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  • Here are my results - Please help me understand

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    Old 06-18-2004, 06:47 AM   #1
    rubydoo63
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    Here are my results - Please help me understand

    Hi All

    Here are my test results for Lyme Disease. I do not have any symptoms, but my C Reactive Protein has been very elevated for a while, so my doc is testing a few things.

    Here is my lyme test:

    B.Burgdorferi was tested at 10 different levels (i think)

    All were nonreactive except for one;

    B Burgdorferi 41 kd (IGG) was REACTIVE

    My AB IGM QL WB was negative

    Any ideas? These results sound confusing to me

    Does having 1 reactive and 9 nonreactive mean you have Lyme?

    Thanks.

    Last edited by rubydoo63; 06-18-2004 at 07:48 AM.

     
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    Old 06-18-2004, 03:42 PM   #2
    ticker
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    Re: Here are my results - Please help me understand

    Hi rubydoo63. Do you know what lab was used for your Lyme tests? No Lyme test is completely reliable, but when testing for Lyme it is best to use a Lyme reputable lab such as IgeneX in Palo Alto, CA.

    Was the test you had done the Western Blot? Band 41 on the western blot is a flagellin protein of all spirochetes (the type of bacteria Lyme is) and is often the first band to show up if someone has Lyme.

    You really need to have the testing done at a Lyme lab.

     
    Old 06-18-2004, 08:36 PM   #3
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    Re: Here are my results - Please help me understand

    Hi Ticker:

    Thank you for replying.

    I live in Maryland. My labs were done at Quest Diagnostics. It was the Western Blot, with 10 bands being tested. The only one that had a REACTIVE was band 41.

    Rudydoo..

     
    Old 06-19-2004, 06:48 AM   #4
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    Re: Here are my results - Please help me understand

    Rubydoo, from what I understand Quest is not a good lab for Lyme testing. I suggest that you get the testing done at a Lyme lab such as IgeneX.

    Did your results give each band a +, -, or +/- rating?

     
    Old 06-19-2004, 08:29 AM   #5
    rubydoo63
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    Re: Here are my results - Please help me understand

    No. there were not any ranges posted.

    Only the readout of Nonreactive or Reactive.

    I have an appt with my doctor on Monday. I was bit by a tick a few months ago, but since I never had a rash or really any problems, I didn't give it much thought.

    Thanks.

     
    Old 06-19-2004, 06:37 PM   #6
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    Re: Here are my results - Please help me understand

    Maybe your doctor would consider having the testing done at IgeneX?

     
    Old 06-22-2004, 01:09 PM   #7
    Komondor
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    Re: Here are my results - Please help me understand

    Hi Rubydoo63,
    Quest is not a reliable lab for testing tick borne diseases. Many have tested negative through Quest. I did twice. Listen to Ticker and have your blood sent to Igenex. Not that it matters but I live it Maryland too.
    Stacey

     
    Old 06-23-2004, 05:14 AM   #8
    rubydoo63
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    Re: Here are my results - Please help me understand

    Thanks.

    I go back to my doctor tonight. I will mention this to him.


    I am concerned that he will look at only one Reactive band and completly blow me off!

    Anyway.....thanks for the info....I'll let you know how it goes with my doc.

    Komondor...I live in Southern Maryland...what about you?

    Rubydoo

     
    Old 06-23-2004, 06:14 AM   #9
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    Re: Here are my results - Please help me understand

    Hi rubydoo63. Good luck at your appointment. Please do let me know how it goes.

    Last edited by ticker; 06-23-2004 at 06:15 AM.

     
    Old 06-23-2004, 07:58 AM   #10
    Komondor
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    Re: Here are my results - Please help me understand

    Hey Rubydoo63,
    We are neighbors as I live in Southern Maryland too (Charlotte Hall). Who is your doctor?
    Stacey

     
    Old 06-23-2004, 08:32 AM   #11
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    Re: Here are my results - Please help me understand

    I live in Indian Head - Charles County

    I currently go to Dr. Alex Leon in Waldorf. I really like him, I just don't know if he has any experience dealing with Lymes.

    Rubydoo...

     
    Old 06-23-2004, 09:35 AM   #12
    Komondor
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    Re: Here are my results - Please help me understand

    Dr. L brother (George) is supposed to be pretty knowledgable about Lyme however, I have heard that he is not so good with co-infections. I have heard good things about this doc other wise... and he will treat long term for Lyme.

    I know a gentleman in St. Marys that was a patient of Dr. G L's for a year being treated for Lyme. He was not getting better... By fluke he met a guy that recommended an LLMD in D.C. and this doctor diagnosed Babesiosis. Jimmy is doing wonderful now and has even returned to work. Babesioses must be treated first...

    From what I have heard Dr. L will make a clinical lyme diagnosis... and not rely on blood tests alone. Many of the Amish and Mennonites see Dr. G L for Lyme.

    I am not saying you are in bad hands but you should educate yourself about tick borne diseases... There are many sites online... Dr. L knows more about Lyme than the other idiots in the Southern Maryland area.

    The problem is if you have a co-infection you need to be treated for it. You will not get better unless all co-infections are addressed.

    I cannot believe they used Quest for your test... I almost sent my husband there for testing and I was told on the phone they use Mdlab (Medical Diagnostic Laboratories) which is one of the preferred labs for testing. I ended up sending my husband to my doc and he uses Igenex...

    I have heard many people love L and L although I hear the wait in that office is terrible. They also put up with a lot of crap from the medical professionals in our area because they believe in alternative medicine. I got into a debate with Dr. J over this.

    He was telling me that G L was suspended from local Hospital for giving vitamin B injections. Anyway he made it sound like Dr. L was a quack... I said who is to say that vit B injections do not help his patients... At least Dr. L thinks outside the box...

    Another doctor I talked to recommend L for treating Lyme but did it hush, hush. Long story but she did not want anyone to know she thought Dr L was the best bet for lyme in Southern Maryland...

    I remember when I called a local lab inquiring about a specific test that reads your white blood cell count the gentleman on the phone says to me "who ordered this test"... I told him my doctors name... and I went on to explain. He stops me in mid sentance and says yea I am familier with lyme as I used to work for Dr. L and he thinks everyone has lyme... so L does treat many but just keep the co-infections in mind...

    Please keep us posted and I hope you are feeling better very soon.
    Stacey

    Last edited by Komondor; 06-24-2004 at 08:47 PM.

     
    Old 06-23-2004, 10:12 AM   #13
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    Re: Here are my results - Please help me understand

    Thank you!!!

    Yes...the wait for Dr. Alex Leon is terrible...but he has been the only one to listen to me when it came to treating my thyroid problem. My previous endo doc was a real quack!

    Who was the LLMD in D.C.?

    This is all very new to me.

    As I said, I only had one back that came back as reactive - that was band 41. According the CDC, I am ok. If I don't feel like I am getting anywhere with Dr. Leon, then I may have to go to the doc in DC.

    I'm very confused.....I will let you know later how it goes!

    Thank you again..
    Rubydoo

     
    Old 06-23-2004, 10:21 AM   #14
    Komondor
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    Re: Here are my results - Please help me understand

    Hey rubydoo63,
    I know how you feel about a doc that finally listens...

    Unfortunately, Dr. S is not taking new patients right now. They are waiting until July to see if things die down but you may be able to get on the cancellation list. Let me know if you would like the information.

    You should read further on the CDC site as they state there is no test that is 100% accurate and testing should be used a back up not diagnosis.

    I have also heard the best time to get an appointment in Leons office is 1st appointment after lunch.
    Stacey

    Last edited by Komondor; 06-23-2004 at 03:03 PM.

     
    Old 07-02-2004, 05:55 AM   #15
    Johnpr
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    Re: Here are my results - Please help me understand

    Hello: We live in Mid Missouri. Saw your post - less than 50% get the classic bull's eye rash. Those who get the rash can consider themselves lucky (if anything about Lyme disease can be considered "lucky"). The other 50+% might spend years going from doctor to doctor as we did, in a desperate attempt to figure out our son's disabling fatigue. All told we spent over $50,000 and saw over 40 "so called" health care professionals. Our son had a grand total of four different diagnoses: 1) depression 2) CFS/Fibro 3) Addison's 4) Lyme. Needless to say, since it took four years to get the diagnosis of Lyme, our 18 yr. old son is in very bad shape. It is important to find a Lyme literate doctor who uses a laboratory such as IGENEX. There is another test called the Bowen test which is being used by a local Missouri doctor. It is not FDA approved. The cost can be deducted on your taxes. (Believe it is approx. $250) You can find out more about this by searching through Google.

    Our family has been hit hard by Lyme disease. Back in 1986 my husband suffered almost complete paralysis when he was diagnosed with guillain barre syndrome. He had to be placed ona respirator to be kept alive, my 18 year old is extremely disabled, our dog died of Lyme last Fall, and I was infected in April while working in my flower bed. The very doctors who should be helping people with Lyme (infectious disease specialists) deny we have a problem in
    Missouri.

    The Lyme Assoc. of kansas City and several of us "lyme activists" are working with the Missouri Dept of health to raise awareness. They plan to do a full-blown educational campaign in 2005.

    I'm happy Ticker is so knowledgeable about Lyme. I'm certain he is helping many people who are dealing with this miserable illness....

    Terrified of Ticks (TOT)

     
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