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    Old 07-26-2003, 10:05 AM   #1
    SCAREDGIRLALWAYSDREAMING
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    Talking I have lymes disease please read


    I am totally amazed at the stories I am reading from all of you. All these years I thought I was losing my mind until I found you guys and realized I am not and there are others struggling with the same symptoms as I Here is my story.
    I am a 31 year old female who got really sick back in 1999. I developed severe dizziness to the point of not being able to stand, along with a severe headache, fast heart rate, extreme fatigue tremors, fever and chills. I went home and thought to myself I will sleep it I off I woke up the next day feeling worse then the day before I felt as if I was losing my mind and had no control over myself. after a few days of just sleeping 24 hours a day, I thought I should really go see my DR. cause my symptoms are gettig worse, so I did I wa mis diagnosed with food poising which i knew I didn't have and was sent home. A few days later I began to feel as if I was on my death bed just waiting to die. my symptoms are getting worse at this point and my whole body was aches,
    I still couldn't stand without the room spinning out of control and my head hurt so bad I couldn't open my eyes, the weakness was unbearable, I went back to the Dr. and was told I had a ear infection. I went home again frustrated and hopeless. Then after another few weeks of no change I demanded a blood test, and I was tested positive for ANTIBODIES TO B.BURGDORFERI. I asked my Dr. what this means and i was told I had lymes disease. I said lymes disease another mis diagnosis. I never had a rash or a tick for that matter. I started to think and I remember a few months prior I was in an area where there were alot of deers, althought still I Never had A rash or found a tick how could this be. I went home took the doxycyclne and didn't move from bed for a month. 2 months later retested and now my counts were highter, so we treated again oral for another month. this went on for about 6 months treating on and off with oral treatment. I stayed in bed about a year not being able to move I was told I CFS along with the lymes. Time had passed and I started to feel alittle stronger yet all the symptoms were still present. I saw cardiologist, blood specialist, lymes specialist, ENT, specialist, and at this point they all took my bank account and helped me in No way at all! I asked for a spinal tap or MRI and was told it wasn't important to have cause I have been already treated with antibiotics. BUT MY SYMPTOMS ARE still with me isn't anyone hearing me.
    at this point I am frustrated and still till this day live my life with these horrible symptoms, joint pain, dizziness, heart rate problems, tremors, headaches. severe tierdness, pins and needle sensations in my head and down my arms, anxiety/ panic attacks ,stiffness in my musles, brain fog you name it I have It.
    I don't where to go with this anymore or how to live with these symptoms I don't feel like my life is being lived to the fullest, I am living a life that is no longer my own and I would DO ANYTHING TO GET MY LIFE BACK!
    IF anyone out there has any kind of suggestions or treatments that has helped them in anyway PLEASE let me know I would be so grateful for any kind of advice or if anyone can tell me if they have had the same symptoms as me. I was wondering about alternative medicine and if anyone has tried it. I am sorry for the long post but it has been a loooong few years! Thank you for listening and any advice.
    hopeless & frustrated
    Scaredgirl

     
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    Old 07-26-2003, 05:15 PM   #2
    ticker
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    Scaredgirl many people are bitten without knowing it. Ticks are tiny and they inject a numbing agent so you cannot feel them crawling on you. Only about 50% of people with Lyme ever get a rash.

    It sounds like you may not have been treated aggressively enough or long enough initially. You need to be evaulated by a Lyme doctor and also be tested for the co-infections that ticks can transmit. Many people who have Lyme are co-infected.



     
    Old 07-26-2003, 05:51 PM   #3
    PA2LA
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    I feel your pain. I have been struggling on and off with this disease myself. I was diagnosed in '89 and since then, everything is a blur. My doctors often want to know when I first started noticing symptoms and I have to make up answers because my memory is so shot. I have taken so many courses of antibiotics in the last 14 years that it has probably kept the Lymes symptoms at bay. At the same time, never enough to give me releif for long enough. I too would give anything to feel normal again. The joint pain is so bad that I have to take vicodin. Hopefully, my current "relapse" will go away soon and I will, at least, not have so much pain. The fatigue is never-ending though. That is the worst part about it.

    I actually moved from Pennsylvania over a year ago, to the west coast. The warmer climate does help but the doctors out here are hell bent on diagnosing me with Lupus. Ticker and another person who posts here, encouraged me to find a Lymes literate MD and I actually used the dr. that they recommended. I don't have the test results back for the co-infections, but hopefully I wil have some answers soon.

    I am going to be 29 next month and it just hit me that I have spent half of my life with this. I am getting married soon and I have a wonderful and supportive man who spends countless hours researching treatment and doctors. That factor alone has made a world of difference to me and if I didn't have him and an amazing family, I might just lay around and wait to die. I have found that the best way to handle all of this is to take full advantage of the days that you feel good. Do as much as you can do and have as much fun as you can before you get too tired! Rest when you need to and try to eliminate the most intense stresses in your life. That is easier said then done, but can be just as crucial to your wellness as any antibiotic!

    As far as vitamins and herbal concoctions, it really depends on the manufacturer and your body's ability to assimilate the active ingredients. Since the FDA can't monitor all that's out there, some batches of vitamins or herbs have different levels and strengths of active ingredients. Therefore, you could try one bottle of pycnogenol for your joints and feel fantastic. The next one that you buy, may not be the same. I certainly don't discourage you from trying them, but you can spend a lot of money finding out what works best.

    Whatever you do, don't take any crap from doctors. If you think that you should get a second opinion, you get it. They don't always know what is best for YOU and they don't always have enough exposure to all ailments and tend to diagnose you with what they know about. It's called "practicing medicine". It is disburbing that they are not taking your quality of life into account. Network through this site to get some referrals for doctors. That is the only way that I got where I needed to be. You don't want to rule out other auto-immune disorders completly, but when you know that you have Lymes, it is the best place to start your quest.

    Best of luck to you, and I hope that you find a doctor who WORKS for you! Please keep us posted.


     
    Old 08-07-2003, 04:55 PM   #4
    katsmith61
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    Hi. I am a 42 year old that has lyme since the age of seven. I dealt with symtoms without knowing the cause until about 2 years ago when I was bitten again. I have never had such a headache. I thought my eyeballs would explode out of my head. I had to make my Dr. test me. He was totally surprised when I was right. I found a lyme Dr. in the Ft. Worth, TX area. I went through 9 months of antibiotics. Had every mycoplasmic infection you could have plus trench fever and cat scratch fever.
    NOW FOR THE GOOD NEWS!!!!
    I was tired of hurting and having the yeast infection from hell! There were days I could have gladly went to sleep and never woke up. I started doing research on natural products. I found one that I started using and it got rid of the yeast infection my lyme count started going down. My joint pain is gone. My mind is back. My whole family had lyme disease. The only one who wouldn't take the natural was my oldest. He was the only one who's lyme count never went down. I made him start taking it. We no longer have any of the symtoms of lyme. It's two Garden of Life products. One is called Primal Defense and the other is RM10. You can search the web and get it for a cheaper price. I don't know if I am allowed to tell you where I get it from.
    Hope this helps. If you have any questions I will be glad to help.
    To let you know. I feel wonderful. I jog about 2 miles aday. And work out with weights 3 days a week.
    Sorry it is so long

     
    Old 08-18-2003, 06:38 PM   #5
    jerseygrl24
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    Dear ScaredGirl::::Please read....

    I am so glad I stumbled upon your entry...You are describing myself to a tee....I have been struggling with those same exact symptoms for about 2 years...Here's what is weird though...The symptoms you described when you first got sick were exactly the same things I got about two years ago...I went to the doctor and I was diagnosed with mono...The thing is I have never felt the same since I was diagnosed with mono....I have the same symptoms that scare me...the pins and needle feeling in your head, my joints have started to hurt me, sometimes I just really feel like I'm out of it, my legs get numb easily sometimes and my arms tingle.....I really have to go to the doctor and get tested for this but I really am scared sometimes that I have something really serious....Just like you I was ready to tell the doctor to test me for everything possible and even scan my brain to make sure nothing is wrong with it....When I first got sick two years ago I also had that same feeling like I was going crazy, I cried for about 4 days and really thought I was going to have to go to a mental institution and leave my family....Well I really would love to talk to you...You can't believe how glad I am to finally find someone that understands and doesn't think your weird..

    [This message has been edited by jerseygrl24 (edited 08-18-2003).]

    [This message has been edited by moderator2 (edited 09-16-2003).]

     
    Old 09-01-2003, 07:54 PM   #6
    Beth C
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    Scaredgirl

    It sounds like you need the iv antibiotics. Dr's tend to use iv Rocephin when the lymes has started causing neurological symptoms. My neighbor and I both have Lyme. He's been on the iv Rocephin for 3 wks and his joint pain is gone. I hope to start it this thursday. Currently, I'm on the Doxy but since I still have joint pain, they may start the Rocephin iv. I hear the iv treatment works much better for late stage lyme. Ask your doctor about it. Make sure you tell him you're not better on the Doxy.

    Good luck to you!
    Beth

     
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