Vermont-Lyme-Support-Network

Living with Lyme - My personal story

Living with Lyme

By Sallie Mack, Homeopath

“Epidemiologic data suggest that the actual incidence of Lyme disease could be as much as 10 times higher than CDC data indicate. This probably is the result of a restrictive case definition for the CDC, inevitable misdiagnosis and the fact that physicians tend to underreport reportable diseases of all kinds.” 

-Jonathan Edlow, M.D., Harvard Medical School




All who live in New England or travel to the North East, all should be aware of the dangers, signs, symptoms and preventions, associated with Lyme disease.  Unfortunately, “facts” about Lyme are mixed. Testing is inadequate and may have a high percentage of false negative results, particularly in the case of long term or chronic Lyme. Many symptoms are similar to and thus categorized as Fibromyalgia, Chronic Fatigue Syndrome, ALS and wandering arthritis. As a result of these factors, Lyme may go un-treated or misdiagnosed. There is a lot to learn about Lyme.

 I would like to share my story of Lyme.  I moved to Vermont from Alaska in 1993 and would often visit my in-laws in Connecticut. On such visits, I became violently ill with flu-like symptoms in the middle of the summer; fever, vomiting, achy joints, loss of strength in my grip, elbow and shoulder pain, recurrent stiff neck, brain fog and fatigue.  Many of the symptoms I assumed were food poisoning, over-stressing my arms by building and remodeling my homes, and gardening.   Because I also teach guitar and  play professionally, I thought it may be a repetitive stress injury. I began having night sweats, and irregular heart beats, but assumed that because of my age, I may be entering into menopause or certainly peri-menopause.  My symptoms worsened over the years. I sought help from my doctor, who ran tests without any positive or definitive results. What was causing this debility?  Fourteen years later, in 2008, my doctor suggested that I see a neurologist, who diagnosed me with Fibromyalgia (a constellation of symptoms with unknown origins) and Hyper-mobility (an inherited condition that affects the connective tissues of the body). Then my doctor suggested I see psychologist, implying that my symptoms were psycho-somatic.

While in graduate school to become a homeopath, a Naturopathic Doctor concluded that I have Lyme disease, based upon my symptoms.  I had my M.D. administer another Western Blot test, the so called, “Gold Standard,” and again the results were negative. After reading Stephen Buhner’s book, Healing Lyme, it seemed obvious, based upon my symptoms, that I must have Lyme disease. I began an intensive herbal protocol, a detox and rebuilding regime.  Finally, after another six months, I convinced a physician and local Lyme specialist to take me on, even though his practice was full and was not accepting new Lyme patients.  He administered a blood test that is much more sensitive, called Lyme IgM Western Blot, from IGenX, Palo Alto, California, that is much more accurate. It was confirmed, I have Lyme disease and have had for many, many years, along with a co-infection called Bartonella, as well as heavy metal toxicity. Thank you!  So, I am not crazy!

Lyme disease is caused by a particular bacteria, called a spirochete (spir-o-keet). These are some of the most ancient bacteria on Earth, having been around billions of years longer than humans, and they are very clever! There are over 200 different species. The word spirochete means coiled hair, as that is what they look like under a microscope. There are eight different genera, some of which can be harmful to humans.  The organism that is causing the Lyme disease in the US is Borrellia burgdorfei.   All of the borrelia species are pathogenic; that is, they will cause disease.

 Lyme spirochetes resemble a cork-screw-shaped worm that invades its host’s blood stream and then finds it way to the connective tissue sites, in which they colonize by screwing into and multiplying in the tissue.  Sites such as the knees and aqueous humor of the eye, most joint tissues, spinal column, the heart tissue and the brain, all have the perfect viscous medium. The spirochete, being highly mobile, move around and colonize.  A bio-shield or film encapsulates them and makes them very difficult to detect and to treat. Like many pathogenic bacteria they alter themselves rapidly, and because of excessive anti-biotic use, they have become resistant to most antibiotics. Unfortunately, Lyme spirochetes can rapidly rearrange their gene structure to hide from antibiotics, while at the same time avoiding the host’s immune systems.  

 Once the tick larva, about as small as a period at the end of the sentence, attaches and releases its saliva into the host’s blood stream,  a series of complex reactions begin,  basically inactivate the host’s innate immune system. Brilliant!  The spirochetes alter themselves in a variety of ways to enhance the potential infection. Some 37 changes to the outer protein membrane of the spirochete have been found to occur so far.  Lyme spirochetes are exceptionally good at rapidly altering their structure in order to evade the host’s immune responses and to better the chance of colonizing different parts of the body.

 Lyme spirochetes love collagen tissues, i.e., the joints, aqueous humor of the eye, the meninges of the brain and other collagen sites like the skin, and heart tissue. Typically, they live deeper within the tissues than most other kinds of bacteria.  Lyme infection, like many chronic conditions, produces an imbalance in the Th1 and Th2 immune complexes. These T cells are the helper cells for the immune system.  There are three stages of Lyme, early, early-disseminated and late stage.  Early detection is within the first few days or weeks of infection. The middle stage is when the disease begins to spread, but is not yet entrenched.  Late stage or chronic is when it has penetrated many parts of the body and has established itself as a chronic disease.

 This is a very simplistic view because Lyme’s progression is markedly different for each infected person.  Treatments vary depending upon the stage. As time goes by, the organisms adapt themselves to the person they inhabit and adjust to the immune response in that individual. They also alter their genotype, making their offspring more viable to continue to colonize the host. Early detection is the easiest to treat, while the more advanced stages take longer and need a stronger antibiotic regime. At this time, there is no cure for late-stage Lyme, and many experts are using a combination of an herbal protocol and antibiotics.  There are three things that must occur in order to bring the symptoms under control: 1.) Penetrate the bio-film or outer membrane of the spirochete and kill it.  2.) Detoxify the system of neurotoxins (bi-products of the die off).  3.) Rebuild the damaged connective tissue.

 Here is a list of symptoms commonly found in most patients infected with Lyme:

 *Erythema migrans (EM) or the bull’s-eye rash (not all will have this)
* Multiple Em Lesions ( 1 in 5)
* Acrodermatitis chronica atrophicans- Inflamation of the skin on the extremities (generally late stage)
* Borrelial lymphocytoma
* Continual low-grad fever
* High fever or chills or sweating (usually indicates a bacterial co-infection)
*General flu-like symptoms
* Frequent headache, stiff neck
*Regular to moderate muscle or joint pain
* Severe unremitting headache
* Bell’s palsy
* Mental confusion or difficulty in thinking
*Disorientation, getting lost, going to the wrong places
* Lightheadedness, wooziness
* Mood swings, irritability, depression
* Disturbed sleep
* Fatigue, tiredness, poor stamina
*Vision blurry or with floaters and/or light sensitivity
* Feeling of pressure in eyes
* Stiffness in joints or back
*Twitching of face or other muscles
* Neck creaks, cracks or stiffness, pain* Tingling, numbness, burning or stabbing sensations, shooting pains
*Chest pain, heart palpitations
* Shortness of breath, cough
* Buzzing or ringing in ears, sound sensitivity
* Motion sickness, vertigo, poor balance
*Sudden hearing loss
*Tremors
*Weight gain or loss
*Swollen glands
* Menstrual irregularity
* Irritable bladder or bladder dysfunction,
* Upset stomach and/or abdominal pain

 Ticks that carry Lyme disease often carry other infectious agents, known as co-infections. The most common are babesia, ehrlichia. and  bartonella. Co-infection rates in humans have been found to be between 39% and 60%.   Babesia co-infections tend to be the most numerous;  about 80% of Lyme patients carry it. in addition to Lyme. Erlichia occurs in about 3%-15% of Lyme infection.  Bartonella in less than 5%.  All three of these co-infectious agents are considered to be emerging infections. All have been recognized as unique epidemiological agents since the 1990’s. Much is not known. What is known is that the severity of the disease caused by each of these of organisms increases if there is a co-infection with Lyme spirochetes.  These organisms are highly synergistic with one another.  Once again, detection with current tests is unrelieable.

 Antibiotic treatment is standard within the first weeks of contraction.  However, the literature reveals that antibiotics are not nearly as effective as they are purported to be. Studies show effectiveness rates for antibiotics are approximately 70%-95%, depending on the study. Rarely included in these studies are the statistics of a 35% relapse rate.  I believe that the standard protocol for treatment of early onset of Lyme-  a course of antibiotics for two weeks, may not be long enough to kill off the bacteria.  Only one-third of the infected population will exhibit the rash or bull’s-eye rash.  The longer the Lyme infection goes untreated, the greater the chance of it not responding to antibiotics.  Homeopathy and other herbal protocols have shown to be helpful in all stages of Lyme disease. Obviously, there is a lot to learn. If you suspect that you may have Lyme, based on symptoms, and the standard Western Blot test fails to show reactivity, I recommend that you request a more accurate Lyme test, such as The Lyme Dot Blot Assay or LDA, used to detect the Lyme antigen in urine. Or a Reverse Western Blot or RWB:  Rapid Identification of Borreliea burgdorferi or RIBb test (www.Bowen.org) for a confirmation of Lyme infections before years go by and the symptoms become entrenched. Please see the following pages for references and tests.   For more information, I urge you to read Stephen Harrod Buhner’s book: Healing Lyme, found at the Middlebury Natural Food Coop.

If this story sounds familiar, please do whatever it takes to get an accurate diagnosis and find a Lyme Literate Doctor....If I were a betting person, I would bet a large sum of money that you have Lyme.  Do not let the medical community tell you that, "Lyme Disease is difficult to get and easy to treat."   ALWAYS insist on the antibiotic Doxycycline, in a 1 time 200mgs for treatment with ANY Lyme tick that has attached, NO MATTER how long it has been attached. Never take NO for an answer or "let's' wait and see",  if there are symptoms. It is your life and your health.  There are many medical practitioners and well known and established medical facilities that do not believe there is such a thing as chronic Lyme.  Again, don't assume that they know what they are talking about, they do not. 

                        Your Mantra for Healing is: Kill/Detox/Rebuild

Reference: Healing Lyme, by Stephen Harrod Buhner

 Sallie Mack is a practicing homeopath in Charlotte, Vermont.
Website:   vermonthomeopathy.com