Joined: Sun Feb 17, 2008 9:42 pm Posts: 2809 Location: USA
Fooled by The Great Imitator
My experience with Lyme disease…..
I am writing regarding my personal experience with Lyme disease. My long battle with this disease and my dealings with a flawed healthcare system are outlined below. This is lengthy, but no more than the stories of untold thousands who have needlessly struggled and suffered as our system fails them. I was clinically diagnosed with late stage (advanced, chronic) Lyme disease on March 1, 2007 and this was confirmed soon afterwards with the use of the ELISA and Western Blot test at IgeneX laboratory. This, however, is not where my story begins. I am a 37 year old male who, prior to 2004, was very healthy, productive and advancing in my work, and very active in my church and community. This status changed rapidly in the fall of 2004. After attending a camping event in September of 2004, I developed flu-like symptoms. These symptoms persisted off and on throughout the fall with other strange and unusual symptoms arising as time progressed. It was thought it may be allergies or stress related. I used all my sick time and vacation time at work in a 3 month time period. I began to have hip and knee pain and stiffness. My neck hurt constantly and my head felt like it was in a vice. After falling and breaking my shoulder In January of 2005, my condition worsened considerably with severe tension headaches, joint pain, extreme sound sensitivity, ringing in my ears, disturbed cognitive abilities, inability to walk normally, poor balance, rib pain, swollen glands, bone and muscle pain, emotional and mental disturbance, and the list goes on. I again used all of my 2005 sick and vacation time in less than 3 months. My primary care physician and assistant tried to figure this out on their own. I was put on MANY medications. Absolutely nothing helped and often the medicines made me more ill. I was sent to and ear-nose-throat specialist who suggested it may be caused by clenching my teeth at night or by a systemic reaction to one of the medications I had tried. In late winter of 2005 the symptoms, for no obvious reason, began to subside and I was able to tolerate them and continue working. In this time frame my PCP tried other medicines and adjusting my neck and back. I was sent for x-rays to check for arthritis and none was found. My symptoms reached a barely tolerable plateau for quite some time. Because I was not getting worse, no other medical treatment or testing was prescribed until the summer of 2006. In the summer of 2006 my symptoms began to get worse rapidly. I had now had a tension headache, neck pain, dizziness and cognitive/concentration problems for 1.5 years and the only specialist I had been sent to was the ear-nose-throat specialist mentioned above and the only testing was basic blood screening. In August of 2006 the tension headaches became almost unbearable and I started having trouble breathing at night. My PCP then began trying MANY various medicines again. As before nothing helped. At the end of August 2006 there came a severe turning point in my condition. I began to get small persistent muscle twitches in my arms. My arms and legs would sometimes “freeze” when trying to do simple tasks. I became very confused and disoriented. In a 2 week time frame I lost the ability to stand up straight, I could not take a normal length step and my entire body began to twist and writhe uncontrollably 24hrs a day. Only after 2 trips to the emergency room did I get in sooner to see a neurologist. Beginning on 8/31/06 I was no longer able to work or drive and I entered a very frustrating disability system. In all this time the word “Lyme” had never been suggested. For the next several months my condition only worsened. I was medicated to help control my symptoms. These medicines had severe impacts on my physical and mental state, but protected me from hurting myself. My neurologist, conferring with others in the field, had me tested for so many diseases and disorders I will not attempt to list them here. In all of this testing, including a basic blood test for Lyme disease, all were negative showing no cause for my disabled condition. The only abnormal test was my Lumbar Puncture (spinal tap) which showed elevated levels of IGg antibodies in my cerebral spinal fluid. My neurologist did not know what this meant so she began to refer me to some of the best neurological and movement disorder specialists in New England. The first specialist called the movement disorder chorea but he did not know the cause, nor did he know why I had elevated antibodies in my cerebral spinal fluid. He said he had seen this before and sometimes IVIG treatments had helped but he did not know what to call “it”. He referred me for extensive inner ear testing, which was normal, and also referred me to another highly esteemed movement disorder specialist in Boston. After calling the movement disorder chorea this spurred another barrage of tests which were all normal, showing no cause for my condition. I started monthly IVIG treatments and continued with the medications to control my muscle and neurological symptoms. I was finally able to get in to see the specialist in Boston in January of 2007. This appointment was humiliating and demeaning. The doctor had not fully read my history, labs and reports. He did not even know who had referred me to him, a close colleague of his. I saw an internist for 45 minutes, who examined me without referring to any history, and I saw the specialist, one of New England’s finest, for only 12 minutes. In the end he alluded to possibly this being stress related. He said “Your symptoms don’t make sense, this is not neurological in origin” and when I asked where to turn next he repeatedly said “we can’t help you” to every question. After this I was not referred to any more specialists. We continued IVIG treatments but my condition only worsened. My neurologist said they had exhausted every neurological path of diagnosis. In a letter to my employer she indicated that the cause of my condition was “a medical mystery”. The plan at this point was to continue IVIG treatments for 6 months along with the highly invasive medicine to control my muscles. By February of 2007 all of my symptoms had worsened and many new problems were arising as well. After what appeared to be a very bad reaction to an IVIG treatment, this course of therapy was stopped with no plan to determine the root causes of my many bizarre symptoms. My family was weary of the course this illness had taken. I had 2 of my 5 children beginning to have very serious problems socially and in school. My wife of 18 years was mentally and physically exhausted. Financial pressures were overwhelming. I was at risk of loosing my employment of 17 years. I was having great difficulty with social security disability (they eventually denied my claim) and with the disability through work. My children had to watch their father deteriorate mentally and physically every day for over 2.5 years. I thought I was going insane and had to fight off suicidal thoughts and a sense of worthlessness daily. My mind was often in a fog and normal life events and circumstances were too much to bear. Most days my mental focus was limited to getting my hands and legs to move where they were supposed to. This disease nearly destroyed every aspect of my health and life. The pastor of our church called for special fasting and prayer for myself and several others with chronic illness. This same week I decided that even in my deteriorated mental and physical state, I would do online research of my own to try to find a possible cause. I was being driven by frustration towards the healthcare system in general. It had been, in one word- PATHETIC. I had now been ill for 2.5 years and was deteriorating very quickly with no answers or effective treatment. I had been a walking pharmacy, picked, poked, embarrassed and humiliated by the system. I decided to look for and study disorders or diseases that were known to be hard to diagnose, as mine obviously was. I did not believe it was a “mystery”, I believed the medical community as a whole was uneducated or misinformed. In one sitting at my computer, in one day in February of 2007, I discovered that I had Lyme disease. Using the list of disorders at the National Institute for Neurological Disorders and Stroke, the CDC, and other “reputable” websites, I looked for hard to diagnose disorders. The first one I saw was Lyme disease. It said tests for Lyme were often false negatives and that it was commonly miss-diagnosed due to its many symptoms. I had been tested for every disease listed that it “mimics”. The sites called the disease “The Great Imitator”. I then used web searches to research the disease further. I learned quickly that there are serious opposing views that hinder the medical community from diagnosing and treating Lyme effectively. It was obvious that the issue was highly complex and nationwide. I quickly found an exhaustive symptoms list; ALL of my symptoms, even the bizarre ones, were on the list. I also found that cerebral spinal fluid may show elevated antibodies when infected with Lyme; this was the only abnormal indicator in all my testing. I then wrote a cover letter and printed numerous information pages on Lyme for my neurologist. I asked her to reconsider Lyme as a possibility. After 1.5 days she called me, affirmed that she would like to revisit Lyme as a possible cause. She did not want to do this herself; she wanted to refer me to someone with hands on experience in treating and diagnosing Lyme disease (smart doc). I then was referred to another doctor with Lyme disease experience. This is where, finally, the history of my illness makes a dramatic positive turn. This doctor, right here in Maine, had treated many patients successfully that had Lyme disease. He made the diagnosis that I mentioned at the beginning of my letter and confirmed it with more accurate laboratory tests. Under his treatment I made astonishing progress and was able to return to work in June 2007 with the full agreement of my neurologist. Due to the length of time I have been infected with these bacteria, I will likely need treatment for many months to come. I saw improvement in my wife and children but only time will tell how much permanent damage has been caused. I hope and pray there will be no permanent damage in my body, but this is a very real possibility, the Lyme bacteria and other infections transmitted by these ticks are very difficult to eradicate. Had I been diagnosed properly early on, this could have been a one month story that did not destroy my life. Why can I, a common man, a factory worker, diagnose my condition online but so many doctors and specialists could not? I used government websites in my search yet none of the doctors I was sent to in 2.5 years recognized the disease or used the recommended testing. All of these doctors are in the areas on CDC’s list of “moderate” risk for Lyme disease. Recently a new chapter to this sad story began. After returning to work neurological symptoms began to return. By the end of August I was pulled from work again to prevent further relapse. Having run out of “time” at work, my growing career of 18 years has stopped, they reluctantly ended my employment. One more blow by this devastating disease. My youngest son, only 7 years old, recently said: “Dad I don’t feel good, I think I have Lyme disease”. He was fine. He just wanted to be like me. Longing as sons do, to be just like his dad, but the only dad he had seen for so long was barely able to walk, shaking uncontrollably, disoriented and confused, swollen, hunched over, and very often uncontrollably irritable. Perhaps the saddest affect this disease had in regard to my children was due to one of my symptoms, a severe sound sensitive headache that also causes mental confusion. While my children, Gods blessings, were just being kids trying to love their dad; all I heard was noise and confusion. It still breaks my heart now to think of all they have endured as Lyme disease has affected our family. I have experienced not only the devastating, crippling affects of the disease, having gone undiagnosed for 2.5 years, but also the healthcare system's blatant failure to be able to recognize, test for, and quickly diagnose the fastest growing vector-borne disease in our country.
My concern is not for myself; the damage is already done. My concern is for the untold thousands of US citizens who are suffering severely, right now, due to miss-diagnosis and inadequate, unproven treatment guidelines.
In the course of 3 years having this disease, I have seen failure at every level of medicine including: The influential guidelines, PCP, neurologists, specialists, testing, ER, drugs, and disability.
I have seen highly esteemed, top specialists completely ignorant of the symptoms and progression of Lyme. I have seen the outrageous and seemingly "political" controversies in regard to the effective diagnosis and treatment of this disease as well.
Doctors who are labeled as “rogue” fight to treat us effectively as the current guidelines have failed.
I do not have certain things to offer; I do not have any titles or college degrees, I'm not a professor, scientist, politician or doctor, I cannot speak in high tech medical terminology.
I'm just an average, hard working citizen with a high school diploma, a wonderful wife and 5 children who depend on me.
What I do have to offer is my personal experience with Lyme disease and a willingness to use this to effect change.
This is fact, not opinions or bias or pride, just actual experience. And I know there are hundreds of others that have shared the same long, frustrating story as they enter a failed system.
A quote from authors Denise Lang and Kenneth Liegner M.D. in their book, "Coping with Lyme Disease", it states,
"The symptoms, coupled with all the other reasons for misdiagnosis, often prompt doctors to tell Lyme patients, 'Look, there's nothing wrong with you physically---it's all in your head. Go see a psychiatrist.' This scenario has been replayed with such frequency that it has become a standing joke among Lyme patients. They say that if your doctor finally tells you to go see a shrink, that's the confirmation that you have Lyme disease!"
This portion of this wonderful book speaks loudly to the truth of the situation. To me, it's no joke.
Real people are suffering and dying while professionals bicker endlessly over the controversies surrounding the disease.
Progress is stunted with the endless debates and dogma persisting as stubbornly as the bacteria itself.
Only God knows how far this disease will take me and my family. My heart goes out to all who have suffered in its long, destructive wake.
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