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  • Positive Lyme specific bands? Neg. diagnosis?

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    Old 09-16-2007, 08:27 PM   #1
    JP76
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    Positive Lyme specific bands? Neg. diagnosis?

    I will try to keep my post short and sweet, even though it is a long story! I am a married mother of two (10, 4) and I'm 31 years old. With over a decade of symptoms and visiting many different doctors, I finally received a diagnosis of fibromyalgia. (MS was ruled out through an MRI and by a neurologist) No doctor ever mentionedthe possibility of Lyme, but here are some of the symptoms I have have been dealing with over the years:

    fatigue
    anxiety and panic
    depression
    muscle pain (tender points and more)
    cracking, popping joints
    sore hips
    painful foot bones
    poor coordination
    raynaud's (soles of feet)
    irritable bladder/interstitial cystitis
    reflux
    dry/bloodshot eyes
    motion sickness
    heart palpitations, skipping beats
    sensitivity to light, odors
    irritable bowels
    many visual problems - episodes of nystagmus, blurred vision, drooping eyelids
    excessively mixing up letters while writing
    poor concentration and memory
    some weakness in arms and legs
    swollen neck nodes all the time
    headaches
    episode of facial numbness

    I am sure I left things out. Most of these, if not all, can be attributed to fibromyalgia. Recently, I realized though, that these symptoms followed a penny sized sore on the inside of my foot below my ankle over a decade ago. It wasn't a typical bullseye rash, but at the time I was very afraid of what it was. It took quite awhile to go away, but soon afterwards I became ill with flu-like symptoms and was taken to the hospital and was told I had a "virus."

    I finally recently had a Western Blot and was told I tested negative for Lyme, but was found to have a low white blood count. I was not feeling well at all when I had my blood taken, so I am pretty sure my counts would be related to fighting a virus and hopefully not something too serious.

    On my Lyme test, I tested positive on igg/igc bands 18, 23, and 66. On the igm I tested positive on band 39.

    - do you think it is likely I am positive?
    - could lead to a low white blood count?
    - could still have lyme and had two healthy pregnancies AND a normal MRI?
    - could the rash/sore I recall be related to lyme?
    - What should my next step be since I did not meet CDC criteria? Should I test at Igenex or just "demand" my primary doc to treat me?

    THANK YOU!
    JP

    Last edited by JP76; 09-17-2007 at 05:54 PM.

     
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    Old 09-16-2007, 08:59 PM   #2
    roro
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    I am sorry you are having so many symptoms and not feeling well. it sure does sound like lyme, but only an LLMD can tell you for sure.

    good luck "demanding" a non LLMD to treat you. I have gone to 50+ different doctors and specialists over about 12 years and just wasted a lot of money, time and energy. fibromyalgia is a set of symptoms and is usually caused by lyme, but could be something else. but its not a definitive diagnosis.

    find a good LLMD and have your children tested too if you think you may have gotten this before you were pregnant with them.

     
    Old 09-17-2007, 07:52 AM   #3
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    JP, you definately need to find and LLMD, your symptoms and history sound very much like Lyme. Only LLMD's know how to properly interpret Lyme tests, and even if you have your primary test you through IGenex he probably won't know how to interpret it. You can have CDC?IGenex neg. results and still have Lyme. My son and I do. and then even sometimes Primaries are so Lyme illiterate or don't want to deal with Lyme that they say you don't have Lyme even when you are CDC/IGeneX pos. (this is what happened to my husband) Ask the baord for a recommendation for an LLMD in your area. and definately have your children tested too. The could be infected and not show signs for years. good Luck, Sarah

     
    Old 09-17-2007, 05:49 PM   #4
    JP76
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    Thank you ALL so much for your info and help! I really appreciate it... I am eager to start treatment if I have lyme, but afraid to get treatment if for some reason I am not positive. Wouldn't want to get sicker! Thanks again

     
    Old 09-17-2007, 07:43 PM   #5
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    Hi JP76, welcome to the board!

    I am sorry you have been sick for so long. Below is a Lyme symptom list. You can have any combination of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Which lab did your Western Blot?

    Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. The Ehrlichiosis infections infect the white blood cells. Some people who have Ehrlichiosis have low white blood counts.

    Lyme disease can be passed through pregnancy and breastfeeding. If you think you had this when pregnant, your children should also be evaluated by a knowledgeable doctor.

    If you need a doctor recommendation, let us know.

    It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
    (2nd edition)" by Karen Vanderhoof-Forschner.

    I am going to post the Western Blot breakdown in a separate answer.

     
    Old 09-17-2007, 07:46 PM   #6
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    Hi JP. No Lyme test is completely reliable.

    Which lab did your Western Blot?

    Below is the breakdown of the Western Blot bands:

    9 cross-reactive for Borrellia
    12 specific for Bb
    18 unknown
    20 cross-reactive for Borrellia
    21 unknown
    22 specific for Bb, probably really the 23/25 band
    23-25 outer surface protein C (OspC), specific for Bb
    28 unknown
    30 unknown; probably an outer surface protein; common in European and
    one California strain
    31 outer surface protein A (OspA), specific for Bb
    34 outer surface protein B (OspB); specific for Bb
    35 specific for Bb
    37 specific for Bb
    38 cross-reactive for Bb
    39 is a major protein of Bb flagellin; specific for Bb
    41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
    45 cross-reactive for all Borellia (sometimes people with Lyme who have
    this band positive also have the co-infection Ehrlichiosis)
    50 cross-reactive for all Borrellia
    55 cross-reactive for all Borrellia
    57 cross-reactive for all Borrellia
    58 unknown but may be a heat-shock Bb protein
    60 cross reactive for all Borrellia
    66 cross-reactive for all Borrelia, common in all bacteria
    83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
    93 unknown, probably the same protein in band 83, just migrates differently in some patients

    The IgM tests for a more recent infection, the IgG a longer standing one.

    The CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive tests and list more bands on the Western Blot. Testing should be used as an aid in diagnosis not solely for diagnosis. A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses.

    Bands 23-25 and 39 are Lyme specific bands. I think your results combined with your symptoms are significant. I highly recommend that you see a Lyme doctor.

     
    Old 09-18-2007, 04:39 AM   #7
    JP76
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    Lab corp here in Maryland did my test.

    Thanks so much for your info!

     
    Old 09-18-2007, 06:37 AM   #8
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    Thanks again to all of you!

     
    Old 09-18-2007, 10:07 AM   #9
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    Hi JP76. There are some good Lyme doctors in MD. If you need recommendations, let us know.

     
    Old 09-19-2007, 12:13 PM   #10
    JP76
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    Re: Positive Lyme specific bands? Neg. diagnosis?

    Which lab did your Western Blot?



    Lab Corp here in MD. They are doing one more and then sending one to Igenex as well.

    Thanks!!

     
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