CONFUSED AND NEED ANSWERS

Discussion in 'Lyme Disease Archives' started by LucysGirl, Jul 31, 2007.

  1. LucysGirl

    LucysGirl New Member

    I am new here!!! And I don't know whether I have Lyme Disease or not???? I have been sick for the past five years and still with no diagnosis - just a lot of really strange symptoms. I had blood work done through Igenex last September and on the one test it came back with three indeterminate bands and on the other one it came back with two indeterminate bands. I just recently (July 11th) had a spinal tap done. The lyme was negative, but it did show obligenal (spelling???!!) bands. I have six of these bands in my spinal fluid which my doctor says is usually indicative of MS, but I don't have any of the other "markers" to support MS (my MRIs are without lesions, my VER was "probably" normal and my ENG showed just a slight delay in the one leg muscle). I AM SO CONFUSED and FEEL SO SICK.
    Can someone PLEASE tell me if EXTREME head pressure and EXTREME diziness (to the point of almost falling over or passing out). Pressure changes inside head going from standing to sitting and vice versa and head noises and burning sensations and "fluid feeling" in head and ears (even having your ears wet), ears feeling full and ringing, plus difficulty walking and muscle twitching and EXTREME vision problems. Difficulty lying down - feeling as if you are falling even while lying down and so much more .... are these symptoms of Lyme Disease?????
    Sorry for all the questions - but I NEED HELP. I am not sure what to do next. The doctor is waiting for some more test results to come back on the spinal fluid ... but I think that he FINALLY believes that there is a problems because of these bands showing up in my spinal fluid because up until now I think that he thought I was crazy.
    I would GREATLY APPRECIATE anyone's input especially regarding the symptoms and the bands in the spinal fluid.
    Thank you so much for listening to me "go on and on"!!
    Please overlook my typos - my vision is so messed up!!
  2. mollystwin

    mollystwin New Member

    I am so sorry you are going through all this!!!

    Many of your symptoms are lyme symptoms. The ones I have are: Head pressure, ears full and ringing, muscle twitching, vision problems ( not severe ). I also have many others.

    There are many problems with lyme testing, many false negative. Have you ever had a tick bite or a bulls eye rash? Do you have high tick exposure?

    I don't even remember my tick bite, but I do have a positive Igenex western blot.

    I hope your doctor gets you some answers soon. Lots of people with lyme get misdiagnosed with MS. I would suggest not to take any steroids until you are certain you do not have lyme disease because steroids make lyme much worse!!

    Good luck to you!!!
  3. munch1958

    munch1958 Member

    I think you mean oligoclonal IgG bands bands. 90% of MS patients have them in their spinal fluid. I have no idea of non-MS persons have them too. Of course many MS patients have been misdiagnosed as having MS when they really have Lyme disease. Have the rest of your test results come in?

    Because my hemocrit was high and I had severe head pressure I was sent to a hematologist/oncologist. I ended up having 4 phlebotomies to bring down my hemocrit. They said I had too many red blood cells or PV, polycythemia vera (a rare blood cancer). This made my infectious soup go nuts!

    Then I had a bone marrow biopsy which was very painful. I refuse to do the spinal tap or lumbar puncture even though I have white matter lesions and sarcoidosis. The BMB was abnormal and the PV didn't behave like they expected. For now I'm just being watched. No more blood draining.

    Lyme is called the great imititator for a reason. Those spirochetes can weave and bob their way anywhere they want. They like to snack on brain, joints with cartilage, the heart, and the eye. Nothing really important.

    The stiff neck, migraines and fibro that I have are the worst. I have tons of pillows but can never get comfortable.

    Please keep us posted! You might want to look into the roadback.org for info about long term abx therapy.
  4. monicaz49

    monicaz49 New Member

    Looks like you and I are in a very similar boat.
    My doc says i have classic CFS and Fibro. Ive tested 3 times at Kaiser for lyme, all negative.

    However, i tested at the notorious Igenex lab and got a positive and a confirming diagnosis by a lyme literate doctore. So supposedly its the lyme causing my 25+ symptoms.

    At this moment i have head pressure that you would not believe. Its very debilitating and hard to describe. I have balance probs, temperature control probs, exhaustion, body pain, anxiety/irritability, numbness, stomach problems, vision fluctuation, i can go on and on.
    My neuro even suspected MS...but i have a clean MRI.

    I have not done a tap yet...although im thinkin about it.
    I did a trial run of antibiotics w/ no changes and unfortunately had to stop cause my liver levels were going high!

    I am stuck at this point. There are no clear answers for either CFS or lyme. Its unfortunate. Hang in there
  5. mollystwin

    mollystwin New Member

    monicaz49,

    Your sypmtoms are lyme symtoms plus a postive igenex. I would conclude lyme and agree with the llmd.

    Did you have a CD57 test? Mine was very low and convinced me that I had lyme. I'm now in treatment and am hopeful for recovery.