Sick? From A Tick?
Case Histories - those who lived to tell
Amy Tan, Ticked Off About Lyme
Daryl Hall Discusses Lyme Disease Battle
Mel Clarke - Paralyzed by a tick bite
President Bush - treatment based on clinical diagnosis not blood test
Strange sickness: Mystery disease horror story
www.theintegrativedentist.com.
Quotes from Cases
'Before I was born, my mother had Lyme disease and didn’t know it, but gave it to me while God was making me in her tummy. When I was a baby, I was sick a lot with ear infections, colds and something named Bronchiolitis. My mom had a lot of health problems that doctors couldn't figure out until we moved from one state to another for Dad’s job. Then she was diagnosed with Lyme disease and so was my Dad.
There are times when my heart races for no reason and my stomach hurts sometimes. Headaches and neck pain are daily for me. If I am around a group of people for a while, then I come down with a cold, because my immune system isn’t functioning right. As for school, I stay home school because I would not be able to keep up the pace at a regular school. I need to be in a quiet place to think and I work at a slower speed than other students, but so far my grades are great.'
- L.L.
'In 1991, while on a trip to Jekkel Island, Georgia I picked about 50-100 ticks off my body. I did not realize the significance of this, no action taken. I was finally diagnosed with lyme in 2004. The symptoms I was experiencing were: severe cognitive problems: memory, stuttering, unable to sleep, unable to get up in the morning after no sleep due to extreme muscle, joint and head pain, coordination problems and many other CNS problem. Now it was no longer an option to continue with my job. I would be teaching a class and forget the material I was teaching, or even forget to show up for meetings or classes. This was devastating! I am able to do personal hygiene most days and maybe a little light housework, but most of the time I find myself in bed in pain. We have used ALL our savings and spent $430,000 to fight this illness. I have been evaluated and treated by over 50 practioners from since 1991-2007. '
- P.K.
'For several months, when I was at my lowest point, I was unable to care for myself or my children. Then the doctor decided that depression must be my problem so he prescribed antidepressants. He informed me that if needed, I could take up to three at a time. That night I did end up taking three pills because they didn't seem to be working and in fact ended up making the situation worse. I woke up in the early morning in a state of fear and with the thought that I needed help. As I went to the top of the stairs to call for assistance, I fainted and fell down the stairs. My seven year old son called the ambulance which took me to the hospital. At the hospital the doctors performed several tests, including a CAT SCAN of the head. When the doctor found nothing discernibly wrong with me, I was asked what I liked to do in my spare time. I told him I enjoyed boating with my husband. His only suggestion, before he sent me home, was to take more rides on the boat with my husband and that this would most likely make me feel better.'
'During those many years in limbo, I felt as if I had lost my connection to God. Lyme Disease had pretty severely affected by brain and nervous system which made it difficult even to think....never mind to experience spiritual feelings. I couldn't understand why I would have to go through a trial or experience which would make it so difficult to feel God's presence.'
- M.T.
'My family has Lyme disease. My five year old son suffers from Autism and severe Allergies. He was a healthy baby until bitten at 15 months. The tick bite was missed. He spent three years deteriorating before diagnosed with Lyme and Rocky Mountain spotted fever. He has been on oral antibiotics for ten months now. He is still sick. My seven year old was bit the same year. He is recovering after ten months on antibiotics. My seven year old has had many challenges in school due to joint pain, memory loss, difficulty in concentration, etc. Fatigue and joint pain plague me as I try to heal my children. Lyme disease has been torture for my family. This being allergy season I’m overwhelmed more than usual. The challenges children and parents face involving school staff and physician support should be recognized. Both of my sons have been refused support by professionals. The stress of trying to find help for a child with Autism and Lyme is Unbearable. 'I’ve had many doctors look at my son crying in pain and say it’s behavioral. My son has severe headaches and stomach problems.'
- J.H.
'I have an unbelievable case of chronic and now active lyme. I was training for Ironman Wisconsin in 2004 when I got re-bitten by a deer tick . I have been very, very sick ever since. I am a registered nurse and have been out on disability for three years now. Been misdiagnosed with depression but I am the least depressed person . '
- C.J.
'I only was diagnosed with Lyme two years ago. Previously had been diagnosed with: MS, CFS, Fibromyalgia, Narcolepsy, ADD, Microeschemic changes in the brain from unknown source. I had a stroke, I have neuropathies (also from unknown source according to three neurologists I saw over the years. '
- C.S.
'I am 54 years old. In 2001 I pulled a tick from behind my left knee, which started up the worst symptoms I have ever had. I had sweats and chills all day long, knee pain that was excruciating, nerve pain in my right thigh, horrible headaches and stiff neck, which I had before, but never this bad, am very unbalanced, weak in the legs, still have swelling under both knees but not too bad, absolutely severe fatigue, word-finding problems, forget things a lot, concentration problems, had nerve endings in my head which felt they were on fire so bad one night that I told my doctor I wouldn't want to live if this went on. I went to an infectious disease doc who practically laughed in my face, but did admit I had fibromyalgia. I went to Medical Center to a so-called Lyme specialist/rheumatologist who said I did not have Lyme, but had fibromyalgia. I have a rheumatologist who also said the same thing. I have never had a rash. I finally found a Lyme-literate doctor who saved my life. My doc's office is so full of Lyme patients that they barely have time to talk with you and change your meds. '
- K.B.
'I'm 27 and became debilitated at age 19. My doctors believe I've been infected since I was 5, however the Lyme never stopped me in anyway until I was 19. After 3.5 years I was diagnosed with Lyme, and began treatment. I've never found a treatment that has helped, however I have been on treatment continuously since my diagnosis. Antibiotics have never helped me. I am on SS and I'm a 8th year junior.'
- A.S
'Shortly after class started I had felt weird like the room was closing in and I could not breathe properly. I attempted to leave the room and passed out holding onto the door knob. I was embarrassed that I had fainted in front of a whole room of nurses. I tried to lift my head but blacked out again. The nurses thought I was having a cardiac event because my blood pressure was up as was my pulse. They called an ambulance and reassured me they would get my car back to my home town. In ER I was given an IV, medication for dizziness. I had an EKG, blood work and a CAT scan for the head and nothing showed up.
I would awake choking and coughing and trying to get my breath. I was still weak, shaky and my skin burned for hours and my feet didn’t work well. I seemed to have a weird shuffle gait to get them to move forward. I have to work hard to keep from getting confused. January my Lyme test came back positive. I was happy to get a diagnosis finally. I was so tired of tests and being a pin cushion (having had blood work nearly every week for months now.) I also totaled my test bills to over $10,000.'
- D.S.
'Lyme disease can mimic Lupus, ALS, MS, and over 200 medical conditions. Sir William Osler was quoted, "To know Syphilis is to know medicine." At one point, Syphilis was known as the "great imitator". This spirochete only has 20 genes; however the spirochete that causes Lyme has 132 genes. There are 12 known genospecies and one specific genospecies has over 100 different strains alone in the United States. Currently, the most common tests measure human antibodies of only A SINGLE STRAIN of this particular bacteria, which therefore makes testing grossly inadequate and unreliable. This is a formidable disease. '
- K.L.
'I had grown up thinking that the medical profession were godlike figures. You go there, tell them your symptoms and you will be cured, right? I lie awake in awe tonight, knowing how so many doctors I had put my trust in, paid good money to, and spent my precious time with, ultimately let me down. Is it really possible? How could they have not known? Every visit with the numerous doctors (too many to count now), started with the many symptoms that had taken over my life-incredible fatigue, bladder issues, numbness and tingling in my extremities, chronic sinus infections, headaches, dizziness, blurry vision, chemical sensitivity, muscle aches and weakness, having trouble finding words and an overall fog which is hard to explain. The thing about it was, I told these doctors, all my symptoms would clear after taking antibiotics. Knowing what I know now, there is no way they could have not known I had Lyme Disease. Some doctors early on were suspicious of the disease and I was tested. I was tested at 5 different times, by 5 different doctors, which ended up meaning nothing. It was not the correct test and it wasn't done at the correct lab. How can we live in a country where misinformation about such a prevalent and debilitating disease be so hard to come by? I am in awe. '
- L.N.
'I continued to go downhill physically and mentally. When I would present the same doctor with the new symptoms; poor balance, fatigue, depression, weight gain, GERD, sinus infections, pains in muscles and joints, high blood pressure, etc., I was just given one pill after another, but the Lyme was not treated again. This went on for one year until I could no longer walk up a flight of stairs or carry groceries, could no longer use my right arm, got lost going to familiar places, forgot how to use simple programs at my computer at work and was easily distracted. This once very successful Senior Business Banker for a large bank could no longer function in that capacity as I could now not remember my job even when I was being helped and coached. Even though I finally was referred to a Lyme Specialist who put me on antibiotics and stated that I was so sick that I would have to be on them for some time, I was forced to take a leave from my job. Since my symptoms had grown now to about 100, I was forced to give up my job permanently and now move to another state where the cost of living was less as we had lost my income '
- A.B.
'While in court the insurance doctor said I didn’t have Lyme disease and even if I did, I surely did not get it on the job (as a wildlife biologist?). The doctor said that my lyme test was not a valid one. My lyme-literate lawyers were kind and understanding since they knew someone with Lyme disease and understood the ups and downs of the illness. They tried to negotiate a settlement that would help pay for some of my lyme expenses. It might be all I would get for the rest of my life. I could be sick that long. Instead of justice I received three felony counts of fraud!!!
I spent a day in jail - without my medications, without comfort, without my walker. As a result of this I incurred huge legal expenses and used up the rest of the settlement on my legal defense. My lawyer recommended that we sue the insurance company. The insurance company eventually dropped the charges but indicated that they could be brought again at any time. My lawyer said that he didn’t believe we could prevail in federal court; even though we know they (insurance company) lied, cheated, and harassed you. '
- H.W.
'I woke up July 5 about 5:30a.m. Much to my surprise, I could not move my neck. It was not a stiff neck. It was not sore. It was locked up completely. It took me thirty minutes to curl up, roll over and do a push up in order to get out of bed. I drove immediately to the Emergency Room. The doctor decided that I had torticolitis. The first misdiagnosis in a line of many.
Lupus, MS, CRPS, sarcoidosis or any of many disease de jours. Along with this I have old things such as scoliosis, advanced degenerative disc disease and general allergies. The worse part of it all is my sleep pattern has never recovered. I NEVER sleep more than two hours at a time. I wake up. Sometimes I stay awake and other times I go back in for another two hours. The sleep is never restorative. A year and a half ago I began to have problems breathing and developed pink lumps on my legs
Finally, one day in early September, I asked the rheumatologist to test me for Lyme disease. I think he laughed quietly to himself as he pompously questioned why I would think that. That is rare in Kansas. I told him I was in the woods for many hours in June. He wanted me to produce my bullseye rash. I could not. I looked him in the eye and said, "Do you know what IS wrong with me?" He could not answer affirmatively. So why not try anything and everything, no matter how geographically ridiculous. I guess I knew he concurred when he called me on a Saturday night . The good news was the bad news and it was Lyme Disease.'
-T.O.
'My personal and professional life gradually disappeared into a frustrating land of doctors and insurance companies, strange illnesses and drugs. Ignorance. There is no Lyme disease in California. Now let's talk about your depression.'
- H.W.
'At age 15 I was diagnosed with Temporomandibular joint dysfunction which I still have and also have had ringing in my ears since then as well that won't go away. At age 18 I was diagnosed with having a heart murmur. We came home and I had a very odd case of the "flu" in the summer which had left me even more fatigued on a daily basis ever since. It went on to affect my thyroid and my adrenals and my eyesight. I developed chronic gastritis, gluten sensitivity and went on to develop Peripheral Neuropathy. We ended up moving states and I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. However, some other bizarre symptoms started to pop up, such as short-term memory loss, slurring words, forgetting how to type, sign my name, spell and not remembering how to find eggs one day in the grocery store. I walked around for an hour in a haze (brain fog) and then went home, but I didn't remember how I got home. Then my balance started becoming disrupted and I started to have problems with disequilibrium and had developed 10% hearing loss bilaterally found through audiology testing. My husband and I cried out to the Lord one night and I said, "If I could only touch the hem of Your robe, I know I would be healed!" Within two weeks, the Lord directed me to a Lyme Literate Nurse Practitioner who diagnosed me with Lyme disease 21 years after first being bitten at age 14. My diagnosis was clinical and backed up by positive serology, IgM, IgG and PCR. '
- K.L.
'I am still so sick, losing vision, blurred and double, pain, depressed, exhausted beyond belief, massive headaches, bruising without injury, night sweats, extreme cognitive difficulties, hear music on and off and constant ringing in my head, occasional small seizures (agravated by computer and fluorescent lights), shin bone pain, insomnia, irritability, occ. incontinent urine, periods of anger, pressure right side of head, loss of taste and smell, chemical senitivities, mold allergy, left sided throbbing pulling abdominal pain, shaking, sweating, numbness right arm, loss of taste and smell, muscle twitches right side, word finding difficulties, confusion, hyper reflexes when tested, right sided joint pain, temp 99-100, persistent trouble gaining weight. '
- L.F.
'Then in 1998, the heart problems recurred along with symptoms of central nervous system involvement. I experienced ataxia, paresthesias, symptoms of encephalitis and meningitis, peripheral neuropathies, etc. A constellation of other bizarre symptoms began appearing and the usual round robin of doctors’ visits, referrals, tests, disappointments, and frustrations continued. By January 2000, I had seen twenty-four doctors representing a kaleidoscope of specialties. I had lost 53 pounds and the crushing fatigue told me I was near death. '
'At this stage in my life I feel I have lost several years to Lyme disease in various ways. First my daughter, Tammy had it for nearly two years. After work I would drive over to her house, clean, do laundry and prepare meals for her. I used to roll her off the bed and change her sheets. She was tired, dizzy, achy and weak. It was hard for me as a mom and a nurse to see my 25 year old just lying there. She was really down and cried almost daily. She was deteriorating faster than my hospice patients. '
- D.S.
'I am a long time Chronic Lyme Disease, or late stage sufferer. My son , who is 33, has been on Social Security Disability for Lyme for the last 10 years. My ex-wife also, has a milder case of Lyme, mild enough to still teach, yet bad enough to have to treat it. I have had the usual litany of doctors and tests along with the insurance and disability provider horror stories. The usual Social Security nightmare; 3rd time was the charm. I am now on total disability, and have been since I became too ill to continue on at work.
There are plenty of other problems, not just the Lyme and it's symptoms. Not just the Babesiosis (which seems to have a pretty strong hold on me at the moment). Not just the trembling, the shaking, the 18 to 20 hours of sleeping and the fatigue. Did I mention the hormonal problems? Oh, and the memory problems, the weird sounds, the lights, the hallucinations, the seizures and the convulsions? Or the nightmares? The night sweats; the sleeping on towels and changing 2 to 8 t-shirts a night? How about the general disorientation and brain fog? '
- P.W.
'I was a totally healthy individual before the year 2001. How could I at the age of 39 begin to feel like I was a 100 years old? At this time my mood becomes altered and my overall frustration takes over my relationship with my husband and children. How could I be a fit mother when all I could think about was what was wrong with me and how I was going to fix it? At times, even my second graders homework directions seemed incomprehensible. Was I loosing my mind? '
- L.N.
'I was misdiagnosed for over 20 years. '
- B.N
'Years of fighting insurance companies and dealing with lawyers, at the same time dealing with a chronic illness in the family. We talked too much about it, were too angry, too depressed. Friends stopped coming. You don't really see it happening. And then they are gone. '
- H.P.
'My daughter has lyme disease. She was 12 when she had a tick bite in Orlando, Fla. and today she's 24 years old. I, my husband and the three girls were on vacation, spending our money in USA (we were not immigrants, but tourists). We live in Brasilia, the capital city of Brazil. After that, we have to go to US twice a year to see a doctor because here in Brazil we do not have Lyme Disease, and doctors here are not able to treat it. She has neurological LD but now She is better, still taking antibiotics. '
- C.P.
‘Bands 31 and 34 are so specific for borellia that they were used in the development of the failed vaccine, LymeRix, which actually caused some of those who were vaccinated to come down with Lyme disease, instead of preventing it. So, the CDC gives Lyme patients a back-hand in all of this too. We are a patient population that is maligned by media and avoided by doctors fearing for their licenses. It is a disease that has become politically charged due to insurers paying more attention to their bottom line than to caring for the health of their insured.’
- K.L.
‘I could hardly stand up and started throwing up. I felt like my head was going to blow off. The rest of the pain was worsening and I had a high fever. My friend came to check on me and cried ” you’ve never been so sick in your life!!! They called my doc and said to get me to the emergency room. I had lots of tests run, including a meningitis spinal tap. I couldn’t even stand the lights.
On Monday I get a call from the hospital saying I have tested positive for Rocky Mountain spotted fever. The doc called in five days worth of antibiotics and referred me to follow up with my regular doc who claimed that there was no way that I could have had RMSF. After two weeks of continued fevers and feeling like I was dying I called my doc and said, you know I don't come in to see you except for my yearly check up. If I am still running a fever, don't you think I still need an antibiotic?. He agreed to call in just five more days of antibiotics. He then referred me to seven different docs who basically said I had fibromyalgia and others who treated me as a ‘hypochondriac’. This continued for over a year.
An infectious disease doc sent my labs to the clinic for lyme testing. The test results came back negative so he shook my hand and said ‘good luck because you have nothing’. I was then re-tested and tested positive for acute lymes, ehrlichiosis, and babesia. I began treatment and after eight months soon started to get some relief from my treatment. My practioner (who was helping me) was soon brought up on charges before the medical board.
Next, my husband left me as he could no longer handle my health problems. So there I was a single mom with two teenagers - and left with nothing!!! Through friends, family and God, we have made it through. Although it has been a struggle at times. I don't think my kids fully understand, nor do they want to about the disease. It has become a norm for them to say ‘oh, mom is sick in bed again!!!’’
- V.C
‘One morning I woke up in our camper and felt extremely ill. It seemed as if I had the flu but the symptoms were in some ways atypical. I was very weakened and sick but yet I could not sleep. What was the most unbearable to me however, was the free floating anxiety or panic - for no discernable reason. I would find myself pacing the floor, desperately trying to get away from it. I remember saying to myself that I would not wish this experience on anyone - not even my worst enemy. In the weeks and months to follow, I would plead with my dear family , who was so supportive and understanding (even though they couldn't really understand ), to just put me away in a mental institution because I felt as if I was losing my mind and I did not want to be a burden.’
- M.T.
‘By 2001 it was like my brain and body were no longer connected. I fell down frequently, dropped things, couldn't find common words in my vocabulary, and I struggled to function. I felt like I was dying. The life blood was being drained out of me. My husband resented the fact that I was so sick and couldn't perform the way I'd used to, my kids mourned the activities and care they'd once gotten, and I was depressed and knew that I'd die if I didn't get someone to help.
And so, I continued to search for help. I sought out and found a physician. He did the blood tests and diagnosed me with Lyme Disease and Hypothyroidism. In 2004, I had a total knee replacement on my right knee. The knee was completely shot. I was diagnosed with severe degenerative arthritis. My left knee will eventually need done as well. The Lyme Disease bacteria lives off the connective tissues and destroys the joints. So, I continue to struggle with my illness, but had I not been my own health advocate, I'd be disabled or dead. Yes, people die from Lyme Disease. I've lost several people to this damned disease. In fact, some were people who I helped find a doctor and get diagnosed. I still live in fear that my infection now in remission will rear its' ugly head again. But I try to stay active, watch what I eat to support a healthy immune system, and to deal with infections quickly when I get one.’
- R.H.
‘In 1990 I was 51 years of age and living with my wife and three daughters on lakefront property in rural South Alabama. I was president of an investment brokerage firm based in which I had founded 13 years earlier. I exercised regularly with weightlifting, running, cycling, swimming, and hiking. I was a believer in proper diet and nutritional supplementation. I was six feet, four and a half inches in height and a rock solid 235 pounds. My routine physicals described me as having “excellent health” . . . until the fateful month of June 1990.
What followed became an all encompassing nightmare straight from the very pits of hell…. In 1998, the heart problems recurred along with symptoms of central nervous system involvement. I experienced ataxia, paresthesias, symptoms of encephalitis and meningitis, peripheral neuropathies, and so on. A constellation of other bizarre symptoms began appearing and the usual round robin of doctors’ visits, referrals, tests, disappointments, and frustrations continued.
“Mr. R, you are the healthiest man your age I have ever seen. You need to go home, stop seeing doctors, seek professional counseling for your depression and take St. John’s Wort.” But aren’t you going to test me for Lyme disease? “No.” Are you going to test me for any other infectious disease you can think of? “No.”
In June of 2003, after 3 ½ years of very aggressive A/B therapy, I abruptly stopped all A/B and began treating myself with an EMEM 5 Rife machine. I experienced immediate Herxheimer reactions to the treatments followed by a level of well being and improvement unattained previously by A/B therapy. After four months of Rife therapy, I began a detoxification program utilizing a selection of herbs, vitamins, and minerals. These were combined with the ingestion of two capsules of TOA free Cats Claw per day. Very pronounced Herxheimer reactions began within 24 hours. Also, the appearance of pus filled lesions on my face, arm, and leg, diarrhea, a swollen and tender lymph node and then, very rapid improvement. Myalgias, weakness and fatigue faded very quickly. Approximately 1½ months later I began taking the herb Artemisinin for treatment of the Babesia infection. Response was rapid with Herxheimer type symptoms, followed by improvement. It is estimated by some that approximately six months of Artemisinin therapy is required to clear the infection.’
- R.R