Old 01-09-2019, 12:10 PM #1 (permalink)
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Default Is Lyme a scam?

Hello everyone,

We live in a zone where cases of Lyme are frequent. Recently, some people of my town diagnosed with MS / Parkinson's were treated with antibiotics for Lyme and improved. One of them suggested my father see a physician with expertise on infectious diseases. I was extremely skeptical, but I decided to support him in his decision.

The doctor is, to the best of our knowledge, a reputed professional, who treated several of people known by us successfully. He took a blood sample and told us to wait a few days.

Today we received the results of the test. He wrote in the report that he found what looked like spirochaetes in the blood. Those are apparently the organisms that cause Lyme disease. He sent the videos with the images, so we could potentially show it to another professional.

Now, I have heard that Lyme is a usual scam in these cases, but this was suggested to us by a doctor. How much should I trust this diagnosis? Should he start with antibiotics? Conduct further testing? I am so skeptical that the news did not arise any hope in me. And yet, I also do not want to not take any chances, especially since my father's case was a very ambiguous one from the beginning.

Any thoughts?

E.
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Old 01-09-2019, 12:28 PM #2 (permalink)
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Default Re: Is Lyme a scam?

Lyme Disease is real and over-diagnosed and treated, but it has nothing to do with ALS.

In the US, there are very clear clinical criteria for diagnosis of Lyme based on the history and physical exam and testing for Borrelia burgdorferi antibodies using Western Blot test. Here are the CDC criteria including clinical manifestations involving the nervous system (which as you can see, are different than the manifestations of ALS):


Centers for Disease Control and Prevention criteria for Lyme disease:

Presence of EM (erythema migrans rash) OR
At least one late manifestation plus laboratory confirmation of infection.*

The late manifestations include any of the following when an alternate explanation is not found:

Musculoskeletal system
Recurrent brief attacks of objective joint swelling in one or a few joints, sometimes followed by chronic arthritis in one or a few joints. Manifestations not considered as criteria for diagnosis include chronic progressive arthritis not preceded by brief attacks and chronic symmetrical polyarthritis. Additionally, arthralgias, myalgias, or fibromyalgia syndromes alone are not accepted as criteria for musculoskeletal involvement.

Nervous system
Lymphocytic meningitis, cranial neuritis, particularly facial palsy (may be bilateral), radiculoneuropathy or, rarely, encephalomyelitis alone or in combination. Encephalomyelitis must be confirmed by showing antibody production against B. burgdorferi in the cerebrospinal fluid (CSF), which is demonstrated by a higher titer of antibody in CSF than in serum. Headache, fatigue, paresthesias, or mild stiff neck alone are not accepted as criteria for neurologic involvement.

Cardiovascular
Acute onset, high grade (2nd or 3rd degree) atrioventricular conduction defects that resolve in days to weeks and are sometime associated with myocarditis. Palpitations, bradycardia, bundle branch block, or myocarditis alone are not accepted as criteria for cardiovascular involvement.
EM: erythema migrans.

* Laboratory confirmation includes detection of Borrelia burgdorferi from a clinical specimen or
Demonstration of diagnostic immunoglobulin M or immunoglobulin G antibodies to B. burgdorferi in serum or cerebrospinal fluid (CSF). A two-test approach using a sensitive enzyme immunoassay or immunofluorescence antibody followed by Western blot is recommended.

(CDC. Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease. MMWR 1995;44:590-1.).
Centers for Disease Control and Prevention. Case definitions for infectious conditions under public health surveillance. MMWR Morb Mortal Recomm Rep 1997;46(RR-10):1.
Graphic 63453 Version 4.0

In terms of your fatherís blood sampleó. There are a number of different types of spirochete organisms. Perhaps he should get blood tests for Lyme antibodies and also serologic (blood) tests for syphillis, which is another type of spirochete. There are also other tick- borne illnesses caused by spirochetes other than Lyme. See what the doctor recommends testing for.

In terms of antibiotics, it depends on which type of spirochete. There are established protocols for treating each type.
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Old 01-09-2019, 01:14 PM #3 (permalink)
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Default Re: Is Lyme a scam?

Thank you for the informative response! Perhaps my title was misleading: I am aware that Lyme exists, of course, and that it has nothing to do with ALS. However, I have read that there is an extended scam whereby people with ALS are told that they might have "chronic lyme," which is of dubious existence. For this reason, I am skeptical of believing that those organisms might be responsible for my father's spasticity and muscle pain. And yet, the doctor is asking us to do further testing and has explicitly suggested his PLS diagnosis might be mistaken, so I am afraid I am just embracing pseudoscience by believing him.
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Old 01-09-2019, 03:52 PM #4 (permalink)
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Default Re: Is Lyme a scam?

Iím not surprised thereís a scam out there identifying ALS as chronic Lyme disease. If thereís a way to make money, people will find it.

If your physician is board certified in infectious diseases and has a good reputation, then youíre probably ok. But since he found ďspirochetesĒ in the blood, now youíre kind of obligated to follow through with evaluating that. But whether or not itís significant, it is not likely to relate to your dadís ALS/ PLS.
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Old 01-09-2019, 04:24 PM #5 (permalink)
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Default Re: Is Lyme a scam?

"Finding Lyme-causing spirochetes in the blood" as opposed to antibodies against them, as per the guidelines Karen referenced, is a red flag. Current culture techniques take up to three months and are unreliable. Interestingly, a paper on the technical feasibility of better direct testing was posted in October, with the acknowledgement that no such test has been designed, let alone validated as yet.

So finding those particular spirochetes in a few days sounds like charlatanism.

Last edited by lgelb : 01-09-2019 at 05:46 PM
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Old 01-09-2019, 04:40 PM #6 (permalink)
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Default Re: Is Lyme a scam?

So what this boils down to is whether or not this doctor actually saw spirochetes in the blood. I was not aware if spirochetes could be detected on a routine blood smear (analogous to how we can see malaria parasites on a blood smear), so I looked this up for some spirochete- induced diseases: Lyme, syphillis, and leptospirosis.

It turns out the spirochetes in these conditions can not be seen with standard testing and routine blood smears. They can only be seen using dark field microscopy and electron microscopy, neither of which are standard tests. And usually one is looking at infected tissue other than blood (such as joint fluid, CSF, or a wound). For it to be seen in the blood using special techniques, it would have to be present in tremendous concentrations, and the person would be very SICK.

So I agree with Laurie that this smells scammish.
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Old 01-09-2019, 05:38 PM #7 (permalink)
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Default Re: Is Lyme a scam?

Thank you for your messages. This is really what I was expecting, all the more when he suggested tests that are very likely to give false positives according to what I've been able to gather (such as CD57 testing).

On the other hand, the report did say that it was done using "dark field microscopy." But I agree that the general picture does not look good.
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Old 02-06-2019, 03:50 PM #8 (permalink)
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Default Re: Is Lyme a scam?

emanol, i guess you do know that famous deanna ("deana protocol") has been diagnosed with lyme 6 years after als onset (3rd attempt to find borrelia in 6 years - first negative in 2009, sec. "possibly" in 2014, third positive in 2015.). there are also articles "when als is a lyme", and sci articles which confront that theory (ncbi, etc...). google, read, estimate...
note that it is very hard to detect it in a chronic stage. there's sci trial which found just 1 positive pals among 400+ pals. methods are not mentioned; elisa, w. blot, immuno blot... i understand you. personnaly, i know two persons diagnosed with ms, who were tested negative on lyme, and after few years emerged that they are positive. bed ridden. dont believe that they were biten in a meantime.
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Old 02-06-2019, 04:33 PM #9 (permalink)
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Default Re: Is Lyme a scam?

The last peer-reviewed study using PALS and controls showed equal prevalence of Lyme antibodies in PALS and others, which is consistent with a previous study of PALS.

ALS Untangled has also addressed the "can 'ALS' be misdiagnosed when it's really Lyme" question, and concluded not. Yes, I have seen at least one case report to the contrary, but there is no suggestion that without abx the pt would have progressed to complete paralysis.

In your dad's case, Emanol, I think we are more concerned about whether there is an objective lens being applied to the presence of Lyme. But as these studies point out, even if you give abx for Lyme in ALS, it won't affect the prognosis. I suspect the same is true with your friends with MS who subsequently tested positive, Jethro.

Having had Lyme myself before my husband's ALS, I would agree with the ALS Untangled paper authors that it is very difficult to see how one could be mistaken for the other. As for Deanna, even her dad acknowledges only that he believes that her ALS is being caused by a bacterium that also causes Lyme; he does not deny that she has ALS. And that site is so full of scientific quackery/commercial incentives that I will stop there, except to say whenever a site whines about how the Establishment is hiding a large body of science, it's time to hold onto your wallet.

We often share information here around keeping yourself as healthy as possible to delay the progression of ALS, but we don't recommend pre-packaged, one-size-fits-all, expensive supplement bundles to do so. Supplements based on science, that do not interact with individual medications or conditions; passive or active exercise, sleep, nutrition, hydration, respiratory support, mobility devices, activities and social interaction all play a part.

Evident reversals have been documented, and whatever the mechanism(s) of those may be, the data so far certainly support the idea of staying as healthy as possible within your own baseline.

Best,
Laurie

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