Lyme test was negative but still feel like crap.

Discussion in 'Lyme Disease Archives' started by ckball, Jun 14, 2006.

  1. ckball

    ckball New Member

    After a two week wait, it came back negative. I see her tommorrow. I am going to ask for another test.

    I found the babsis (sorry can't remember exact name right now)symptom list and that was me. Can you have that infection and still have a negative result for lyme.

    I am so frustrated, I have been sick for almost 5 years, but not like the last month or two. I need answers. Thanks for any input. Carla
  2. victoria

    victoria New Member

    even the Western Blot (assuming that is the test you had done) is not very reliable really for Lyme - the tests for other common tick infections are even less reliable. Many people do not show up positive for Lyme, for instance, until they've been treated for a while.

    reposting to you also what I posted on another of your posts:

    hopefully the doctor will treat you based on clinical picture... if not I would suggest finding the closest LLMD you can and go there for a consultation.

    No test is 100%, and a huge reason for this with Lyme is because Lyme is pleomorphic - can change shape and go inside cells (even white blood cells and all tissue cells), plus can hide out in cyst form - co-infections are also 'stealth pathogens' and can hide out elsewhere than the bloodstream.

    Therefore it can be undetectable on blood tests even tho you're having symptoms.

    Hope this helps,
    Victoria


    [This Message was Edited on 06/14/2006]
  3. ckball

    ckball New Member

    and advice. I will not give up on finding out what is wrong. I can't stand being so sick without answers. Thanks again, Carla
  4. jarjar

    jarjar New Member

    For starters was it Igenex? Also did any bands come back positive or inconclusive?

    Jay
  5. ajp

    ajp New Member

    Carla,

    Lyme disease is a clinical diagnosis, which was how I was diagnosed. Are you seeing a LLMD? My LLMD does not rely on a test, in fact he said that they are so unreliable that he diagnoses by symptoms. So don't give up.

    I understand your frustration. I myself searched for years, only to be told it was stress, just fatigue, etc... etc... and finally fibro. But thanks to the board I did a lot of research and was sure it was Lyme. I never had a rash or remember a bite. But I was getting sicker, year after year.

    So now my Lyme is considered chronic. My LLMD said I have probably had Lyme for a long time. So I have a hard long road ahead of me. I am on my fifth week of antibiotics, have maybe had some very small improvements, but herxing a lot. ...which he said is to be expected after being sick so long.

    I do not doubt his diagnosis, it just made sense to me. My regular doctor, who I adore, did not know much about Lyme and really wouldn't even consider it, but I knew all those symptoms were connected somehow and the somehow was Lyme.

    It really makes a difference knowing what it is. Please don't give up. You are the best judge of how you feel.

    Please let us know how you are doing.

    Love Mindy
  6. housatonicman

    housatonicman New Member

    is through the Bowen Institute in FL. Do a search. And the above info by other posters is very relavant. Lymes can hide so well - it has successfully survived for 100 million years ! ! !

    There are progressive stages, with ALS and MS being late stages. It can also hide inside you for years and then express itself when it feels it is a good time to do that. And it can be very difficult to find, as Victoria said it can encyst itself very quickly - my understanding is within about 1 second.
  7. minimonkey

    minimonkey New Member

    All of the above advice is true -- and seronegative lyme does definitely exist (meaning you test negative for antibodies) -- in fact, many of the very sickest patients test negative on the Western Blot at first, because their bodies have stopped producing antibodies to the Bb long ago due to immune suppression and the fact that Lyme can very effectively evade the immune system. (Both the Elisa and the W.B. are antibody tests).

    It is theoretically possible to have Babesiosis without having Lyme, but in reality, almost everyone who has babs has Lyme also -- the test for Babs is even less reliable than the tests for Lyme (it only tests for 2 know strains of babs, whereas there are suspected to be about 100 strains of it), so it is really important to find a doctor who will diagnose and treat you based on the whole clinical picture, not just test results. Make SURE your testing is done by a reliable lab, too.

    A lot of people who tested negative at first for Lyme will test positive after a few weeks of antibiotics, because they start producing antibodies again.
  8. HppeandMe

    HppeandMe New Member

    Hi Carla you may want to check out my post that say "Is Anyone on Biacillin Injections" Check my last post there that says "I am so angry" and you may get some answers for yourself.

    I am your situation as well. Never having a Lyme test come back positive. I always doubt the diagnosis although I fit the description of symptoms to a T. Especially, Bab's. I have had four doctors tell me I have Lyme based on my symptoms and even still I doubt myself because I haven't had any postive test results to Lyme only positive tests to exposure to co-infections. All of my tests have come from Igenex as well. I've taken every test in their book.

    Anyway, good luck! Keep us posted. Where do you live? Perhaps someone who lives near you can give you a good LLMD.

    Hugs,
    Hope
  9. HppeandMe

    HppeandMe New Member

    Check out my posting that says "How Many Negative Tests Before you Say Enough is Enough".
  10. ckball

    ckball New Member

    How long do you have be on abx before herxing. I started Sat on Keflex. Was up half the nite Sun with diaherra. Also Sun eve I was sitting on the floor with my feet out in front of me and it felt like a sharp hot poker was being poked in my right hip. I let out a loud scream and feel back.

    I had to lay there for 10 minutes before I could roll over. My poor Missy was all over me, like mom are you ok?. I finally crawled over to the kitchen counter and got myself up. I live alone. The whirlpool helped that night but yesterday and today I have to be careful how I move or it spass like crazy. I take pain med and muscle relaxers but it's a tough one.

    As far as my tests, I'm pretty sure it was Lab Corp, My Dr does all thru them. I have been on Plaquinal for RA for 3 years, I have heard it can change test result for Lupus but I don't know about Lyme.

    I am still tired but the brain fog has lifted somewhat. Now my back hurts so bad I think it is time for another bath.

    Another day passed and nothing really accomplished, that is the part I hate so much. Sorry to ramble, thanks for your wishes-Carla
  11. victoria

    victoria New Member

    you are herxing... you are not wasting days, you are killing the nasty little critters inside you... but I know what you mean.

    Did your doctor suggest the possibility of weekly pulses with abx? (taking them M-F, then Sat-Sun off) This works well for my son usually.

    do hot baths help you? Just wondering, it does me a little bit, my son won't try it at all.

    all the best,
    Victoria
  12. ckball

    ckball New Member

    for 3 weeks and retest. I had been reading my breians out, well what I have left, lol so I know it won't be that easy.

    My Dr is getting me an appt with an infectious dse Dr. There are no LLMDs in my area. I'll go from there, plus more research. I, like many here, have so many multiple and crossover dds it is hard to figure out which one is causing all the problems.

    I'm still hoping it is stress related, I just went thru a major kit remodel, six weeks of people in my house everyday at 8 am. That is enough to make anyone crazy,lol.

    Needless to say, I got very overworked during all of this, all the trips shopping for everything was so hard. I love my new kitchen. I am a big DIY person and did put my countertops in and laid peel and stick on the floor.

    So i thought this was just a flare, once I got rest I would feel better. That was 2 months ago, still not really any better. I have difinetly been bitten least 10 times, but none were filled, attached no longer than overnight. I check my self several times a day.

    There I go again, ramblin on. I have a whirlpool and it does help, your son should give it a try. Carla