My 13 Year Struggle with Chronic Lyme
By Paula L.
--"When I stood at the mirror in August 1992, I struggled to remove what I thought was a tiny black scab. Little did I know how that one moment would mark the beginning of a life altering journey."
After struggling for several frustrating minutes, I was able to pick the "scab", no larger than a tiny spot, off the side of my back. Surprisingly, it bled. "What the heck," I thought to myself. No matter, I went about my business. Oddly though, a few weeks later, I found a huge, bullet-type rash on my back, about the same area as where the "scab" was removed.
I immediately made an appointment with my doctor, as I also felt like I was having the flu. Since I had some medical experience, I recognized the bull's-eye rash as possibly being a symptom of being bitten by a tick, though at that time, I did not associate that rash with the "scab" I had removed earlier.
Several days later at my appointment at the clinic, I lifted up my blouse to reveal the rash, which was now much larger than when I had first called to make my appointment. "No, that's not a lyme rash." I remember my doctor saying matter-of-factly. "Well, what is it then?" I asked, concerned. "I'm not sure," was my doctor's reply. This was a general practitioner in the State of Wisconsin, already a lyme-endemic area. The doctor referred me to a dermatologist instead.
When I got to the dermatologist, his reply--one guess, "Nope, that's not lyme disease." By this time, the first bullet rash had disappeared and now, only a couple weeks later, I had small raised red blotches that were itchy all over my back, truck, neck and shoulders. He prescribed a salve which did nothing for the rash.
Several more weeks went by and I came down with major flu symptoms, joint pains, fevers of 104 degrees, gastrointestinal symptoms. I was bedridden for four days and could barely move. I went back to the original doctor, who then proceeded to put me through intense diagnostic tests, colonoscopy, a sigmoidoscopy, Xrays, MRI's, multiple blood tests, stool parasite tests, the works.
A few thousand dollars later, nothing came back with any clue as to why I was so ill. Ten months passed and I was still so sick that my business that I ran out of my house, was now compromised. I was bedridden most of every day, as I simply could not function. I could no longer work long hours, and had to hire employees to come into my home to do my work and deliveries. My business "income" became everyone else's, because the costs nearly exceeded what we were earning. I spent many days in bed while struggling to raise two children then under the age of 3 when lyme first reared its ugly head in this family.
Around the same time frame, both children began to have unexplained illnesses. Both were diagnosed with Roseola, Scarlet Fever, and there were many bouts of upper respiratory infections and high fevers. Both children had hive-like rashes with little rings around them on their legs. We thought it was a reaction to the antibiotics they were taking.
My young son who contracted lyme when only 9 months old, suddenly stopped talking, and was falling down constantly. This lasted until he had ear tubes inserted. Suddenly he was "better". Three sets of tubes later he still had problems developmentally. He also had a brief, unexplained episode of urinary incontinence. He is now 14 and shorter in stature than children his age, and has suffered bone pain, fatigue, chemical sensitivities, headaches, has a curvature of the spine, attention problems, and anger and irrational behavior outbursts. He has been on repeated courses of Biaxin, doxycycline, lorabid, suprax, amoxicillin, and augmentin. He wasn't diagnosed with lyme until recently, just before his 15th birthday.
My daughter was three when she contracted lyme and had trouble briefly in school with urinary continence, headaches, stomach aches, fatigue, coordination problems, handwriting difficulties, and severe depression. She is slightly overweight and has problems tolerating sugar, but has huge sugar cravings. She suffers from menstrual problems as well. Her behavior is suffering from major depression and feelings that are at times both homicidal and suicidal. She was finally diagnosed with lyme recently, just prior to her 17th birthday. Like her brother, she has had a long list of antibiotics to treat many different diagnoses, all of which were lyme linked, but unrecognized by her doctors.
Back to 1994 when I began to have unexplained episodes of anaphylaxis to foods, medicines and even a flu shot. I continued to see multiple physicians to no avail. Meanwhile I was growing more ill daily. I was losing weight and suffered from bouts of anorexia, fatigue and depression. My gastro system was haywire and I could no longer travel. I was also losing my hair. Doctors told me "you have female pattern baldness." I doubted that diagnosis as well. Something told me I was sick but I couldn't get anyone to find a cause. I began to suffer visual, olfactory and auditory hallucinations. I saw "people" in my bedroom at night, which was extremely unnerving to say the least. No, I was not, and am not mentally ill. Intermittent doses of amoxicilin, penicillin, erythromyacin, zithromax, suprax, biaxin, sulfameth-trimeth and a few I can't remember did give me temporary relief from the most severe symptoms, but I was still not very well.
One question I kept asking each doctor after giving them my complete medical history was, "Do I have Lyme disease?" The reply was always a resounding "No." Instead, over the course of the next 6 years I was diagnosed with depression, endometriosis, fibromyalgia, MCS/CFS, agoraphobia, and needing counseling due to "apparent" hypochondria. Several doctors who wanted to pin my symptoms on me because they ran out of answers suggested that I should be on anti-depressants.
In 2000, just weeks before my second marriage, I awoke one morning with my usual stiffness and pains to find that my left ear was extremely painful. Over the course of the next 5 days, I lost complete feeling in the left and central parts of my face, the hearing in my left ear, the vision in my left eye, and my ear became an inflamed, swollen mess. Additionally, I had excrutiating pain in my "skin" that hurt to the touch, from the top of my head all the way down my back, my left arm, my shoulder and the left side of my body. If you touched me anywhere I would yell. I remember the strange looks from employees at my workplace when I feebly tried to speak with them with my disfigured, dysfunctional face. I sat all week with a heating pad attached to my face to try to subdue some of the pain. Zithromax and IM shots of Rocephin gave me a temporary stay in some of my major symptoms, but did not alleviate the pain. At this time I came down with MCS, and exhibited anaphylactic-type symtoms toward everything from table salt to preservatives. I was a common site in the emergency rooms in all the nearby towns. Five doctors saw me in as many days and not one of them had a clue about what I was experiencing.
I persisted in my search for a doctor and a diagnosis. Finally the next doctor, a week later said "I know what this is, you have shingles of the cranial nerve." Relieved that someone "knew" what I had, I took his advice and took prednisone (steroids) and acyclovir, which were supposedly going to help me. Three days later I ended up in the emergency room with an extreme reaction to the medications. The ER doctors said "You don't have shingles, you don't have any pustules," but declined to venture a guess as to what exactly I did have. Instead, they ordered more blood work and gastrointestinal exams, which of course, were normal.
Eight excrutiating and debilitating weeks later, I was able to nearly manage a smile at our wedding to my second husband. In the meantime, because I had endured the facial paralysis and droopy features, I had become keenly aware of the way that people with facial deformities are reacted to in public, lending me a new appreciation for their plight. In my opinion, there is little more dehumanizing than asking a clerk a question and when the clerk notices your facial deformity, answers your question eyes down, or else speaks directly to the person who happens to be standing with you at the counter, even if that person had nothing to do with the question you just asked. It was as if I did not exist or could not understand English. I felt invisible.
From 2000 to 2003, life ran a slowly declining course. I was having great difficulty functioning from day to day. Fatigue, pain, and a myriad of symptoms, (add all the classic symptoms of lyme here), plagued me. The left side of my body no longer worked very well. I could not balance or walk straight, taking on the gait of a person intoxicated. I could no longer eat, sleep, eliminate, drive, or function normally. Work was difficult, and my employers did not understand my repeated need for time off, nor did they understand why I would suddenly fall asleep in the middle of the morning or afternoon. If I was wide awake, my concentration was dull or I would forget what I was doing and repeat tasks already done. Driving was a nightmare of panic attacks and concentration and visual problems. Movement, light, sound and vibration affected me.
I began "counting" things, a form of OCD, or holding my breath until a certain event would pass, for no apparent reason. I would cry at the drop of a hat, or alternately appear intensely happy, for no apparent reason and without a trigger. It is mind-boggling to me now, how all my symptoms, physical, mental and emotional, could be related to one illness and how they could be continuously ignored by the large number of doctors I visited.
I started having violent mental images of slain persons, some who I knew, some I didn't. The words suicide, which aren't even in my "normal" vocabulary, became a familiar, unwelcome thought for some months, and then just as quickly they disappeared. Fleeting, anxious thoughts plagued me and seemed to come from out of nowhere.
It was frightening to me to wonder if I could have a mental illness, as I thought I was losing my mind. I felt angry and irritable. I smashed a telephone after a conversation with my ex-husband angered me unreasonably. (lyme rage) Everything seemed intensely magnified. I ran in a panic out of department stores because the "light" was bothering me. I wore sunglasses indoors and was hypersensitive to sounds and smells, even what normally wouldn't bother me. I smelled and tasted things that no one else did, often making food offensive to me. I had no appetite and struggling to eat each meal became a chore so I often skipped meals altogether.
By 2001, I suffered sudden panic attacks and heart palpitations regularly. I was afraid to leave my house, and with good reason. I started misjudging distances, even while driving, and I had several very close calls in my car, enough to induce panic attacks whenever I would drive. No two days were ever the same, and some days I prayed that God would please either take me or cure me. I managed to work a few full-time jobs, but not before I would eventually have to revert to part-time or leave due to missing so much time off work because of my still undiagnosed illness.
At one job I even suddenly and inexplicably swore at a manager, with very little provocation, something I would never dream of doing--resulting in my being fired. Again, lyme rage was rearing its ugly head and I had no idea what was happening to me.
I also had a baseball-sized tumor discovered and removed along with my left ovary and fallopian tube in 2002, but no one could tell me why I had a tumor suddenly growing in my abdomen. I was told I had a 30% chance it was cancer and waited pensively for the operation and biopsy to discover that it was not cancerous. I felt very blessed but perplexed with the news it was not cancer. But why did I have a tumor and where did it come from? Several "cysts" (probably lyme cysts) kept appearing on MRI's and then suddenly disappearing over the years, confusing my GYN and leading to more diagnostic surgeries.
Chest pain and palpitations began to occupy my daily life, along with anxiety attacks and visual/hearing disturbances. I wore a holter monitor for months and was told I had an AV node arrythmia, (a common stage 2 lyme complication).
I continued to visit doctor after doctor and moved several times, always consulting new doctors in the process, and costing thousands of dollars of unreimbursed medical expenses. I received more diagnoses that were woefully inaccurate and completely useless. I wasn't drug seeking, I was diagnosis seeking, something which remained elusive to me.
Several doctors suggested I see a psychiatrist or a psychologist. One doctor actually yelled at me: "I'm not going to hold your hand every time you think you have something wrong with you!" I marched right out of his office, and if anyone knows me, I had no problem telling him what I thought of both his comment and his lack of compassion towards his patient.
Another doctor tried to suggest that I might be peri-menopausal. Another diagnosed me with agoraphobia - fear of leaving one's home. I began to read every health book imaginable, trying to get a handle of what was making me so ill.
In April of 2003, after missing a great deal of time off work and slowly declining in health, I began to suffer from anaphylaxis again, this time to foods and odors. It didn't seem to be one specific food or odor, but rather a number of things. For months I kept a computer database of every food item I consumed and its ingredients in an attempt to pinpoint the "offending" food.
I had already been to allergists many times for the reactions, as well as virtually every hospital emergency room in the lower part of WI at one point or another for unexplained anaphylaxis. Skin and blood tests revealed NO allergies to anything, even the very things that were triggering anaphylactic reactions. Now I was becoming unable to eat any foods at all. Each and every meal became a battle between my hunger and my over-reactive immune system.
After a few months of this downward spiraling, I was reduced to eating only 5 "safe" foods, every day, for every meal. These included white cheese, corn, oranges, saltine crackers and bananas. I drank water and nothing else. Then suddenly I found my menu reduced further to potatoes, cheese and bananas.
I was shuffled from one clinic to the next. I visited a dizzying array of neurologists, gastroenterologists, allergists, endocrinologists, rheumatologists, general physicians, gynecologists, osteopaths, orthopedists, and a couple of psychiatrists, you name it, I was sent there. Interestingly, the psych profiles were all incredibly normal and showed no mental illness.
I endured two separate physical therapy trials lasting months at a time, because doctors thought my radiculitis, painful shoulder, paralyzed arm, and neck problems were caused by pinched nerves. Needless to say the physical therapy aggravated the conditions and had to be abandoned.
By April 2003, I could no longer work and every smell bothered me or set off one of my weird reactions. Once in the garden a leaf went into my mouth and I went into shock. The smell of dog urine or a baby diaper sent me into anaphylaxis. A blueprint machine at work had the same affect, sending me to the emergency room. I could not tolerate the smell of ammonias, cleaning products, petroleum fuels, cigarette smoke, perfumes, flowers, or anything even mildly aromatic.
I went on work short-term disability, then eventually that ended as I simply could not work at all. All throughout this process, we had family court issues caused by my ex-husband's attempts to reverse physical placement of our two children, with those issues adding to the stress of being physically ill.
Despite the fact that his false allegations were unfounded and proven false, the family court actually reversed placement on the grounds that (though they did not follow any legal grounds at all), "there was an air of tension in the home." Why wouldn't there be? Someone was trying to deceive (and did) the family court into taking away my children and I was desperately ill and no one noticed it except me.
During court-mandated counseling, my lyme-induced sensitive self and rightful anger and refusal to cooperate because I was being wrongly portrayed as a child abuser triggered strong emotional responses from me (please note I never was verbally abusive, just very opinionated, and refused to cooperate because no one was listening to me). The counselors refused to entertain the idea that I could be (and was) absolutely telling the truth and that my ex-husband lied to them about child abuse that never happened. I was unable to properly defend myself because of the highly emotional state I was in. Add to that I was concurrently recovering from major abdominal surgery, suffering from lyme, and struggling with the false accusations. Who wouldn't be angry?
The counselors added insult to injury when my ex's attorney asked them in court if my "behavior" in counseling could be parallel with someone with borderline personality disorder. (Note these are family counselors not medical doctors, and it was the attorney who suggested this tie). Of course they answered "Yes". My ex's attorney augmented that suggestion by using the word "intransigent", which somehow inexplicably found its way into the orders despite the judge never ordering these statements. My ex's attorney drafted orders that when read, painted a picture of me as someone with serious mental and emotional problems.
Note that I was never, and have never been diagnosed with any mental disorders. What they were seeing was merely lyme-induced chronic neuroborreliosis and its affects on behavior and emotions.
How sad what has been allowed to happen to my family in the family courts of Wisconsin. Despite laws to protect us from this, court orders which are drafted by unscrupulous attorneys can contain anything an attorney wants to say, whether the judge actually said those words or not--and they will stand despite objections to the contrary. In addition, rulings based on hearsay and conjection and attorney's opinion can and do rip whole, properly functioning families apart, causing a lifetime of irreversible damage.
Over the next 2 years, to avoid a contempt charge, I have had to defend myself in court as to why I "voluntarily" took 4 weeks off from court-ordered counseling when I had just had major surgery. To say I was ill-equipped to fairly participate in counseling and a court trial is a major understatement. I continued to plead with both the court and their counselors that I was ill and not well enough to continue, yet it fell on deaf and insensitive ears.
A county social worker used my neuro-lyme damaged facial expressions observed during our home study as a barometer of my parenting ability. The social worker's perceptions of my "flat" facial expressions led her to testify in court, "I thought her face was full of rage." She had rudely said to me during the interview, "your eyes are so full of pain, that's the first thing I noticed about you." (indeed, what she saw was pain from a serious lyme headache).
In an indirect manner, lyme destroyed the life I had with my children. All because my health situation was manipulated through an arrogant and ignorant family court system, despite laws designed to prevent that very thing from happening. I was ill-prepared for these events on top of everything else. All of my "free" time was spent in sickness and visiting doctors. I barely coped with the next 9 years of court hearings, let alone being forced to fight for my legal parenting rights in addition to obtaining a medical diagnosis and treatment for a disease so steeped in political controversy and denial.
To make matters in family court worse, doctors were declining to testify on my behalf that I was ill, and for what duration, including the fact that I could no longer work. None of them save for one of three who were all eventually alienated during this process, would admit anything about my health situation. From the family court's perspective, since I had no diagnosis, very little "admissable" supporting medical testimony, in their eyes, I was not ill. Its the old "you don't look sick" thinking.
At one point, my ex-husband's attorney went to court to force me to sign a health information disclosure form to allow him to dumpster-dive in my medical records to try to "prove" that I was not sick. The court granted him that ability, with very little concern about my personal privacy. Forget HIPPA laws, they don't protect patients from wayward attorneys.
I was forced to sign many releases against my will. The doctors handed over my medical records to the attorney and many of them handed over medical records and lab tests before I had even had a chance to see my own test results!
Many more doctor appointments, tests, and thousands of dollars later, I was referred by an endocrinologist to the Mayo Clinic in Rochester, MN.
I spent 10 days at Mayo, able to eat only white cheese, saltines, potatoes, mixed vegetables (things had improved a bit in the diet department), and baby food bananas. My weight had dropped to 106 pounds, what I weighed in high school. I was 42 years old, 5 foot 3 and a skeleton. I was so ill and exhausted my husband pushed me around in a wheelchair most of the time. I endured every test the doctors there could come up with, though they actually dismissed my entire past medical history and focused mainly on my gastrointestinal system and the anaphylaxis.
At Mayo, I received extensive blood tests, allergy screenings, abdominal CT and an upper endoscopy and biopsy without any anesthetic. One medical test could not be performed because of anaphylaxis to barium which when it happened right in front of them, the doctors admitted they had never seen before.
When it was over, the last doctor reviewed my case and said, "We know that this is happening, we don't know what it is, and we don't know how to treat you." I asked him, "So I'm just supposed to go home and not eat, and basically starve to death?" "That's one way of handling it," the Mayo clinic doctor actually replied. Then he noted in my medical file that the cause was likely to be "personal stressors related to the divorce proceedings." I could not believe that I was sent home, untreated, in my condition. Mayo may be an excellent clinic, but in my opinion, doctors there really missed the boat in my case.
After the Mayo visit, my life went from bad to worse. My few tolerable foods began to cause reactions, reducing my diet to ONLY white potatoes. Anything else I ate caused anaphylaxis. After 7 full days of that nonsense, my body's potassium levels were so low I began to exhibit heart problems, sending me to the ER. No one could explain my "abnormal" EKG's. It was late in the summer of 2003 and I was physically very near death, but practically no one but myself and my husband noticed or happened to care. Doctors shrugged their shoulders. I was having cognitive impairments and returning sleep hallucinations along with a myriad of other symptoms.
My family and friends did not understand what was happening to me or why I was "still" sick. I doubt if I did either, though I knew I was not well and was struggling just to make it through each day. My second husband had no clue as to why I refused to get out of bed. Family members and friends admonished me for being "unreliable" when making plans to visit them and then having to cancel at the last minute.
Never mind depression, I was in a deep, dark pit with no way to get out except by my own willpower. I had never thought about a support group, I barely knew anything about lyme disease. I was unaware of the thousands of others struggling through the same illness I had.
Despite surviving all my health problems, court stuff, a trial, an appeal, the loss of my parental rights, the loss of several jobs, and the tumor, the effects of 13 years of lyme disease on my gallbladder caused it to basically stop functioning.
It had been intermittently causing extremely painful attacks since 1992 when I first contracted lyme, but I had been seen numerous times before and was always told I had "biliary colic" but no gallstones. The painful attacks were 9-12 hours long, both excrutiating and debilitating.
A new doctor did tests and then referred me to a surgeon. Tests revealed my gallbladder function was only 6%, and the offending organ was removed immediately. Incidentally, the pathology report indicated the specimen as "normal" in appearance. I have since found many lyme patients having problems with their gallbladders and it does not surprise me to hear the number of patients who, like me, have had their gallbladder and other organs removed.
Because I was unable to work, we had only my second-husband's income. I filed for disability and had to go through the process of obtaining my medical files, copying a mountain of records and waiting months and struggling through interviews. I was finally granted disability months later, but the onset date was in question, (I was given an arbitrary date by the government, presumably to avoid paying me benefits).
The government also had me complete questionnaires designed to "detect" if I used keywords that would indicate that I was able to work. It would be months before I would even get my first reply to disability. Of course in family court, if no disability is being received, it is a foregone conclusion that I am not disabled. Enter the "you don't look sick" philosophy again.
I would have had to appeal that ruling and re-send the same information proving I have been ill much longer than the social security office is willing to agree to. I waited months through that initial process, only to be denied a years worth of benefits while social security arbitrarily chose a "disability onset" date that was a full year later, probably designed to deny me my rightful benefits. In the end, my attorney advised me against appealing the ruling and simply accepting the one year's worth of benefits I did receive. In this manner, the child support I was not paying because I had no income could finally have its arrearage removed, and my ex-husband could begin receiving social security benefits on behalf of the children in lieu of the support payments. But apparently that was not good enough for him or the courts.
As a reward for my agreeing to do this, my ex successfully got a contempt order issued along with a verbal admonishment from an uninformed and easily swayed judge who wrongly assumed that I was "playing games" because I "chose" not to work for a full year prior to the social security office's selected onset date. Here we go again, nobody is listening. Hello, just because social security doesn't agree with the fact that I was on temporary disability and why and when, doesn't mean I wasn't legitimately not working!
Meanwhile, I cannot work due to my physical condition and symptoms and I struggle to get through each day. One doctor the other day, after being told about my long list of symptoms, actually had the audacity to say to me, "So why are you disabled?" Earth-to-doctor, why aren't you listening? Just because I can still walk around doesn't mean that I am okay! One has to be on one's deathbed before the community will accept the fact that one can be very ill and still manage to function on some level, albeit not very well or for very long each day.
One family income for two years made a new home purchase very difficult. We sold our old house to pay off a few of the $100,000 medical and legal bills that were mounting. It barely made a dent. With the tiny down payment we had, we had to find a home in a lower price range, in any affordable area, despite its location. Of course the new home was farther away than planned, and the family court again admonished and penalized me because we caused a greater "driving burden" for my whining ex-husband. The travel was hard on the kids, and they complained about it, but tolerated it. Bless this aspect of my current hubby in that he never complained about the driving distances while facilitating my visitations for me.
In my case, my health problems, and medical and legal bills are all attributable in one way or another, to lyme disease. Had I not been sick with lyme, I would have continued working, easily affording our medical and legal bills. I would not have lost placement of my children, despite my ex's best efforts, even in an ignorant family court system. Custody evaluators would not have misread facial features, and living arrangements or any other allegations would have easily been dismissed due to their obvious lunacy. My children would not have been torn from their schools, friends, activities, and family core by court officers who did not even do an investigation.
I have had to stand in Walworth County family court to defend a disease that went undiagnosed for 12-1/2 years, to prove why I was disabled and could no longer work. I faced repeated contempt charges for failure to continue paying child support due to my disability and no source of income except unemployment and disability. I had amassed a substantial "arrearage" claimed by the county because they inappropriately charged me for wages I had not earned. This subsequently had to be reversed to be deleted, causing more legal fees and judge's "orders" fully embellished by my ex's attorney with a vendetta against me.
I have had to wrangle with insurance companies for coverage for treatment of lyme disease and all the expenses attached to it. I have had to apply for financial assistance to every treatment facility in order to ask for grants to lower our medical bills. I have traveled out of state multiple times in an attempt to get proper medical attention and treatment, to no avail. We have had to file for bankruptcy because of the strain the medical and legal bills caused on our one-income family budget.
I find myself struggling with physicians for basic healthcare. I get angry when, as recently as this month, a supposed lyme-literate physician tells me that 30 days of doxycycline is "enough" to cure lyme. Or when another neurologist tells me he (quote) "doesn't believe in neurological lyme disease." Of course I immediately xeroxed a 15-page study on the effects of lyme neuroborreliosis and mailed it to him.
I currently exhibit or have exhibited nearly every single symptom of lyme that I have come across to date over the course of the last 13 years. Intravenous treatments for my lyme disease have done little to erradicate it, and much to send the spirochetes into hiding. I endure doctor visit after doctor visit where practitioners mock their lyme patients, claim chronic lyme "does not exist" or that it is all in our heads and we should seek psychiatric care. I dislike intensely being accused of being a hypochondriac, attention-seeker, drug-seeker, anxiety-ridden, blonde female perimenopausal woman when my health problems are Borelia Bergdorferi. (Bb).
I listen to personal prejudices over which testing laboratory results are "accurate", and I struggle with doctors who would play God because of their large egos and their unwillingness to listen to their patients; instead they prescribe mind-altering drugs or mood adjusting medication to mask the symptoms of the illnesses they should be diagnosing and treating.
After so many years of suffering, my life from lyme, if I would let it, feels like a cruel joke, and I am still declining, as are many who suffer with this insidious disease.
At the worst stages of lyme, surviving each day became my only goal. I lost friends, jobs, income, homes, family relationships, custody of my children, my appetite, my health, my hair, my mental acuity, and nearly every aspect of being I had during this process. At the same time, lyme has been a journey of the soul, forcing me to grow in ways I could never have imagined.
At times I felt so alone; and I knew of no one experiencing anything closely resembling this disease. I knew I had something wrong with me, but not one doctor would listen to me despite my repeatedly saying "I think I have lyme disease." I have lost count of the numbers of doctors, clinics, and hospitals I have "visited" over the years, but the numbers are probably over 100.
Everywhere I go, I begin from scratch. I tread ever so lightly while trying to get a diagnosis and simultaneously requesting doctors help support me in family court, on my disability case and for basic healthcare.
What I and thousands of others have is lyme disease. I needed a correct diagnosis, and I could not get one to save my life, even when lyme was literally killing me, by slowly starving me to death.
In the summer of 2004, I experienced a severe case of acute vertigo lasting several months, and visited more doctors. I had routine tests and an ENG, which was "normal". At the time I was continually nauseous, and had difficulty standing straight or walking a straight line. I felt like I was on one of those old batman shows, where the camera shot the scenes at the villain's hideout on a 20 degree angle. I couldn't drive in that condition.
I still had all kinds of symptoms of lyme, including pain, parasthesias, balance problems, emotional sensitivity, irritability, hallucinations, visual and auditory disturbances, partial seizures, migraines, bone pain, muscle weakness, spatial relationship problems, cognitive difficulties, sleep disturbances, problems eating, functioning, etc. The left side of my body no longer worked and I had facial muscle spasms. One attorney joked I winked at him in court. He thought I found him attractive--but it was the lyme.
I came across a book about NAET, an alternative therapy. I went to a practitioner. After a few sessions, I overheard the nurse speak to a colleague about a conference she attended. A physician had given a lecture on lyme. I promptly obtained the name of the physician. To my good fortune, his office was just an hour north of my home.
A few weeks later I visited him, had my consult and many blood tests. At long last, my Western Blot test came back positive. There was no mistaking the fact that lyme DNA was present in my samples. After 12-1/2 long and painful years, I finally had the diagnosis I had been asking the doctors for, since day one. "Do I have lyme disease?" The answer was quite simply "YES."
My happiness at being diagnosed quickly dissipated. "You don't look sick," people had told me all along. I was typically written off as a psycho or hypochondriac. And then there were the problems getting treatment due to the on-going, never ending court proceedings. Even though I found a somewhat lyme literate doctor, my ex's attorney would eventually, one way or another, alienate my doctor from me. The doctors did not want to get involved in the court crap and I didn't blame them, neither did I, but I did not have a choice. So instead of supporting and treating me, they dumped me instead.
Occasionally a doctor would attempt to help by typing a letter for me to "use" in court. Unfortunately the letters, despite being drafted by doctors, were always inadmissable in court. We did manage to have one doctor do a phone testimony pre-trial to admit he wrote one of these letters and that I was indeed ill, but apparently the court wasn't listening because even two years after the trial, my ex and his attorney acted shocked each time they "discovered" that I was indeed, ill, and the court went along with this game they played and continued to find me in contempt because I could not "prove" by having a doctor physically testify, that I was ill.
One doctor, after being contacted by my ex's attorney, suddenly shrugged at my next office visit and informed me that "antibiotics don't work on lyme patients". He did a 180 degree turnaround from my previous visit and simply handed me a bottle of costly herbal supplements and shook my hand, saying "I can't see you anymore. Good luck." I looked at him blankly and he followed that up with, "no really, I mean it."
Unfortunately local lyme support groups that I had contacted refused to refer me to a single doctor, because they were overly protective of their doctors or perhaps they didn't think I was really sick. I even had to explain my situation to them to attempt to find someone to treat me. I was so unsuccessful getting help from them that I began my own support group.
I had to resort to talking to former lyme patients to squeeze out of them who they had seen in order to find "qualified" lyme-literate physicians. Many of these doctors turned out to be a shot in the dark and some of them were quite dangerous in their prescriptions of medications. This was sometimes because they were attempting to treat a disease about which they knew very little. There were also many other remedies I came across on the Internet, with varying levels of success or legitimacy.
This has led to mine and many other lyme patients' disappointment at the number of physicians who turn a blind or uneducated eye towards this illness. Many lyme patients go 10 years or more before we receive a diagnosis, let alone treatment. By then lyme is nearly impossible to erradicate effectively and has already wreaked havoc on our lives. Many of us will be on some form of antibiotics for years or even for life in an attempt to squelch the effects of this disease.
For 13 years I suffered wrongly and I have lost so much, and so has my family. I have been ridiculed by physicians, family, friends, employers, family court officials, counselors and attorneys. My marriage to my second husband is strained to the max from the years of court proceedings, games by my exhusband, countless medical examinations and treatments, working years of overtime to support us, and other related things that have served to put a wedge between my ill self and him, an innocent man whose only crime is that he doesn't understand the effects of lyme, or how to deal with it.
Most of my life history including my health records and family court struggles are a permanent part of public record, all because of lyme. If just one doctor along the journey of the past 13 years had been properly educated, aware of, or unafraid of lyme disease, then most or even all of what I have been put through would never have happened.
Since my diagnosis, I have had more court visits to attend, more charges to defend, more contempt motions to evade, more doctors to subpoena, more medical records to disclose, more disability issues to handle, and more visits to doctors, more surgeries and more hospital visits.
My search for lyme treatment has not ended. I continue to visit doctors and visited a supposedly lyme-literate physician who turned out to be a quack. He left me in the middle of i.v. treatment with severe complications to the over prescribed (and some unnecessary) medications he refused to adjust despite my severe reactions to those medications.
He suddenly dropped me during treatment after the social security disability department had to request numerous times for my medical records. This same doctor suddenly stopped my treatments despite my willingness to continue, and left me with an infected picc line hanging in my arm and no one to care for it.
I had to resort to going to another hospital (after two others refused) to have it pulled out because this doctor would no longer take phone calls. No other doctor or hospital would continue my treatment due to this doctor's handling of my case. Despite its rampant prevalence, patient abuse should never be tolerated under any circumstances!
I continue to struggle to find competent lyme literate medical doctors who are willing to treat, knowledgeable enough to do so, and willing to stand up as a patient advocate in the realm of A.) Treatment, B.) support, and C.) disability.
I have, like many patients, traveled out-of-state because we cannot find Lyme-literate physicians in Wisconsin or in many other states. I am so tired of hearing "chronic lyme doesn't exist" or "we only treat accute lyme cases" or even "lyme is such a vague disease, we don't treat it" (this last one coming from an Infectious Disease "specialist".So who do you go to?
In the now many months since my diagnosis, I have discovered to my dismay, that I contracted a disease mired in controversy. From diagnosis, treatment, insurance coverage and doctor's real concerns of losing their medical licenses to tourism concerns that lyme-endemic areas will no longer generate tourism revenue.
Since when has human life become less of a priority than almost everything else? Is tourism a greater concern than human health? Has the hypocratic oath now become the hypocritic oath? Why do government and special interest groups' financial bottom lines rate over the health of the general population?
Because of mine and so many others struggling with lyme and co-infections, I launched this web site and support group. I wish to share my story to help raise awareness of lyme disease and its devastating effects on patients and their families.
I continue to write letters to Congress about our disease and the devastation it has caused. We all must help push bills through that will constructively assist lyme patients and their families get the help we so desperately need.
New doctors I meet still turn up their noses at me when I talk in their "language". They seem to resent patients knowing anything about their own health conditions. And yet every time I meet a new doctor or nurse they say to me, "What is your background, are you a nurse?" I still get doctors who dismiss me, criticize my being on disability, and who openly have mocked my list of real symptoms and accused me of lying and/or researching lyme so I would "know what to say" to them in order to get treatment. This is ridiculous and inexcusable.
In a surgical recovery room, I had a discussion with one nurse genuinely interested in lyme disease. Why are nurses willing to acknowledge a disease that is epidemic yet the very doctors they serve refuse to acknowledge this same disease?
I hope my story can be an example for you to learn from. If you or someone you know thinks they have lyme, Do NOT suffer in silence or out of frustration. Find a lyme-literate physician. Contact this or another support group. Find someone willing to make referrals to a doctor in your area. Call doctors yourself and ask questions. Do not remain complacent. Ask questions, find answers. Do not accept opinions that do not feel right to you, or that attempt to put you down or dismiss you. Fight to get answers, fight for wellness. Lyme is a fight for your life and has devastating consequences when ignored or dismissed. The sooner treatment is begun, the sooner the chance to recover.
We live in our bodies, we know what is happening to our lives. We need to educate these doctors to LISTEN to their patients. Do not be afraid to mail information to these so-called educated physicians when they deny lyme exists or refuse to treat you.
Educate yourself and your families about lyme disease. Help spread the word about lyme to your physicians, friends and congresspersons. Lyme costs dearly in many ways, but it doesn't cost anything to spread the word.
And most importantly, to those who suffer from Lyme, don't give up, YOU ARE NOT CRAZY. Yes, you have Lyme, but you also have lots of support. Visit the lyme links on this website and as many as you can find on the internet. Get a lyme-literate doctor, get educated about your illness and most importantly, GET BETTER.
Take care and God Bless!