posted
I was just wondering something: do people, who get rid of lyme (or become symptom free) test negative through igenex? How do you know if the disease is still active or if you just have antibodies against lyme that will always be in your blood?...
Posts: 723 | From Montreal | Registered: Oct 2010
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nefferdun
Frequent Contributor (1K+ posts)
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posted
I am not sure about the IGENEX test but as you improve your CD57 test improves. So when that is over 100 you are usually well enough to quit abx.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
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Member # 12673
posted
- There is no lyme test that can show the absence of borrelia. At this time, sadly, there is no way to totally eradicate all forms of borrelia from the body. A CD 57 can tell you how your body is doing, though it's not the perfect test, either.
How you FEEL - and how you manage the activities of life - are the best indicators of a good solid remission.
Of course, with all the different tick-borne infections, and heavy metals and nutritional deficiencies, it can be hard to figure out what is going on sometimes but that is where a multidimensional approach and the experience of a good LLMD really counts.
Tests can be done for heavy metals and for some nutrients. Beyond the basic tests, I think we need to learn how to read our bodies better. I think there is no better indicator. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for the replies. So basically, there is no test that can show if bb has been eradicated right? either you have antibodies or not but if you have been infected once, you will always show positif? I'm just asking because that means if your CD 57 is good, and you still feel bad, that means you have to target co-infections and maybe heavy metals more than bb?...
Posts: 723 | From Montreal | Registered: Oct 2010
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Keebler
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posted
- Correct: There is no test that can show if bb has been eradicated.
You may not show positive but a negative lyme test is never a sure thing, ever.
A while back a LL ND told me that a CD 57 is not the end-all, be-all at all. Mine was surprising not too bad but clearly I was about as sick as anyone she had seen with untreated lyme that did test positive. I would not bank too much on a CD 57. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, do you remember what was your CD 57? And also did you have treat for co infections as well? may I ask you which one caused you the most trouble?...
Posts: 723 | From Montreal | Registered: Oct 2010
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Keebler
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posted
- I don't recall the number but from what the LL ND said, it really was not a very good test for me.
Yes, lots of coinfections on my plate, too.
I think there is no way to pull it all apart on my own as so many of these have the same symptoms. Only a very experienced LLMD or LL ND would be able to do that. I hope you have an excellent and very experienced LL doctor.
Heavy metals and parasites also enter into the equation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
yeah I trust my LLND,, I am actually chelating heavy metals now...
Posts: 723 | From Montreal | Registered: Oct 2010
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Keebler
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posted
- Well, chelating can sure make one feel icky. Hang in there.
Forgot to add this:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about: ----------
posted
My CD57 is in the 140s - I checked with a top LLMD and they said we could have a higher CD57 count and still be ill, just as someone with AIDS could have a higher CD4 count and be ill.
Posts: 13116 | From San Francisco | Registered: May 2006
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Haley
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posted
My CD57 was fairly high also and I was very sick.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Robin123, was your CD57 that high when you were diagnosed or did it go up with treatment? For sure one can be ill, but i guess we can also be ill from co infections more than lyme if our immune system copes with it... people with AIDS do not die from aids but from an opportunistic infection that their weak immune system can not cope with...so their CD4 tells them how they can cope with infection more than their actual load of virus...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
My doc said if you have Chronic Lyme, you can NEVER be cured....
but it CAN be put into REMISSION ;-) Thats when your immunesystem kicks in and takes over and keeps it in check.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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Keebler
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posted
- Hey, Stephanie,
I've not seen you around for a while. I hope you are feeling better and having a nice holiday season. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have not had any symptoms for well over a year now. I was tested with a Quest test about 4 months or so into complete remission and band 41 showed up.
I had started going to a new doctor (other than my LLMD) since I was no longer in Lyme treatment in order to get my thyroid meds. He wanted to test me.
I don't know about IGeneX because I don't want to pay $200 for curiosity.
Here is an interesting article on cure vs. remission. It's really semantics. Based on this article's definition and the medical definition, I am cured. I have been cured of chicken pox as well, yet still carry around those antibodies.
Previously in my life I have been in remission from Lyme Disease. That was different than now because I had to get enough rest, eat right, exercise, etc. in order to stay feeling good. Now I just feel normal no matter what.
Again, it's just semantics. You can get well, and that's what matters.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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ktkdommer
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posted
My CD-57 is 80, my youngest and sickest is 58, my oldest and healthiest is 99. Our ILADS doc wants us to be up to 150 before discontinuing treatment as well as symptom free for 3 months. I read somewhere today that the recommended number is 120.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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nefferdun
Frequent Contributor (1K+ posts)
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posted
My CD57 is 54. I don't feel many lyme symptoms and for months was not having the monthly flare - but it is still there making it harder for me to recover from the co-infections.
I read somewhere that bartonella can raise your CD 57. Can't recall why as my brain won't retain that much information. There is a test used to determine if you have bart called the VEG(?). Anyway that test gives false negative results when your are exposed to mold. So you should not completely rely on any test.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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