Lyme Stories from North Carolina Residents
Raleigh, NC - Real Lyme Stories
Raleigh area - Real Lyme Story One (Raleigh)
In March of 1998, our family moved to a new subdivision which backs up to Umstead State Park. I immediately began working in the yard to create a garden and spent a great deal of time there. I pulled numerous very small ticks off of me in '98 and '99 and even had some flu like symptoms but the only tick-borne illness I was familiar with was Rocky Mountain Spotted Fever so I didn't equate my symptoms with the ticks I had pulled off of me. Severe muscle and joint pain set in. I had seen my family physician numerous times, was given trigger point injections and treated with anti-inflammatory meds. In July of 2000, during a visit to the doctor, I saw pamphlets on a new vaccine called the Lymerix Vaccine. With the knowledge that one of my neighbors had just been treated for Lyme, I asked the dr. if this is something I should consider. The doctor said if you can see deer from your house then you are a good candidate for the vaccine so I got the vaccine. Shortly thereafter, the muscle aches and joint pain worsened, I began to become extremely fatigued and I also had "brain fog." Over the next few years, I was referred to an orthopedist, neuromuscular massage specialist, the Carolina Back Institute, a physical therapist, neurologist, spine specialist, and a rheumatologist. The rheumatologist diagnosed me with fibromyalgia. I continued to take anti-inflammatory meds, received trigger point injections, sometimes with steroids, and also began taking something for sleep, however the fatigue, pain and "brain fog" continued. A friend encouraged me to get tested for Lyme stating that a friend of hers who had been diagnosed with fibromyalgia turned out to have Lyme disease. I asked to be referred to an infectious disease specialist and tested positive for Lyme disease on both the Western Blot IGG and IGM (over 5 bands were positive). I also tested positive for a co-infection (Ehrlichiosis). I began a regimen of antibiotics in April of 2004 and by January, 2005, I felt 95% better. I stopped taking antibiotics but unfortunately I have had a few relapses. My doctor indicated that it was difficult to prescribe another course of antibiotics for me as the N.C. Medical Board was now very strict about prescribing additional antibiotics for long-term Lyme, even though he showed my primary diagnosis as chronic/persistent Lyme. He suggested we connect with a medical facility in Connecticut or New York where they deal with a lot of Lyme disease. I continue to go out of state for medical treatment.
In another situation in Raleigh, the person began to suffer with severe arthritis and fatigue and had remembered a tick bite that took a long time to heal. Knowing of my situation this person asked their doctor if it could be Lyme and was told that we did not have Lyme here. After being persistent and requesting testing, this person was diagnosed with Lyme and treated with several months of oral antibiotics. The debilitating symptoms disappeared and this person is now completely healthy and has been for several years.
A friend called in early 2008, concerned about a tick she found imbedded and was not sure how long it had been there. She had already called her physician and asked if he would prescribe a short course of Doxycycline but was told no. He said she would have to wait until she exhibited symptoms. I suggested she see an Urgent Care Physician, which she did. She called me later that day to say thank you. The Urgent Care doc not only gave her a 21 day prescription for Doxycycline but also told her it was the right thing to do and that she should thank her friend for encouraging her to get preventative treatment. He also told her that he didn't understand why so many of the physicians in our area were reluctant to treat possible tick-borne illnesses early because early treatment could prevent so many potential problems that could occur later.
There are many stories such as these that continue to come to light in our area and my hope is that changes can be made to help prevent others from suffering from tick-borne diseases, to better educate the doctors, and to allow doctors to treat their patients sufficiently for these diseases so that we do not have to go out of state to get appropriate treatment.
Raleigh area - Real Lyme Story Two (Raleigh)
I am a 48 yr old male from Raleigh. I have been sick since 1992. At first I suffered with sever fatigue and sleepiness. I could tell something was wrong .I went to many doctors without any real diagnosis. I was told I had chronic fatigue syndrome. I never really believed that was a true diagnosis . As time went by I got sicker and sicker with brain fog and flu like symptoms. When I would go to a new doctor he would usually do a Lyme test and every time it would come back negative. I was getting sicker and sicker until I was nearly bed ridden. I was experiencing headaches as well as other symptoms so I finally went to a neurologist who did an MRI of the brain, a spinal tap and a Lyme blood test. All were normal or negative. Finally in the fall of 2007 a friend told me he suspected Lyme. He told me to get my blood tested by the Igenex lab in California, which only tested for tick borne illnesses. When the test came back the doctor that drew the blood told me that she interpreted it as negative even though the igenex lab standards said it was positive. I did some digging and found a LLMD and this doctor said I definitely had Lyme. My first real diagnosis in 15 years. I am now in my 15th week of treatment. I am very grateful to finally have a true diagnosis and treatment.
Raleigh area - Real Lyme Story Three (Triangle)
My name is Louis and I have Lyme, Babesiosis and Ehrlichia and I have had RMSF in the past. I have had Lyme for at least 17 years. I suspect that I have had it many more years than 17. I was self-diagnosed originally and received treatment in NC only after literally throwing a tantrum in my doctor's office. I also had an acquaintance who is an ID doc who managed to get me 2 weeks of IV rocephin. Years passed and I relapsed and sought more treatment. I was glad to find that we had a good doc right here in NC. I have had treatment from this doc, who is no longer in NC but was forced to move to SC by our wonderful NC Medical Board. I know you know the story so I will tell you that this man basically has given up everything to treat us. He gave me my life back. I am doing well due to his medical skills.
Additionally, 5 other members of my immediate family have this disease. I will give you all of our initials and info as well as my own. I hope that you will keep my name confidential but if you ever need a letter from me or for me to help you, please let me know. I will be glad to speak up. Currently, all who know me are probably sick of the word "Lyme!"
Our info is as follows:
- LY - Orange County- diagnosed 1992, treated in NC and SC
- DD - Durham County - diagnosed 2005 after 15 years of misdiagnoses, treated in NC & SC
- AN - Durham County - diagnosed 2006, age 13, unable to get treatment in NC but now goes to SC
- TS - Guilford County - diagnosed 2007, treated in NC & SC
- YA - Orange County - diagnosed 2007, treated in SC
- AM - Orange County - diagnosed 2007, treated in SC
All of the above are my children or grand children. I also suspect that my other two children and my husband may have the disease. They are all resistant to the idea. All of the above were resistant to being tested but after the first one agreed and came up positive, the others slowly came around and agreed to testing. So, 6 out of 6 tested had one or more tick borne illness.
Not a day goes by that I don't meet someone who has Lyme or who has a friend or family member with it. I am aware of several who have died because of it. I don't know where Dr. Engel gets his info but it certainly doesn't seem to come from the world that I live in. My vets can diagnose and treat these diseases. I don't understand why my medical docs can't do the same. It is really pathetic.
Please let me know if I can help you. I live in Orange County, just west of Durham. My husband was an aviator for 30+ years and I also worked in aviation for the state.
Raleigh area - Real Lyme Story Four (Apex)
In 2004 my son was a healthy, academically strong, athletic young man. In April of that year he was bitten by a tick in our neighborhood in Apex, NC. After approx two weeks of flu-like symptoms he was seen by our PCP who noted his complaints of fatigue, fever, chills, and pain in his side, legs and especially his knees. Standard IgG and IgM tests were performed. Although the results were negative he was treated with two weeks of antibiotic and told to call back in a week if symptoms persisted. In October and November of 2004 he began experiencing extreme sinus pain with frequent headaches and was referred to a neurologist. Despite treatment with a laundry list of triptans that progressed to Imitrex injections, he continued to experience migraines for periods of up to two weeks in duration. He was diagnosed with Chronic Daily Migraines, given multiple IV treatments within the neurologist office and finally had to be admitted to Wake Medical Hospital in February of 2005 for DHE therapy. As his health deteriorated, his absences from school increased causing him to fall behind towards the end of middle school. After graduating the Eighth grade, he continued experiencing sinus pain and pressure along with the chronic migraines. CT scans and MRI testing showed no physical explanation for these challenges. Initial pain medications were no longer effective so the medications and dosage were increased to treat the symptoms. Additionally he began to experience lower back pain. In November of 2005 he was hospitalized again after testing within an emergency room confirmed his gall bladder was diseased and required removal.
In February of 2006 the continuing sinus pain and migraines forced him to be enrolled in a home based on-line program to accommodate for the increasing absences. His health was under constant attack, his grades were no longer a reflection of his real abilities and now he was cut off from the social support of lifetime friends. In June of 2006, his back pain increased and was now causing pain and numbness in his left leg. MRI's confirmed degenerative disc disease and he was given stronger pain medication, muscle relaxers and physical therapy. In October of 2006 he visited his PCP for constant ringing in his ears, chronic migraines and balance issues. Another CT scan showed no physical reason for these challenges.
In 2007 his back pain worsened, sending him back around to his PCP, neurologist and neurosurgeon. Five MRI's and a nerve conductive test were all inconclusive. Again no physical explanation was found. The neurologist suggested he come back in six months to perform more testing in hopes that "something would present itself." His pain medications were increased again. The numbness, weakness and constant pain initially on his left side have progressed to his face and now to his right side. After years of inconclusive test results and an escalated pain management regime that now include daily use of Morphine and Valium, I requested our PCP to test him again for Lyme disease. After the standard Elisa and Western Blot tests results were negative, I coordinated for him to be tested using the Igenex Western Blot test. His results were IgM positive. Additionally extensive lab work was performed to rule out numerous other conditions. All lab results to date have been normal, except for the Igenex results. He was then diagnosed with Lyme Disease by an infectious disease doctor and has now begun antibiotic treatment. I am told he is in for a long battle.
My son has lost his high school years. While his hometown friends prepare for their proms, graduating in May and look forward to their freshmen year in college, my son merely hopes for a day that's free of pain, fatigue and being overwhelmed by symptoms beyond his control. The health issues that he has endured could have been avoided, but instead he has been stripped of some of his most important adolescent years. I implore you to help provide our medical community with the knowledge and tools to eliminate more unnecessary suffering.
Raleigh area - Real Lyme Story Five (Clayton)
I was exposed to Lyme disease June 2002 in Clayton NC; didn't actually see the tick, but developed classic EM rash. Treated by local PCP (Garner Internal Medicine in Garner NC) with doxycycline for 3 weeks. 18 months later I developed symptoms that turned out to be ehrlichiosis, diagnosed in Huntersville NC (Jemsek Clinic) by titer. They also confirmed earlier LD exposure with Western blot. I took a variety of oral antibiotics from June 04 to November 05 and have remained symptomless since (...I think; there are a few things going on that are probably unrelated but I do not know yet, and perhaps never will.)
In retrospect my local PCP followed the textbook and the presentation of EM rash took most of the diagnostic challenge out of the process. While it might have been a good idea for the doxycycline to have gone on longer, what he didn't know to do was test for co infection. It is possible that I got ehrlichiosis in a separate exposure but testing for all the tick borne afflictions when exposed to any of them might be a better standard of care (provided that the tests are reliable and dependable, which I must question.)
I should add that before I went to Jemsek Clinic I went back to my PCP with ehrlichiosis symptoms and he diagnosed tendonitis without doing (or probably even thinking to order) tests for tick borne afflictions despite my history. When Ibuprophen failed to resolve them my wife found Dr. Jemsek through Dr. Jordan after deciding we wanted to rule out LD and to that end deal with a specialist.
So having contracted LD at a time when its presence in our state was, I believe, still being officially denied and finding medical care that more or less dealt with it I suppose mine is a success story, even if they did subsequently bankrupt and banish my specialist to South Carolina.
If it would be helpful you may use my name and the circumstances of my case in any interaction you might have with the NC DOH.