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Lyme Disease Message Board


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Stacey, Charlotte Hall, Maryland - Age 38
Infected 1993. I was diagnosed with ring worm that year by my internist. Funny thing is the only reason I had that rash checked out is because the nurse at work told me to go to the doctor because it looked like it was from a tick. Nope he said ring worm and he was the doctor. I got a copy of my medical records last year and my chart says possible ring worm. All my problems started shortly after that rash...

In the beginning it was the fatigue, numbness, constant sinus infections that put me down for 2, 3 days to a week, and bouts of shaking, out of it feelings. Sometimes they diagnosed viral infections and that was the diagnosis the time I could not walk. I was also having ringing in my ears, high pitch sounds and cracking, musical/audio hallucinations, shooting pains, jaw pain, skipped heartbeats, rib cage soreness, other pain that came and went, knee pain, brain fog, insomnia, balance problems, head pressure, shooting pains in eyes, and my face was started breaking out and very sensitive...

I could actually feel the sinus infections coming on and after numerous visits to my internist decided to just take amoxy when I felt like I was getting sick. My doctor never really understood how bad I felt when this stuff happened so I decided to save myself the doctor fee since my mom always had amoxy on hand in case the farm animals needed it. This probably did help keep the lyme at bay some what and doctors would have never figured it out anyway. Although I should have long before I did especially since I lost my horse to lyme in 1992.

My symptoms continued but were manageable. They were gradually getting worse and in 1999 we started looking for property. We took many walks in the woods and I could barely make those walks… The breathing problems had started and I was so, so tired.

By 2000 we had started construction on our new home and my husband and I played general contractor. I was not well and literally could not help with the manual labor which was not me. I kept thinking I was so out of shape… At times I would think it was something environmental or the new vitamins or maybe I was allergic to alcohol. I also could not stand the smell of perfume or anything chemical.

The chest pain/breathing problems were worse and I now had nausea that came and went, my legs hurt, neck pain, rashes, head pressure... I once again visited the emergency room that fall because my internist thought the worst when I was having numbness in my left arm, chest pain and high blood pressure... I was so used to this that I would have not made the ER visit but my periodonist was very concerned about my high blood pressure and advised me to call my doctor as soon as I got back to work. Needless to say I was diagnosed with yet another viral infection. I swore no more doctors or ER visits that I would just deal with it and I did.

By 2002 I felt like death warmed over. My legs never quit hurting, my neck stung/hurt badly and I kept thinking it was from looking at the computer screen wrong. My cheeks and face hurt, I was missing much more work and my teeth hurt. I felt like I had a constant hangover. I was weak, my shoulders hurt, stiffness, legs shook, left arm would go totally numb at night, my hands hurt and I could not even squeeze a windex bottle.

My ankles hurt, the pressure never let up in my head. That summer I had a really bad case of poison and was given prednisone for two weeks. Shortly after things got even worse. I do not know if it was the prednisone or a coincidence but I started having problems with ovarian cysts rupturing. I was told my nausea and leg pain was due to the cysts but my doctor never understood why I had pelvic pain but other wise I was told I was perfectly healthy.

By early 2003 I had started researching MS, cancer... you know the routine. The ovaries were still a problem. I became a lifetime movie junkie and could only clean house during the commercials because I was so weak. My husband once told me he was tired of seeing me watch ***** flicks every weekend. I could not stand in line at the grocery store much less carry the groceries in. I was so afraid that I would die before I ever knew what was wrong.

I still had all of the prior symptoms but they were more severe. I had problems swallowing; my muscles twitched like fireworks were exploding in my body. My heart raced, I could barely lift a small pot of water, the front of my neck had a weird bruise that stung, and I felt like worms were crawling in my forehead along with the constant shooting pains that I thought would kill me. My head felt swollen, it felt like bees were flying in my ankles, felt like things were crawling on my body and sometimes like I had run into a cob web. I felt like I would pass out even sitting down. I had a hard time holding my head up to watch TV. I would have to take a break from doing simple things like the dishes. I noticed I constantly sighed.

My neck felt like it had an electrical charge with the pain, breast pain and bruising, bruising on front of lower legs, I was too weak to blow dry hair, my gait felt different and my legs felt really weird like rubbery, the bottom of feet hurt, twitching in my head, constant nausea, and ovarian problems continued with pain plus weird noises. I had burning sensations in my legs, total terrible body ache at times, weird non healing areas which I never scratched or hurt. Shooting pains in fingers, numbness worse in feet, hands, big toe… I felt like there were short circuits in my head, my arms jerked, the brain fog was so bad I was afraid to drive... basically my mind was shot... and I now know that my central nervous system was being attacked.

My husband kept telling me to go back to the doctor. For what… I kept researching. Then in June 2004 our friend called because his dog was sick. I knew right away Scrappy had lyme as my dog was infected in 2001 and never the same. Our friend called back that evening to tell me I Scrappy did have lyme. That very moment a light bulb went off in my head. How stupid of me to never think of lyme.

My extensive research began and I knew without a doubt I was infected. I made an appointment with my internist knowing full well he would think I was crazy. He tested me using the Elisa and ran other blood work. I remember him saying just before he left the room “are you sure it is not depression – again”… I also now know it was lyme causing this and do not think an internist has any business diagnosing a patient and administering antidepressants.

Anyway, naturally the Elisa was negative but my blood sugar was high. The doc thought I was a diabetic and told me my symptoms were too wide spread for it to possibly be lyme. My glucose stuff was normal so I requested a Western Blot which was also negative. He then called his neuro friend and made an appointment for the following Monday. In the meantime I had found an LLMD in Washington DC and was lucky to only wait 2 weeks.

My doctor called just prior to my LLMD appointment to tell me they found nothing but the neuro thought I may have some rare, rare disease but he doubted it. I can’t remember the name of the disease. Anyway they wanted me to pick up some urine bottles and the next time my heart raced to give them a urine sample… I never picked up those bottles and actually could have given him a sample right then and there because my heart never quit racing.

In mid July I saw the LLMD and he told me my first visit there is no doubt I have lyme and he was pretty darn sure I have Babesiosis. He was right on the money as I finally tested positive through Igenex for lyme and Babesia. I ended up having Bartonella Henselae too. We later learned that our other dog is also infected with Bartonella Henselae. We lost our older girl to lyme in August 04 and our other girl is still having problems with lyme.

I also knew without a doubt that my mother has lyme. I can’t count the number of times I called her when something happened that scarred me and she would say “Yes, I get that - it must be normal”. It took me a year to get her to our LLMD but she was finally diagnosed in August 04 and doing much better. My husband tested equivocal and was treated for 3 months. I seem to have a resistant case of Babesiosis and the Bartonella is still kicking my butt. However, I am doing much better than I was a year ago and will beat this.

July 03 - started doxy for lyme and waiting for test results

August 03 - Started Babesia treatment Mepron and zithromax

November 04 - added artemisinin for babesia

January 04 - Felt pretty darn good so we started hitting the others with ceftin, biaxon and continued artemisinin.

April 04 - Babesia back resumed mepron, zithromax, continued artemisinin

October 04 - Babesia/Bartonella still a problem changed from zithromax to Ketek continued mepron and artemisinin

December 04 - Increased mepron to 3 tsp per day, continue ketek and artemisinin, added flagyl and bactrim (sp). The protocal is 10 days of mepron, ketek, flagyl, artemisinin. Then 10 days of mepron, ketek and artemisinin. Then 10 days of bactrim and repeat protocal.





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