Paula (PJ) Langhoff - I found a nymph tick on the side of my back. A few weeks later, a bulls-eye rash appeared. I had flu symptoms. I recognized the bull's-eye rash but 2 doctors disagreed with me. "Lyme isn't in our area" they told me. Weeks later I suffered joint pain, fevers, gastro symptoms. Ten months passed and I was bedridden most days. I could no longer work. Both of my children exhibited rashes with little rings around them on their legs. My 2-1/2 yr old son suddenly stopped talking, and was falling down constantly. Both children had  unexplained 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 was diagnosed when he was 15. My daughter was 3 when she contracted symptoms of Lyme. She suffered from headaches, stomach aches, fatigue, coordination problems, handwriting difficulties, and severe depression. She is slightly overweight and has sugar intolerances. She suffers menstrual problems, depression and feelings that at times have approached homicidal and suicidal. She was diagnosed when she was 17.

Two years after the tick bite, I began to have episodes of anaphylaxis to foods, medicines and even a flu shot. I suffered bouts of anorexia, fatigue and depression. My gastro system went haywire, I could no longer travel, and was losing my hair. Doctors diagnosed "female pattern baldness." I suffered visual, olfactory and other hallucinations. I saw "people" in my bedroom when awaking from sleep.

One question I kept asking each doctor after giving them my complete medical history was, "Do I have Lyme disease?" The reply was always "No."  Instead, over 6 years I was either misdiagnosed or it was suggested that I had depression, endometriosis, fibromyalgia, MCS/CFS, agoraphobia, and needing counseling due to hypochondria. Two doctors suggested I take anti-depressants for pain. In 2000 I awoke  with a painful inflamed left ear. I lost feeling in the left and central parts of my face, hearing in my left ear, vision in my left eye. I had excruciating pain in my "skin" that hurt to touch, from the top of my head all the way down my back, my left arm, shoulder and left side of my body. The paralysis in my face lasted 9 weeks.

Then I came down with symptoms of MCS, and anaphylactic symptoms toward everything from table salt to preservatives. For 3 years life declined steadily. The left side of my body no longer worked well. I could not balance or walk straight. I could no longer eat, sleep, eliminate, drive, or function normally. I awoke to numb hands and feet or legs that would not support my weight. I would suddenly fall asleep in the middle of the day. If I was 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. Sometimes I would drive somewhere and forget where I was going, or worse yet, not recognize where I was.  I began "counting" things, a form of OCD. I would cry at the drop of a hat, my emotions were a roller coaster. I even had a violent mental image of a slain person, someone who I knew. The words suicide, which aren't even in my "normal" vocabulary, became a familiar, unwelcome but fleeting thought for months, (I thought of the word, but not the feeling that I wanted to act on it though), but then just as quickly, it 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. Many Lyme patients say "I felt as if I was losing my mind". I felt angry and irritable. Everything seemed intensely magnified. I felt like running out of the department store because the light was too intense. I wore sunglasses indoors and was hypersensitive to sounds and smells. I smelled and tasted things that no one else did, often making food offensive. I suffered sudden panic attacks and heart palpitations. I occasionally misjudged distances while driving when I never had a problem seeing before.

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 because of my undiagnosed illness. 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 growing in my abdomen. 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 lost count of the number of doctors. I received more inaccurate diagnoses but no one would test me for Lyme. Several doctors suggested I see a psychiatrist. One doctor scolded: "I'm not going to hold your hand every time you think you have something wrong with you!" Another doctor suggested I was perimenopausal. Another misdiagnosed me as agoraphobic. My anaphylaxis worsened. 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 been to allergists, and virtually every hospital ER in SE WI. I had to severely limit my diet to avoid the anaphylaxis. Eventually I could only eat 5 "safe" foods, every day, for every meal. These included white cheese, corn, oranges, saltine crackers and bananas. I drank water and nothing else. It grew worse to include only potatoes, cheese and bananas for a time, until we discovered that the offending substances were a chemical laden within many processed foods, and not necessarily the food items themselves. Organics and minimally processed foods assisted with this process and eliminated virtually all the anaphylactic reactions, and this carried over to medications, which had to be carefully screened.

I saw a dizzying array of neurologists, gastroenterologists, allergists,  endocrinologists, rheumatologists, general physicians, gynecologists, osteopaths, orthopedists, and a couple of psychiatrists. I endured two 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, because the cause was actually Lyme.

I was referred by an endocrinologist to the Mayo Clinic in Rochester, MN. I spent 10 days at Mayo, able to eat at the time, only white cheese, saltines, potatoes, mixed vegetables, 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 refused to test me for Lyme disease, and focused mainly on my gastrointestinal system and the anaphylaxis. When the 10 days were 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". They never once regarded my prior medical history or were willing to test me for Lyme. I would find out later why this highly political illness is often ignored by the medical establishments, and its not because Lyme doesn't exist, it does, and Wisconsin and Minnesota, where the Mayo clinic are located, are even in endemic areas for Lyme disease.

After Mayo, life went from bad to worse. My few tolerable foods continued to cause reactions. For a week I ate only white potatoes, as anything else seemed to cause anaphylaxis and it wasn't anything that I could affect or control. After 7 full days of that nonsense, my body's potassium levels were so low I exhibited 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 cared. Doctors shrugged their shoulders and said "we don't know."

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. 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. The I lost my gallbladder after years of antibiotics caused its dysfunction.

Because I was unable to work, 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, so I lost an entire year's worth of benefits for no apparent reason. I was too sick to argue.

One doctor, after being told about my long list of symptoms, asked me, "So why are you disabled?" I  wrangled with insurance companies for coverage for treatment of Lyme disease and the expenses attached because the insurance industry doesn't want to pay for long-term treatment of Lyme patients as it is so costly. I applied for financial assistance to every hospital and treatment facility to lower our medical bills. I traveled out of state in an attempt to get proper medical attention. We had to file bankruptcy because of the strain the medical bills caused on our one-income family because I could not work.

We won't even go into the family court issues I have faced, and am continually facing due to lyme disease. Suffice it to say that my medical history is on public record while my ex-husband and his attorney rifle through them attempting to label me "mentally ill" due to Lyme disease. I did however have a judge actually say to me "you don't look sick" and his natural conclusion was therefore, I must not be sick. At the time I could not PAY my LLDM to testify on my behalf and his letters were INADMISSABLE in court so I had nothing to substantiate that I was indeed ill. I was therefore charged with contempt for failure to seek work in order to provide child support. Never mind I had just undergone months of treatment including IV therapy and was filing for disability. Later on the arrearage was wiped clean and my disability paid my ex my benefits for child support. Yes he has placement of my children. How did he get it? Through manipulating the court system while I was extremely ill. That is another story that I am writing about and will publish down the line. But know that Lyme destroys more than the physical health of its victims, it can also destroy the emotional health of the families it affects, especially the children.

Fourteen (14) years after contracting lyme disease, I struggle with physicians for basic healthcare. I get angry when a supposed lyme-literate physician tells me 30 days of doxycycline is "enough" to cure lyme, or that the months of iv meds I have received should be "enough" to have cured me. Or when a neurologist tells me he "doesn't believe neurological lyme disease exists." 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 14 years. Intravenous treatments for my lyme disease have done little to eradicate it, and much to send the spirochetes into hiding. I endure practitioners who mock their lyme patients, or tell us that lyme is all in our heads and we should seek psychiatric care.

With every new doctor, we begin from scratch. I tread lightly trying to get an accurate diagnosis, support for my disability and for basic healthcare. I still suffer intermittent vertigo, nausea, balance and coordination problems, daily pain, frequent headaches, hypersensitivities, food allergies, sleep disorders, parasthesias, visual disturbances, muscle spasms, bone pain, muscle weakness, spatial relationship problems, word-finding difficulties, sleep disturbances, problems eating, functioning, etc. Along the course of time, I was misdiagnosed with MCS/Fibromyalgia, pinched nerves, shingles, insomnia, summer flus, skin "rashes", bronchitis, hypochondria, severe stress, sinus infections, tinitis, migraines, cellulitis, perimenopause, osteoarthritis, slipped discs, radiculitis, endometriosis, female pattern baldness, and even agoraphobia (my personal favorite). Not one of the many many doctors I saw over 12-1/2 years diagnosed me correctly. Only one doctor ever performed any kind of Lyme test, a Lyme titer, and he misread the results. Finally in 2005 I was correctly diagnosed with Lyme and several coinfections. Lucky for me, I did receive IV antibiotics and am substantially better than I was at this time last year, though I am still struggling to function and get better. I still however, cannot eat normally and still suffer anaphylaxis to foods, chemicals, and insects; where I was never allergic to anything before. My immune system is on constant overdrive, thinking it has to attack everything it comes into contact with, and what I can tell you is that living in this manner is pure hell.

The question remains the same today as it did for me and my family way back in 1992.
 
Why can't Lyme patients get the help we need when there are so many of us ill?

* * * *