--"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, bulls-eye rash on my back, about the same area as where the "scab" was removed.

I immediately made an appointment with my doctor; I also felt like I was experiencing a virulant flu. Since I had some degree of medical experience, I recognized the bull's-eye rash as a symptom of lyme, though at the time, I did not associate that rash with the "scab" that I had removed earlier.

Several days later at my appointment, 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 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 or my symptoms.

Several weeks went by and I came down with major flu symptoms, joint pains, fevers of 104 degrees, fatigue and gastrointestinal symptoms. I was bedridden for four days and could barely move. I went back to the original doctor, who 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. 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 but in the back of my mind the rashes looked all too familiar.

My young son who apparently 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 multiple antibiotics. 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. She suffers from depression and feelings that at times have bordered 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. This straight A student was taken out of school on an emergency detention due to some of her behavior, in part most likely caused by lyme-induced depression. She has gotten some antibiotic treatment since but continues to have a black cloud surrounding her, along with physical complaints and fatigue. 

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 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 very sick but I couldn't get anyone to tell me why. 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, monthly and concurrent doses of various antibiotics like amoxicilin, penicillin, erythromyacin, zithromax, suprax, biaxin, sulfameth-trimeth and a few I can't remember now did give me temporary relief from the most severe of symptoms, but I was still not very well although now I could at least function somewhat.

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, (lyme facial palsy), hearing in my left ear, vision in my left eye, and my ear became an inflamed, swollen mass. I developed excrutiating pain in my "skin" that hurt to the touch, from the top of my head all the way down my back, 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 to 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 symptoms 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 somehow able to nearly manage a smile at the wedding to my second husband.

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. Some mornings I awoke to hands and feet that were completely numb, or legs that would not support my weight, causing me to fall. I vacillated between not sleeping at all and sleeping many more hours than normal people.

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 even briefly experienced a few violent mental images of slain persons, some who I knew, some I didn't. The word "suicide", which isn't in my normal vocabulary, became a familiar, unwelcome thought for weeks, 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 and I began to wonder if there was something wrong with me, like most Lyme patients, I wondered if I might be losing it. I felt angry and irritable. I smashed a telephone after a conversation 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 and curative 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 could barely walk around the block at this point, feeling like a heart failure patient. I slept whenever I could, round the clock.

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 perimenopausal. 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.

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 because I was reactive to the contrast mediums. One fairly simple test that I had done years before suddenly couldn't be performed because of anaphylaxis to barium. When it happened right in front of them, the doctors admitted they had never seen that type of reaction before.

With my testing at Mayo complete, 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 my ongoing divorce proceedings!" I could not believe that I was sent home, untreated, in my condition, which was literally starving to death. 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 seemed to be concerned. Doctors shrugged their shoulders. I was having cognitive impairments and returning sleep hallucinations along with a myriad of other symptoms. I put my affairs in order. I designated a power of attorney and healthcare directives. I prayed my death would come peacefully and that my children would be able to handle it. Each day that came and went was a struggle to survive.

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 terribly for being "unreliable" when making plans to visit them and then having to cancel at the last minute due to my health condition on that particular day. I lost my support system through no fault of my own, except that I was continually sick and people just didn't know how to cope with that scenario.

Never mind depression, I was in a deep, dark pit with no way to get out except by my own will power. At the time, the thought had never crossed my mind that there might be a support group for this type of thing, I barely knew anything about lyme disease except all the confusing literature I found in books and publications. In my ignorance, I couldn't have known the thousands of others struggling through the same illness.

Despite surviving all my health problems and some harsh personal issues, the loss of several jobs, and the tumor, the effects of then 13 years of lyme disease and antibiotics 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 and  excrutiating and debilitating.

Another new doctor performed tests and referred me to a surgeon. 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, not necessarily due to antibiotics, 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 enormous medical files, copying a mountain of records and waiting months and struggling through interviews. Some records were so old that the physician offices had already destroyed them! 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 in "you don't look sick so therefore you must not be" school of thought.

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 an entire years worth of benefits while social security arbitrarily chose a "disability onset" date that was a full year after my onset, probably just to deny me my rightful benefits and save money.

Meanwhile, I could not work due to my physical condition and symptoms and I struggled to get through each day. One doctor, 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, aren't you listening? Just because I can still walk around doesn't mean that I am okay!" Apparently one has to be on one's deathbed before some in the medical 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 then thousands of dollars of medical bills that were mounting. It barely made a dent. By the grace of God however, with the tiny down payment we had, we found a home in a lower price range that we somehow afforded.

I have had to wrangle with insurance companies for coverage for treatment of lyme disease and all the expenses attached to it. While the insurance companies were all too happy to pay for the SYMPTOMS of lyme disease, once I had a diagnosis, their tune changed. Suddenly, I could not get lyme-related coverage!

I have had to apply for financial assistance to every treatment facility and hospital in order to ask for assistance to lower our medical bills. I have traveled out of state multiple times in an attempt to get proper medical attention and treatment. We have had to file bankruptcy because of the strain the medical bills caused on our one-income family budget, and the need to continue treatment for myself and two children.

I find myself struggling with physicians for basic healthcare. I get angry when 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 neurological lyme disease exists." Of course I immediately copied a 15-page study on the effects of lyme neuroborreliosis and mailed it to him, along with papers, diagnostic/treatment guidelines and research data to support my illness.

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 decade and a half. Intravenous treatments for my lyme disease have done much to eradicate it, and it also sent  spirochetes into hiding. I endure doctor visit after doctor visit where many 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, perimenopausal woman when my health problems are Borrelia Bergdorferi. (Bb) and its associated co-infections. And in my case I have several accompanying me on my lyme odyssey.

I listen to personal prejudices over which testing laboratory results are "accurate", and I struggle with doctors who would play God because of 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.

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, IQ points, 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 well over 100.

Everywhere I go, I began from scratch. I tread ever so lightly while trying to get a diagnosis and support for 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, poking/stabbing sensations, joint pains, stiffness, light/sound sensitivities, hair loss, brain fog, forgetfulness, disorientation, 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 really just 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 13 long, horrible years, I finally had the diagnosis I had been asking the doctors for, since day one. "Do I have lyme disease?" The answer was simply, and regrettably, "YES."

My happiness at being diagnosed quickly dissipated. "You don't look sick," people had told me and were continuing to say to me. I was typically written off as a psycho or hypochondriac. Sadly, I happened to have a disease that I later learned was incredibly steeped in political controversy, making finding a diagnosis and treatment next to impossible in my state, and many other parts of the world.

Unfortunately a local lyme support group 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 had to explain my situation to them in great detail in an effort to solicit a doctor's name to treat me. One group member suggested that I send him my medical history for review so they could "determine" if I was really a lyme patient instead of a representative from some medical group trying to pinpoint and prosecute lyme treating doctors. I was so unsuccessful getting help from anyone that I began my own support group, and decided that no matter who contacted me, if there was any way that I could help them avoid some of the pitfalls I had been through, that I would absolutely do so.

I resorted 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 receiving a diagnosis, let alone any type of treatment. By then lyme is nearly impossible to eradicate 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 15 years now I and my children have suffered wrongly and we have lost so much. I have been ridiculed by physicians, family, friends, employers, family court officials, counselors and attorneys. My marriage to my second husband was tested to the max from the years of countless medical examinations and treatments, working years of overtime to support us, and other related things that have helped to drive a wedge between lyme patients and non-lyme suffering family members who don't understand.  

Most of my life history including my health records and family court struggles are a permanent part of public record, all because of lyme disease. And yet if just one doctor along the journey of the past 14 years had been properly educated, aware of, or unafraid of lyme disease, then most or even all of what I and my family have been put through may never have happened. Multiply my story by thousands of people with lyme disease and it is a sad state of affairs in the world, and this is just one disease.

Since my diagnosis, I have had more medical records to gather and disclose, more disability issues to handle, 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 IV treatment with severe complications to the over-prescribed (and some unnecessary) medications he refused to adjust despite my severe reactions to those medications.

One doctor 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 my picc line  pulled out because the doctor would no longer take phone calls, citing his "busy" practice. Hey, wasn't I a patient? No other doctor or hospital would continue my current iv treatment due to this doctor's handling of my case, so I had to stop treatment that was actually helping me for once. 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 diagnosis & treatment, support, and disability.

I have, like many patients, traveled out-of-state because we cannot find Lyme-literate physicians in our state. I am so tired of hearing "chronic lyme doesn't exist" or "we only treat acute lyme cases" or even "lyme is such a vague disease, we don't treat it" (this last one coming from an Infectious Disease "specialist". This leaves many lyme patients asking where to go and who to see with no answers.

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A full year and a half has passed since my lyme diagnosis, and I have discovered to my dismay, that I contracted a disease mired in huge 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 revenue, the controversy continues. And there are many lyme groups out there (including our own), fighting to get legislation passed to protect physicians who attempt to treat lyme patients. The movement is ever so slow. Meanwhile, thousands of new lyme cases are occurring each year. Many of those cases go unreported and undiagnosed.

Because of mine and so many others struggling with lyme and co-infections, I offer you this web site, informational support group and www.lymeleague.com. 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. I am meeting with our representatives to speak in person about my story and the stories of my members to help raise awareness so we can get earlier diagnosis & treatment.

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 bodies. And yet every time I meet a new doctor or nurse they say to me, "You are so knowledgeable, are you a nurse?"

I also get some doctors who rudely dismiss me and criticize my being on disability. One doctor openly mocked my list of real symptoms and accused me of lying and/or researching lyme so that I would "know what to say" to him in order to get whatever treatment I wanted.

Can you imagine anyone with such a sad or boring life that they would actually go around doing this? To suggest this is absolutely ridiculous and inexcusable.

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. READ.

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!

PJ

NOW READ MY PERSONAL STORY IN MY NEW BOOK:

"The Singing Forest, A Journey Through Lyme Disease", Available here and on Amazon.com
Foreword by Dr. James L. Schaller, 220 pages. The unbelievably candid and true story about the long-reaching effects of Lyme disease on one American family. Covers controversial subject matter: divorce, disability, discrimination in the family courts, schools, Seppuku, Columbine, the Federal Government, undiagnosed Lyme Disease, allegations of child abuse and mental illness. It will leave you wondering what happens next!
Only $19.95

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