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  • IGeneX says yes....CDC says no....

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    Old 07-31-2008, 02:50 PM   #1
    chris0007
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    IGeneX says yes....CDC says no....

    I finally got my Igenex report back and according to their lab I was positive for all tests, but according to CDC standards I am only positive for the titer (1:80) but not the antibodies.

    Has anyone had similar results and been treated for Lyme and subsequently regained health? Should I follow up on this?

    My results are listed below:

    IFA, B Burgdorferi - 1:80 (Positive)

    Lyme IgM Western Blot -
    Bands 23-25,39: Negative
    Bands 41, 83-93: Indeterminate
    Bands 31, 34: Positive

    Lyme IgG Western Blot -
    Bands 18, 28, 30, 39, 45, 58, 66, 83-93: Negative
    Bands 23 - 25: Indeterminate
    Bands 31, 41 Positive

     
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    Old 07-31-2008, 06:21 PM   #2
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    Re: IGeneX says yes....CDC says no....

    The anti bodies is the most inaccurate test trust Igenex and take the treatment. I feel a lot better since.

     
    Old 08-01-2008, 06:32 AM   #3
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    Re: IGeneX says yes....CDC says no....

    Thank you for the information! Does this mean you had a similar test result?

     
    Old 08-01-2008, 07:24 AM   #4
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    Re: IGeneX says yes....CDC says no....

    Quote:
    Originally Posted by chris0007 View Post
    I finally got my Igenex report back and according to their lab I was positive for all tests, but according to CDC standards I am only positive for the titer (1:80) but not the antibodies.

    Has anyone had similar results and been treated for Lyme and subsequently regained health? Should I follow up on this?

    My results are listed below:

    IFA, B Burgdorferi - 1:80 (Positive)

    Lyme IgM Western Blot -
    Bands 23-25,39: Negative
    Bands 41, 83-93: Indeterminate
    Bands 31, 34: Positive

    Lyme IgG Western Blot -
    Bands 18, 28, 30, 39, 45, 58, 66, 83-93: Negative
    Bands 23 - 25: Indeterminate
    Bands 31, 41 Positive

    I don't know what bands of mine were positive and which weren't but only that I was IgM positive. It was such a relief to find that I had Lyme b/c I went through 4 months of Hell trying to find out what was going on with me. If you have gone to a bunch of Docs and they all shrug their shoulders or tell you you're anxious you probably have Lyme. Of course that is a bit tongue in cheek but it seems to be ever more true.

     
    Old 08-01-2008, 09:04 AM   #5
    chris0007
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    Re: IGeneX says yes....CDC says no....

    Sorry for all the questions but were you IgM positive according to CDC or a LLMD/IGenex?

    Thanks!

    Last edited by chris0007; 08-01-2008 at 09:05 AM.

     
    Old 08-01-2008, 06:03 PM   #6
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    Re: IGeneX says yes....CDC says no....

    CDC-positive is 1) very hard to get, and 2) worthless, since they devised those criteria for their tracking purposes - they even said they were NOT to be used for diagnosis. Don't let a lazy medical profession tell you that you aren't positive and here you go, take an anti-depressant (which did happen to me). I dealt with that crap for nearly 3 years until I found a Lyme doc.

    I have been treated with multiple appopriate antibiotics (which is essential) for 8 months, and we believe that I'm cured (no recurrence of symptoms for nearly a year now). Hard to achieve though, but certainly possible if you have a good Lyme-literate doc.

    Last edited by Bill S; 08-01-2008 at 06:04 PM.

     
    Old 08-01-2008, 07:01 PM   #7
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    Re: IGeneX says yes....CDC says no....

    Thanks CT and Bill!

    It's just hard to believe because I've been living this nightmare for 15 months, my symptoms are so crazy and weird that I can't believe nothing hasn't showed up until the Lyme test. Basically I'm debilitated and I consider myself a pretty strong guy. Every system in my body has been affected. And I have had at least half the doctors that I've seen in those 15 months force anxiety/anti-depressant medication on me.

    Unfortunately due to my experiences in these last 15 months (trying everything to get better and nothing working) I just can't trust the diagnosis until I start actually getting better. I think I will serious cry the first day I wake up feeling even 25% better.

    I have my first appointment with a LLMD next week. She is a great doctor, but leans towards nature cures and at this point I just want to get better as fast as possible.

    Thanks again!

     
    Old 08-02-2008, 07:59 AM   #8
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    Re: IGeneX says yes....CDC says no....

    I was IgM Positive through IgeneX. The naturopathic cures are good for some but you should really use them in conjunction with the antibiotics not instead of. Funny though you're from IL and a few LLMD visits ago there was an entire family from Chicago in the docs office here in CT. That tells you something about Dr Phillips. Good Luck

     
    Old 08-03-2008, 11:48 AM   #9
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    Re: IGeneX says yes....CDC says no....

    Chris,

    There aren't any fast cures for Lyme's, but some treatments work faster than others. It took me nearly 2 months before I noted any improvement at all, and a total of 8 months of treatment before we could say that I had no noticeable symptoms left.

    I think I'm cured, but who really knows. Due to the major stress I've been undergoing for the past few months (first a pregnant wife, then mother in law with inoperable lymphoma, then wife gives birth, taking care of a newborn child, then mother in law is in hospice), if there were any Lyme spirochetes around, they would have had a field day - I ought to have symptoms by now in other words, if I wasn't cured. Cross my fingers and pray is all I can do now.

     
    Old 08-03-2008, 01:43 PM   #10
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    Re: IGeneX says yes....CDC says no....

    Bill,

    Thanks for sharing. What medication did you take and how bad were your symptoms? Also, were you CDC "qualified" lyme or was it a LLMD that diagnosed it?

    Again, thanks for sharing!

     
    Old 08-03-2008, 01:54 PM   #11
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    Re: IGeneX says yes....CDC says no....

    Quote:
    Originally Posted by chris0007 View Post
    Bill,

    Thanks for sharing. What medication did you take and how bad were your symptoms? Also, were you CDC "qualified" lyme or was it a LLMD that diagnosed it?

    Again, thanks for sharing!
    I had fairly bad symptoms, ranging from crippling fatigue, joint pain, brain fog, intestinal problems, etc.

    I had an initial CDC-positive Lyme test, had "standard treatment" twice (not much help), a couple "negative" but had 3-4 bands on the test, and 2 Igenex positive tests.

    I was on Cefzil (relative of Ceftin) and Tindamax. Cefzil kills the spirochetes in the blood/tissue, and Tindamax for the cyst form (it's ESSENTIAL to kill both forms, and at the same time or the Lyme's will recur).

    I can post my Lyme ordeal/treatment regimen if it's of interest to you, although it's a fairly lengthy read.

     
    Old 08-03-2008, 02:00 PM   #12
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    Re: IGeneX says yes....CDC says no....

    Thanks Bill!

    I would definitely like to hear it. I live in IL, but if I don't get better soon, I'll be moving back to DE. I noticed in another post you eventually saw a LLMD in MD. Can you be sure to share his/her name as well?

    Thanks so much for your positive story. Its making me feel better.

     
    Old 08-03-2008, 03:18 PM   #13
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    Re: IGeneX says yes....CDC says no....

    Quote:
    Originally Posted by chris0007 View Post
    Thanks Bill!

    I would definitely like to hear it. I live in IL, but if I don't get better soon, I'll be moving back to DE. I noticed in another post you eventually saw a LLMD in MD. Can you be sure to share his/her name as well?

    Thanks so much for your positive story. Its making me feel better.
    Doc is B Robert Mozayeni, Optimal Health Physicians, Rockville MD. You can search for the address/phone number since we can't post that info here.

    Here you go:

    I started to get weird symptoms in May 2004. Wasn't diagnosed with Lymes til August 2004, and was pretty much incapacitated. Was given the "standard" abx of Doxycycline 200mg for 3 weeks. Didn't feel any better, and got a bout of C-Diff and yeast infection to boot.

    Wandered from doc to doc (the worst and most useless was an Infectious Disease doc), got 2 more tests, both of which were CDC-negative, talked my regular doc into another regimen of abx, but he wouldn't try anything but the "standard" treatment. No effect. Was basically told that Lymes was hard to treat, and that I'd have to live with it.

    I carried on until April 2006, with relapses, I'd suffer for a month or two, I'd recover a little, and carry on. April brought horrible changes in my life, and I had the worst relapse yet. Was totally flattened. Even worse, had a large section of my foot taken out because of possible melanona (thank GOD it was merely abnormal and it appears that they got it all). And my father in law was dying from melanoma to boot. I was on crutches unable to even put weight on my foot, had a forced move to a new house (bad neighbor problems) and couldn't even help my wife with her father. I was ready to roll over and die.

    I was fortunate enough to find a local doc who was open-minded enough to try new treatments. Turns out that he and a couple people on his staff had contracted Lymes, so he was at least motivated to learn more about it and how useless the standard treatment was. I was tested again and had 4 bands on the Western Blot test. He started me on 400mg/day Doxycycline and it appeared to be helping. He put me on 5 months of Doxy and Tindamax for the cyst form. Then he announced that he was closing his practice and moving out of state :0

    So I was back to square one, basically. I kept taking the abx while looking for another doc. A month later I found a Lyme Doc for my father in law in the next state over (he'd been bitten by 2 ticks on the same day; had 2 bullseyes). I ended up calling up that doc, and he's been a life-saver so far.

    I had a major reaction to the Doxycycline; little red rashes all over my body that resembled vasculitis. My dermatologist sent me off for lots of tests, all of which came back negative fortunately (some of the possible causes were really AWFUL). My new Lymes doc put me on Minocycline in the hope it'd not trigger such a reaction. Poof, in ONE day, the rash returned. We're thinking I'm allergic to all the tetracycline drugs. Oh no!

    He puts me on no meds for a month to allow my immune system to calm down. Once the month was over, he starts me on an interesting regimen of Benicar (to reduce the inflamation so the abx could get at the spirochetes more easily), Vitamin-D supplementation (I was very low onVit-D) and Cefzil. I was to start to take the Benicar but no abx. Interestingly enough, I started to get a few of the red spots during the period when I was ramping up the Benicar and NOT on abx (he later said that he thinks the Benicar has some effect on the Lymes spirochete, but that abx are still needed to effect a cure). We then started up the Cefzil.

    After 2 months, we added in the Tindamax.

    With this doc I was on:

    500mg 2x/day Cefzil
    500mg/day Tindamax
    40, then 80mg/day Benicar
    4000 IU/day Vitamin-D3
    tons of acidophilus tabs
    Fungal Defense
    numerous other supplements to help support my system.

    My doc is of the belief that Lyme's is primarly an inflammatory disease, due to the immune system reactions the spirochetes provoke. He uses the Vitamin-D3 25 hydroxyl levels as indicator of levels of inflammation in the body; low levels warrant Vit-D3 supplementation until the levels are consistenly high. He also believes that the Vit-D3 + Benicar combo helps reduce the inflammation that the cyst form of Lyme's creates around itself to hide in the body tissues. This allows the antibiotics to get at the cysts more effectively.

    The Tindamax is critical for a "cure" in that it kills the cyst form. If you don't take it plus another abx at the same time, you will probably get a relapse when you stop the abx.

    As for tests, he did a typical standard test regimen, plus specialized thyroid tests, stool tests (which detected major yeast overgrowth and food allergies to soy and dairy), several CD-57 tests, several Vit-D level tests, several Babesia tests (all negative).

    All told, I spent over $6000 USD, with only about 10% reimbursement from insurance (out of network doc since I could NOT find an in-network doc who knew how to handle my case). Add in about $5000 in prescription meds and supplements. Add in about 2 years of not working much. Lyme's cost me about $40,000 all told.

     
    Old 08-03-2008, 03:38 PM   #14
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    Re: IGeneX says yes....CDC says no....

    Wow....now I'm depressed!

    Thanks for sharing...really.

     
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