One Woman’s Journey Through Lyme

by Sue Massie (N.D. Candidate)

Mysterious Symptoms for Years
At 42, with six lovely children and a wonderful husband, I thought my life was over! I was very ill with migraines, slurred speech, difficulty swallowing, atrophy in my muscles, excruciating pain throughout my body, memory loss, light and noise sensitivity, etc. These are just a few of the symptoms I suffered from on and off over the years, and they were progressively getting worse.

Paralyzed From The Neck Down
I eventually became paralyzed from the neck down, and developed an ALS-like condition.My husband was also very ill with debilitating symptoms including “buggy” eyes, migraine headaches, rib pain, radiating jaw pain, chest compression, fatigue and a racing heart (intermittent). We spent years trying a number of neurologists, cardiologists (including Yale), and all kinds of specialists, only to be given a new diagnosis with each visit. These included TIAs, Grave’s disease, possible MS, and even stress. Finally a Lyme-literate neighbor suggested my husband might have Lyme disease. I thought it was a ridiculous idea because my dad was supposedly the first case diagnosed back in 1980 in Monmouth County, New Jersey, and he was just fine (or so I thought). Our neighbor handed me the list of symptoms, and my husband had just about every one of them! I asked for her doctor’s name and we saw him immediately. He diagnosed my husband with Lyme disease and treated him with long-term antibiotic therapy. Six months after his diagnosis, I was also tested and diagnosed, and I started treatment as well. Five out of six of our children have now been diagnosed with Lyme disease* and had to be put on a special educational program to help them with their studies. (Lyme can often affect children and contribute to ADD, ADHD, memory problems, dyslexia, anger outbursts, fatigue, etc.)

102 ALS Patients Tested Positive For Lyme - In Treatment
I have talked with over 8,000 people with Lyme. 102 of these cases are ALS-diagnosed patients who were properly tested for Lyme and came up positive. I feel that people who are diagnosed with ALS/Lou Gehrig's disease, Multiple Sclerosis, Alzheimer’s, Lupus, Fibromyalgia, Chronic Fatigue and many other neurological and degenerative diseases, could actually have Lyme disease. To date, there is no definitive, 100% positive test for Lyme disease. However, patients should request (from a Lyme-literate doctor) to have a PCR test (to determine genetic material of Borrelia) or a Western Blot blood test (antibody assay) done by Igenex Labs in California (www.igenex.com). Most doctors are following the diagnostic protocol of doing a Lyme titre or ELISA test, which are not accurate. If a patient who has Lyme disease actually tests positive using the Lyme titre or ELISA test, their doctor would then order a Western Blot blood test. According to the Center for Disease Control, a patient must have a minimum of five bands (specific numbers and bands are how they read these tests), in order to be labeled positive for Lyme by Western Blot. Another important consideration is that Lyme antibodies must be present for a positive result, and if the patient has been taking steroids, Advil, Motrin, or other anti-inflammatories or antibiotics, this could cause a false-negative result. For this reason, patients should be clear of all OTC’s and prescription medications for a minimum of six weeks before testing, but even this cannot guarantee an accurate result.

My Lab Results Would Have Been Considered Negative
After testing, I only had one band - number 41, which is the “flagellin” (or tail) of the spirochete, specific for Borrelia bacteria (Lyme), so I would have been told that I was negative. Quite often, patients have to be diagnosed by symptoms alone. I know that most people reading this story probably know of someone who has been to various doctors, and is suffering without an adequate diagnosis, and people just label them as being a hypochondriac, etc.

Initial Signs Often Missed
Lyme disease is not necessarily associated with a “bull's eye rash and sore knees.” Less than 20% of patients ever see the tick, and less than 30% get the classic bull's eye rash. Tucking your pants in your shoes or wearing white so you can see ticks does not provide full protection. I was the only one in my family that saw a tick on the back of my hand, and only my one son had a rash (not a bull's eye, but more like impetigo all over his body). Co-infections are also a big part of Lyme, meaning not only do the tiny ticks infect you with Borrelia bacteria, but there is also possible infection with Babesia, Ehrlichia, Bartonella, mycoplasma, and the conditions of Epstein-Barr and HHV-6 (human herpes-6) viruses.

Dedicated To Helping Others
I have talked with thousands all over the U.S., including Hawaii and Alaska, Great Britain, Germany, Australia and even Japan. I am now a Certified Natural Health Professional. My health has improved about 95% and I have been off antibiotics for 2 years (after being on a multitude of them for 3 1/2 years). It has been a long journey for me, but now I am dedicated to helping others heal from Lyme.

Sue Massie is a Certified Natural Health Professional, an Iridologist, and is currently finishing her studies to become a Naturopathic Doctor. Contact: Nature's Garden of Health, Fair Haven, NJ, phone: (732) 933-4011, email: suemassie45@aol.com