Hi, my name is Jennifer. Having Lyme has been an uphill battle for me as well. Idon't even know if I can tell my story in 1000 words. I never saw a tick on me, nor did I get the bull's eye rash they talk about. Maybe if I had, I could have been treated early and prophylactically. About 2 years ago I began to have heart palpitations (so bad that I could not get up and walk around the house. I went to a cardiologist, who did ekg, ultrasound, and Holter monitor testing. The finding:dysrythmia.
He gave me Inderal which helped some. If I had any other signs earlier than that, like a fever or something, I must not have thought anything of it, because I didn't notice it!
Now last March, I began to get the sensation as if I had something stuck in my throat, and it got to the point where I could not eat. I went to the Dr.(I never go to the Dr.),and he looked in my throat, and gave me Ceftin, and told me to take Robitussin.
Well, my throat dried out "sooo" bad, I felt as if my throat was closing up! I went back in. He then sent me to an ENT, who looked in my throat, and saw nothing at all. In the meantime they said they thought they felt a lump on my thyroid and sent me for an ultrasound, and a barium swallow. I did thyroid tests; everything normal.. Then they sent me to a gastrologist, who did and endoscopy; all normal. Still, I could not eat (only ice cream and puddings).
Now in June (lost 30 lobs already), I began to experience a funny feeling on the left side of my face; the next day my arm . I thought I slept on it funny. Then the next day my leg. They were so numb and weak. I could not feel them and the left side of my face drooped slightly. I went to the ER (I am a nurse, considering the swallowing problem and then numbness-stroke?). Once in the ER they did CATSCAN, ekg., labs, pt ptt (clotting times), all good and they told me to follow up with my Dr.
I went to the Dr. and told them what the ER doc suggested - Lyme Disease. They did not test me in the ER for this, but told me to ask my Dr. I did and they tested me; gave me a shot of Rocephin in their office, and gave me a prescription for Amoxicillin, just in case. They also sent me for an MRI of my brain, with and without contrast(aren't MRI's fun?), and a neuro consult. The MRI was fine, and the Lyme test was negative. I'll never forget.
I finally thought wow! They might find out now what is wrong with me! I called the doc's office for my Lyme results, and the nurse was annoyed I guess, because I kept calling. She said to me " well did you ever see a tick on you?" When I told her not that I knew of she said "well you probably don't have it then!" (ironic huh?) The result, anyway, was negative. I went to the neuro who did an exam.
I asked him about Lyme, and my negative result. I asked him about the chance of a false negative. He told me the tests are so sophisticated nowadays, and if it was negative, then I didn't have it. He told me I didn't need to keep taking the antibiotic, because I didn't have Lyme, and asked me "are you anxious?" Then he told me that he had no clues pointing him in the right direction, and that I should wait and see, and if more symptoms returned again later, to return.
I then went to an ENT. The weakness persisted but the numbness wasn't as bad. I was told I had acute sinusitus, and was put on Claritin and Flonase. They helped my swallowing some. I could then eat, but 'till this day I have a postnasal drip 24-7, that never goes away. I went back to the ENT, and I was diagnosed with "acute sinusitis." He told me it had to be my cats.
I went to an allergist to be tested (I have been breeding Persians). I wasn't going to get rid of my cats unless I was sure). I'm allergic to no animals, trees, molds foods, anything at all! Yet I've had acute sinusitis for over a year now :( I returned to the neuro in November, with more weakness, fatigue, numbness, confusion, unsteady gait, dizziness, facial twitching. Prior to this, I went to my primary MD for blood work, so at least we would know what it's NOT. Lyme(again),hepatitis screen, lupus, rheumatoid, all the blood work u could think of - all PERFECT! Lyme negative again.
I gave this to the neuro on the visit. He was now leaning towards ms. He did triple evoke potentials (normal), then an MRI of my spine (also normal). The next step was a spinal tap, which I had January 13th (normal again). So he ruled out multiple sclerosis, and told me that I was perfectly healthy, and Ihad been through "extensive testing." Well, now I really felt like a loon. I figured my symptoms were psychosomatic(brought on by stress). I then went to a psychiatrist.
I also was depressed due to this. I felt there was no hope. He gave me Serzone and Buspar. Boy did these do a job on me! I took them for only 2 weeks and I had to stop. I am a person who hated to take Tylenol even for a headache! Then out of the blue 2 weeks after my neuroligist told me I was "perfectly healthy," he called me and said "we got one of your tests back for Lyme, and its reactive" (so sophisticated huh- 2 negatives over a year).
He put me on Ceftin (500 mgs.) twice a day for 3 weeks. I felt ok, then after a week of being off of it, I felt so bad. My joints were sore, and the fatigue was so overwhelming. The weakness, and walking unsteady were so unbearable! I went back to the neuro, who put me on Zithromax (250mgs.) once a day. He told me to take 30 then stop for a week, and if the symptoms came back, to restart them and I would possibly be taking the Zithromax for 3 months to a year.
He told me I had a Herxheimer reaction. I've been on the Zithromax for 3 weeks. I called the Dr. the other day because I felt the antibiotic wasn't helping. He told me that what I was feeling was damage the Lyme already had caused, and that he felt the Lyme was no longer active. He said it was because it was undetected for so long. Anyway, I got a rash on my face and a fever 2 days into the relafen, so I stopped it. It doesn't help anyway.
Finally, I said to myself, I need to tackle this with full force. It went undetected for so long, now I'm only on Zithromax once a day? I felt I needed a Dr. who was educated and understood the disease and the stages. The Internet has provided me with resources and support. Even though I wouldn't wish this on anyone, it feels good to know your not alone and there's hope.
I have an appointment with a llmd on 4/40; 2 hours away, but worth the drive to get better, and have a Dr. who understands me. Thank you two all that support others, and God bless you all. Hopefully the country will start to realize that Lyme is a problem and regard it as seriously as others.
jen_1972_2000@yahoo. com on mgh neurology jen27
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