You might have heard of Lyme Disease – perhaps if you were just diagnosed or a family member or friend has the disease.

Are you wondering what it even is? Does it seem too complicated to grasp?

Maybe you’ve heard a medical professional say it can be cured with a few weeks of antibiotics, but a friend or family member has been suffering for years.

With the right information, you can avoid contracting it yourself, navigate treatment if you already have it, and gain more compassion and understanding for your loved ones battling it.

So, let’s answer a few common questions.

1. What are Lyme Disease and Coinfections?

Lyme Disease and coinfections are a group of vector-borne bacterial diseases – Borrelia Burgdorferi, Tick Borne Relapsing Fever, Bartonella, Babesia, Mycoplasma, Chlamydia Pneumoniae, Anaplasma, Ehrlichia, and Rocky Mountain Spotted Fever, to name a few.

Lyme Disease specifically refers to infection with Borrelia Burgdorferi, while the rest of the group are known as coinfections.

Certain viruses like Epstein Barr Virus, Cytomegalovirus, and HHV-6 can be considered coinfections as well, though they are not transmitted by ticks. They just cause further complications when combined with tick borne disease, because the bacterial infection can reactivate dormant viruses in the body. Even mold toxicity can be a Lyme coinfection, and sometimes in combination with tick borne disease causes Chronic Inflammatory Response Syndrome.

2. How are they transmitted?

Via a tick bite, or more rarely, other insect bites.

Not every tick is infected with Lyme Disease and/or coinfections. The average rate of tick infection depends on the area you live in, but there also aren’t many studies on the infection rate of ticks, so the statistics you find on the internet may be rather outdated or inaccurate.

It’s also possible to have a tick bite from an infected tick without getting sick if you have a very robust immune system and few health problems. This is the exception rather than the norm, though, because Lyme Disease and coinfections are intelligent bacteria that each individually know how to bend the human immune response to make it more favorable to their survival.

For the above reasons, not everyone who gets a tick bite gets sick with Lyme Disease and coinfections, but if you experience a bite followed by several of the symptoms in the “What are the symptoms?” section, that’s a telling sign.

Lyme Disease and coinfections can also be transmitted from mother to baby in utero, and it’s hypothesized that they can be transmitted between partners through intercourse.

3. How are they diagnosed?

A knowledgable doctor will take into consideration your history of a tick bite, your symptoms, and order a tick panel. Many doctors aren’t knowledgable about tick borne diseases, however, so you might have to advocate for yourself and insist on getting a tick panel if your doctor doesn’t suggest it initially.

Testing with an ELISA followed by a Western Blot interpreted by CDC standards is the most common method of testing for Lyme Disease today. The coinfections are most commonly tested via immunoblot.

The problem is, this method of testing is outdated and highly inaccurate. The standard two tier Elisa and CDC-interpreted Western Blot testing causes 56% of people with Lyme Disease and coinfections to get a false negative. This leads to many undiagnosed, misdiagnosed, and untreated patients.

A Western Blot alone can be more accurate if it’s interpreted by different standards than the CDC’s. Companies like IGeneX and Vibrant Wellness are striving to bring more accurate testing methods to the general public, too. You can find the testing I recommend for Lyme Disease and coinfections here.

4. How are they treated?

A course of antibiotics (often doxycycline) for 3-4 weeks is the treatment prescribed by most primary care physicians or infectious disease specialists, which can be a good start to recovery for some, especially cases that were caught in the early stages (ie. within several weeks).

6-8 weeks of antibiotic treatment has been shown to result in better outcomes and fewer instances of residual symptoms after treatment. This is because Lyme and many of the coinfections reproduce very slowly, and the way many antibiotics work is by inhibiting the reproduction process of the bacteria. Therefore, if the course of antibiotics isn’t long enough to inhibit the right amount of reproductive cycles for the bacterial load to be reduced to the point that the immune system can handle it from there – the treatment won’t work.

For late stage cases, a course of antibiotics is rarely enough treatment to resolve symptoms and disability.

Why is a course of antibiotics rarely enough?

1. Because the bacteria can change forms, develop cysts and biofilms, and hide in the tissues of the body to escape the antibiotics, which makes antibiotics less effective in reality than they seem in vitro.

2. Because the bacteria do a lot of damage to the organs of the body over time – even to the nervous system in many cases – and antibiotics can’t help with the necessary repair process. The longer the infection has gone on, the worse it the damage will be.

3. Because the bacteria manipulate the immune system of their host to suit their purpose through cytokine activation, which causes systemic, chronic inflammation, resulting in debilitating symptoms that are difficult to resolve. Sometimes this immune dysfunction causes the production of autoantibodies, so autoimmune diseases develop.

4. Because the bacteria release something in the body called endotoxins, which are more or less poisonous to our bodies. In a perfect world, the body’s detoxification organs would get rid of endotoxins quickly and effectively, but when the bacteria have so severely damaged the organs of the body and the bacterial load has overwhelmed the body’s systems, this rarely happens as designed.

Lyme Literate Doctors, Naturopathic Doctors, and Functional Medicine Doctors will take the above factors into consideration when developing treatment plans for their Lyme patients. Treatment may involve a combination of antibiotics, prescription drugs, herbal medicine, diet, nutritional supplements, bodywork (such as acupuncture), and lifestyle medicine, depending on the practitioner. Some may even include homeopathy and energetic healing, but not all. Read more about how to find a good doctor when you have Lyme Disease and coinfections here.

Though it may take years for people who were sick for a very long time before getting diagnosed, it is possible for Lyme patients to improve their symptoms and possibly even reach remission.

5. Is Chronic Lyme Disease Fake?

The short answer is ‘no’.

Mainstream medicine likes to argue that “Chronic Lyme Disease” doesn’t exist.

In reality, that’s just semantics.

When bacterial tick borne diseases go undiagnosed and untreated, they fall under the category of “late stage Lyme Disease“, according to the medical community.

In essence, late stage Lyme Disease is chronic because it involves illness and symptoms that won’t go away (and will only get worse) until the root cause is discovered and effectively treated.

According to most health organizations, the term “chronic” is applicable to illnesses that last 3 months or longer, so we aren’t wrong if we call late stage Lyme Disease “chronic”, by that definition.

On another note, when Lyme patients remain symptomatic after a 3-4 week course of antibiotics, it’s called Post-Treatment Lyme Disease Syndrome (PTLDS) in the medical community.

More or less, this means the patient is still just as ill, but the doctor can’t admit the patient still has Lyme Disease, because mainstream medicine hasn’t identified a cause for ongoing symptoms after antibiotic therapy. Not to mention, there is no FDA approved or cleared treatment for PTLDS, so diagnosing a patient with the syndrome does not prove very helpful.

Here again, we wouldn’t be wrong in calling PTLDS “chronic”, because the symptoms will persist, and perhaps even worsen, until the disease is effectively treated.

6. What are the symptoms?

Initially, symptoms might resemble the flu, but as the weeks turn into months, and months into years, the symptoms will significantly worsen and become chronic. Below are the most common symptoms for each of the infections.

Borrelia (Lyme Disease)

Bull’s eye rash (one-third of those infected), multiple Bull’s eye rashes (one-fifth of those infected), acrodermatitis chronica atrophicans (late stage), continual low grade fever; high fever, chills, or sweating (generally indicates bacterial coinfections); general flu-like symptoms, frequent headaches, neck stiffness, regular muscle and/or joint pain, severe unremitting headache (generally indicates coinfections), bell’s palsy (usually in children), mental confusion or difficulty in thinking, disorientation, getting lost, going to wrong places, lightheadedness, wooziness, mood swings, irritability, depression, disturbed sleep, fatigue, tiredness, poor stamina, blurry vision, floaters, and/or light sensitivity.

Borrelia (Tick Borne Relapsing Fever)

Similar symptoms to the ones above, but can often occur in a relapsing/remitting pattern, with high fever being more common. Tick Borne Relapsing Fever has a fatality rate of 5-10% when left untreated and can cause sepsis and septic shock. One particular strain, Borrelia Recurrentis, has a fatality rate of 40% when left untreated.

Rocky Mountain Spotted Fever

Fever (in nearly all cases), headache (in nearly all cases – children tend to get headache less often), rash (appears in 90% of cases – children tend to get the rash earlier than adults), nasuea, vomiting, abdominal pain, generalized muscle pain, lack of appetite, and red eyes. RMSF has the highest fatality rate of all tick borne infections except B. Recurrentis – up to 30% when left untreated – and requires immediate antibiotics to reduce this risk.

Chlamydia

Commonly respiratory symptoms, arthritis, pneumonitis, conjunctivitis, vesiculitis, and/or epididymitis. Chlamydia Pneumoniae has also been linked to Chronic Fatigue Syndrome, like the viruses EBV, CMV, and HHV-6.

Mycoplasma

Very commonly respiratory symptoms, rheumatoid arthritis, and/or urogenital infection especially with low sperm count/infertility. Calcification in the brain with or without lesions, leaky vessel walls with purpuras, coagulation problems, mitochondrial malfunction and resulting chronic fatigue, and/or anemia, especially in people with Lyme or Bartonella that is proving difficult to resolve.

Bartonella

Anemia, recurrent fever of unexplained origin, recurrent headache (up to and including migraine levels), fatigue, swollen lymph nodes, sensitivity to light, unexplained cough, bone pain (especially in the foot), neurological problems, paresthesia (“pins and needles” sensation), memory loss, ataxia (impaired coordination due to brain damage), paraparesis (partial paralysis of both legs, and/or progressive weakness and spasms in the legs), and any kind of heart problems.

Babesia

Fever (often very high), fatigue, chills, sweats, air hunger, headache, muscle pain, loss of appetite, cough, joint pain, and/or nausea. Similar symptoms to Malaria.

Anaplasma & Ehrlichia (HGA and HME)

Fever, headache, muscle pain, nausea, joint pain, vomiting, rash, cough, pharyngitis (inflammtion of the throat), diarrhea, lymphadenopathy (swollen lymph nodes), abdominal pain, confusion. Acute untreated infections have a fatality rate of 2-5% for Ehrlichia and 1% for Anaplasma, and can cause sepsis and septic shock. But, HGA and HME can also cause chronic illness without a fatality risk.

7. Will I get Lyme Disease and/or a coinfection?

The best way to prevent infection is to cover up and wear bug repellent when spending time outdoors.

If you do get a tick bite or other insect bite, having a robust immune system and good health can help prevent infection or onset of symptoms.

But, if you get a few of the symptoms above following a bite, it’s best to get tested and choose your practitioner and preferred treatment route.

The earlier you treat, the milder your symptoms will be and the quicker you’ll recover.

Have questions or thoughts? Let me know in the comments. I’d love to chat with you there.

References: Stephen Buhner’s Healing Lyme 2nd Edition, Healing Lyme Disease Coinfections, and Natural Treatments for Lyme Coinfections

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