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|Author:||Cog1st [ Sun Aug 10, 2008 12:47 pm ]|
|Post subject:||BJK's Story|
My Lyme Disease Story
**None of the information shared in this web site is intended to be used as medical advice or for diagnosis. This is informational only**
Note- The sectioned formatting is for the benefit of those with neurologic syptoms of Lyme disease, as large block paragraphs are often difficult to read.
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 Lyme disease, a bacterial tick-bourne illness, on March 1, 2007 and this was confirmed soon afterwards with the use of the Western Blot test.
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.
The Progression- searching for answers...
Written May 2007
After a full summer of camping in 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.
We were all wearing thin...
My family was weary of the course this illness had taken. 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 SS disability (they eventually denied my claim) and with the disability through work.
My 5 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. I thought I was dying.
The discovery- a turning point ...
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. I then was referred to another doctor with Lyme disease experience.
Moving forward.....or are we?
This is where, finally, the history of my illness makes a dramatic positive turn. This doctor 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 our government list of “moderate” risk for Lyme disease.
Written September 2007
Recently a new chapter to this sad story began. After returning to work neurological and physical 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.
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 governing 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. As a Lyme disease sufferer it’s not hard to see the truth.
Doctors who are labeled as “rogue” fight to treat us effectively while a VERY small number of influential "experts" set guidelines that put the general public at risk of long term infection and serious illness.
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.
Written April 2008
Yet another chapter of this seemingly endless fight began as my condition deteriorated in September 2007. Now, along with progressing rapidly backwards, psychological symtoms grew worse.
I became suicidal, just wanting this all to end. I went into a hopeless state of mind and and became even more emotionally and pyschologically unstable while my body continued to relapse.
One day in late september I tried to end my life, acting in an uncontrolable rage, angry with "the system", with God and with myself....always feeling that somehow I should be able to beat this and seeing myself as a failure.
This day found me in a hospital and then admitted to a psychological ward for observation. This was humiliating and embarasing, Yet as I spent time alone in my room I began to pray.
Remembering that nothing is impossible with God, I started to come out of my severre depression to a level that at least kept me from another suicidal attempt.
While in this hospital I was only seen by a doctor making routine visits for about 15 minutes total in 4 days, and seen by a social worker and pysychologist mainly at admission and discharge.
I returned home, embarased and hoping to get better. I still had many symptoms that caused me confusion, regular pain and suffering; these varied greatly from day to day in thier severity, never knowing how sick I would be at any moment.
Then,soon after my release, totally unexpectedly, my disability, the only source of income for my family, was denied. Adding insult to injury the denial was primarily based on the words written by doctors who had spent less combined time with me than my treating doctor had spent with me on my first visit alone back in March of 2007.
In the denial letter and phone call my doctors integrity was demeaned, and professionaly insulted by people who seemingly knew nothing of Lyme disease and its devastating affect on the body and mind when infected for so long.
Thier were even suggestive statements of doubting whether I had Lyme disease at all. It is said that the love of money is the root of all evil. I've been told that statistically a percentage of people will not appeal a disabilty denial, therefore it is possiblly a financial practice to sometimes be denied benefits. Well, I was not in the percentage who would lay down and be a rug for someone elses gain. I hired a Lawyer to handle my appeal.
My family struggled as I could not work to meet thier needs, I felt helpless as a husband and father. I coulnt even be sick right. Stress, a key factor in Lyme disease recovery, was adding to my lack of physical progress and enabling the bacteria to get the upper hand once again.
We had to sell personal belongings and try to sell our house to pay mounting debt. I cannot begin to desribe the affects this has had on both myself and my family, but I suppose those who sit distantly in offices, dont feel the consequences of those they impact. Im glad I was not led into a career like this, I dont suspect my consience would allow it anyhow.
Seeing that I was not progressing, my doctor reffered me to a specialist in NY who had a great deal of experience with Lyme as well. This doctor, agreed with my doctor in regard to all he had done for treatment so far. He did, however, suspect that not only did I have Lyme but possibly a co-infection called Babesia that the same ticks transmit. He also felt, due to the lack of progress that a more aggressive Lyme treatment may be needed.
So begins another chapter in the saga. I have heard babesia is also difficult to irradicate. Once again only time will tell. I hope and pray that my next entry to this story will be one of triumph and success. The past history leaves one to wonder, but God is faithful and I believe he can heal.
It is very difficult to write these entries for physical and cognitive reasons, but also emotionally; when will the healthcare system give this disease the attention it is demanding? Thats why I write, to inform whoever I can of its devastating affects and provide links to people who may be suffering from this disease as well.
Pray for us all.
Respectfully and sincerelly,
Please read BJK's experience of viewing the lyme documentary "Under Our Skin": http://www.geocities.com/whiteakita22/F ... eisit.html
http://www.geocities.com/whiteakita22/m ... story.html
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