The Unadulterated And Unpleasant Truth About Lyme Disease

As I was beginning my research and gathering information for what will now be my next post (on Lyme treatments and protocols) I realized that some of the information would be much better understood if I first prefaced it with a full Lyme and associated coinfections overview. How fun does that sound? Here we go.

What is Lyme disease? Lyme disease is a bacterial infection. More often than not, Lyme disease is acquired via the bite of an infected deer tick. Though cases of Lyme have been reported in all states, the Northwest and Upper Midwest are most largely affected by the growing epidemic. A tick going unnoticed can remain on your body for hours to days at a time, engorging itself on your blood as it transmits the spirochetal bacterium (Borrelia burgdorferi) into your bloodstream.

How do you know if you have Lyme disease? If you’ve been bit by a tick, you may start to experience symptoms anywhere from 2-30 days after the initial bite. Lyme disease is a clinical diagnosis, meaning that your treating physician will take into account your past medical history and your current symptoms. Additional laboratory tests can be run to determine a Lyme diagnosis, though many are not completely reliable.

What tests are out there? There are direct and indirect tests that can be used to test for Lyme. Direct tests (such as the Lyme Dot Blot Assay (LDA) or the Lyme Multiplex PCR) look for the presence of B. burgdorferi antigens or nucleic acids. Indirect tests (such as Elisa, IFA and the Western Blot) look for the patient’s immune response to B. burgdorferi. It is important to note that not all ticks are infected, however, ticks themselves can be tested for B. burgdorferi using a test called PCR.

What are the symptoms of Lyme disease? Firstly, there are three major stages of Lyme disease, each with their own varied and increasing set of symptoms: Stage 1- early localized infection (1-4 weeks), Stage 2- early spreading of the infection (1-4 months) and Stage 3- Late/chronic persistent infection (4+months).

Symptoms are as follows:

Stage 1

  • Bulls eye rash (though it only occurs in less than 40% of patients)
  • Flu like symptoms
  • Lack of energy
  • Fatigue
  • Headaches
  • Muscle and joint pain
  • Stiff neck
  • Swollen lymph nodes

Stage 2

  • Extreme fatigue
  • Rashes
  • Migrating pain
  • Weakness and/or numbness in the arms of legs
  • Twitching muscles
  • Severe or recurring headaches
  • Fainting
  • Poor Memory and concentration problems
  • Irritability
  • Vision problems
  • Internal buzzing feeling
  • Heart palpitations
  • Panic attacks
  • Mood disorders

Stage 3

  • Swelling and pain in the joints
  • Numbness and tingling in the extremities
  • Severe fatigue
  • Insomnia
  • Bells Palsy (partial paralysis of the face)
  • Getting lost in common places
  • Problems speaking, word retrieval problems, word block
  • Migrating pain and symptoms
  • Heart damage, pericarditis
  • Meningitis
  • Depression
  • Panic Attacks
  • Bladder problems
  • Tinnitus, ear ringing or feeling of fullness
  • Poor balance
  • Shortness of breathe
  • Rib and sternum soreness
  • Fevers/sweats
  • Vertigo
  • Upset stomach and GI problems
  • Burning and stabbing pains

Just to name a few.

Now if left untreated, Stage 3 Lyme can progress past the blood brain barrier, into the tissue of your central nervous system and wreak all kinds of havoc with your brain. This can be called Neuro-Psychiatric Lyme or, to get more technical, Lyme Neuroborreliosis or Lyme Encephalopathy. Symptoms of this stage are as follows:

  • Simple and complex attention
  • Slow processing-visual and auditory
  • Visual-spatial difficulties-e.g. trouble finding things, getting lost
  • Auditory processing disorders
  • Visual processing disorders
  • Sensory integration disorders
  • Short-term and working memory difficulties
  • Word-finding, word generation and communication difficulties
  • Decline in executive functions-planning and organization
  • Confusion, decline in overall intellectual performance
  • Anxiety, often with panic attacks
  • Depression
  • Irritability/rage attacks/impulse dyscontrol/violent behavior/oppositional defiance disorder
  • sleep disorders
  • Rapid mood swings that may mimic bipolarity (mania/depression)
  • Obsessive compulsive disorder (OCD)
  • Hyperactivity
  • Autism Spectrum-like disorders
  • Antisocial disorders
  • Eating disorders

And more severe Neurological symptoms associated with late-stage Lyme:

  • Progressive dementias
  • Seizure disorders
  • Strokes
  • Motor neuron disease, similar to ALS
  • Gullain-Barre-like syndrome
  • Multiple sclerosis-like syndrome
  • Other extrapyramidal disorders
  • Visual disturbances or loss

What are the coinfections that could potentially come along with Lyme? It is important to understand that from just one tick bite you can get many tick-borne diseases, and the longer the tick stays attached, the greater the risk of disease will be. It is also important to note that it is possible to have one of the coinfections without having Lyme disease, though it is rare. Each coinfection has to be individually and clinically diagnosed and as it varies from patient to patient, symptoms could be quite diverse. Here is a list of some of the coinfections that you may find yourself affected by if you’ve been bit by a tick (with or without Lyme):

  • Babesiosis
  • Bartonellosis
  • Borrelia Miyamotoi
  • Anaplasmosis
  • Ehrlichiosis
  • Colorado Tick Fever
  • Powassan Encephalitis
  • Q Fever
  • Rocky Mountain Spotted Fever
  • STARI (Southern Tick-Associated Rash Illness)
  • Tick paralysis
  • Tularemia
  • Rickettsiosis

Who can be affected by Lyme disease and its coinfections?Everyone is at risk, from babies to elderly folks. It has been shown that even babies still in the womb can become infected-Lyme DNA has been found in breast milk, and the Lyme bacterium can cross the placenta which may result in fetal death.

What you can do to protect yourself: During the Spring, Summer and Fall it is important that, upon entering tick country, your dressed appropriately-light colored long sleeve shirts, pants, shoes that cover your feet, a hat and tuck your pants into your socks. No, it is not meant to be flattering. In addition, always walk in the middle of pathways, use known tick repellents, always check your skin and all hair areas thoroughly. Pets and all gear (example: deer hunters) should be fully checked for ticks before put into cars or brought into houses.

How to properly remove a tick:

  1. Use tweezers or forceps
  2. Grasp the tick mouthparts close tot he skin
  3. Avoid squeezing the tick, for it may spread infect fluids
  4. Pull the tick straight out, do not twist or attempt to burn the tick
  5. Save the tick (you may want to have it tested)
  6. Wash hands with soap and water
  7. Apply antiseptic to bite site

Fast Facts:

  • According to the CDC, Lyme disease is the fastest growing vector-borne, infectious disease in the United Sates
  • The number of cases reported annually has increased nearly 25-fold since National Surveillance began in 1982
  • There are 5 subspecies of Borrelia burgdorferi, over 100 strains int he US, and 300 strains worldwide
  • CDC estimated cases per month: 25,000 Cases per week: 5,770 Cases per day: 822 Cases per hour: 34
  • There are no tests available to prove that the organism is eradicated or that the patient is cured
  • Fewer than 50% or patients with Lyme disease recall a tick bite
  • 40% of Lyme patients end up with long term health problems
  • Fewer than 50% of patients with Lyme disease recall a rash
  • Up to 50% of ticks in Lyme-endemic areas are infected

For more information: You can visit Igenex Inc.,, Lyme Disease, or (if you’re in Maine) you can visit  the Midcoast Lyme Disease Support & Education online.

Much of this information that I have here I was able to get directly from the brochures and pamphlets in the information packet from the 2nd Annual Midcoast Lyme Disease Support & Education Conference that was held here in Maine back in April. I myself was not able to attend, due to being sick with Lyme (go figure). However, I was able to order a copy of the packet of info and a DVD of the conference proceedings. It has been invaluable in furthering my knowledge of Lyme.

Now next time, finally, I will address treatment protocols, both antibiotic, natural, etc.

Hannah Barry

About Hannah Barry

I am a 26-year-old Mainer. I was bit by a tick 4+ years ago and I've been battling Lyme disease and its various coinfections ever since.