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    Old 09-24-2008, 10:45 AM   #1
    k2626
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    What made you test for lyme?

    Hi guys, I just read one of the symptom/story threads and it was very interesting. What made you all decide to get tested for lyme-symptoms, etc...

    As I was falling asleep last night I got a severe burning stabbing pain in my big toe on my right foot. I decided its time to chalk up the cash to see a LLMD....especially after speaking with the Igenex dr.

    Interested in hearing your stories, and hopefully it will help newbies that visit!!

     
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    Old 09-25-2008, 03:48 AM   #2
    Nexis
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    Re: What made you test for lyme?

    What did the doc at IGENEX say regarding your results? Did he recommend you the LLMD? Sorry for all the questions yet I know the last post you were unsure regarding the results. So please let me know how it went.

    In my case I came here looking for answers and then a poster name Ticker told me about Lyme. I was in a horrible condition, couldn't move, stiff neck, couldn't walk far due to dizziness, fever,etc

    I got tested through a generic testing, came out positive for only one band, and Ticker and someone else here recommended me to Igenex.

    Those people at Igenex are great and helpful people.

    Last edited by Nexis; 09-25-2008 at 11:29 AM.

     
    Old 09-25-2008, 10:28 AM   #3
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    Re: What made you test for lyme?

    After going onto a few different forums in March of last year, and posting all of my bizarre symptoms, it was suggested to me that I get checked for Lyme. I never thought of Lyme before that point, but the more I researched, the more sense it made. I didn't even bother getting tested through any of my regular doctors or my neuro. I found myself an LLMD and had him do the testing- through a regular lab, and also through Igenex.

     
    Old 09-25-2008, 11:49 AM   #4
    k2626
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    Re: What made you test for lyme?

    Nex- I tested pos on band 31 for the IGM and IND for 34 and 41. The dr at Igenex said if I have the symptoms he suggest I do the urine/antiobotic challenge. So they are mailing me the urine kit. I will take antibotics (need to find out what kind, I HOPE its in the packet), and take the urine samples on days 2, 4 and 6. I guess once you start taking the anti the bacteria will come out in your urine, so that will give me a definative if I have it. What were your results?

    Dat, what were your intitial symptoms? Did you test pos on both tests?

    Last edited by k2626; 09-25-2008 at 11:49 AM.

     
    Old 09-25-2008, 12:05 PM   #5
    datgrlstef
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    Re: What made you test for lyme?

    Quote:
    Originally Posted by k2626 View Post
    Nex- I tested pos on band 31 for the IGM and IND for 34 and 41. The dr at Igenex said if I have the symptoms he suggest I do the urine/antiobotic challenge. So they are mailing me the urine kit. I will take antibotics (need to find out what kind, I HOPE its in the packet), and take the urine samples on days 2, 4 and 6. I guess once you start taking the anti the bacteria will come out in your urine, so that will give me a definative if I have it. What were your results?

    Dat, what were your intitial symptoms? Did you test pos on both tests?
    Here are some of the symptoms I had:


    burning, pins & needles (various areas)
    sensitive patches of skin (various areas)
    sensitivity to bright lights & sunlight, causing headaches, migraines
    over-active bladder
    gastrointestinal issues (with nausea) -(sometimes weekly)
    muscle cramps
    frequent dizziness
    hot flashes
    stabbing pains in lower back on either side of spine.
    sensitive to loud noise
    bone & joint pain
    severe dry skin on hands
    heart palpitations
    chest pains
    1/2 of body going numb

    On the regular lab's tests, I had one band show up, but it was negative. Via Igenex, I tested IgM positive, and positive for CDC standards. I have been tested for co-infections twice, and negative both times. Oh.. I did have the urine antigen test, and it came out negative.

     
    Old 09-25-2008, 12:59 PM   #6
    k2626
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    Re: What made you test for lyme?

    Wow, so you tested negative on the urine? Was this after you went on antibotics? Igenex said that this "challenge test" is usually accurate as the bact dies when you go the meds and comes out in the urine. Or did you have a different urine test?

    Your symptoms sound like mine, did you ever have a rash? I did not.

    How long did it take from the time you had symptoms till you got a dx?

    When you were tested positive was it by the old CDC standards or new (ie-2 bands IGM, 5 bands IGG).

    Finally, how long did it take for you to feel better?

    Thanks so much for sharing, sorry for all the questions!

     
    Old 09-25-2008, 08:01 PM   #7
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    Re: What made you test for lyme?

    Quote:
    Originally Posted by k2626 View Post
    Wow, so you tested negative on the urine? Was this after you went on antibotics? Igenex said that this "challenge test" is usually accurate as the bact dies when you go the meds and comes out in the urine. Or did you have a different urine test?

    Your symptoms sound like mine, did you ever have a rash? I did not.

    How long did it take from the time you had symptoms till you got a dx?

    When you were tested positive was it by the old CDC standards or new (ie-2 bands IGM, 5 bands IGG).

    Finally, how long did it take for you to feel better?

    Thanks so much for sharing, sorry for all the questions!

    Mine was the Urine Antigen? test that Igenex gives.. 3-day sample. I was given that packet of tubes the first day I saw the LLMD. And that day or the next is when I started taking abx. I pretty much did the test right off the bat, because I see the LLMD once a month, and they like the results in before your next visit. 2 of the 3 samples was negative, and the other was apparently a bad sample? LOL

    Through Igenex, I tested positive with 5 bands, IGM. My LLMD did not test IGG via Igenex.. but I am convinced that if all my symptoms are related to Lyme, I was infected at least as far back as '98.. and the only time I know I was bit by a tick (ever recall physically being bit or having one removed) was in 1987, when I was visiting Pennsylvania with a friend. The tick was on my back, and my friend's grandma removed it for me. (Oddly enough, years later I had something I thought was a mole, removed from my back in that same general area). I don't know if I ever developed a rash or not at the time.. I never saw one. However, in 1991-92, I did get a circular rash on the back of my left thigh.. it came and went. Then 10 yrs later when I was in my first pregnancy, the ring came back- same place. The OB/GYN thought it was ring worm, but I know for sure it was not.

    I had some weird issues back in the late 80's, early 90's.. but the first major issues started around '97-'98. I started having nerve pain in my left arm.. then in '98-'99, sharp chest pains in the left side, that would shoot down my left arm. I did see many doctors off and on over the years, and that really picked up steam about 2 years ago. I was having a lot of nerve pain, and these bad cramps in my outer left thigh.. plus the numbness in my right big toe. In the last 2 years I've had mammograms/breast sonogram (because of breast pain), 2 MRI's (2nd one because left side went numb- it led to finding out I had suddenly developed 3 thyroid nodules), FNA (thyroid), NCV/EMG (nerve) tests, upper GI, colonoscopy... previously I was also tested for carpal tunnel, and given a number of chest xrays and EKG's LOL

    So basically the same crap most people here go though. LOL! So after all of that, I didn't get diagnosed with Lyme til May of last year. I'm currently on Bactrim and E-mycin, and have been on it for 3 months. Aside from some minor aches and pains, and some muscle pain in my calves (and stuff other than Lyme- ulcer, degenerate discs causing some nerve pains, etc..), this last 3 months is the longest I've gone feeling more or less "normal". I'm actually weaning off the E-mycin as of yesterday's dr. visit. So I'm hopeful I don't backslide, and that I can actually be off meds soon.

     
    Old 09-27-2008, 12:46 PM   #8
    k2626
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    Re: What made you test for lyme?

    Wow thanks so much for sharing. The only time I recall being bit was back when I lived in Connecticut, but that was over 10 yrs ago. However, I too have had stuff go on over the yrs, but have not had this horrible body pains, nerve pains, twitching and extreme joint cracking till now.

    Back in 98 I started to get visual snow and felt out of it all the time. I did use to camp a lot back in those days too. I went from neuro to neuro due to the snow. At night its like a lightly fuzzy tv screen and in the day I see little blue swirly dots. I have learned to live with it, but never understood what it was or why I had it. Also in 98 I started to get mirgraines with auras...also somethign I live with though I do not get them often.

    Two yrs ago I developed GERD. Now...well nows its the shooting body pains everywhere, joint cracking and the worst---non stop twitches

    Ohhhh-- 3 wks before all the pains started, I had little bumps on my stomach that looked like litter chigger bites. I went to the dr because I was paranoid it was MRSA, even though I did not have the symptoms. They gave me 5 days of antiobotics and it went away> I had a very nasty cold right before the bumps...Not sure it there is a relation there.

    Is it possible to have lyme for over 10yrs and not have the worst of the symtpoms come out till later? If it is possible, what brings out these symptoms and if I have had lyme this long, why would I only test pos on band 31 and IND on 34 and 41. Wouldnt I have as many bands positive as you?

     
    Old 09-27-2008, 05:01 PM   #9
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    Re: What made you test for lyme?

    I think that Lyme symptoms can go dormant, and then be brought out with a vengeance after illness, pregnancy, or stress. For me, I think my pregnancies may have awoken the beast so to speak. Of course it's also possible I was reinfected around that time.. as my LLMD suggested may have been possible. I know my husband and I did some hiking and stuff around that time). When my nerve symptoms developed, I was living in an area of California where this is a higher incidence of Lyme- I was very sick at one point, but never thought anything of it. However I did a lot of hiking, so I could have been reinfected around that time.. I really don't know what an IGG test through Igenex would have shown. But since I was positive via IGM, a more recent infection is possible.

    What amazes me is that although I could have had this for a very long time, I am not as bad off as many other people are who have been more recently infected. SO I can only be thankful for that, and hope these other sufferers will get the help they need soon.

     
    Old 09-27-2008, 06:17 PM   #10
    k2626
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    Re: What made you test for lyme?

    I really wonder if mine is due to lyme from even having it a long time. I have seen the "swirly dots" in light background and sky for 10 yrs, around that same time I started to get stabbing pains to my head (had mri at the time), migraines with aura...but there was never an explanation. Now all this other stuff has started. I worry that I have cancer in my spine because right near where my bra strap hits I have pain that feels like a bruise-which if it were my spine would make sense in terms of the twitching etc, though I doubt the joint cracking. I did have an mri of spine and it just showed degenertive disc issue in that area, but nothing major. Not sure if the mri would detect if there was something in my spinal fluid blah blah blah

    I wish I had tested pos on more than one band, but the good thing is at least I go see a specialist for lyme in a wk

     
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