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Rafelle's Story

Hi, my name is Rafelle and I am 37 years old. I contracted Lyme disease in 1985, but I didn't know it was Lyme disease until 1997. I was working in Dallas, Texas, as a house painter -- I worked in undeveloped areas. This was a physically hard job, but I didn't mind. I frequented the lakes for leisure on my day off, and it was at work or play that I was infected by a tick. I do not remember seeing or having a rash, but I will never forget the slow progression of bad to nightmarish symptoms that developed -- nor will I forget the abuse and ignorant treatment by the medical profession. NEVER!!!

I started getting ear infections and vertigo. I had an infection of the gum above the right tooth that came and went. I was emotionally feeling off balance -- some of this I attributed to the changes in my life at the time. I had just moved from Colorado to Texas, coming out of a bad marriage and raising my son on my own...... any how, I was also feeling fatigued and I had to go to the emergency care centers for (????), as no doc could figure it out. I also had no insurance so I did not have other symptoms checked out; like my irregular heart beats, a pounding in my heart, and the fatigue.

In 1986 I moved back to Colorado ...( I missed the mountains and my family and friends ). The fatigue continued and I noticed a heavy feeling in my chest, and my heart did not feel normal. I kept on working and met my new husband. After trying to ride my bike to work one day and having to stop because of irregular heart beats, I finally went to a doctor who said it was just stress. I felt it was a lot more than that and I told him I believed I was stressed because of my deteriorating health ........ but onward I went and it was getting difficult. It was now 1987 and I was pregnant. I did not feel well, and during my pregnancy my knee became swollen ... they tapped it but didn't check the fluid .

I had continuous sinus and ear infections, and my ears rang. When I delivered my 2nd child I developed Bell's palsy, which I was told was due to the pushing ...... yeah right!! Shortly, I was pregnant again and this is when this disease showed its ugly teeth. I was waitressing, and I was sleeping 11 to 12 hours a night and struggling through work. My neck hurt and my muscles would ache and be stiff for no reason. I had the allergic thing happen a few times, and noises were starting to bother me .

I had a bicycle accident at 7 1/2 months pregnant. Within that week I developed insomnia, so I went from one extreme to the other. I know God helped me deliver my 3rd baby boy, because I was losing ground fast. My new horrible symptoms, light and sound sensitivity, and insomnia and a pressure that I felt in my head that was tremendous and all consuming -- I could not think straight and I fought for my sanity, literally! I had seen a few doctors by now. I was diagnosed with post pardom depression and was put in a psyche ward for a 10 day evaluation .

And so started 10 years of diagnostic tests. My first was a Catscan of my head -- it was fine as I was told often. I started on antidepressants and sleeping pills; nothing worked. We moved to Iowa, as my husband got a job at the health department ....... new doctors and more diagnostic tests -- my blood work was always normal. It would take a separate page to list all of the tests I've had; some were really bad. I continued trying different antidepressants and pain and anti-inflammatory meds.

Emotionally, I was a wreck -- I felt like such a burden to my kids and my husband. I tried to be "normal" but that took its toll, because all I did was over do it, and I suffered. I tried to work; I lasted 8 months. From day to day I never knew what my symptoms would be, or how bad. My new symptoms now were excruciating pain in my face on the right side, pain in my teeth (also on the right side), joint pain, muscle pain, pressure in the roof of my mouth (this was awful), pain in my right shoulder blade, and stabbing pains in my head. I was in a daze and felt confused, often.

I was so tired and wound up at the same time. I had insomnia for 7 years, and this fear that I was going to die, and that during my autopsy they would finally find out what was wrong with me. I almost found comfort in this thought -- that's pretty sad!!!! My family suffered immeasurably. I have seen almost 25 different doctors including oral surgeons, dentists, accupuncturists, etc. I've been to the Mayo clinic 3 times, and other renown places. I had a few diagnosis including fibromyalgia, TMJ, A-typical face pain, chronic pain syndrome, and a few others. I have tried so many different prescription drugs, and stuff like nerve blocks. I had 4 teeth pulled and 5 root canals all because of pain. I had 4 TMJ splints made; I've had novacaine shots in my face.

Most counselors I saw shared the same feelings of my problems being physical in origin. In September, 1996, I had to go to the hospital. My heart was pounding and I had a flushing feeling and I felt faintish. There were other syptoms that are hard to explain. This happened 2 more times within 3 weeks, and I have never been the same since, and I still do not know what happened. I had gotten by until now with semi relief for 3 years, by taking antibotics. Biaxin helped the most but I wasn't on them steadily. Very, very often, I knew the antibiotics were the only things that helped, but no doctor would believe me or investigate my claim.

Now nothing helps, and I have a hard time with antibiotics. A friend of mine in Denver called and asked if I wanted any info. on any diseases -- she had use of the internet. I didn't, then ...... I named 3. Lyme disease was one of those and I don't know why I named it. When she sent the info. I cried for 3 days straight; I knew what I had!!! I saw a Lyme literate infectious disease specialist in January, 1997, and Lyme disease was confirmed by a blood test and a history. I also now have a high EBV titer (a virus). I live with my parents and my knew symptoms included numbness, migranes, mood swings, rib pain, shortness of breath, confusion, a stiff neck and back, unusual rashes, cognitive problems, and problems with my depth perception.

There are days I do good to get the mail. My lungs and stomach have been affected, and my eyes water and are painful. I've lost a lot of hair, and not all of my muscles work together -- not at the same time!! I was an energetic, funny, and lighthearted person. It's a challenge to preserve some of these traits, and impossible for others. It is exhausting and painful to relive my story and I have left a lot of personal accounts out .

I now have late stage Lyme disease. I can only hope for a better quality of life. It feels like it's a galaxy away, that I would ever feel like the true me again, but I always pray for a cure and for all the other people who suffer ........ Incidentally, I do wish this disease on all the ignorant doctors and people I have been so awfully mistreated by -- but only long enough for them to be truely, heartfeltedly, enlightened!


Rafelle Dart

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