Our Story
Who would have ever thought that time spent in the garden I loved so dearly would have caused us all so much pain...
I have always been a person who loves the outdoors. I have always spent as much time in my yard as I could. So, when I was pregnant with my third child, it was no different. During my first trimester, I spent a considerable amount of time working in my garden at our suburban home near Albany, NY. I don't remember a tick bite. I never had the "bulls-eye" rash. I just remember waking up one morning with extremely swollen glands in the right side of my neck, believing that I was going to come down with something, and then it just went away.
A few weeks after that, I had become increasingly fatigued and everything seemed to ache. I dismissed it as just pregnancy symptoms and never gave it a second thought. Then one morning I woke up with what I thought was a pinched nerve in the right side of my back. I was about fourteen weeks pregnant at the time. I had a strange, tingling sensation which extended down my leg. I was told to lie down and rest, which I did. The tingling began to progress to all four extremities. The next day I began to lose fine motor function in my hands. I immediately went to the ER at a local hospital and was admitted to the neurology unit with suspected Guillian-Barre. During my time there, my symptoms progressed to include numbness in all four extremities, face, and abdomen, tachycardia (fast heart rate), unsteady gait and balance difficulties, tinnitus (ringing in the ears), and a plethora of other bizarre symptoms. Around this time, my parent's, (who were also my neighbors), dog was diagnosed with Lyme disease. I was convinced that I had Lyme disease, but none of the physicians felt that my symptoms were consistent with Lyme. Despite my strange symptoms, my tests all came back relatively normal. I did have one positive Lyme ELISA and one equivocal ELISA and a slightly abnormal white blood cell count, but my MRI, lumbar puncture, and nerve conduction studies were all normal. The Western Blot eventually came back negative.
The day before my discharge, I began to experience terrible head and neck pain and the left side of my body had begun to twitch and move involuntarily. I was still discharged and returned home. A day after my discharge, I was back in the ER. I had begun vomiting and was unable to eat or stand upright due to the pain in my head and neck. I had lost ten pounds in less than a week and the left side of my body was still twitching uncontrollably. They ran more labs at the ER which showed mild hypoglycemia, but were otherwise normal. I was told that there was nothing medically wrong with me and that I should "see someone to evaluate my level of stress". I was discharged from the ER and sent home. Less than 24 hours after that trip to the ER, I found myself sitting in the ER at a different hospital. My symptoms had continued to progress and I was becoming increasingly ill. My OB admitted me to the hospital for hyperemesis. I was given IV fluids and round the clock demerol and phenergan. I was given one dose of IV rocephin because of the possibility of Lyme, but that was not continued. I was stabilized and sent home after a few days.
Things seemed to settle down a bit after that. I was still tired and everything ached and my feet were numb, but the most severe symptoms had dissipated. I was still convinced that I had Lyme disease, but no one would listen to what I had to say. I had an old prescription for amoxicillin, so I began taking it. Within a few days, I began to feel better, but that was short lived. After about a week on the amoxicillin, I began to have severe abdominal pain. Afraid that I was causing more harm than good and frightened for the well-being of my baby, I stopped the medication. The abdominal pain was gone, but my symptoms were back.
Not long after that, I saw an infectious disease doctor for possible Lyme disease. He ran a number of tests, including additional Lyme tests. My Western Blot was "negative", but showed one reactive IgM band at the 23kd location. (I have since learned that this is considered to be equivocal by many Lyme literate doctors.) The lab also only listed the bands included in the CDC's diagnostic criteria, so I do not know if I had a response to any of the other bands. I did have an elevated ASO titer and was misdiagnosed with acute rheumatic fever and placed on low dose prophylactic penicillin therapy. Life was quiet for a while.
In December of 2004, I delivered my third child; a beautiful and healthy baby boy. Other than being very jaundiced for the first two months of his life, he appeared to be perfectly normal. After his delivery, I went to see a rheumatologist because I was still experiencing significant joint pain. He ran more Lyme tests, which were of course negative. He also told me that there was no way that I had acute rheumatic fever. He informed me that I "had as much muscle tone as someone who had been bedridden" and that I should "lose weight, exercise, and come back to see him in a year." Needless to say, that was the last time I saw that doctor. Since I no longer had the diagnosis of acute rheumatic fever, I discontinued the penicillin.
That June I found out that I was pregnant again. That was the beginning of a terrible turn in my health. I began experiencing severe abdominal pain and diarrhea, tinnitus, major balance difficulties, spontaneous bleeding in my fingers, low B12 levels, headaches, increased joint pain and fatigue, attacks of severe hypoglycemia, syncope, hair loss, strange visual disturbances, joint deformity in my hands, severe "brain fog", forgetfulness and word finding difficulty, and many, many more strange symptoms. I couldn't remember what side of my car the gas tank was on, how to put the words together to say "chocolate milk", and even spaced out when I was driving and forgot where I was or where I was going. I was 27 years old at the time. I was evaluated for possible multiple sclerosis, lupus, and rheumatoid arthritis. My tests all came back negative and my symptoms continued to progress. I spent a considerable part of my pregnancy on methylprednisolone (a steroid) and had monthly level two ultrasounds. I had to withdraw from my classes and quit working. I was barely able to take care of my children or myself. It was a terrible time in my life.
In January 2006, my daughter was born, beautiful and healthy. My symptoms never went away and I spent the next few months trying to continue with school at night, studying for the MCAT, and taking care of my children during the day, all while fighting against my body and doctors who refused to listen.
By that summer, I had gotten to the point that I was convinced that I would end up on disability for the rest of my life, or perhaps even worse. I had seen just about every type of specialist that exists to no avail. I finally saw a very kind immunology and allergy physician in Albany. After performing a number of tests, he concluded that I might have hidden Lyme disease and should go see a physician in Boston who specialized in the disease. I attempted to contact the doctor several times, but never received a call back. Desperate, I once again began self medicating with some leftover amoxicillin that I had. The response was nothing short of miraculous. Within a few days, my mind began to clear. But, along with that, the pain in my body began to change. Instead of the intense aching, the pain became "cleaner and sharper" and the pain in my head and neck that I had experienced two years prior in the hospital returned. I was experiencing a Herxheimer reaction, which is a worsening of symptoms caused by the release of toxins by the dying bacteria. I eventually went to see my primary care physician who agreed with my self diagnosis and began prescribing the medication for me. I was finally, after more than two years, diagnosed and being treated for Lyme Disease.
Around this same time, my son began to display alarming developmental delays. He was started in Early Intervention when he was eighteen months old and began speech therapy and special education and later physical therapy. He had global developmental delays and hypotonia (low muscle tone). He developed reflux. He was irritable and would often scream out at night as if he were in pain, but no one could explain why. By the age of two, he could not even say "mama" and had begun to socially withdraw. His therapist would come to the house to work with him and he would lie on the floor and close his eyes. He refused to communicate with them in any way. I came across a study on Columbia's Lyme Research site and began to wonder. The study was looking at the prevalence of a Lyme induced Autism-like syndrome. The children showed developmental delays consistent with Autism symptoms, but when they were treated with antibiotics, they began to get better. Convinced that this was the root of my son's problems, I took him to see a pediatric infectious disease doctor at the local hospital. She informed me that not only did congenital Lyme not exist, but there was no way that I had Lyme disease. We left her office very quickly.
I began researching pediatric Lyme disease further and found Dr. Charles Ray Jones in New Haven, CT. I immediately scheduled an appointment with him. I took my son to see Dr. Jones and he started him on amoxicillin. The response was once again, miraculous.
My son went from being completely non-verbal, almost non-testable, and most likely heading towards an Autism diagnosis, to virtually normal. We noticed a change almost immediately. It has only been about three months since he started his antibiotics and he now no longer qualifies for Early Intervention services. His language, which had showed profound delays, is now within normal limits. He smiles and laughs and hugs us. He is just a different child now.
So, this is our story, our truth. I know that there are others out there with similar stories. Until more research is conducted and the disease is better understood, there will be even more who suffer. These past few years have been a powerful learning experience for me. My hope now is to spread the word about the tragedy of Lyme Disease. We are in the midst of an epidemic caused by a bacteria more sophisticated than our current technology and a disease that most doctors don't understand. I know that there are countless people out there suffering the way that we did; that are told that they are "crazy" or who simply have their symptoms dismissed as nonsense. I cannot be silent about our experience and can only hope than I can alert enough people about this disease so that they may not suffer the way that we did. Please, send this site to everyone you know. Educate yourselves. Ask questions. Don't ever doubt yourself. Don't ever give up for fighting for what you believe. If I had given up or had not had the strength to fight and question everything, my children and I would have faced a very grim fate. I know that we would not be where we are today. So, please, don't ever give up fighting and help me to spread the word.
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