Finally a Lyme test

Discussion in 'Fibromyalgia Main Forum' started by vmiller, Jun 25, 2008.

  1. vmiller

    vmiller New Member

    I called and booked myself and appointment with the University of Missouri Center for Rheumatic Diseases in Columbia, MO. It was this morning. I saw a very nice and knowledgeable nurse practioner by the name of Deanne Davenport. She was very caring about my symptoms, and was very thorough in her exam. She spent an entire HOUR with me. She sent me for bloodwork *including a Lyme test*!!! and all I had to do to get the Lyme test was to mention it. She said she didn't think I had it, but she would gladly order the test. She also ordered very thorough x-rays of my knees, hips, and back. I'm supposed to go back and see her in 2-3 weeks. Her mother has had fibro for 10 years plus, and she is very understanding.

    I highly recommend anyone that is within driving distance at all to try this facility. It is an hour and a half one-way for me, but well worth the drive and the gas money.
  2. JohnThreeSixteen

    JohnThreeSixteen New Member

    I'm new to this (FMS) but I can see how a good Dr. is worth his/her weight in gold. Or gasoline! *snicker*
  3. bunnyfluff

    bunnyfluff Member

    Hopefully it's not just the worthless Elisa test.

    Let us know what happens. Good for you for asking!!!

  4. victoria

    victoria New Member

    As Bunny mentioned, I hope they've ordered the Western Blot especially thru IGenex..... you might want to browse the lyme board here, there's info on the testing etc...

    BTW, I went to school in Columbia for 2 years, way back further than I care to remember now lolol... I loved it there!

    all the best,

  5. Rafiki

    Rafiki New Member

    I have noticed that you are not alone and that a lot of people on Lyme sites (your 50% seems about right) test negative on all Lyme tests and have a clinical diagnosis.

    Since there is so much crossover in the clinical picture of ME, FM, Arthritis, to a lesser degree Depression, etc. and Lyme, and given that abx treatment seems to bring about improvement in many disorders including many well known auto-immune disorders, how does one really know what is being treated?

    I know you have an experienced doc. but there are many doc.s with as many years experience who would disagree with that Lyme disease can be diagnosed, with certainty, clinically.

    This is such a dilemma. I just wish that one of these conditions could be tested for with some kind of precision.

    I wish you great success with your treatment. ABX (long courses of Doxy) has helped me more than anything else.

    I wish us all some certainty in the future!

    Peace out,
  6. victoria

    victoria New Member

    A friend of mine's daughter has been basically home-schooled since the age of 10 due to CF/FM/-??- well nobody really knows what all is wrong with her but that's the working dx... She's now 16 or 17.

    She was given gamma globulin to help her immune system some months ago...

    well, very interestingly, after a while she had a 'new' blood test used by LabCorp (that isn't, as of yet, approved by the FDA), and now finds that she has EHRLICHIOSIS...

    this was missed on her previous tests (her mother has always thought she has 1 or more tick infections all along) --all because her immune system was finally strengthened enough to make antibiodies to Ehrlichiosis.

    I don't know if this test was also for Lyme or what, and I don't know the name of it, but will try to find out more about it. Current tests for Ehrlichiosis are NOT reliable at all, so it's hard to get a positive on one. Most doctors have to rely on clinical symptoms, just as with lyme and the other tick infections/stealth pathogens.

    Ehrlichiosis is of course a tick-born infection, and if one's bitten by a tick, one can have any number of --or-- combination of diseases, from lyme to mycoplasma, bartonella, babesia, ehrlichiosis, etc...

    IMHO, it appears that our immune systems can be so depressed that WE DO NOT MAKE ANTIBODIES TO BACTERIAL INFECTIONS, even tho they are present 'en masse' in our bodies -

    thus MANY who have been ill for a long time get no positives on these tests, since they are based on the body producing the antibodies. And more and more autoimmune diseases and other unexplained diseases (like atherosclerosis) are being linked to bacterias and viruses.

    So -- this is why even the CDC says that the diagnosis of lyme or any of these stealth pathogens SHOULD be made on the basis of 'clinical observation', NOT blood tests. This is why good LLMDs (Lyme-Literate doctors who are familiar with all the tick born infections) are invaluable.

    The friend's daughter has been able to go to regular school 1/2 time this past semester, happily, tho not sure if this is THE answer for her or what will be next as she gets treated...

    all the best,

    [This Message was Edited on 06/26/2008]
  7. Rafiki

    Rafiki New Member

    Thanks for this.

    Well, that makes sense. So, what skews the immune reaction?

    I have stealth infections -- micoplasma that most people can keep under control quite easily with their immune system but I can't. Also have reactivated EBV and HHV6. Most people can keep these common viruses under control, too.

    So, is the tick borne pathogen a a chicken or an egg? Or, a chicken laying an egg? Can we know? I can't yet wrap my brain around any way we can know.

    Peace out,
  8. victoria

    victoria New Member

    (let's see, adjusted for inflation, that's about $1 million or more now?)

    I'm not sure it matters? altho it'd be nice to know just for the theoretical part. I just think it all needs to be attacked, the body's immune system strengthened, etc.

    If you know you have mycoplasma, it could be very possible to have other ones that aren't showing up because your body isn't able to fight it right now. These things really know how to hide out... and yet proliferate in cycles... probably why so many of us cycle up and down as to how we feel. My son did that a lot. The one good thing is that what kills one bacteria often kills others...

    My problems originated from a year long bout with mono (that I now suspect was cytomegalovirus) complicated with hepatitis A and meningitis. Even more interestingly, about 2 weeks before I landed in my college infirmary, I'd been bitten by a tick while camping in the Ozarks. It was on my back, my roommate spotted it - I have no idea how long it'd been there, but at least a couple of days I think. (Talk about the ewwwwww factor - I'd never seen a tick before in my life.)

    I have not been tested for lyme, myco, etc... because with my son's illness it has been cost-prohibitive. But his symptoms were so close to mine initially, I felt like I was looking into a mirror; it's just that he became way more ill than me way more quickly. Again, I think it's due to genetic susceptibilities too.


    [This Message was Edited on 06/26/2008]
  9. EricaCFIDS

    EricaCFIDS New Member

    if you indeed have a tick borne pathogen, then unless you get rid of it or treat it, you will spiral downwards in health (reactivated viruses from a depressed immune system and more....)

    If you feel better on ABX then that should tell you something!

    All the best,
  10. Rafiki

    Rafiki New Member

    Our histories are similar except for the tick bite. I had long bout of mono. After EBV, I tested positive for Hep.

    I agree with you that abx, and treating any bacterial infection we can't control with immune response, is crucial to improvement if not recovery. I experienced a very long 85% remission - with some big crashes - for many years with the help of certain ABX, often long term.

    There is also the modulating effect certain ABX have on immune function. I really do feel as though we are on the cusp of some real progress.

    I continue to be treated with Doxycycline and, occasionally, Zithromax. I'm so foggy, is it Zithromax that's part of a Zpack.

    I do feel we are on the very cusp of increased understanding about this/these mysteries.

    All the best to you,
  11. tansy

    tansy New Member

    Discovery of Lyme Disease Bug Clone May Explain Disease Spread

    Benjamin Luft, M.D., Professor of Medicine, Stony Brook
    University Medical Center, and colleagues discovered that a certain clone of
    Borrelia burgdorferi, the spirochete that causes Lyme disease, appears to be
    the most common strain causing Lyme disease in North America and Europe, and
    may account for the increase in cases for the past 20 years.

    investigation and findings of the ospC-A clone are reported in the July 2008
    issue of Emerging Infectious Diseases, which is currently available on line
    According to Dr. Luft, Lyme disease is the most common vector-borne disease
    in the United States with more than 20,000 cases reported annually.

    While B.
    burgdorferi is the primary pathogen in the United States, clones of the
    pathogen are known to cause major disease. The ospC-A clone was one of the
    first strains ever identified.

    In “Wide Distribution of a High-Virulence Borrelia burgdorferi Clone in
    Europe and North America,” Dr. Luft and colleagues detail various methods of
    genetic testing of 68 B. burgdorferi isolates from Europe and North America.

    Based on the findings of their tests, the researchers concluded that the
    ospC-A clone dispersed rapidly and widely in the recent past and in both
    regions of the world.

    “I believe this discovery will make an important contribution since it
    identifies an identical and high virulence clone of Borrelia in both Europe
    and North America,” said Dr. Luft. “This may explain the recent spread of
    Lyme disease in North America.”

    The researchers report that the isolates of the clone were prevalent on both
    continents and uniform in DNA sequences, which suggests a recent
    trans-oceanic migration. More specifically, they explained: “The European
    and North American Populations of B. burgdorferi sensu stricto have diverged
    significantly because of genetic drift.

    Plasmid genes evolved independently
    and showed various effects of adaptive divergence and diversifying
    selection…genetic variation within the two continents contributed to most of
    the total sequence diversity, which suggests recent common ancestry,
    migration, or both, between the European and North American populations.”

    The research was funded partly by the Lyme Disease Association and the
    National Institutes of Health. Dr. Luft’s colleagues include: Wei-Gang Qui,
    Ph.D., and William D. McCaig, Hunter College of the City University of New
    York; John F. Bruno and Yun Xu of Stony Brook University; Ian Livey, Baxter
    Vaccine AG, Orth/Donau, Austria, and Martin M. Schriefer, of the Centers of
    Disease Control and Prevention, Fort Collins, Colorado.
  12. tulaloo

    tulaloo New Member

    I'm new to all this but I doubt my G.P would test me for these things. Just wondered if a naturapath would be the type of Dr. who would look for Lyme ect?
  13. victoria

    victoria New Member

    now this sounds like it could be supporting the suspicion that it IS bio-weaponized ... or at least been worked on by 'mankind'..... why am I not surprised, was gonna happen sooner or later even if by accident of nature or man.

    I also realize this could also happen in nature and run wild if humans etc were particularly susceptible, too....... maybe this is another 'slate-wiper' but slower than some of the plagues in the past.

    Any microbiologists out there care to weigh in????

    Tulaloo - a naturopath would not likely be ordering any blood tests for you, unless permitted to do so by the individual state or s/he works with a doctor willing to sign the orders. I've heard there are other ways some test for it, with some type of 'energy' machines, but no idea as to how valid it is.

    [This Message was Edited on 06/28/2008]
  14. tansy

    tansy New Member

    cases cannot be wholly attributed to over diagnosis. So if the LLMDs are not overdiagnosing lyme there has to be an explanation for the rise in the number of cases reported.

    Hi Kathy

    Thanks for that comment. You are one of many who understands how difficult it can be to contribute to topics here and provide info. If I ever feel it's too overwhelming I remind myself of the story of Lorenzo's Oil.

    tc, Tansy
  15. gapsych

    gapsych New Member

    When I was in the emergency room several weeks ago, a doctor came in on his own. He worked in a clinic in Northern MN. He is an infectious disease doctor. He came in to talk to me as he has worked especially with CFS. His story was fascinating. I think he said that about 40% of patients referred to him, actually had Lyme, EBV, ect.

    Unfortunately, we did not get to talk long enough as I wanted to ask him about the Lyme test.

    I have been tested but probably not IGNEX and my FM/CFS does not get better on AB's but his description of the impact of Lyme on people was horrific.

    I do not believe I have Lyme, but I think that all possible causes of our DD need to be explored.

    Take care, GA
  16. tansy

    tansy New Member


    Microbiologists at the University of Calgary have demonstrated the first direct visualization of the dissemination of Borrelia burgdorferi, the bacterium that causes Lyme disease. This real-time, three-dimensional look at spirochete dissemination in a living mammalian host.

    Pathogenic spirochetes are a group of bacteria that cause a number of emerging and re-emerging diseases worldwide, including syphilis, leptospirosis, relapsing fever, and Lyme disease. The mechanism by which they disseminate from the blood to target sites is unknown. Direct visualization of these bacteria may yield critical insight into resultant disease processes.

    The team therefore set out to directly observe these bacteria at the single-cell level in a living host, using an engineered fluorescent strain of B. burgdorferi as an example bacterium. Using conventional and spinning disk confocal microscopy, the investigators were able to track the movement of the bacteria and the interaction of the bacteria with the vascular wall in mice. They found that vascular escape is a multi-stage process and that spirochete movement appears to play an integral role in dissemination from the blood to target tissue sites.

    This use of high-resolution, 3D imaging to visualize the dissemination of a bacterial pathogen in vivo lays the groundwork for a better understanding of the mechanisms by which these and other bacteria disseminate throughout the body to cause disease.

    Journal reference:

    Moriarty TJ, Norman MU, Colarusso P, Bankhead T, Kubes P, et al. Real-Time High Resolution 3D Imaging of the Lyme Disease Spirochete Adhering to and Escaping from the Vasculature of a Living Host. PLoS Pathog, 4(6): e1000090 DOI: 10.1371/journal.ppat.1000090