False: "Lyme is unlikely to cause ALS"

A misinformed neurologist once said: "It would be unusual for the bacterium that is responsible for Lyme disease to lead to both upper and lower motor neuron signs and symptoms as well as the progressive motor weakness and paralysis that characterize ALS."

Sure it is unusual - that is why for each case of ALS, there are many more cases of Lyme! It is of course totally irrelevant how great the statistical likelihood is that neuroborreliosis causes ALS symptoms. There are roughly 30,000 yearly cases of Lyme reported to the CDC in the US, with an additional 60,000 cases reported as "probably Lyme". Experts estimate that the actual numbers may be three to ten times higher. Sticking to the CDC data, it would mean that if Lyme only in about 5% of cases ultimately causes ALS symptoms, that all ALS cases would be attributable to Lyme disease. And if Lyme disease only in 1% of cases results in ALS, then still about a quarter of all ALS cases would be caused by neuroborreliosis. 1% would be a good guesstimate, as the Halperin study saw 12.5% of ALS patients strongly improving on antibiotics (Ceftriaxone), and 12.5% rapidly deteriorating - both indications of a bacterial infection in the CNS.

The first paragraph of the Halperin paper tells us that at least 12% of bulbar ALS patients have evidence of Borrelia spirochetes in their brains: "Cerebrospinal fluid was examined in 24 ALS patients - 3 (all with severe bulbar involvement) appeared to have intrathecal synthesis of anti-B burgdorferi antibody."

What does this mean in layman's terms? From Wikipedia:

"Intrathecal is an adjective that refers to something introduced into or occurring in the space under the arachnoid membrane of the brain or spinal cord. For example, intrathecal immunoglobulin production means production of this substance in the spinal cord."

Lyme disease can cause ALSSo those three ALS patients with severe bulbar involvement had Borrelia burgdorferi bacteria inside their brain or spinal cord, because beneath the membrane protecting those organs, their immune system was producing antibodies against those bacteria. Less than 1% of the general population tests positive for Lyme, so 12.5% positivity clearly suggests actual infection instead of a statistical anomaly.

25% of ALS patients receiving the antibiotic Minocycline deteriorated markedly. The oral antibiotic Minocycline in the dosages used in the trial was merely mildly bacteriostatic and thus "stirred up" the spirochetes, trying to migrate to lesser tissue concentrations. This understandably wreaks havoc in the brain stems of ALS patients. Some deteriorations may be attributable to Jarisch-Herxheimer reactions. The study made it impossible to identify improvement in individuals and only presented a general trend.

Doctors often use statistics as an excuse not to test for troublesome-to-treat conditions. Specifically, they abuse a general lack of understanding of statistics in the average patient. How many percent exactly is this "unlikely", and can the good doctor back up his opinion with facts? As shown, 5% would account for all ALS cases. 1% would account for a quarter of all ALS cases. Is 1% unlikely enough? Opinions are only as good as the hard data to back them up. Using the same insane argumentation of "Lyme rarely causes ALS", doctors routinely refuse to test the ALS-diagnosed for Lyme disease. In their pathological circular logic, they perpetuate their misconceptions.

Because if you don't test for Lyme, how will you find out whether a case of ALS is caused by it? How can you maintain accurate statistics of Lyme-ALS when you refuse to test? It's like claiming that criminal psychopaths don't commit any more murders than ordinary people, while refusing to test convicted criminals for psychopathy. Again it's just an opinion, and doctors with such unfounded opinions simply say: "I don't want to get into the can of worms also known as Lyme disease - let's just keep things nice and easy and not even go there".

Statistical likelihoods are irrelevant when the life of a person is at stake. The cost of a Lyme test is trivial compared to its potential to save the life of the patient, unlikely or not. And we say it again: All commonly used Lyme tests are so unreliable as to be worse than useless. If you do get tested, make sure you do an antibiotics-provoked test done by IGeneX, Bowen Research or a similar lab that offers reliable tests - not the rubbish used by mainstream labs.

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1.  Selke    Friday, October 10, 2014

Certain types of Lyme disease probably is the cause of ALS. Bacterial meningitis causes paralysis and kills when it travels up to the brain.

2.  Sarah Vaughter    Friday, October 10, 2014

I agree with you, but the fact that certain bacterial infections of the brain paralyze and kill is not strong evidence that ALS can be caused by Lyme disease. However the Halperin study found Lyme antibodies in 9 out of 10 decauses ALS patients and because Halperin himself is a notorious "chronic Lyme denier", this kind of data is a mammoth in the room.

Sadly, Chronic neuroborreliosis is nearly impossible to treat. There certainly is no cure, and improvement is extremely slow, both in time and in what improves. And this is when treatment is optimal. Any mistake in treatment and there will be no improvement at all.

Tbhis means that antibiotic treatment for ALS patients will usually be too little, too late.

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