize your own website.

I am always stunned by a couple of things about such claims. First (assuming sincerity) is the utter moral and intellectual arrogance of the conspiracy theorist. They have to believe that they are better able to understand and interpret the scientific research than legions of experts in multiple related fields. Either that or that the entire scientific community is corrupt to the core.  In either case they believe their powers of perception are so keen they can see the conspiracy that others do not. Further, they casually slander entire professions with the most vile of accusations while maintaining their own moral superiority.

It’s a very black and white world with bright lines of demarcation between right and wrong and the conspiracy theorist as the white-hatted crusader.

For the record, MS is not caused by Lyme disease. MS has existed for a much longer time – Borrelia burgdorferi arose in the 1970s and probably existed for longer than that before it broke into the human population. It is possible for MS patients to become infected with Lyme and this does tend to worsen the course of their disease, but it is not a cause of MS.

After Lyme was discovered it was investigated to see if it was the cause of known neurological diseases, including MS. This was almost 40 years ago and much less was known about MS and the extent of Lyme pathology at that time. The research showed, however:

Clinical, neuropathologic, laboratory and epidemiologic features indicate clearly that tertiary Lyme borreliosis of the CNS is a distinct entity and there is no etiologic association with multiple sclerosis.

Every line of medical evidence points to the conclusion that MS and CNS Lyme disease are different diseases.

Think about how prescient “Big Pharma” must be in order to engineer the conspiracy being claimed. They must have recognized very early on that this new discovery of Lyme disease was actually the cause of MS and started manipulating the world’s medical research to keep that from ever coming out. I wonder how they figured this out before the very researchers they are supposed to control? Once you start asking these questions the house of cards starts utterly collapses – unless, of course, you are a conspiracy theorist. If you are, you just broaden the conspiracy, involved more people and institutions, and give the conspirators more and more reach and power until they are secretly controlling the whole world.

One section of the conspiracy article caught my attention as an excellent example of how conspiracy theorists perceive sinister motives in benign places. They quote from a neuroradiology lecture on a Dutch website (the internet is excellent for data mining and cherry picking). They characterize the quote this way:

What we found is deeply worrying. The radiologists are instructed in ominous, derogatory language never to disagree with the “suspicion of MS”. So when the doctor says:  “I think it should be MS”, the radiologist should just shut up and agree, even if he disagrees and thinks it’s Lyme disease.

This is what the text actually says:

If a patient is clinically suspected of having MS and the MR-images support that diagnosis, then you should not consider the possibility of Lyme disease and neuro-SLE in the differential diagnosis, because they have such a low prevalence.

There must be other ways to impress your colleagues. These diagnoses are only worth mentioning if there are clinical findings that support these diagnoses.

Yes – very ominous and derogatory.  This is all, actually, standard fare. Radiologists are not clinicians. They are not in the business of making diagnoses, but in interpreting radiographic studies. Findings on MRI scan and other such studies are rarely specific enough to establish a diagnosis by themselves (although this is changing as MR technology progresses, but that’s another story). Radiology findings need to be put into clinical context, and making a diagnosis is often a collaboration between the radiologist and the clinician.

The MRI findings of MS, Lyme disease, small vessel disease, and various causes of brain inflammation can all look similar on MRI scan – white matter demyelination. So when this is seen on the MRI scan the radiologist will typically give the standard differential of white matter demyelination in the interpretation – “This can represent, in the proper clinical setting, multiple sclerosis, Lyme disease, small vessel ischemic disease, and other causes of demyelination.” I can’t tell you how many times I have read some variation of that in the impression of an MRI scan.

This can be a bit confusing to the inexperienced and scary to patients who increasingly get direct access to their lab results. The radiologists mention everything, and it’s the clinicians job to put it into context.

Further – while MS and Lyme look similar on MRI scans they are not identical. MS often has a distinct distribution of lesions. There are “classic” MS features on MRI scan, although they are not always present. Radiologists, however, tend to cast a broad net, naming everything and letting the treating physician sort it out.

What this lecturer is saying is that radiologists should not just throw in rare diseases in the differential diagnosis on their reading if there is no clinical reason to suspect such illnesses. This is a reasonable suggestion. This was on a Dutch website, so I suspect the lecturer is not practicing in New England. Here radiologists always mention Lyme disease in the differential.  There is nothing sinister or ominous about this recommendation – it simply refers to the relationship between radiological and clinical findings in diagnosing a patient, and the proper role of the radiologist.

I don’t expect a non-expert to understand these nuances, but that is the point. The conspiracy theorist is profoundly naive about how medicine actually operates, and enthusiastically fills the void of their ignorance with sinister assumptions.

While this is all standard grand conspiracy nonsense, such accusations always take on a different dimension when they apply to people you know personally. I do not treat or research MS, but I know many people who do, including colleagues with whom I work. The notion that they are involved in any kind of cover up like this is absurd. These are academics trying to understand the underlying immunological basis of MS, improve our treatments, and help their patients.

To casually slander them as this conspiracy theorist has is vile and reprehensible. Further they are encouraging patients to distrust their doctors and the medical profession, and to forgo effective treatment for a conspiracy fantasy.

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