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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13 responses so far

13 Responses to “MS and Lyme Disease”

  1. macomeauon 27 Sep 2012 at 8:49 am

    You’d think that all the bribing of the science/medicine “establishment” would eat up the profits that “Big Pharma” is trying to protect. Especially given how many cures they’re supposedly covering up.

  2. jocorokon 27 Sep 2012 at 9:38 am

    About the conspiracy theorist’s mind. I agree with Moore more:

    “The main thing that I learned about conspiracy theory is that conspiracy theorists actually believe in a conspiracy because that is more comforting. The truth of the world is that it is chaotic. The truth is, that it is not the Jewish banking conspiracy or the grey aliens or the 12 foot reptiloids from another dimension that are in control. The truth is more frightening, nobody is in control. The world is rudderless.”
    “The Mindscape of Alan Moore” (2003)

  3. Kieselguhr Kidon 27 Sep 2012 at 10:53 am

    Not to disagree with the main thrust of the post — it’s great, and this is why I get _so damn pissed_ at anti-GMO types — but there’s some evidence that there were human infections with Borrelia considerably before the 1970′s and in fact back into prehistory. Lots of infections we’re just finding out about, that have been there a long time. When my three-year old got Lyme and a huge arthritic knee we were panicky but my boss — I worked at the time at one of the world’s most prestigious infectious disease organizations — pointed out that a lot of us who greew up in the Northeast and went into the woods are in fact seropositive for Lyme (I am!) and never had or remember having symptoms.

  4. locutusbrgon 27 Sep 2012 at 1:18 pm

    Dear Big Pharma.
    Please forward my check as soon as possible, you are very behind on your payments. If you do not make payment quickly I will be forced to disclose everything, and I mean everything. Without that check I will not be able to look my chronically ill patient in the eye with sincerity and tell them that they cannot have the Amoxicillin to treat their MS. I will have to stop burning MRI’s and reports. Most of all I will have to tell millions of lawyers that they do have the biggest class action suit of all time.
    So get on the ball. I wish it was the good old days when the church would burn you alive for saying that microbes caused illness not sin.
    Oh Well
    Sincerely
    Stephen

  5. Bronze Dogon 27 Sep 2012 at 2:10 pm

    I also tend toward the notion that conspiracy theorists need the illusion of having someone in control of our chaotic world. It’s “comforting” to the extent that they might be abnormally discomforted by uncertainty.

    I think it’s also a part of authoritarian mindsets and tribal instincts. I suspect if you asked a conspiracy theorist how they’d want to set up the world’s governments, a lot might favor authoritarian dictatorships or oligarchies led by people they trust. Though I can imagine others would favor some kind of anarchic system where grassroot mobs overthrow anyone who does something they don’t like and consider that the one and only true check and balance against people in power. The latter case seems to come up with theorists who don’t understand the checks and balances that are in place or how they work.

  6. BillyJoe7on 27 Sep 2012 at 5:17 pm

    In fact, there IS a lack of control. Especially in the USA. The liberatarian, free market political philosophy of about half the population, even those who are severely disadvantaged by it, is all about reducing control to minimum. And we all know the consequences of that. Scary. But I wonder if conspiracy theorists are more common in the USA? If so, possibly this is the reason.

  7. SARAon 27 Sep 2012 at 5:19 pm

    The thought I had while reading this is – Novella is part of the conspiracy. He is the “mouth piece” spreading disinformation.

    Think about how many mouth pieces. As #macomeau says, the cost of a proper conspiracy has to be staggering.

    But the thing that strikes me the most is the fact that they ignore human nature. You cannot get that many humans to act in accordance to your conspiracy. People will talk. Whether to rat you out, or just be be the person with the best gossip at happy hour. And that doesn’t even take into account for the general chaos of things just going wrong and accidentally revealing it all.

    Plus, and I really think medical conspiracy theorists should look seriously at this – I’m not entirely convinced that there is a good mathematical reason for the massive cover ups. Corporations always chase short term profit. The billions to be made in just a few years from curing Lyme disease or MS would far out way any other consideration for a corporation. Research is an expense not a money making venture for corporations. The palliative drugs may be constant income, but as I say, the stock price jumps from the cure. And frankly, why should a pharma corporation have any vested interest in keeping any other corporation, university or hospital in the money?

    I have the above conversation with a ‘cancer already has a cure’ conspiracy person. It has no effect at all.

  8. hippiehunteron 27 Sep 2012 at 7:27 pm

    I’m feeling a bit left out of all these big pharma conspiracies.
    Are us Registered Nurses assumed to be blindly following our medico masters blithely unaware that they have been fooling us all along?
    I’ve not read of my profession being in the pocket of big pharma and frankly its a little insulting.
    Do I have to go to http://www.whale.to/ and submit my own condemnation of nurses knowingly turning children into 3 headed monsters with vaccines and nasty kemicals in order to get the recognition we deserve?
    Nurses can be evil to you know.

  9. Davdoodleson 28 Sep 2012 at 1:25 am

    What is most telling (in my opinion) about conspiracy theorists is the vehemence with which they typically espouse their ‘beliefs’.

    It’s like they know it doesn’t make sense, but are in too deep to recant now, so they become ever more strident in their defence of it. As much to convince themselves and drown out their own doubts, as to convince anyone else.

    As Queen Gertrude said: “The lady doth protest too much, methinks”…
    .

  10. BillyJoe7on 28 Sep 2012 at 8:10 am

    “Registered Nurses”

    Yo might think you are worthy of capitalization, but get you are not even fit to pull on the apron strings of the mighty Medical Profession.

  11. Morbaneon 27 Mar 2013 at 8:45 pm

    Looks like this particular brand of woo has landed in Australia unfortunately – even though we don’t even have the tic borne bacterium responsible for Lyme Disease in this hemisphere. There’s a “Life Force Practitioner” called John Coleman distributing Byron White Formulas in Australia now. Everything from detox to treatments for Lyme Disease. He’s also written an autobiography claiming he cured himself of Parkinson Disease, pretty talented guy apparently. The scary part is he’s enlisted a growing group of General Practitioners whom he refers to as LLMDs (Lyme Literature Medical Doctors), some of which are stocking his herbal formulas and referring a “growing number of patients presenting with Lyme Disease” to him. It would seem according the LLMDs that anyone that’s immune compromised or displaying a collection of non-specific symptoms such as fatigue allegedly has Lyme Disease now. And it seems that the Australian regulatory body, the TGA (Therapeutic Goods Administration), is powerless and you could drive a truck through the loop holes for “traditional therapies” and supplements in our legislation. Although maybe we should keep that under wraps, I don’t want to broadcast that as an invitation to woo-mungers.

  12. John Colemanon 06 Apr 2013 at 8:17 am

    My name is John Coleman. It’s unfortunate that Morbane forgot to check facts before cowardly defaming me under an assumed name. There is only one true statement in the tirade above – my name is John Coleman.
    I am not a “Life Force Practitioner” but do attend a clinic in Malvern called Liforce one day each fortnight.
    Let us, for one moment, put aside the numerous studies identifying both imported and indigenous species of Borrelia (the “Lyme” spirochete) in Australia, but we cannot deny the 15,000+ Australians positively diagnosed with Borrelia infection via blood and PCR testing. The only arguments are whether there is a common indigenous species of Borrelia and whether there is such a disease and chronic Lyme disease.
    By the way Morbane, LLMD (that is Lyme Literate Medical Doctor) is an internationally recognised qualification granted by the International Lyme and Associated Diseases Society in USA after a period of study. There are very few doctors with these qualifications in Australia, unfortunately, or we would have less ignorance of the facts.
    I do not claim to have CURED myself of Parkinson’s disease, but there is no doubt that I certainly had advanced symptoms of Parkinson’s in 1995 and now live without symptoms or medication. A number of other people have achieved this also. We are not CURED, we have recovered our health. Perhaps you can do that also if you are prepared to open your mind to facts instead of introverted mumbo jumbo.
    It is true that there is a growing number of GP’s in Australia recognising, diagnosing and treating Lyme disease and co-infections. Some of them prescribe Byron White Formulas for their patients and, as the Australasian Importer, I supply the prescribed remedies either to the doctors (rarely) or to the patient on instruction. From time to time, doctors and naturopaths treating those positively diagnosed with Lyme or a co-infections exchange views for the benefit of patients. Most recently this occurred at the Tick Borne Disease Conference in Sydney during April.
    As for the TGA, I am sure they will be interested in Morbane’s views, as they are very particular about the safety of remedies offered in Australia.
    As I said above, it would be preferable if people like Morbane actually checked their facts before making defamatory comments on a public blog. Despite their cowardice in hiding behind a nom de plume, they are easily identified and, if necessary, I will take this step.
    I look forward to a more sensible and factual discussion on this site.

  13. lauson 12 Apr 2013 at 9:00 pm

    In Response To ‘Morbane’s’ comment – ‘Even though we don’t even have the tic borne bacterium responsible for Lyme Disease in this hemisphere’

    Oh really? Let’s not be ignorant and appear foolish…Allow me to educate you…

    The Tick borne bacterium responsible for Lyme Disease does exist in this hemisphere. In fact I was infected in Australia. My mother was infected by a Tick and it was passed onto me in utero. I also was reinfected by a bird mite that burrowed under my skin.

    The Government base their denial on one limited study by Russell & Doggett (1994). Russell & Doggett only tested Borrelia Burgdorferi (American strain) under the false assumption that Burgdorferi was the only strain to cause Lyme Disease. The European strains Garinii and Afzelii also cause Lyme Disease and are the most common strains in Australia. The Government did not take into account studies by: Mackerras (1959), Carley & Pope (1962), Wills & Hudson (1991), Wills & Barry (1994) whom isolated multiple strains of Borrelia (including Burgdorferi) from Australian native animals and/or people. An article I read stated that Russell & Doggett noted observing a bacteria that resembled Borrelia but did not identify it or offer an alternative name for it. Refer the following links re studies:

    http://www.karlmcmanusfoundation.org.au/lyme-information/lyme-disease-borrelliosis-in-australia

    http://www.lymedisease.org.au/about-lyme-disease/myths-surrounding-lyme-disease-in-australia/

    Birds, rodents and deer are the most common hosts of Lyme Disease. Migratory birds and stowaway rodents are not quarantined. Imported deer and livestock are not tested for Lyme Disease. Lyme infected people from overseas who reside in Australia can be bitten by ticks, mites and other arthropods. These arthropods can then pass the disease onto others. Therefore, how can one logically state that Australia is somehow immune to Lyme Disease?

    Lyme Disease induces an inflammatory response from the immune system. It is therefore responsible for many autoimmune disorders hence the exponential rise in autoimmune and autism spectrum disorders (and yes; ASD is an autoimmune disorder – inflammation of the brain).

    As for your inflammatory and misinformed comments regarding John Coleman, Naturopath, Lancefield. He has supplied me with Byron White Formulas (BWF) after an extensive consultation, questionnaire and communication with my medical Doctor. He is very thorough, educated and compassionate. I have progressed extremely well on the BWF. My:

    - inflammation has dramatically reduced
    - gum disease and tooth sensitivity have resolved
    - arthritic pain and stiffness is resolving
    - trembling in left hand has ceased
    - body temperature is now regulated so that I no longer feel cold when it’s 25oC
    - compromised cognitive processing has resolved
    - auditory processing disorder has resolved (background noise no longer overpowers foreground
    noise)
    - Asperger traits have disappeared

    The BWF are hitting Lyme and Co Disease hard.

    To explore Lyme Disease in Australia further and educate oneself contact The Lyme Disease Association of Australia (LDAA)

    http://lymedisease.org.au/

    LDAA will direct people to accurate testing (IGeneX) and to Doctors who treat Lyme Disease. Local laboratories do not have the sensitive testing protocols that IGeneX have and therefore can result in false negatives.

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