PAULALLA ON OLLUT BORRELIOOSI 13 VUOTTA. MYÖS LAPSILLA ON BORRELIOOSI. POIKA SAIRASTUI 9 KK:N IKÄISENÄ JA TYTÄR 3-VUOTIAANA. Paula on menettänyt sairauden vuoksi vuosien aikana terveytensä lisäksi toimeentulonsa, perheensä, kotinsa jne.
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.
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päivämäärä Pe Huhti 16, 2010 19:56, muokattu yhteensä 2 kertaa