Lisa I's Story
I am 23 years old and I have chronic Lyme Disease. I was misdiagnosed 7 different times before a neurologist finally diagnosed me correctly. However, by that time the disease had progressed so badly that I was on IV antibiotics for 7 months. I had to take my insurance company to court in order to make them pay for my treatment. The neurologist that treated me misdiagnosed again a certain strain; I have two (2) different strains of Lyme disease.
One strain reacts to Doxycycline and the other to Amoxicillin. As of the end of July I will again be on IV antibiotics. I have never been in remission. I have been in constant pain for one
(1)1/2 years, every moment, every second. I have every symptom that you could possibly have with Lyme disease. I have severe neurolgical problems because I was misdiagnosed so many different times. The general consensus from the "so called experts" (who tell me I don't know to every single question that I have about Lyme disease) is that I have encephalapathy.
I was a semester away from obtaining my Ph.D. in Clinical Psychology when I became sick. Now I can hardly walk. I have crippling arthritis in my knees, the bottom of my feet hurt, my elbows, fingers, and wrists. I have excrutiating headaches that radiate from the base of my skull all the way up to the top of my head and down to my ear. I take Darvocet to try and ease the pain. I have what the "so called experts" call Lyme Fog. I have no short-term memory and I sometimes feel as if I am going insane.
I feel like everything is surreal and that I am not actually here. I have had every kind of scan you can have; i.e. a SPECT Scan, CAT Sscan, MRI etc. It feels as if you cannot concentrate and that I am about 2 seconds behind everyone. I take Ativan for the panic attacks associated with that. But nothing helps. I feel like I am trapped in my head when I get that foggy feeling. I have chest pains, my heart skips constantly although the "so called experts" tell me that my heart is fine.
I FEEL AS IF I AM FULL OF POISON AND NO MATTER HOW MANY DOCTORS I GO TO, I FEEL AS IF NO ONE IS LISTENING TO WHAT I HAVE TO SAY. As far as I am concerned any Dr. that tells me "I don't know" to every single question I have about Lyme Disease is the novice, and I am the expert since I live with this disease everyday!!!
I now have to travel to New York, actually Long Island, to see a Dr. who is supposed the leading Lyme specialist in the United States. If he cannot help me I do not know what I will do.
I suffer from extreme depression, insomnia, panic attacks, anxiety attacks, edema in my legs and hands, severe excrutiating headaches (I also have trigeminal neuralgia), seizures from the Herxheimer reaction, chest pains, Lyme fog - encephalopoly, arthritis, chronic fatigue to the point where I feel as if I am going to pass out, dizziness in my brain, which makes me perspire and feel as if I am going to black out, ringing in my ears which sounds more like a whooshing sound. IN ESSENCE, I AM FALLING APART AND NO ONE SEEMS TO CARE.
I have 5 different Dr.'s supposedly working on my "medical team." Internists, psychiatrists, neurologists etc., and they have not given me back my life yet.
I worked as a litigation paralegal before I became ill and was almost finished with my Ph.D. in Clinical Psychology (a life long dream for me, when I became ill. EVERYTHING WAS TAKEN FROM ME BECAUSE OF THIS DISEASE. I HAVE LOST CONTACT WITH ALL MY FRIENDS, MY CAREER IS GONE, AND I AM BASICALLY HOUSEBOUND DUE TO THE EXTREME SYMPTOMS I SUFFER FROM EVERYDAY...
My illness has affected my family too, including my 10 year old nephew who is afraid that I am going to die. There are times when I feel as if I am going to die. I vasillate between rage and severe depression. I do not deserve this, and I want my life back. Everyone around me has gone on about there business. Everyone must work, and for the most part I am left alone with my pain to suffer by myself.
THIS ILLNESS HAS TAKEN EVERYTHING AWAY FROM ME....
I have no idea how I contracted Lyme disease. I do NOT swim, sunbathe, hike, garden, mow the lawn, camp etc. I went from my house to my car to my office and back. I am not an outdoor person. I feel TOTALLY OUT OF CONTROL; I HAVE ABSOLUTELY NO CONTROL OVER MY LIFE NOW. EVERYDAY IS LIKE RUSSIAN ROULETTE - WHAT TORTUOUS PAIN WILL IT BE TODAY??..
This is absolutely pathetic and sad that in the year 2000 in the United States, I have been allowed to become this sick....
NOTICE TO EVERYONE - NO MONIES HAVE BEEN APPROPRIATED TO RESEARCH INTO THIS DISEASE TO TRY AND FIND A CURE OR A BETTER TREATMENT METHOD...
SO WHAT HOPE DOES THAT LEAVE ME
I SUFFER EVERYDAY, EVERY HOUR, EVERY MOMENT, EVERY SECOND IN PAIN..............................
PAIN SO SEVERE THAT MOST PEOPLE WOULD NEVER BE ABLE TO TOLERATE IT.........................
PAIN SO SEVERE THAT I NO LONGER CAN TOLERATE IT AFTER 1 AND 1/2 YEARS..............
GOD BLESS TO EVERYONE WHO HAS LYME DISEASE....YOU WILL NEED IT......................................
Sincerely,
Lisa Ireland
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