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    Old 03-22-2007, 05:39 PM   #1
    smitho
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    neuro lyme test question

    hello. im thinking of getting tested for lyme at igenix. ive had several test in the past to rule out ms etc... ive been getting cold numb arms and legs.

    my question is. if i have neurolyme. do i have to get a lumbar puncure. or will blood tests do etc.surly lyme is every where in the body..
    ive already had a lumbar puncure done a year ago. nd my doctor does not reccomend having another because of risks..

    also which co infections cause numbness?

    thanks for your help!

     
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    Old 03-22-2007, 06:33 PM   #2
    ticker
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    Re: neuro lyme test question

    Hi smitho, welcome to the board!

    How long have you been sick? There is no completely reliable test for Lyme disease, and results can vary by lab. It is good you are aware that IgeneX is a good lab for testing. Spinal taps show Lyme in less than 5% of cases. I have never heard of a Lyme knowledgeable doctor ordering this to test for Lyme disease.

    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

    When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX also. 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. 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.

     
    Old 03-22-2007, 07:16 PM   #3
    smitho
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    Smile Re: neuro lyme test question

    hi ticker. thanks for your response..
    my symptoms started about 2 and a half years ago. the symptoms im getting is numb legs and arms, and my legs go cold sometimes. i also get muscle twitches over my body sometimes . and suffer with anxiety.. my symptoms only seem to come when i start moving my limbs. its strange..
    ive had tests done has long has my arm. only thing i really have not checked is lyme..
    i cam remember when i went on holiday to greece. kefalonia. very remote part. my girlfriend said "whats that bite". it was big, red, hot, but no pain.
    it did,nt look like bull eye rash ive seen. but was a bit out of the ordinary.
    my numbness came on about 6 months later.first symptom feeling numb round the mouth area. but i had no symptom between that time.. probably not connected...but you never know.
    my numbnes is getting worse and worse. its scary..

     
    Old 03-29-2007, 10:48 AM   #4
    smitho
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    Re: neuro lyme test question

    ive just made an appointment. to see a lyme specialist.in the uk..
    dr david owen. in cardiff , wales, ..im seeing him on monday.
    has anyone on this forum been to him. hes the only one i could find in the uk..
    ive heard hes good... he told me the tests are expensive. he sends to igenex.. anyone have an idea of the prices.. and what tests i should have done.. im sure he knows what tests i should have. but would like some advice..

    thanks!

    Last edited by smitho; 03-29-2007 at 10:53 AM.

     
    Old 03-29-2007, 01:01 PM   #5
    ticker
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    Re: neuro lyme test question

    Hi smitho. I am glad you will be seeing a Lyme doctor soon! I have heard that he is knowledgeable. The only other Lyme doctor name I have for the UK is Dr. Andrew Wright who runs a private clinic in Bolton called the Complete Fatigue Clinic.

    Make sure you tell him about your travels and about the bite you had. The tests are kind of expensive, but it is very important to be tested for Lyme and all the co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. IgeneX can test for all except Mycoplasma. Some Lyme doctors in the states use MDL in NJ for Mycoplasma testing. You may want to call the doctor's office to see what it is going to cost.

    Take a documented timeline of all your symptoms. You may want to write your questions down ahead of time so you don't forget them. Taking notes or bringing someone with you to the appointment can be helpful also. First appointments are usually pretty thorough.

    Good luck at your appointment! Let us know how it goes okay?

     
    Old 03-30-2007, 04:17 AM   #6
    ryebeach
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    Re: neuro lyme test question

    Quote:
    Originally Posted by smitho View Post
    ive just made an appointment. to see a lyme specialist.in the uk..
    dr david owen. in cardiff , wales, ..im seeing him on monday.
    has anyone on this forum been to him. hes the only one i could find in the uk..
    ive heard hes good... he told me the tests are expensive. he sends to igenex.. anyone have an idea of the prices.. and what tests i should have done.. im sure he knows what tests i should have. but would like some advice..

    thanks!
    Hi Smitho
    I also had the numgness in my arm tingling in my face and eye twithching early on in my lyme Never had the bullseye rash at all but knew of the tick because I removed it from under my armpit three weeks after planting trees on the side of my yard told the doctor about it never put me on anything went back for thrush in my throat fatigue and headaches you name it sore throat for over 8 months finally just happened on a Lyme Specialist and got tested by Igenexs and bingo positive for Lyme Went on oral meds for 4 months then the big part happened had a little stroke and knocked me right down to la la land Started on IV therapy Rocephin for four months plenty of supplements and with alot of Hope and Determination finally returned to work last week My family and friends were afraid for me to return to work but I knew it was good for my Mental Health and so far has worked out well There is treatment for this and you need to be proactive I have not pursued alot of expensive tests just a good Lyme Specialist with alot of understanding of my symptoms Could not even hardly speak and think for about a month very angry and alot of anxiety at first bad Herx reations for 5 months but well worth it to have my mind back Lots of daily supplements to which have helped alot never would have thought of taking a vitamin or pill other than advil before this LYme stuff If they put you on antibiotics make sure to take a probiotic so it doesn't do a job on your digestive tract Very important Keep at the doctors to find an answer I can get very expensive but worth all of it to get treated properly Good luck
    Ryebeach

     
    Old 04-05-2007, 02:23 PM   #7
    smitho
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    Smile Re: neuro lyme test question

    hello.
    well ive been to see dr owen.
    . and said that lyme disease is possible, i wrote out info explaining exactly what symptoms ive had since it all started. and the bite mark..
    but by my symptoms he thinks. that i probably have no co infections
    only burgdorferi..

    asked me if i would like to start some antibiotics. to try for 6 weeks.
    called CEFUROXIME. said he would probably have a good idea if i have lyme.after taking it for 6 weeks by my symptoms..
    or get tested at igenex.before starting antibiotic,because they can effect the test.. test he recomends is

    IGM WESTERN BLOT
    IGG WESTERN BLOT
    MULTI PLEX PCR (WHOLE BLOOD)

    can anyone give any advice on these tests..
    and the antibiotics he suggested. and what signs i should look out for when taking them?..

    thanks!

    Last edited by smitho; 04-05-2007 at 05:55 PM.

     
    Old 04-05-2007, 05:29 PM   #8
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    Re: neuro lyme test question

    Hi smitho. I am glad you saw the Lyme doctor. The IgeneX Western Blot IgM and IgG are definitely good tests to get. It would be good to get the PCR test also, but if you have to chose between them I would chose the Western Blot.

    I suggest having the blood drawn for the test first (since he prefers testing without treatment) and then starting the antibiotics.

    I believe the med is prescribed is also known as Ceftin. What dose is it? I would check the dose against Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses.

    Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

    Once you begin treatment, it is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

    Good luck!

     
    Old 04-05-2007, 06:13 PM   #9
    smitho
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    Re: neuro lyme test question

    hi ticker.
    im hoping to get all three tests done. but it's costing me about £700.
    i know there not 100%. but i need to at least try.
    yes your right the meds, are also called ceftin.

    i think he was going to put me on 500g.
    tablets.

    i need to get in contact with him if i want to start taking them..

    but i will wait till i have had the tests done..

    any know what the normal dosage is for this.. ive read they are normaly taken twice aday for lyme.

    Last edited by smitho; 04-06-2007 at 08:20 AM.

     
    Old 04-07-2007, 05:27 PM   #10
    smitho
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    Re: neuro lyme test question

    hi, im just wondering if it's ok to to have antibiotics for this long., if i may still have undiagnoised illness. such as ms..etc..
    anyone been in this situation. .

    i dont want to make things worse.

    thanks!

     
    Old 04-07-2007, 08:26 PM   #11
    ticker
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    Re: neuro lyme test question

    Hi smitho. Regarding the dose, I suggest checking it against the doses listed in Dr. Joseph Burrascano's September 2005 Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses.

    If you have Lyme disease, it should be treated. Make sure each of your doctors know what diseases you have.

     
    Old 04-08-2007, 01:52 AM   #12
    CantThinkStr8
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    Re: neuro lyme test question

    they tried to pin ms on me early on....becareful cuz if they do..then they'll put you on steriods which supress your immune system even further than it's already been compromised. Making you worse! Glad your getting/got the Igenex test. Ceftin is a good 2nd generation cephalosporin...though i've seen it used and prescribed in combination therapies more so lately than by itself. A few of my friends are on that with Biaxin and Hydroxycholoriquine.
    you might want to do a search on the forum or in general on this.

    take care and good luck

     
    Old 06-04-2007, 04:51 PM   #13
    smitho
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    tests sent today

    hello everyone.im back! hope everyone is ok!
    i had my blood drawn today.and is off to igenex.

    had the western blot tests done, and PCR. kinda scared, but it would be nice to know if i have it,.

    i noticed igenex recommends doing the western blot/PCR urine tests. if they come back clear.
    is this worth it? anyway, i suppose one step at a time!

    ANYWAY,LET YOU KNOW THE OUTCOME!

    PROB WONT KNOW FOR 3 WEEKS!

    TAKE CARE EVERYBODY!!!

     
    Old 06-04-2007, 04:58 PM   #14
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    Re: tests sent today

    Hi smitho. I am glad you are getting the tests done.

    Have you been on antibiotics?

    The urine test gives another possible way to detect Lyme. I think the Western Blot is the best test because it lists a series of numerical bands with a + - or IND after each one. Even if it is not positive by the CDC standards (which require several bands to be present) the results can be significant by which bands are positive. Some are specific for Lyme disease.

    I know it is hard waiting for results, but you are on your way!

     
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