When Life Hands You Lymes, Make Lemonade
We get asked about Lyme's disease - a lot. This is because we're in the Lyme hotspots, having stores in Connecticut and the Hudson Valley of New York. There are enough books and websites out there about it to make your head spin. Often times we get asked about the non-traditional options and "Lyme literate" doctors. There's a lot of room for misinformation; we've probably seen all of it... Let's take a trip down Lyme disease lane.
Lyme disease is an infection caused by a tick bite where a bacteria called Borrelia burgdorferi is transmitted. Sometimes people "luck out" and get more "fun" after a single tick bite; there are some secondary infections that can accompany this infection and vary by the region.
While Lyme disease is an awful infection that is difficult to diagnose at times, the one good thing is that it is easily treated; one or two three week courses of an antibiotic usually take care of it. About 10-20% of patients who are treated will still have symptoms after treatment - and this is where the vultures start circling. That’s a high frequency, and since Lyme testing and diagnosing this “after effect” is tough, Lyme has become this “enigma” in the eyes of the public.
Any time you have a disease people that's not well understood with sometimes chronic symptoms there will always be a person looking to make a quick buck. The 10-20 % of patients who still have symptoms after treatment have what is called PTLDS (Post-treatment Lyme disease syndrome). According to the CDC, this is the result of residual damage to the tissues and nerves caused by the very nasty Lyme's infection.
Every year thousands of patients with PTLDS are, in our view, taken advantage of by “practitioners” who pretend to treat it under the fake name of “chronic Lyme disease”. The belief held by some is that these infections are never actually cured and the person is actively infected for long periods of time, requiring alternative treatments hidden from the public and secret to them alone to finally “cure” the infection.
Goofy Devices – A Hard Knock Rife
The first type of “treatment” used by these “practitioners” is the rife machine. Companies selling the rife machines claim that they can treat almost all diseases, from cancer to AIDS to Lyme disease. An aside – notice how these machines can cure “cancer”, like there's just one type of it or something. Anyway... You name a disease and the rife machine is the cure. According to the rife machine website (which we won’t link here because why give them the clicks):
“The Rife machine uses a variable frequency, pulsed radio transmitter to produce mechanical resonance within the cells of the physical body.” and “could use specific electro-magnetic frequencies to kill a bacteria or viruses without causing damage to the surrounding tissue.”
If this were true it would be one of the greatest discoveries in the history of medicine. It also it would be horrific - “pulsed radio transmission” is kind of a fancy way to talk about a radio tower – the one that sends sounds to your car radio, for example. Imagine the power needed to send a radio signal over the air and what would happen if doing so “produced mechanical resonance within the cells” of the body. If the Rife machine's mechanism of action actually was effective, we'd cure cancer when we tune to the classic rock station. More likely, if it did work, we'd have LOTS of cancer!
Of course the rife doesn't work. The companies do not offer any evidence. If you click on their "positive" clinical results it is not clinical research, but a story about the man who invented the machine. Of course, the next link is about how the magic cure to all diseases is being suppressed by all the standard “evil-doers” (Big Pharma, FDA, or whichever group is most popular on the Interwebs nowadays). The FDA is on their “big meanie” list as it sent a warning to one of the manufacturers that they can’t claim it has diagnostic abilities, plus a bunch of advocates of rife machines have been sued. The companies post lots of stories and fantastic claims, but no evidence.
Here's the thing - no one is preventing them from doing a proper clinical trial and posting the results. All that's needed to legally make a legitimate health claim is two properly done clinical trials. So why haven't they? Surely, a machine that's so effective and has the potential to "cure" horrible diseases would be of some value to someone. Why not prove it and be a bazillionaire?
Lyme “Treatment”’s Personal Touch
Next on the list of “treatments” is “energy medicine” for Lyme. These consist of acupuncture and various touch/non-touch wavy-arm therapies. Once again, “practitioners” make a large number of claims and tell lots of stories. They claim that by adjusting the qi, meridians, or other “energies” that the patient can be cured. It sounds great, and acupuncture has proven beneficial in certain pain conditions, but these therapies will do nothing but mentally relax someone suffering from Lyme. That’s great, and I’m sure it helps sufferers, but curing or ridding the body of Lyme’s it will not.
Up next, herbal remedies. This is a good example of not throwing the baby out with the bathwater. Properly manufactured herbal remedies do have a variety of uses and a lot of research for a number of conditions. Herbs work, but not in the way that many “experts” claim they do for Lyme's disease There are many herbal regimens for Lyme in books and on the internet. There are dozens of different protocols named after their discoverers/pundits that are purported to work.
These various protocols are based on using combinations of herbal products to treat and kill the Lyme infection and other co-infections that come along with it. They also claim to “build the immune system back up.” Guess what all of these herbal protocols have in common: lack of evidence. Many bacteria-fighting effects found in herbs work in controlled “test tube” conditions - not in the human body.
If we’re to use ANYTHING for bacterial infections, we should use antibiotics - purified, concentrated medicines that when dosed at the appropriate amount and frequency have shown in humans to eradicate infections, even Lyme. We use this analogy: Red Rice Yeast is a low dose, inconsistently made, potentially contaminated statin drug.
If you are considering using it, it makes more financial and clinical sense to use a cleaner, reliable source. Herbs aren’t magical. Nor are they safer because they are natural. If anything, because of the poor regulation and enforcement, they are less potent, pure, and consistent than their pharmaceutical equivalents.
In many cases herbs, when made correctly, are great options for numerous conditions. But not for killing Lyme’s bacteria. We could only find two reasonable trials on any herbs for Lyme disease (NOTE: if anyone has any we'd love to see them, so please share them with us). The first was a test-tube study- not a human trial, so that does not really mean anything to us.
The second was the only human clinical trial I could find done on people. This was quite a bad piece of science. It tested the effects of a TOA free cats claw extract on people. The people were given various other treatments such as dietary and lifestyle modifications, antibiotics and various other remedies. Each person claimed to have had the disease for 10 years. The tests they used to determine this were sketchy at best. So they had people improve the way they ate, gave them antibiotics and then after they did all that decided to give them cats claw.
Of course, people were going to feel better. If you eat better and lead a healthier lifestyle, that alone will make people feel better. An excellent example of bad science. The most commonly asked for herb for treating Lyme disease is Japanese knotweed. Not one clinical trial has ever been conducted on Lyme’s patients taking Japanese knotweed.
The burden of proof lies with the claimant. If I say the flying spaghetti monster (forgive me your noodliness) can heal infections do I not have to provide some evidence that he exists and can do this (sorry for all the noodle examples, I am craving pasta)?
So why do some people claim to feel better from these “therapies”? The first is that many PTLDS disease symptoms are cyclical, so the flare-ups come and go. They may take a treatment on the tail end of a flare-up and attribute feeling better to the treatment, rather than the cyclical nature of the symptoms.
Secondly, many of the symptoms are inflammatory and many antibiotics or herbs have an anti-inflammatory effect or two, so that can make people feel better.
Thirdly, there is the placebo effect. Many people feel better doing something rather than doing nothing. Doing many of these treatments makes people feel as though they have some control and this also helps them feel better.
We’re intentionally trying not to over-simplify Lyme’s because part of the problem with these “practitioners” is the over-complication of the disease. It’s important to take it seriously, seek legitimate care first. Sometimes people need more than just 1 course of antibiotics. Sometimes you need to seek an expert.
We have a great recommendation in the NYC area, so drop us a line and we can get you in contact with him and his research. He’s a tough-love guy, so we feel we’re kindred spirits.
Lyme’s disease is scary to most of us. It’s spread on little ugly bugs that we normally can’t see on us and therefore won’t know we’ve been bitten until a weird rash (normally bullseye shaped) develops.
It’s difficult to test for because of the nature of the bacteria. There are long-term “after-effects” that can happen in a high frequency. But worse, there are false prophets spreading misinformation as fast as they can.
When someone makes a claim that they can cure or treat Lyme disease, ask for human clinical trials. Not anecdotes, not stories, and not test tubes. Reproducible, peer-reviewed evidence.
We have solid options - diet changes, a supplement or two, along with other lifestyle modifications that can help with pain and inflammation, nutrition needs, and low energy levels associated with PTLDS. This, along with a great infectious disease doctor can go a long way in feeling better after a Lyme infection.
Just trying to keep it real...
Neal Smoller, PharmD
Owner, Pharmacist, Big Mouth