Negative Igenex questions

Discussion in 'Lyme Disease Archives' started by Missizzy, Aug 13, 2008.

  1. Missizzy

    Missizzy New Member

    Hello everyone--I primarily post over on the FM/ME board but I have a question for you guys. I've had my Igenex test sent to me and everything says negative. I know that it's still possible to have a false negative, however.

    What I'd like to know is if it is advised for me to drop the issue of Lyme. My onset was sudden vertigo and hearing loss (40% in one ear) followed by four years of unrelenting fatigue, tremor, slurred speech, cognitive problems, buzzes, zaps, myoclonus, and severe ataxia. I am pretty much bedbound with only an occasional outing in my wheelchair. I have an extremely sensitive startle reflex and can tolerate only soft sounds. I have never had a single illness since my onset nor have I had any joint pain, swollen glands or flu like sensations. I take only one drug, Klonopin, for myoclonus and neuroexcitability.

    I've been to the Mayo Clinic (a major waste of time and money) and to four neuros in Oregon. I've had the whole work-up of MRIs (head and spine), spinal tap, SPECT, brain stem testing, caloric testing, vestibular testing--twice. The best guess is that I have some sort of atypical MS or cerebellar ataxia.

    The only thing that makes me worry about Lyme is that I lived in Texas for 14 years and have bitten by ticks hundreds of times. The other odd fact is that all three of my biological sons developed bipolar at age 28 and one of those sons also developed MS at age 22. One bio granddaughter was diagnosed with bipolar and autism (she's 8). We have no family history of bipolar which makes me wonder about the comments I've heard about congenital Lyme.

    So--sudden onset of symtpoms (of about 30 seconds), no pain, no flu like stuff. Should I still keep Lyme "on the table" or start looking elsewhere? I'd really appreciate your advice. Also, I'd love to hear from anyone diagnosed with Lyme who does have similar symptoms to me.

    Thanks so much!

    Missizzy
    [This Message was Edited on 08/13/2008]
  2. bunnyfluff

    bunnyfluff Member

    Can you please post your Igenex results???


    Bunny
  3. Missizzy

    Missizzy New Member

    This is from a fax of a fuzzy fax but I'll do my best.

    There's two sections--IgM and IgG--but both have the same band numbers:

    18
    22
    23-25
    28
    30
    31
    34
    39
    41
    45
    58
    66
    73
    82 (or 83)-93

    Every number has kDa after it and two minuses. It is marked in capitals with the word NEGATIVE under each section.

    Does this make sense?

    Missizzy
  4. redhummingbird

    redhummingbird New Member

    Your symptoms plus the tick bites sound highly suspicious for lyme. Amazingly so.

    Have you thought about seeing an LLMD (lyme literate doctor)?

    These doctors understand all the ins and outs of lyme and can diagnose based on clinical symptoms.

    Some people's immune systems are so fried that they can't "see" the lyme so a test can be falsely negative.

    How do you respond to antibiotics?
  5. bunnyfluff

    bunnyfluff Member

    Geez~ I really thought with your past exposure you would get at least ONE ++ thingy!

    Man, I don't know. Have you been tested for all 4 pathogenic mycoplasmas??? They are also thought to cause MS-like symptoms.

    Oddly enough, either will respond to Abx. They are starting to treat MS with Abx, just like Lyme. Might be worth a try just to see how you react.


    Bunny


    P.S. I'll try to do some research on that.
  6. victoria

    victoria New Member

    I would go to an LLMD and let him/her look at your whole clinical picture. There are many other infections besides lyme that ticks transmit, and the tests for those are way less reliable. I'm not sure I'd even get tested unless you need it for insurance purposes, but, it seems that insurance companies rely on unreliable results...

    The iGenex WB only has a 70% reliability rate, and that's the best any lab can do with Lyme... the reliability rates for the numerous co-infections are more like 40% +/- reliable.... and many possibilities from bartonella, babesia, mycoplasma, etc.

    That's why the CDC even says on its page for Lyme and co-infections that it is the clinical picture that counts...

    So, likely, an LLMD would give you a trial on specific abx to see what happens (like, if you herx), based on your symptoms... which is why finding a really good LLMD is really important, ie, one who has seen many pts.

    Even tho my son was twice positive to the CDC's 'tracking/surveillance standards' for lyme, it became apparent he also had babesia and bartonella, altho those tests were never ever positive.

    He will be going back in a few months for re-evaluation for other co-infections, including viral, as treatment has only taken him so far now.

    He also recently came up high on several heavy metals, so in meantime is chelating, and we hope that will relieve him of some/most/all his cognitive symptoms, as they've been the toughest for him to get rid of. His doc wants him to take some time off after chelating to see where he's at.

    Hope that helps to realize how tough it is to really pin these bugs down.... don't give up!

    all the best,
    Victoria

  7. hopeful4

    hopeful4 New Member

    Hi Missizzy,

    I think your best bet is to see a very experienced LLMD. The lyme diagnosis is clinical, and only a knowledgeable doc can do the diagnosing. A test alone is not diagnositc.

    Since you say you've been bitten by ticks hundreds of times, you certainly have been exposed to some type of tick-borne infection(s). Additionally, the illnesses of your children and grandchild are highly suspicious.

    Wishing you the best,
    Hopeful4
  8. frango2

    frango2 New Member

    Southern Tick Associated Rash Illness.

    How is this different from Lyme? It isn't, it is a Sprichoete( they have seen it with dark field microscopy), but it isn't Borrelia burgdorferi.

    Read up about Masters Disease.

    You sound just like me. I test positive only for Lyme, but my LLMD feels that I have Bartonella and Babesia also.

    I had over 50 symptoms two years ago. Now I am down to about a dozen.

    Your hearing loss and vertigo sounds like Meniere's. One of the main causes of Meniere's is spirochetal illness. They list Syphilis, but obviously Lyme is a spirochete and can cause these symptoms.

    Do you know of any LLMD's near you? I would definitely find one.

    I hope you are feeling better soon.