What is Lyme Disease?

"Lyme Disease is a multi-system disease which can affect virtually every tissue and every organ of the human body. It is a disease which can be mild to some, and devastating to others. It can cripple and disable, or fog your mind. It can affect men, women, and children, and even your family dog. You may test negative for the disease, and still have it, or test positive and be symptom free. Some will get symptoms within days of a tick bite, while others may have it for years before they are even diagnosed. Some Lyme patients are told they have fibromyalgia, chronic fatigue syndrome, MS, or some other disease of unknown origin. Lyme disease is caused by a spiral shaped bacterium known as a spirochete. Diseases that are caused by spirochetes are notorious for being relapsing in nature, difficult to detect, and great imitators of other diseases. Syphilis, Tick-Borne Relapsing Fever, and Leptospirosis are other examples of spirochetal diseases. Lyme disease is caused by a bacteria called Borrelia burgdorferi, named after the man who isolated it from a Deer Tick in 1981, Dr. Willy Burgdorfer." 

Excerpt from Lyme Disease Survival Manual, 1997

 

Lyme Disease is called the Great Immitator as it mimics other autoimmune diseases. The average chronic Lyme patient takes twelve years to get an accurate diagnosis. See Lyme Disease Quick Facts from the International Lyme and Associated Diseases Society (ILADS). 

 

Also, watch the film trailor for Under Our Skin, the 2006 award winning documentary about Lyme Disease and the politics behind getting diagnosed and treated accurately, or watch the entire film by clicking on the image below:

 

 

 

 

 

 

 

 

 

 

 

 

How do you, your kids or pets get Lyme Disease?

"Most people [and pets] get Lyme from the bite of the nymphal, or immature, form of the tick. Nymphs are about the size of a poppy seed. Because they are so tiny and their bite is painless, many people do not even realize they have been bitten. Once a tick has attached, if undisturbed it may feed for several days. The longer it stays attached, the more likely it will transmit the Lyme and other pathogens into your bloodstream. If pregnant women are infected, they sometimes pass Lyme disease to their unborn children [maternal-fetal transfer]. Some doctors believe other types of human-to-human transmission are possible but little is known for certain. Researchers have found spirochetes in mosquitoes and other blood-sucking insects. But it has not been proven that they can transmit the infection. In the midwestern and eastern United States, Ixodes scapularis or deer tick is the primary vector of Lyme disease. On the West Coast, the spirochete is carried by Ixodes pacificus or western black-legged tick. In the South, lone star ticks (Amblyomma americanum) can also transmit Lyme disease or a closely related illness."

Excerpts from LymeDisease.org

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

On a personal note, when I found an adult tick on my dog Paco, I treated him with antibiotics for two weeks. If I ever found a tick on myself I'd find a Lyme Literate MD (LLMD) and get aggressive treatments for several months and I'd do the same if I had a child. I will not mess around with this disease. The longer you let it go, the harder it is to treat and can become untreatable as in Nathanael's case. 

 

See What do I tell my doctor? below for Nathanael's suggestions to anyone who has gotten bit by a tick and also see his excellent suggestions on How do I get tested? if you suspect that you or someone you know has the disease. 

 

Click here to see how to remove a tick, and if you do remove it, save it for testing!!!

 

What if I don't remember getting bit or having a rash?

In LymeDisease.org’s survey of 3000 patients with chronic Lyme, 40% reported a rash. Most of the time the rash is an ordinary red area; however if it is a “bull’s-eye” shape with a darker edge, it is a definite sign of Lyme disease and needs immediate treatment. Unfortunately this distinctive rash occurs in less than 10% of those who contract Lyme disease. (Smith, 2002) 

 

Other symptoms of early Lyme disease may include a fever, headache, fatigue, or muscle aches.

Unfortunately, diagnostic testing is unreliable in the early stages of infection, often giving false negatives. Treatment should not be delayed pending a positive test result if the suspicion of Lyme disease is high (exposure, tick bite, possible rash).

 

What are common symptoms?

Rule #1: Lyme disease can remain dormant for years. Nathanael didn't get diagnosed until he was 26 years old, but we know he had it his entire life. It's when stress enters in, such as school, work, relationships (good or bad), accidents, injuries, or traumas, that the immune system starts misbehaving.

 

The first physical signs of Lyme infection are often flu-like symptoms – sore throat, headaches, congestion, stiffness, etc. – so many people, including doctors, dismiss the symptoms as the flu. Fifty-percent of infected patients remember being bit and less than 50% will get a distinct rash. However, if you get the classic bulls-eye rash (erythema mirgrans pictured at right) or something like it, get to a Lyme Literate Doctor (LLMD) right away!

 

Here is the most comprehensive symptom list I could find provided by the Canadian Lyme Disease Foundation (CanLyme.com). Keep in mind, we may all have some of these symptoms, but it doesn't mean we have Lyme Disease. But if you or someone you know is having several of these symptoms to a point where their life is being disrupted, it's something to consider, especially if you/they ever remember being bit by a tick:

 

Head, Face, Neck

• Unexplained hair loss

• Headache, mild or severe, seizures

• Pressure in head, white matter lesions in brain (MRI)

• Twitching of facial or other muscles

• Facial paralysis (Bell’s Palsy, Horner’s syndrome)

• Tingling of nose, (tip of) tongue, cheek or facial flushing

• Stiff or painful neck

• Jaw pain or stiffness

• Dental problems

• Sore throat, clearing throat a lot, phlegm (flem), hoarseness, runny nose

Eyes/Vision

• Double or blurry vision

• Increased floating spots

• Pain in eyes, or swelling around eyes

• Oversensitivity to light

• Flashing lights, peripheral waves or phantom images in corner of eyes

Ears/Hearing

• Decreased hearing in one or both ears, plugged ears

• Buzzing in ears

• Pain in ears, oversensitivity to sounds

• Ringing in one or both ears

Digestive and Excretory Systems

• Diarrhea

• Constipation

• Irritable bladder (trouble starting, stopping) or interstitial cystitis

• Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

• Bone pain, joint pain or swelling, carpal tunnel syndrome

• Stiffness of joints, back, neck, tennis elbow

• Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

• Shortness of breath, can’t get full/satisfying breath, cough

• Chest pain or rib soreness

• Night sweats or unexplained chills

• Heart palpitations or extra beats

• Endocarditis, heart blockage

Neurologic System

• Tremors or unexplained shaking

• Burning or stabbing sensations in the body

• Fatigue, Chronic Fatigue Syndrome, weakness, peripheral neuropathy or partial paralysis

• Pressure in the head

• Numbness in body, tingling, pinpricks

• Poor balance, dizziness, difficulty walking

• Increased motion sickness

• Light-headedness, wooziness

Psychological Well-being

• Mood swings, irritability, bi-polar disorder

• Unusual depression

• Disorientation (getting or feeling lost)

• Feeling as if you are losing your mind

• Over-emotional reactions, crying easily

• Too much sleep, or insomnia

• Difficulty falling or staying asleep

• Narcolepsy, sleep apnea

• Panic attacks, anxiety

Mental Capability

• Memory loss (short or long term)

• Confusion, difficulty thinking

• Difficulty with concentration or reading

• Going to the wrong place

• Speech difficulty (slurred or slow)

• Difficulty finding commonly used words

• Stammering speech

• Forgetting how to perform simple tasks

Reproduction and Sexuality

• Loss of sex drive

• Sexual dysfunction

• Unexplained menstrual pain, irregularity

• Unexplained breast pain, discharge

• Testicular or pelvic pain

General Well-being

• Phantom smells

• Unexplained weight gain or loss

• Extreme fatigue

• Swollen glands or lymph nodes

• Unexplained fevers (high or low grade)

• Continual infections (sinus, kidney, eye, etc.)

• Symptoms seem to change, come and go

• Pain migrates (moves) to different body parts

• Early on, experienced a “flu-like” illness, after which you have not since felt well

• Low body temperature

• Allergies or chemical sensitivities

• Increased effect from alcohol and possible worse hangover

 

 

 

Dr. Richard Horowitz, one of the world's most prominent Lyme Literate MDs, has provided this PDF Lyme Questionnaire to determine the severity of your symptoms and your probability of having a tick-borne illness. You can print and score this at home. 

 

How do I get tested?

Okay, this is important so listen up! First of all, find a Lyme Literate Medical Doctor (LLMD) here or here in your area, NOT a regular doctor or infectious disease doctor, to work with you on testing and treatment. Lyme can often be diagnosed clinically based on your case history, symptoms and exposure to ticks. However, a blood test can be helpful to confirm the diagnosis  which will give you peace of mind, direction, and a way to monitor your progress throughout treatment. According to Nathanael's many years of testing and research, he STRONGLY recommended the following laboratory testing above all others for one primary reason: it's the only test that actually cultures your blood for Borrelia burgdorferi (Lyme) bacteria. This means you will get a straight positive or negative (yes or no) and actually see pictures of the spirochetes in your blood if you are infected. You have to be off antibiotics (even herbal for four weeks prior to testing) and it's best to test when symptoms are at their height (i.e., when you feel terrible). Here is the lab which Nathanael considered the "gold standard" for Lyme testing to the point where he recommended nothing else:

 

Advanced Laboratories: http://www.advanced-lab.com/spirochete.php 

855-238-4949 or email: questions@advanced-lab.com

 

If you have several of the symptoms listed above and have been diagnosed with one of the following immitators of Lyme Disease such as Chronic Fatigue Syndrome, Fibromyalgia, MS, or another autoimmune disease, OR a mysterious chronic condition, and aren't getting any success with treatments, OR you have been told "it's all in your head," then you might consider getting this blood test to see if you or your loved one tests positive for Lyme spirochetes. While this test is not covered by insurance and costs a whopping $600 out of pocket, it can save money and heartache in the long run considering that the average Lyme patient takes two to twelve years to get an accurate diagnosis.

 

I'm not going to include any other lab recommendations at this time (although there are a couple of other good ones) because Nathanael was adamant that this was the BEST available to Lyme patients and I trust his years of in depth research and experience. Nathanael would NOT recommend going to your regular MD to ask for the standard Western Blot Lyme test or ELISA test as they mostly result in false negatives and are extremely unreliable (and frustrating). 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

How do I get treated? 

Early Lyme Infection Treatment: VERY IMPORTANT!!!

For an acute infection wherein you get bit by a tick and may or may not exhibit a rash or any immediate symptoms, YOU NEED TO BE PROACTIVE!!! And this is where you need a secret password. Since I'm not a doctor and can't presribe medication or treatments, please email me here for Nathanael's recommendation on what antibiotics and dosages to ask your LLMD for. This is CRITICAL information for getting on top of an infection in the early stages! You do not want to deal with Chronic Lyme Disease as that is a far more complex and hard to control form of the disease. This information is one of N's greatest gifts to us, so if you have an early infection get in touch with me a.s.a.p.!

 

Chronic Lyme Infection Treatment

On the contrary, this is the hardest part for me to discuss because Nathanael and our family tried everything for his Chronic Lyme Infection. You name it, conventional, alternative, and integrative therapies at universities, clinics in the U.S. and Mexico, we tried them! However, his case was extremely complicated due to a genetic liver condition, kidney damage, Aplastic Anemia, and organ damage from spinal compression. 

 

If you think you or a loved one may have a case of Lyme Disease that has gone undiagnosed for months or years, then Nathanael would recommend that you find the absolute best Lyme Literate Medical Doctor (LLMD) right away and get on a waiting list to see him or her. Even if you have to fly to another state for an initial visit, I recommend finding a reputable LLMD who has proven success with complex cases and work closely with him or her to find a primary protocol that works for YOU. Do your homework to find out what protocols they use at their clinic and research those as best you can. Chronic Lyme Disease and its subsequent co-infections manifest VERY differently in everyone's body and often overlap with other issues such as heavy metal toxicity, mold toxicity, candida overgrowth, and chemical sensitivity so you will need an LLMD who will not put you in box and listen to ALL of your issues and create a treatment plan that YOU can handle. Depending on your symptoms and if they have reached a neurological level, most likely you will need long term, heavy IV antibiotics, and supporting treatments, but if possible, find the best LLMD by clicking here  or here, that you can afford (in your area or if you are willing to travel) to see what she/he recommends. 

 

Sadly, many of the best LLMDs do not accept insurance and many treatments will be out of pocket. I have to be honest. If you can only afford to do a little treatment, this can be dangerous. Once you start to treat Lyme and its co-infections, you need to be as aggressive as you can handle and do not stop until you are ahead of the game. If you stop too early, you can create a massive mobilization of more spirochetes and make yourself even sicker. Many Lyme friends I know are in the position where they cannot afford or handle aggressive treatments so they manage their symptoms day by day as best they can and do manageable at home protocols when they can handle it. It's a very hard road and you can do your own extensive research to find out if there is a Lyme protocol out there that you can handle on your own, but again, I recommend working with a successful LLMD if you can afford it. Alternatively, there are many naturopaths, acupuncturists and chiropractors who follow Lyme protocols and you may find it more affordable to work with them, but be sure they have proven success with complex Chronic Lyme cases and not just with early stage Lyme patients. Feel free to email me with any questions. I am not an expert, but I have been through a lot with Nathanael, his mom, Hilary and his sister, Fee, and chances are someone in our family has tried a protocol, medicine,  supplement, or therapy out there that you are looking into. The best approach we found was an integrative one that combined alternative medicine with traditional/allopathic medicine. 

 

Here are some of Nathanael's most trusted and respected Lyme doctors (LLMDs) and resources to start your research. I will be adding to this list as I sort through N's papers:

Dr. Dietrich Klinghardt, Seattle, Washington

http://www.klinghardtacademy.com/Lyme-Disease/

N and I visited Dr. Klinghardt in 2003 before he was diagnosed with Lyme. Over the years, N tried many of his protocols. He found his treatments to be very aggressive and often hard to endure, but VERY well-researched and VERY effective if one can tolerate them long term. Most of all, he appreciated Dr. Klinghardt's progressive research and approach to dealing with each layer of a person's health rather that just attacking Lyme bacteria as an isolated factor.

Dr. Richard Horowitz, Hyde Park, New York

http://www.cangetbetter.com/home

N considered Dr. Horowitz one the best LLMDs in the world and agreed with almost everything he wrote about. We have several of his writings and books. I strongly recommend purchasing them for yourself and studying his protocols so you are armed with knowledge and questions for your LLMD or other Lyme practitioner. His protocols are cutting edge and based on 26 years of treating thousands of Lyme patients. 

Dr. Joseph Burrascano Jr., East Hampton, New York

English: Advanced Topics in Lyme Disease

Spanish: Topicos avanzados acerca de la enfermedad de Lyme 

Dr. Burrascano is no longer in clinical practice, but is one the world's foremost leaders in tick-borne disease research. This article, in English and Spanish, is a terrific start for beginners in Lyme research.

Brian Rosner, BioMed Publishing Group, Lake Tahoe, California

http://www.lymebook.com

Brian Rosner is a publisher and Lyme sufferer who seeks to help others through publishing unique Lyme literature that is unavailable elsewhere. N tried his Rife Machine protocol which was far too intense for him (likely because we had a cheap Rife Machine), but he heartily agreed with much of his research and approaches. He also publishes Lyme literature in Spanish. 

 

What are co-infections?

"Tick-borne infections are zoonotic—meaning they are passed from animals to humans. “Vectors” like ticks, mosquitos and fleas transmit the diseases from animals like mice, rats, and squirrels to humans when they bite. Ticks can carry many bacteria, viruses, fungi and protozoans all at the same time and transmit them in a single bite. The most common tick-borne diseases in the United States include Lyme disease, babesiosis, anaplasmosis, ehrlichiosis, relapsing fever, tularemia, Rocky Mountain spotted fever (RMSF). Diseases acquired together like this are called co-infections.

 

Coinfections may be common – at least among those with chronic Lyme disease. A recently published survey over 3,000 patients with chronic Lyme disease found that over 50% had coinfections, with 30% reporting two or more coinfections. The most common coinfections were Babesia (32%), Bartonella (28%), Ehrlichia (15%), Mycoplasma (15%), Rocky Mountain Spotted Fever (6%), Anaplasma (5%), and Tularemia (1%). A similar study in Canada found similar rates of coinfection in patients with chronic Lyme disease.

 

A person with a co-infection generally experiences more severe illness, more symptoms, and a longer recovery. Since Lyme disease was first identified in 1981, researchers have found more than 15 tick-borne pathogens that weren’t known before. New ones are still being discovered."

Excerpt taken from Lymedisease.org: https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/

 

Nathanael suffered from both Bartonella and Mycoplasma co-infections so his treatments were targeted towards these bacterium as well. Please ask your LLMD what considerations his/her protocol takes towards co-infections.

 

The Politics Behind Lyme Disease

"Lyme disease was famously identified in the 1970’s when multiple families in Lyme, CT, were afflicted with the same mysterious, painful symptoms. Controversy has surrounded the diagnosis and treatment of this illness ever since, with debates arising over nearly every aspect of this disease.

This includes (but is not limited to):

• Geographic distribution

• Diagnostic criteria

• Testing criteria

• Treatment protocols

• Duration/persistence

• Which ticks transmit Lyme disease

• Existence of chronic Lyme disease

This list is the tip of the proverbial iceberg, and volumes could be (and have been) written on each. Why is a single disease worthy of so much controversy? Why do so many Lyme disease patients end up sounding like conspiracy theorists (by the time finally they get diagnosed)?

 

Research on Lyme could use more funding, but in the mean time researchers are steadily adding to what we know about Lyme disease. Unfortunately, that new knowledge is not being incorporated into policies and guidelines. The CDC continues to post outdated information that was flawed to begin with, and to accept guideline recommendations from the Infectious Disease Society of America (IDSA) despite demonstrated biases and a clear lack of acknowledgement of best available science.

 

The Trouble with IDSA Guidelines

A panel of experts convened to compile treatment guidelines was almost entirely composed of specialists with vested financial interests in the outcome. This has been investigated repeatedly, even warranting a congressional subcommittee convened specifically to address the issue.

Guidelines include restrictions on the types of testing and interpretation of testing, along with limitations on the type and amounts of treatment. Studies have repeatedly shown that months or years of treatment can be required for many patients, for example, yet IDSA insists that 28 days of antibiotics is sufficient.

 

Here are just a few examples of outdated CDC-supported information that harms patients:

• Lyme disease can only be contracted in certain states

• Only deer ticks transmit Lyme

• Lyme tests only need to use the one strain current tests are based on

• 28 days of antibiotics is adequate

• Chronic Lyme disease does not exist

Timing is a huge obstacle, because testing too soon will miss the disease. Later in the illness, the disease resides in different parts of the body at different times, and is more prevalent in different forms at different times (spirochetes, cysts, and biofilms). Thus timing can cause the disease to be missed, so that many Lyme-positive patients take many years of testing to show up as positive.

 

If IDSA and the CDC were held accountable for the use of up to date, best available science, current treatment guidelines would look much different, and far fewer Lyme patients would be subjected to delayed and inadequate treatment.

 

Solutions: Up to Date Science, Revised Guidelines, Education

Doctors need the education and procedural freedom to properly diagnose and treat patients, understanding that:

• Two tiered testing is missing too many cases of Lyme disease to be considered reliable for diagnostically excluding the presence of Lyme;

• Lyme disease is a clinical diagnosis---laboratory testing is only one piece, and “CDC positive” is not a reasonable ‘end-all’ for interpretation of results;

• Assumptions about deer tick distribution are not adequate for delineating Lyme occurrence or probability of occurrence because:

  • Multiple species of ticks can transmit Lyme disease to humans (as recently confirmed by recent studies),

  • Geographic distributions of tick species and populations are not adequately known,

  • Distributions of many wildlife species that carry ticks are being altered by climate change, as are migratory routes and patterns of wildlife that carry (and migrate carrying) ticks;

• Symptoms appearing to be psychological or emotional in nature are very typical of Lyme disease symptoms and should be treated as the physiological symptoms that they are, rather than causing a patient’s illness to be discounted;

• Many or even most Lyme disease patients do not exhibit or do not notice a rash (mine was on my scalp and very easily initially missed);

• Transmission from tick to human can occur much more quickly than folklore suggests, so that relatively short duration does not negate the potential for Lyme transmission from an embedded tick;

• Not all patients recall being bitten---for those that do remember, even scientists may not correctly identify the tick species that bit them."

 

Excerpts taken from HubPages article:

"Why are Lyme Disease Patients Waiting Years for Treatment?" September 2014 

 

Lyme Disease Advocacy Groups:

International Lyme and Associated Diseases Society (ILADS)

Lyme Disease Association Inc. (LDA)

lymedisease.org

Lyme Research Alliance (LRA)

Tick-Borne Disease Alliance (TBDA)

 

A Final Alternative Treatment

One thing my family and I found that helps us far above ANY treatment throughout our difficult health trials and our time of mourning is PRAYER. We are Christians and believe in the power that resurrected Jesus from the dead to give us eternal life, blessings of healing, and sustaining grace. If you or a family member are in need of prayer, email me with your specific request and my family and I will get on it and see what the Lord does for you! 

 

Jesus said, "I came that they might have life, and have it abundantly." John 10:10b

 

Although Nathanael did not receive the full healing of his earthly body, we know he experienced daily miracles of faith, grace, and peace in the midst of a horrendous personal trial. The fact that he had a smile on his face each and every day was evidence of God's amazing work and love for him that he so easily extended to others. And while we miss his sweet, smiling presence in our daily lives, we rejoice that he is whole again, dancing, free and youthful because of the Lord's eternal healing that took place long ago on a cross in Jerusalem. Hallelujah! Nathanael is forever free from every disease, sin and affliction of this troubled life. We can't wait to join him, but until then, we walk by faith and not by sight.

 

 

 

 

 

 

 

 

 

Let us know if you have any comments or questions about the information on this Resources page. I realize our knowledge and experience is somewhat limited (especially without N's genius to guide me) so if there are other Lyme patients, caregivers or friends who feel I should include some other vital information, please email me or leave a comment.