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    Old 06-25-2006, 07:23 AM   #1
    moesciphish
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    Lyme testing, need info.

    I've had a vast array of symptoms now, and because of my potential for exposure at work, my doc is going to treat me for Lyme. We did a test through Labcorp, the titrate test (not sure which one this is) and it came up negative. But I've heard this is not a good indicator. My doc has put me on amoxicillin because I work outside most of the time and cannot possibly take the doxycycline. I guess my question is, I have reflux and the antibiotics I'm sure are going to mess with that, since I've heard the labcorp tests are notorious for false negatives, should I get an Igenex test done and how much do they cost? What tests should I get done and do insurance plans usually cover them?

     
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    Old 06-25-2006, 08:58 AM   #2
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    Re: Lyme testing, need info.

    Hi moesciphish, welcome to the board!

    When tick-borne illnesses are a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand these diseases and follow outdated treatment protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable of all and the one most doctors run first.

    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 in Palo Alto, CA. They use more sensitive testing. I do not think that IgeneX takes insurance, but many insurance companies will partially reimburse you for testing. You need to contact your company to see what they would reimburse.

    There are many different antibiotics that can be used to treat Lyme. It is important to know if you have co-infections to know which treatment is best. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective.

    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. 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.

    If you post where you are located, we can tell you of the closest Lyme doctors to you that we know of.

    Hang in there okay? Good help is available.

     
    Old 06-25-2006, 02:00 PM   #3
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    Re: Lyme testing, need info.

    Just an aside...you mentioned you have reflux. Something entirely natural that I use for reflux and to help keep my stomach, etc. healthy is acidophilus. You can buy the capsules over the counter at any drug store. They must be refrigerated after opening....it's worth a shot!

     
    Old 06-25-2006, 02:19 PM   #4
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    Re: Lyme testing, need info.

    Hi KelliD. You may want to consider buying the acidophilus that is refrigerated when you buy it, it may be a higher quality. Most healthfood stores have it.

     
    Old 06-25-2006, 05:22 PM   #5
    moesciphish
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    Re: Lyme testing, need info.

    Ok, thank you for the information and the welcome. I'd really like to get a test done to say "you have lyme" before I start a regiment of antibiotics though. Only because it will make my reflux much worse and I just don't like taking antibiotics in the first place. Does anyone have any monetary figures for the igenex tests? I eat alot of yogurt, with live cultures, but I might try it in pill form. I am in Richmond, Virginia. I am honestly in a pickle because I don't know if I have lyme or not and think I might have a nerve problem more than anything. I haven't researched alot of the symptoms but here are a small list of mine:

    fatigue and weakness
    muscle twitches
    muscle aches
    joint aches
    out of it feeling
    find it hard to concentrate sometimes
    electrical pulse feelings in body, mainly extremities and back
    anxiety (loads of it)
    slow gastric emptying
    reflux
    chest pain
    back pain
    others....

    Last edited by moesciphish; 06-25-2006 at 05:23 PM.

     
    Old 06-25-2006, 06:46 PM   #6
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    Re: Lyme testing, need info.

    Hi moesciphish.

    Unfortunately it is not always so easy to get diagnosed. Because of the unreliability of Lyme tests, it is important to see a knowledgeable doctor. I know of one in VA: Dr. Leila Zachrison in Fairfax, but I don't know if she is taking new patients. If she is not, I know of a few in MD. If you would like their names, let me know.

    Below is a Lyme disease 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

    I hope you can can see a Lyme doctor soon and get some answers. Keep us posted on your progress okay?

     
    Old 06-26-2006, 06:51 AM   #7
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    Re: Lyme testing, need info.

    I don't know about Igenex but I am sending my blood to Bowen Lab in Florida. The cost is $250 and I have to overnight it to them ($70). I thought I would send my receipt to the insurance company and see if they would reimburse.

    Good luck.

    Cindy

     
    Old 06-26-2006, 07:32 AM   #8
    moesciphish
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    Re: Lyme testing, need info.

    Thanks again for the replies. It does seem like I have alot of those symptoms. Right now my main concerns and scares are the extreme faitgue, head fog, and the crazy tingling/electrical/pulsating feelings in my muscles/body and the tremors. My muscles feel like they are constantly wrything or something crazy. And they are getting very weak and achey. The price of the Bowen test doesn't seem too outrageous, especially since right now I just want a piece of mind to know what I have... not knowing is the worst part, thinking I could have something very serious and worrying that things are going to get incredibly worse. Is the Bowen test reliable. I know Igenex claims over 90% sensitivity and 95% specificity. I don't mind forking over the money to know if I have it or not. Because if I don't, that atleast eliminates it, and if I do, I at least know where to begin to go about treating it and what to expect. I will definitely keep you updated and thank you for the help.

    Last edited by moesciphish; 06-26-2006 at 07:35 AM.

     
    Old 06-26-2006, 07:39 AM   #9
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    Re: Lyme testing, need info.

    I don't know the percentages for bowen. BTW, they do have a website if you want to read more about it. My LLMD uses Bowen and feels it is one of the best labs. Do you see an LLMD and is Igenex their recommendation?

    Cindy

     
    Old 06-26-2006, 09:05 AM   #10
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    Re: Lyme testing, need info.

    IgeneX and MDL also have websites. If your insurance company will reimburse for testing , these (2) are more likely ( for reimbursement ) since the Bowen test has yet to be approved.

     
    Old 06-26-2006, 09:07 AM   #11
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    Re: Lyme testing, need info.

    Diane,

    Do you know any more info on Bowen? I hope I've been steered in the right direction.

    Cindy

     
    Old 06-26-2006, 09:45 AM   #12
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    Re: Lyme testing, need info.

    Hi Cindy, Good to talk to you. My daughter lives in Berea Ohio.

    I have not had the Bowen test but many people here have. I did attend a symposium last fall and the speaker was the founder of Bowen. At that time she did say, of all test done at the lab all were postive except (2). One human and one dog.

    Last edited by dianneom; 06-26-2006 at 10:15 AM. Reason: add on

     
    Old 06-28-2006, 09:50 AM   #13
    moesciphish
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    Re: Lyme testing, need info.

    Ok.. so I called my doctor and found out I had the IgG and IgM antibody test done with labcorp. Is this even the western blot test or is it what as known as the ELISA? So should I request Igenex's IgM and IgG test with PCR, their standard primary test, or should I go straight for the urine DNA test? Is Igenex's standard primary test much better than Labcorp's or is it the fact that they take the extra step to do the PCR and then even further tests if needed?

     
    Old 06-28-2006, 11:52 AM   #14
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    Re: Lyme testing, need info.

    Hi moesciphish. IgeneX uses more sensitive testing. I would recommend having at least the Western Blot done there. This test will list numerical bands with a + - or IND after each band.

    Although the CDC requires a large number of bands to be positive for the test to be positive, many people who have Lyme do not have this many bands positive. Lyme doctors often focus on which bands show--some are specific for Lyme. Be sure to get copies of your results. If you want to post them, we can help you interpret them.

     
    Old 06-28-2006, 12:12 PM   #15
    moesciphish
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    Re: Lyme testing, need info.

    Ok, thank you. So the IgG and IgM AB tests were not the western blot correct? So the western blot would be the next best test or should I get the Igenex IgG and IgM and PCR done and then the western blot? If the western blot if primarliy negative, should I assume it's not Lyme then? This is kind of confusing since there is no standard approved test and the ones that are done aren't very accurate. Should I start with Igenex as if I've had nothing done?

     
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