Thinking about getting tested for Lyme...

Discussion in 'Lyme Disease Archives' started by smadavid, Mar 2, 2008.

  1. smadavid

    smadavid New Member

    Hi everyone, I'm new here and really appreciate that there are so many taking the time to share their experiences and help each other out. I'm thinking that I should probably look into getting tested for Lyme Disease. For the past few years I've had symptoms (progressively getting worse) that I attributed to mild depression, or perhaps CFS:

    - Fatigue
    - Brain Fog
    - Headaches
    - Muscle Aches
    - Poor Balance (feels similar to mild intoxication)
    - Shakiness / Tremors / Twitches
    - Poor Circulation, Chills
    - Alternatively either insomia or getting plenty of sleep but still not feeling rested after waking.

    I hadn't connected these symptoms with Lyme disease until doing some reading over on the CFS board. About 4 years ago I was bitten by a tick while camping. The critter was on me for at least a day (I didn't notice until showering when I got home.) I removed it, and about a week later noticed a red ring around the spot. My doctor perscribed antibiotics; The ring went away, and haven't thought anything about it since.

    I've never been a high energy person and have had problems with Fatigue for as long as I can remember. But aside from that, all the other symptoms above have gradually developed within the last 2 - 3 years.

    If anyone has any insights, or similar experiences, I'd love to know about it. Thanks :)
    [This Message was Edited on 03/02/2008]
  2. smadavid

    smadavid New Member

    Thanks Blinkie, appreciate the kind message. I just posted over at lymenet, and got some helpful responses. It looks like finding a LLMD is the way to go, so that's the next step. I'll definitely check back here w/ the results :)
  3. mollystwin

    mollystwin New Member

    Hi there! Your symptoms, the tick bite and the ring around the spot indicate that you have lyme disease. I beleive any LLMD would diagnose lyme for you regarless of what testing would indicate.

    Per CDC lyme is not diagnosed with testing only, but is a clinical diagnosis. Your tick bite, rash and symptoms say you have lyme!

    I would recommend finding an LLMD right away. The longer you wait for treatment, the harder recovery can be.

    Good Luck!!
  4. zena01

    zena01 New Member

    Hi, yes please do get tested for lyme. (the following is just my opinion and what I did, but may not be the best route for you so please make up your own mind how to go about it)

    If you have a good regular MD that will work with you, go to and order a testing kit - you can do this through e-mail. (mine came in 3 or 4 days) They send you all the stuff for testing (tubes, etc) along with a FEDEX return mail packet. (when I first asked about it at the lab at my doctors office the lab tech did not know what/where IGeneX is or anything about it)

    Then take it in to your doctor, have him sign for the test (required) have your blood drawn at your office lab, and they will send it off. That way you get a western blot right off and your doctor doesn't have a chance to order an ELISA test which is mainly false negatives.

    Thats what I did. When my results came back positive for Lyme, then I found a Lyme doctor. My doctor did some research about lyme as he knew nothing about it and learned with the two treatment protocols that the infectious disease guy he was going to refer me to wouldn't be able tohelp me and told me that he didn't know who to send me to but that if I could find a Lyme doctor that he would write a referral for me so that insurance would follow. (which he did) There were no lyme doctors I could find in Oregon and mine is in the San Francisco area, I traveled from Lebanon Oregon to see him on 2/8/08 and am now in treatment, for Babesia first, then after 4/6 months treatment for that will start in on the Lyme.

    They told me that many people with fibro have lyme and that it is what triggered the fibro. They said that fibro is a real illness, a real diagnosis, but that "doctors must look for the underlying cause as very few have it as a "primary" illness." They determined I was infected at age 12 (I'm 47) I also understand that treatment for lyme will not make the fibro go away, that I will still have it but ya know, without the lyme it may be manageable enough for me to have my life back and work again. I'm also looking at 24 months of treatment before I start feeling better which was really bothering me at first, but at least now I'm fighting something, and have a chance -- also, I can't expect something I've had for 35 years to go away in a few weeks I guess.

    Good luck to you!
  5. mrdad

    mrdad New Member

    My experience is almost a "clone" of what you experienced,
    however, it occurred over thirty years ago in the Sierra
    when I lived there. My understanding is that the manifestation
    of the disease may lay dormant for years! Suggest that you
    get a Lyme test through Igenex Labs for the most reliable re-
    sults to date. I recently did the test and came up positive
    for "old Lyme" present. I'm on anti-biotics for 28 days then
    I'll take it from there. (?)(?)

    Best wishes,
  6. victoria

    victoria New Member

    a good LLMD is invaluable of course, hope you get a good one! I found my son's doc at the same site you have, it is wonderful to get personal unbiased reports on doctors!

    Please do come back and tell us what's going on, there is such a huge overlap with these 'stealth' bacterial infections, especially Lyme!

    all the best,

  7. smadavid

    smadavid New Member

    Just wanted to say thanks to everyone for their responses.

    When my doctor gave me the antibiotics originally, he said he was doing is as "a precaution" due to the unreliable nature of the tests. But I think you're right, 10 days just wasn't enough. So the next step is the Western Blot test... I'll discuss IGeneX with my doctor, and if he won't do the test, I'll head to an LLMD for it. A number of people on LymeNet have made suggestions, so it looks like I have some good options. We'll see how it comes out!

    Thankfully my symptoms aren't debilitating, so I'm still able to work (albeit at a slower and more frustrating pace... programming with brain fog can be challenging!). And actually I'm probably quite lucky in that I work with people who are knowledgable about health issues such as CFS/Fibro/Lyme (our company sells vitamins and nutritional supplements), so they understand what I'm dealing with. Actually one of my bosses has Fibro.

    Anyway, I'll be sure to share my experience... thanks again!

    Dave[This Message was Edited on 03/03/2008]
  8. Poppy2

    Poppy2 New Member

    I was diagnose with fibro, and suffering greatly, After reading messages from lymers, I found a lyme Doc and was diagnosed with lyme. I think everyone with fibro and CFS should be tested for Lyme. Thanks Poppy
  9. munch1958

    munch1958 Member

    I've read some articles on the web that ticks like to live in wood piles.

    Who knew that a nice cuddly campfire at night while roasting S'mores, not to mention sleeping on the ground in a tent, could steal your life away?

    Let's see....

    I was a Brownie then a Girl Scout;

    a Camp Fire Girl too;

    an avid bicyclist with a penchant for bicycle trails in the woods;

    a organic gardener before it became "IN";

    a cross country motorcylist;

    and a hiker.

    Let me at any trail off the beaten path and I was there.

    Did I wear pesticides? Protective clothing?

    NO, they made me sick. Hated the fragrance and the clammy way they made my skin feel as if I couldn't sweat.

    Did I do tick checks? NO -- because we don't get no Lyme in Illinois or the Midwest.

    Since I can't go back and change my last breath, the only thing I can do is educate others by telling my story and hope someone reads it and stops their kids from repeating my mistakes.
  10. ritarhoads

    ritarhoads New Member

    I am a nurse practitioner and have to young adult children with lyme. Even with my background it took me a while to realize what their symptoms added up to and get them tested. What is sad is that traditional testing is only correct 17=30% of the time depending on which study you read. Even sadder, most docs wont treat with a neg result from these inaccurate antibody tests. So.... I looked for a lab I felt I could trust a little more. Having to drive 3 hours for a doc who gave adequate treatment was daunting. I finally began treating lyme myself. The only lab I have confidence in for lyme testing is Igenex in California. They are willing to do a Western Blot without the notoriously neg antibody screen which save patients $250. So you need to have your health care practitioner order you the test. The WB only, with Igenex, is $245 and so my patients find it affordable. And, although I cannot offer you medical advice online, I would say that your symptoms sound like lyme to me and you should get tested.