I'm been trying different abx for a full 8 mos. My first Igenex WB was negative, but some bands showed up. My LLMD is still on the fence as to whether I actually have Lyme, and I have only had short bouts of improvement, then backslid.
I think I'm out of options for different abx to try, and my LLMD may want me to try anti-virals when I see him next. I am still having a hard time not knowing if I have Lyme & Co., or what.
I called Igenex hoping to confirm what I had read here, that you don't need to stop abx to take WB. I had called previously and been told to stop 2 weeks, so I was curious to see what their answer would be this time.
The lady I spoke to couldn't answer my question. Someone else had to call me back, and didn't give me a direct answer either! Instead, she said for my llmd to call and speak with their doctor about further testing for me.
I don't understand. She didn't say it, but maybe after 8 mos. of abx, my antibodies would not be present.
My question is: do you see any reason taking another WB now would give false results?
Do you think I missed my window of opportunity to retest the WB? I know you'll think I should go by my LLMD, but he once said you need to be off abx for MONTHS, and that theory is way off the current concensus, I believe.
Can anyone shed some light on this? Thank you!
Posts: 175 | From SW PA | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
You could repeat it, but will it make any difference in your treatment choices?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
It would make a difference to have more bands show positive on WB, because my LLMD may switch me to antivirals next. If they don't work, I will be at a dead end. Plus, the piece of mind.
Anyone have any input?
Posts: 175 | From SW PA | Registered: Mar 2008
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Our ability to measure CD-57 counts represents a breakthrough in Chronic Lyme Disease treatment. It can be used to help determine how active the infection is, how well the treatment is working, and whether, after treatment ends, a relapse is likely to occur!
This is how it works: Chronic Lyme infections are known to suppress the immune system. The Lyme spirochete can affect all major cell types of the immune system, but it most clearly can impact a specific subset of the natural killer cells. This is called the CD-57 subset. Just as in HIV infection, which suppresses T-cell counts, Lyme suppresses Natural killer cell count such as CD57. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active the infection is, in Lyme we can use the CD-57 count to indicate how active the Lyme infection is. When Lyme is active, the CD-57 count is suppressed. We currently are having our tests run by LabCorp because published research on this test was based on their methods. At this lab, the expected range for the CD 57 count is above 60. However, in the chronic Lyme patient, CD-57 counts are usually well below 60 and may be at risk with levels of 60-100.
This test can be run at the start of therapy, then every several months to document the effectiveness of treatment. One hopes to see a stable number or a rising trend over time. When antibiotic therapy is finally at an end, if the CD-57 count is not above 60, then a Lyme relapse is more likely to occur.
Test interpretation: Low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year. A review of the affects of other infections, only Lyme spirochetes lowers the CD57. Following is the criteria established by research.
Test interpretation: Low CD57 occurs in chronic Lyme or when the disease has been active for over 1 year. The count reflects the degree of infection. It is not a diagnostic test but is used as a marker for Lyme being active. Test done by LabCorp.
>200 is normal < 20 severe illness 0-60 is seen in chronic Lyme disease > 60 Lyme activity indicates improvement
Posts: 873 | From WA | Registered: Dec 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I had a Quest WB done with only one band reactive (IgM 23).
I was diagnosed locally by a duck, then found this site
And was led to my LLMD (Thanks Lymetoo!).
I had been on antibiotics almost 2 whole months prior to the visit with LLMD.
He saw no need to repeat the WB...even with Igenex.
In fact, my LLMD will not use a WB to diagnose Lyme.
He wants to know if you are symptomatic for Lyme.
A WB only is used by him to support a diagnosis.
Have you treated any co-infections?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
My llmd has been treating me under a clinical diagnosis, but last month, when I asked him if he now feels more certain I have Lyme, he said he still isn't sure and it may all be viral.
He doesn't do CD 57 testing.
As for co-inf's, he hasn't nailed anything down there, either. I just now tested for them thru Labcorp, and am not expecting much to show up.
I feel with most other LLMD, I'd be diagnosed clinically by now, but mine is withholding diagnosis. I think that's just the way he is. I didn't care, as long as I was being treated. But I'm not improving.
Even with the appearance of very faint ring-shaped rashes, he isn't sure. If he's not sure, then I can't help but wonder.
These rashes are sometimes a ring within a ring, sometimes 2 rings overlapping, sometimes just a single ring. But they never expand. I mean, what else could that possibly be?
I guess I'm not only looking for piece of mind. I worry that if the viral meds get me nowhere, he may not want to try abx again. If I had made progress on oral abx, I'd have the reassurance that I'm on the right track.
My Igenex WB was: IgM IND on 23-25, 31, 41 IgG IND on 31, 41++, 58+
Any feedback is appreciated. Thanks everyone.
Posts: 175 | From SW PA | Registered: Mar 2008
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posted
Oh, I forgot to say, I tried Rifampin and Levaquin (Bart) but couldn't tolerate either of them. They were tried just to see if they would help.
Posts: 175 | From SW PA | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
[Your] question is: do you see any reason taking another WB now would give false results?
Yes. False negatives are fairly common. It sounds like this guy is not looking at you, hearing you.
While I had glowing positive WB at one time, no treatment for many years, repeat test, it would still positive according to lyme specialist, but PCP went by CDC criteria, so it was "negative"
I don't CD-57 testing is the end-all be-all, either.
I think you need a better diagnostician with lots of clinical experience not just with lyme patients but also with other infections.
There may be more than lyme here but with your history of rashes and the positive bands, this sure sounds like lyme.
Eight months simply may not be long enough. And, that said, a different approach may help.
Have you had liver support all along?
Adrenal support?
=============
For background on the issue of finding treatment, this is one of the most helpful articles I've seen:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
Excerpts:
. . .
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
. . .
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . .
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
. . . .
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive.
Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
And may I add to the list of things to test for: enteroviruses. Using Arup lab. The enterovirus website is not quite operational yet, but it will have loads of info on it soon.
A friend of mine is now 95% well after being sick for several years (very sick). She has been on antibiotics for lyme/coxiella, valcyte for high EBV and HHV-6.
She saw improvements from both treatments. She is now almost well by treating the enterovirus with oxymatrine. She had multiple pathogens making her ill.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My first WB showed no bands positive, then after 2 months on antibiotics band 41 showed up positive, both done by Labcorp.
My LLMD diagnosed me clinically. Band 41 sort of backs up the diagnosis somewhat. I have been in treatment for 9 months and feel just a little better. I think this is the route for LD. It just takes a long time for many to get well. We all have times are ups and downs and it can get very discouraging.
If you are looking for peace of mind, I hate to say it, but not sure that is something you ever find where LD is concerned. Many people never get a positive test result.
I use to be hung up on getting that positive test result, so I can totally relate to how you feel; but finally I realized that it might never happen, and if you keep retesting, it may raise eyebrows with your insurance company. However, you could pay for it out of pocket and not file it on insurance.
Treating LD is basically trial and error. If you have a good LLMD that you can put all your trust in, then he should have enough experience to know what you should do next.
I guess in my opinion the test don't mean that much, since they tend to be so inaccurate. For myself I probably wouldn't bother to retest, unless you LLMD suggest it. If he is willing to treat you until you are well whatever treatment that might be then I would hang with him. If not I would find a LLD that was willing.
I actually point blank have ask my LLMD if he intends on getting me well and he says he will never give up on me. That is where I have put my confidence, instead of in a test that is not worth much.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
You are both right, of course, about the inaccuracy of testing. I guess there are many ppl here who don't have definite answers, and it can take years to get them.
What you are saying, Suthern, about trust and confidence is probably why I'm freaking out here. If you see where I'm going there.
I have included liver support but not adrenal. Thanks for the reminder, Keebler.
So, I guess I'll see what LLMD says about repeating the WB. I can't wait until these doctors agree on standard guidelines!
Posts: 175 | From SW PA | Registered: Mar 2008
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