Lyme Disease~anyone have it?

  1. I have had some strange symptoms lately, all pointing to Lyme Disease. I live in the NE and could have only been exposed a couple of times this summer while out hiking, but I guess that's all it takes. I had tons of DEET/Deep Woods Off on, but you never know as I live in a high risk area for lyme/deer ticks. I went to ER w/neck pain, numbness/tingling/pain/cold in my extremities (forearms, hands, calves and feet), dizziness and ringing in my ears, right eye twitching and major fatigue. Bloodwork came back fine but was told to get a lyme and thyroid test. Went to primary who ran a western blot and thyroid, both of which came back negative. My symptoms aren't getting any better so I'm really concerned as if it's lyme, you can't let it go or it can become chronic - it's treated w/antibiotics for a lengthy period of time.

    I was wondering if anyone here has lyme or knows someone that does and how I could get a definitive diagnosis??? I read on the internet that so many people's blots come back negative when in fact they have lyme - I guess the labs only test for certain bands :s

    Any advice or help would be much appreciated.
     
  2. Oh my gosh! That sounds so scarry! I dont have lyme disease or know anyone who does, but please stay on the docters to find out what is going on..... be strong you'll be o.k.
     
  3. Kimmie it's VERY scary and of course all I've been doing is reading on the internet, which scared me even MORE, hearing about misdiagnoses, chronic illness resulting :sad: Thanks so much for your kind thoughts.

    How are *you* doing more importantly? PM me when you get a chance!
     
  4. Maybe you should get a second opinion. Are they looking into it more? Do they have any ideas on what else could be causing this?

    I hope you can get some answers soon.
     
  5. I'm working on finding a lyme doctor locally or at least someone that will work with me more, just to make sure. I am also making an appt w/a neurologist.
     
  6. Unfortunately it is definitely true that even someone with Lymes Disease can have a negative reading on a blood test. Sometimes doctors treat the patient for Lymes Disease anyway based on the symptoms. I think they give super-strong antibiotics. If I recall correctly, the novelist Amy Tan suffered for a long time before anyone detected her Lymes Disease.

    Could you ask for the treatment anyway? Even though your blood work is not definitive? Living in Maryland, we are crawling with ticks and I hear stories like yours all the time. I hope you recover soon!
     
  7. I found a lyme board and asked some questions there...I am going to have my bloodwork redone and sent to a lab that specifically tests for lyme for a definitive diagnosis. I asked my primary for antibiotics but since he doesn't believe I have lyme, he won't prescribe them. He's in the dark ages about the symptoms and the western blot - all the research I've done shows I DO have the symptoms, and many of them and that western blot can be negative just like you said. I pray it isn't positive but I guess I'll just have to wait and see!
     
  8. I could write a book about this. I got Lyme disease over 20 years ago, before anyone knew anything at all about it. I suffered for at least 5 years with arthritis that progressed to almost all of the joints in my body and an eye disease. I was about 14 -15 when this started, taken to doctors in NY, NJ and MASS over the years to try and figure out what it was. I was too old to have juvenile arthritis, and too young for the other kind. Didn't make sense to anyone, and none of the specialists knew to test for it. I'm not sure if the test even existed back then. I had 2 knee operations, and was put on anti-inflammatory medications, steriods, gold injections...nothing worked.

    When I was in college I went to a new doctor (because I was in a different state) who did a new set of blood tests on me. At this point the Lyme test had become a common test for Rhuematologists to do on new patients. Turns out that's what I had. The arthritis and the eye disease were SYMPTOMS! I was immediately given oral anti-biotics, but that didn't work. I was then given them intravenously - 2x a day for 2 weeks. A nurse came to my house to do it so I didn't have to go to the hospital. I was able to go about my normal days other than that. I think the anti-biotic was called Tetracycline. My symptoms gradually went away after that.

    Make sure you get the test done. Good luck, and I hope whatever you have gets cured soon!
     
  9. I could write a book about this. I got Lyme disease over 20 years ago, before anyone knew anything at all about it. I had gone to summer camp in PA. I suffered for at least 5 years with arthritis that progressed to almost all of the joints in my body and an eye disease. I was about 14 -15 when this started, taken to doctors in NY, NJ and MASS over the years to try and figure out what it was. I was too old to have juvenile arthritis, and too young for the other kind. Didn't make sense to anyone, and none of the specialists knew to test for it. I'm not sure if the test even existed back then. I had 2 knee operations, and was put on anti-inflammatory medications, steriods, gold injections...nothing worked.

    When I was in college I went to a new doctor (because I was in a different state) who did a new set of blood tests on me. At this point the Lyme test had become a common test for Rhuematologists to do on new patients. Turns out that's what I had. The arthritis and the eye disease were SYMPTOMS! I was immediately given oral anti-biotics, but that didn't work. I was then given them intravenously - 2x a day for 2 weeks. A nurse came to my house to do it so I didn't have to go to the hospital. I was able to go about my normal days other than that. I think the anti-biotic was called Tetracycline. My symptoms gradually went away after that.

    Make sure you get the test done. Good luck, and I hope whatever you have gets cured soon!
     
  10. My daughter had it and the tests didn't show that she had it for well over a year later. Her rheumatologist wouldn't give her antibiotics because the tests were negative. I made her go to an infectious disease doctor, who was bummed that it wasn't an "exotic" case of some sort, and he dismissed all her symptoms as well, and wouldn't give her antibiotics either. His tests also were negative.

    She was so bad that her husband had to feed her because she couldn't get her arms/hands to her mouth. Our son and I did an elaborate internet search, and we called a doctor cousin and pled with him to give her strong antibiotics anyway. He reluctingly did, because he hated to go against her doctor in her city, but he only gave her a month's supply - thinking her doctor would come around. She went to a *third doctor, who wouldn't give her antibiotics because of the "negative" either. My son ordered a 6 mos. supply from New Zealand at that point.

    She got better and better and it finally left for good, but until then we were all frantic. My advice would be to find a doctor who WILL GIVE YOU ANTIBIOTICS. We asked our cousin (doctor) what would it hurt to give them anyway? He replied that there wasn't any harm, really, except that she might need them later on when she really needed them. We thought she needed them NOW, and reminded him of the 30% false negative rate from a Lyme's test.

    Way later on, after all the symptoms had gone - thanks to the strong meds - she was getting a routine checkup and it finally showed she had had Lyme's Disease. Her doctor *then* gave her antibiotics. (He didn't know she had been taking them for months). It turned out that he was very ill at the time (terminal cancer), and he wasn't his usual self. The ID doctor was just a jerk. Ask a doctor, "What would it hurt to give me antibiotics JUST in case?" That stops them in their tracks if you have all the symptoms.

    Good luck!! If it will make you feel better, my daughter is 100% okay now. The eye twitching was the last symptom to disappear, but it did. Please, just keep going to doctors until you find one who will give you medicine. Don't worry about its hurting the original doctor(s) feelings. It is your life and your disease and this is not the time to worry about their feelings. Let me know if you need me to get the way to order them from New Zealand from my son. It does take about 6 wks. to 2 mos. for them to come though. Hugs to you and we'll be thinking about you. Let us know how you're doing, okay? :smile: Janis
     
  11. Thanks Rowan! I actually found a lyme board and ordered a specific blood test thru Igenex in CA that tests diagnostically for lyme bands, which is crucial. I was also able to get doxycycline ABX from a doctor locally who believes I could have lyme and said why not treat just in case? Thankfully! I haven't started them yet as I have a MRI tomorrow and Fri, plus I had a spinal tap this weekend as my headache was excruciating, I was afraid I had meningitis. Now my head is killing me due to the spinal tap headaches so I just can't win. Between the lyme diagnostic test and the MRI I should have a very good idea of what's going on. I found out that I don't have any type of meningitis. They are culturing my spinal fluid for MS and lyme, but the chances of lyme showing there is only about 35%. It's very scary how elusive the lyme bacteria actually is :sad: I pray I won't have it but won't know much until I receive the tests back.

    Do you recall what the ABX your daughter/son used? I got doxycycline 100mg 2x/day. Please feel free to PM me if you want! And thanks for your wonderful advice everyone.
     
  12. I know this sounds strange, but my dog and my son have had Lyme disease. My son got the obvious symptoms -- giant red circles on his body etc and the pediatrician treated him immediately. My puppy tested negative and we got every test in the world. He was literally crying in pain and I was crying right along side of him -- I thought he was dying. The vet decided to treat him for Lyme anyway, in desperation, he responded immediately and has been fine ever since.
    Please press for treatment.
     
  13. Okay, I just got my daughter on the phone, and that was what she took. (Doxycycline - twice a day) That's the "drug of choice" that is best for Lyme's. She said to tell you to take it with bland food on your stomach. (she ate crackers, for instance). You can't take it on a full stomach, but at the same time you have to not be hungry or it will make you sick at your stomach. You have to stay up 30 mins. after taking it. She said she would usually get sick at the morning medicine because she hadn't eaten enough, but not at night when she had. (Again...not on a FULL stomach right after eating, because the medicine won't work as well). She took it for 5 mos. She was okay after 4 mos., but her eye twitching wasn't over, so she continued until it was.

    Thank heavens you got a doctor who would perscribe that for you! As he said, "Why not?" You should be fine since you caught it as early as she did. I feel for you with the headaches. That seems to be common with this, as well. Oh, she also said to read all the directions for taking the Doxycycline as it tells you specifically how to take it for the optimum results.

    I started to PM all the above to you, but decided to put it here in case anybody else should ever have the same problem as you and need/want the info. Keep us up with how you're doing!!
     
  14. ^
    That actually happened to my dog about seven years ago. She was too young for a Lymes disease vaccine as she was just a few months old. She became lethargic and rapidly lost use of her leg muscles. She was in obvious extreme pain, yet her blood tests came up negative. We, too, thought she was dying and took her to an emergency, all-night vet at about 2 in the morning. She suspected Lymes disease, gave her antibiotics and pain medicine and within hours she was better.

    Good luck to you. I'm am glad to hear you received antibiotics and that the doctors are running additional tests. I have recently begun to realize what other people have always told me: you have to be pro-active when it comes to your own health. Some doctors are better diagnosticians than others.
     
  15. That was a good idea! My biggest fear in life is getting Lymes disease, b/c doctors don't always suspect it or treat it. Living in the country and being surrounded by a huge deer population just scares me to death.