Discussions By Condition: Infectious diseases

Educate yourself about Lyme disease

Posted In: Infectious diseases 3 Replies
  • Posted By: Anonymous
  • July 23, 2006
  • 06:15 PM

Doctors are not on the lookout for Lyme disease in patients. It is a difficult diagnosis to make as it mimics many other illnesses.
There are many excellent sources about Lyme disease on the internet but of course , you must first be aware of the symptoms of Lyme disease to research it, if you think that you may have it.
I awoke with a burning pain, redness and swelling in my lymph node in my pelvic area on Memorial Day. A call to the doctor's answering and a visit to the doctor the next day both brought the same diagnosis, An ingrown hair. s,
I could see what looked like 2 tiny white marks. The doctor put me on an antibiotic, but dubious and sure that it was some sort of insect bite, I begin putting my symptoms online. Blood red area, Pain and swollen pelvic lymph node, fatigue,chills, a cough that became bronochial . No Match.I checked out all kinds of spiders,ticks, but because I did not have a "Bulls Eye Rash" Lyme disease never came up.
I returned to the doctors 6 days later as the rash was spreading. She discontinued the antibiotic, thinking that it was the cause of the rash.I also had developed a female infection from the antibiotic and she advised me to purchase over the counter medication. 5 days later I returned as the rash had now spread forming a triangle- straight up the middle of my pelvic area, out to my hip and down my inner thigh. She placed me on Leviquin, another antibiotic.
I finally got an apt with a GYN who prescribed 2 pills to clear up the infection, but had not the slightest interest in my other symptoms.
Finally 2 weeks later, I inquired of a woman whom I knew had been bitten by some sort of insect. Her advice was to go see a doctor for infectious diseases, which I promptly did.
She did blood tests, which the lab messed up so I had to return the following week for repeat tests. She did a sedemation test , a tick titer test with a Western Blot, and blood work for other tick borne illnesses. THe next week the Lyme test came back positive and she placed me on Doxycycline. In the meantime my GP had sent me to a surgeon, who wanted to biopsy the lymph node. Fortunately, he decided to wait for the result of the Lyme test so further intervention was unnecessary.
By the time I started the antibiotics, I was already experiencing leg muscle pain, arm muscle pain and shoulder pain and had several days of pain in the sides of my neck and the base of my skull. Several days later, pain hit in my jaw and back at the same time. The jaw pain locked up my jaws so I was unable to chew for 7 days. The pain in the side of my back remains and I have been taken pain medication.The pain is always present, but at times hits with such intensity. ( The silver lining is that I have lost about 12 pounds, but this is not the way to do it)
Until the last several days I have felt like a big truck ran me over. Never have I had such fatigue .
I am awaiting results of an abdominal CT scan. I am fortunate that I also got into a Lyme disease study by a prestigous hospital and have had preliminary blood work and a CT scan done of my brain. This week they will have me see a neurologist and will do a spinal tap to see if the infection is in my central nervous system. Then they will do an MRI of my brain and of my spine to see what is causing the pain in my side.If it is in my central nervous system then they will begin a regime of intravenious antibiotics.
All in all, I feel fortunate that I was finally able to be diagnosed and get treatment as many patients never are able to do.
As more development takes place and we are closer and closer to wildlife, deer in particular, many more people will be exposed to this disease. Public education is a neccessity as is educating doctors to be on the lookout for it. Certainly a Lyme titer test with a Western Blot is less expensive than tests and treatments for the many illnesses that it mimics.

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3 Replies:

  • Doctors are not on the lookout for Lyme disease in patients. It is a difficult diagnosis to make as it mimics many other illnesses. There are many excellent sources about Lyme disease on the internet but of course , you must first be aware of the symptoms of Lyme disease to research it, if you think that you may have it. I awoke with a burning pain, redness and swelling in my lymph node in my pelvic area on Memorial Day. A call to the doctor's answering and a visit to the doctor the next day both brought the same diagnosis, An ingrown hair. s, I could see what looked like 2 tiny white marks. The doctor put me on an antibiotic, but dubious and sure that it was some sort of insect bite, I begin putting my symptoms online. Blood red area, Pain and swollen pelvic lymph node, fatigue,chills, a cough that became bronochial . No Match.I checked out all kinds of spiders,ticks, but because I did not have a "Bulls Eye Rash" Lyme disease never came up. I returned to the doctors 6 days later as the rash was spreading. She discontinued the antibiotic, thinking that it was the cause of the rash.I also had developed a female infection from the antibiotic and she advised me to purchase over the counter medication. 5 days later I returned as the rash had now spread forming a triangle- straight up the middle of my pelvic area, out to my hip and down my inner thigh. She placed me on Leviquin, another antibiotic. I finally got an apt with a GYN who prescribed 2 pills to clear up the infection, but had not the slightest interest in my other symptoms. Finally 2 weeks later, I inquired of a woman whom I knew had been bitten by some sort of insect. Her advice was to go see a doctor for infectious diseases, which I promptly did. She did blood tests, which the lab messed up so I had to return the following week for repeat tests. She did a sedemation test , a tick titer test with a Western Blot, and blood work for other tick borne illnesses. THe next week the Lyme test came back positive and she placed me on Doxycycline. In the meantime my GP had sent me to a surgeon, who wanted to biopsy the lymph node. Fortunately, he decided to wait for the result of the Lyme test so further intervention was unnecessary. By the time I started the antibiotics, I was already experiencing leg muscle pain, arm muscle pain and shoulder pain and had several days of pain in the sides of my neck and the base of my skull. Several days later, pain hit in my jaw and back at the same time. The jaw pain locked up my jaws so I was unable to chew for 7 days. The pain in the side of my back remains and I have been taken pain medication.The pain is always present, but at times hits with such intensity. ( The silver lining is that I have lost about 12 pounds, but this is not the way to do it) Until the last several days I have felt like a big truck ran me over. Never have I had such fatigue . I am awaiting results of an abdominal CT scan. I am fortunate that I also got into a Lyme disease study by a prestigous hospital and have had preliminary blood work and a CT scan done of my brain. This week they will have me see a neurologist and will do a spinal tap to see if the infection is in my central nervous system. Then they will do an MRI of my brain and of my spine to see what is causing the pain in my side.If it is in my central nervous system then they will begin a regime of intravenious antibiotics. All in all, I feel fortunate that I was finally able to be diagnosed and get treatment as many patients never are able to do. As more development takes place and we are closer and closer to wildlife, deer in particular, many more people will be exposed to this disease. Public education is a neccessity as is educating doctors to be on the lookout for it. Certainly a Lyme titer test with a Western Blot is less expensive than tests and treatments for the many illnesses that it mimics.this is the third time i have gotten this and to be frank i am sick of it!! please tell me how you got into the study thank you
    Anonymous 42789 Replies Flag this Response
  • My husband (35) has been sick since May 4. He didn't have a visible tick bite (had one over a year ago though...) he has had a high fever on and off, shaking chills, in May severe muscle pain, and now a dry cough of 6 weeks...doctors ruled out Lyme when the test (not sure which one) came back negative (AND he didn't seem to respond to 3 weeks on doxycycline).Do you think it is worth pursuing a test like you mention?
    Anonymous 42789 Replies
    • August 18, 2006
    • 06:35 PM
    • 0
    Flag this Response
  • False negatives are very common with the Lyme disease test, I would still be concerned about the possibility of Lyme, it can also be dormant for a long time, when something else weakens the immune system then it can become active.
    Anonymous 42789 Replies Flag this Response
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