The very real danger of Lyme disease

When I recently found out that my neighbor had been diagnosed with Lyme disease, I thought perhaps I should look into it some more.  What I found out is truly horrifying.  I knew it was a tick-borne illness, and all you have to do to get it is to go in the woods and have the misfortune of having a deer tick bite you, but what I did not know was the agony that Lyme disease patients go through.


What is Lyme disease?

Lyme disease is caused by spirochetal bacteria from the genus Borrelia. It can affect multiple body systems and produce a range of symptoms. Not all patients with Lyme disease will have all symptoms, and many of the symptoms are not specific to Lyme disease, but can occur with other diseases as well. The incubation period from infection to the onset of symptoms is usually one to two weeks, but can be much shorter (days), or much longer (months to years).  The bacteria are shaped like a corkscrew and can drill through your blood vessels and various tissues.  This is how they enter your joints, heart and brain.

Initial (acute) symptoms most often occur from May through September, because the nymphal stage of the tick is responsible for most cases. You could be infected and not even know it because in some cases the infection is asymptomatic.

The bacteria responsible for the disease live in deer ticks and are passed to humans when bitten by a tick.  In some cases, however, you may not even know you have been bitten.  Some of these ticks can be as small as the head of a pin.

Early localized infection is where the Lyme disease has not yet spread throughout the body. The only area affected is where the infection has first come into contact with the skin. The classic sign of early local infection with Lyme disease is a circular, outwardly expanding rash resembling a bull's eye, which occurs at the site of the tick bite three to thirty days after the tick bite.  Around 70% of those affected by Lyme disease develop this initial rash, meaning that around 30% of those with the disease could easily miss it, especially if they do not find a tick on them and have no reason to suspect anything is wrong.

While acute infection is bad enough, it is the chronic form of the disease that is the most horrifying and difficult to treat. In addition to chronic fatigue, muscle and joint pain, patients often exhibit debilitating neurological symptoms resembling bipolar disorder, schizophrenia, ALS, MS, Parkinsons and Alzheimer's. The chronic form of the disease is especially devastating in children, sometimes leading to permanent brain damage.

Interactive Lyme disease map

The disease is more common in the northeast, but cases have been reported in almost every state in the country.  According to the CDC, about 300,000 people are diagnosed every year, and the number is growing.  The map to the right shows the number of incidents reported to the CDC by county.  Keep in mind this is the number reported.  The CDC acknowledges the actual number of infections is almost ten times higher.  It could also be argued that the number is much higher than reported in southern states because doctors down there are not used to seeing this and could easily misdiagnose it as something else.  This map links to the interactive map on the CDC website.  Looking at the difference from 2001 to 2011 really shows the magnitude of this epidemic.

The documentary Under our Skin, which we watched on Amazon Prime (free trial), chronicles the struggles of a number of Lyme disease patients and follows their progression through their treatment. The treatment for this is not easy or cheap. It involves a very long and expensive regimen of powerful intravenous antibiotics, and it is getting more and more difficult to get.

Why is it so difficult to get treatment for chronic Lyme disease?

IDSA authorsThe short answer is the Infectious Diseases Society of America (IDSA). The IDSA published a set of guidelines for treatment of Lyme disease which deny the existence of chronic Lyme disease and are written with the purpose of restricting the treatment of Lyme. The IDSA cherry-picked a small number of articles to reference in their guideline, half of which were written by themselves, and ignored the body of research that exists on chronic Lyme disease.

Dr. Samuel Donta, who was also on the IDSA panel said "we never got to discuss late and chronic Lyme disease [...] what happened was; Dr. Wormser did take over the Chairmanship on guidelines for Lyme disease and we never met again, we just said 'here are the guidelines, you can sign them and agree... or not' [...] Really those guidelines reflected the ideas of one or two people, but they've been misused by insurance companies who don't want to pay for treatment."

Dr. Donta also questions the wisdom of prescribing a course of only two to four weeks of treatment, and suggests this may be an arbitrary recommendation.

The guidelines are written in legalese terms, and are used in court to prosecute physicians who treat patients for chronic Lyme disease and by insurance companies to deny coverage to those same patients. This is truly abhorrent behavior by those who are supposed to protect the best interest of the public, but the reality is that many of them are protecting their own interests instead.

There are numerous conflicts of interests with a number of the IDSA guideline authors. Of the 14 authors:
  • 6 hold patents associated with Lyme disease or its coinfections
  • 4 have received funding from Lyme disease test kit manufacturers
  • 4 have been paid by insurance companies to write Lyme policy guidelines or serve as consultants in legal cases
  • 9 have received money from Lyme vaccine manufacturers
It is common sense that the IDSA should to establish a rule that no one that serves in a guideline committe have a financial stake in the outcome of those guidelines. This was not the case in the development of the Lyme disease guidelines and as a result patients and doctors are suffering.

What can you do?

Seeing as how the IDSA is trying to make it impossible to get treated for Lyme disease in the chronic stage, the best thing you can do is to never get there.
  • If you go in the woods make sure you douse yourself in a good insect repellent (this one has 25% DEET and works well according to reviewers).
  • If you do get bit by a tick, try to save the tick and test it with this test kit.  If it comes back positive run to your doctor and demand to be put on the strongest antibiotics available for Lyme disease and for as long as possible.  Do not wait for your blood test to come back since this can take weeks and could show a false negative.  The sooner you start treatment the better.
  • You can also test yourself with this test kit.  It is labeled for use on humans as well as pets.
  • Keep deer off your property with this electronic deer repellent.
Other than that, the only thing you can do is be vigilant, try to avoid walking through the woods or tall grasses, and pray that you never find yourself in this situation.