Totally symptomless patient tested for screening purposes only.... with large number of Lyme specific Igg and Igm bands. I have looked around for Lyme WB reliabilty statistics and have found nothing.

I did have an active infection with high viral capsid antibodies so I chose to use Bowen instead. When the antibodies calm down I'll go with Igenex and the Western Blot.

I have never been able to tell from reading, if this cross-reactivity is mainly just the Elisa. I called Nick Harris, director of Igenex,and he confirmed that there was some cross-reactivity with autoimmune illness on the Western Blot, but he listed bands that he thought were NOT affected, and as I remember it was all the Lyme specific bands, 23-25, and 39 were included.

I have not been able to get any MD's in researching this for me. it seems essential clinically when you have positive ANA's (or even anti-DNA's, and skin biopsies like we do) as well as positive Western Blots.

The research I did showed that Lyme can affect autoimmune labs such as these, and autoimmune illness can affect Lyme labs too. A totally circular situation. It's impossible to tell...

A positive syphilis test is actually one of the criteria for a diagnosis of lupus, and we all know syphilis is another spirochete. But MD's don't theorize that lupus patients actually have syphilis.

The LLMD's will say that the Lyme has triggered autoimmune activity, so, in a sense, both tests are correct. They don't consider the positive ANA's "false," But rheumatologists are more likely to either ignore or explain away the positive Western Blots as "false positives."

Clinically, for us, this issue has been relevant to the decision about whether to treat with abx (yes, and some treat auotimmune illnesses like lupus this way anyway) whether to avoid steroids (yes, and actually the rheum. never has suggested these), and Plaqueil is a good drug for both possibilities.

David, this may not be the reason you
asked, but autoimmunity is the main source of cross-reactivity, according to Igenex. In the back of my mind, even with positive Western Blots, I don't feel 100% certain of Lyme diagnosis, although I feel more sure of that than anything else.

So some of the people screened might haveimmune systems that are holding the infection off, and/or the Lyme could be dormant. The definition of symptomless is also open to question. Once I got the positive results for my daughter, we did realize she ahs SOME symptoms, but not really enough to have testing done in a family that wasn't already dealing with Lyme.

Husband VERY sick with lyme for a LONG time.His immune system was very low. He did not test with alot of bands.

Me, I have no symptoms and tested CDC postive.

Daughter, age 13, high IQ, active in danceing since age 3, only problem with her is she is very shy, she tested high postive.

Are we doing right in treating daughter and myself even though we feel good. We have not even herxed.

How long do we continue with treatment??
I know husband has to remain in treatment til he is symptom free, but what about me ??

Small symptoms would show up, but nothing that worried me. Lyme dug its heels in when I started commuting four hours a day and had a very stressful job; even then it took about 18 months before the lyme really kicked in as my immune system fell apart from sheer stress and exhaustion.

My holistic doc and my chiropractor both have lyme and babs, both are as healthy as horses, in other words no symptoms at all.

I believe lyme is everywhere waiting for the body to give the signal. It is a lesson to all about taking care of your health and never giving it up to a corporation or anything else!

Today, she is coming off the abx. She has absolutely no "herxes" and has had absolutely nothing that could even possibly be a symptom for 2 months.

Lyme patients should try coming off abx if they are symptom-free on abx for two months, but it is hard to tell this if the child was virtually symptom-free to start with!

It is hard to have them on medications based on testing alone...I worry about side effects.

It is strange that so many families have this pattern, with multiple family members testing positive, some sick, some not, and in many cases like ours, the sickest family member doesn't even test fully positive! Is there some sort of exposure going on that doesn't cause actual illness or infection?

Because puberty caused problems for my other child, I did decide to treat my youngest (the dancer). In the past, When she came off abx, she again had a problem with a sensation of having something in her eye. This is really her only symptom. Her asthma can get a little worse maybe (caused by a virus when she was one and a half), but this is questionable. That's about it.

I am hoping that her eye problem does not return and she can stay off.

it is very hard to decide what to do. I am hoping that by treating children who aren't sick, we can prevent the infection from ever causing the problems, esp. during the heart of puberty. But who knows! Noone does. There isn't enough knowledge or research yet, and our LLMD's are guessing in some ways. Educated guesses, but guesses.

My daughter did 6 weeks of strong dose of amoxicillin last Jue, then zithromax and Plaquenil, but I honestly gave her half the dose I take because she only weighed 65lbs. She came off twice, and both times the eye thing came back. Our LLMD put her on a heavy dose of tetracycline in December, and now says she can come off. In the last 7 months, she's been on abx for maybe 5 1/2 months with two breaks, adn the longest strectch of time being almost 3 months.

In the meantime, tell her to keep on dancing!

I will probably get stomped for this post but there are a LOT of people on this board who put very HEAVY reliance on the WB results. Not so in the ILADS guidelines... there is a scoring criteria in which positive WB alone accounts for a low score (3 or 4 out of 10 I believe).

This question is not only important to familes with a Lyme disease sufferer but it is also VERY important to everyone since the credibility of the lyme community can be called into question with blind reliance on tests that give false positives.

Have blind studies been carried out to see how many people have positive Lyme specific WB bands and no disease?

Is this why the CDC picked the bands that it did?

Is this why the Elisa first?

The WB bands represent antibodies to fragments of the bacteria, can exposure to blebs cause the antibodies to be produced as blebs are basically encapsulated fragements of the out surface. Similarly can exposure to a person who is shedding fragments as a result of treatment somehow cause an antibody response to to the fragments.

The WB tests may in fact be virtually useless to confirm Lyme one way or the other, maybe not even sufficient to suggest it???.

""If the CDC is correct and Dearborn is relevant, then the vaccine may be triggering an immune response to Borrelia burgdorferi in people we never recognized as infected with the spirochete, although they were. It could mean there is a lot more Lyme out there than we ever realized," says Harris of IgeneX. "But, if Imugen is right, we need to go back to the drawing board and determine a new definition for the disease."

Taken from here. http://www.astralgia.com/magazine/bitterfeud.htm

As my fmaily proceeds into our 4 th year of "all this Lyme stuff" (I know I have Lyme and have extensive neuro symptoms as evident in my pitiful efforts to type properly).. .I continue to feel the best approach is to always be open to all sides of every question. Skepticism is alwasy good, if painful. All we can do is to listen to all opinions and make the best judgement call for this day or this week or this month.

The Reference Laboratory, founded in 1983, was purchased from 3M Diagnostic Systems (3MDS-Santa Clara, CA and BioWhittaker, Inc., Walkersville, MD) in 1991 by IGeneX, Inc. and moved to Palo Alto, California.

The laboratory is CLIA-certified, inspected by the Department of Health and Human Services for Medicare testing, and is also licensed in those states with special requirements (California, Florida, Maryland, New York, and Pennsylvania).

Personnel include MDs, PhDs, and California licensed and nationally certified clinical laboratory scientists (medical technologists); research, accounting, and marketing staffs; and client service specialists. Directing the staff are Jyotsna S. Shah, PhD, CCLD, MBA and Boyd G. Stephens, MD; Clinical Consultant: Steven J. Harris, MD; and Nick S. Harris, PhD, AMBLI, President.

A letter from the President:
Our staff of professionals, who have worked together for many years, is committed to the following practices, ideals, and procedures:

State-of-the-art testing methodology;
Rapid turn-around-time -- in most cases 48 hours;
Dedication to personalized testing;
Willingness and availability to answer your diagnostic questions;
Ongoing refinement of existing tests; and,
Research and development for innovative quality tests to enhance your diagnostic tools.
Nick S. Harris, Ph.D., ABMLI
President, IGeneX, Inc.

Laboratory Certifications CLIA 05D0643914
Medicare ZZZ32759Z
CA State Dept of Health CLF4033
FL State Dept of Health 800002892
MD State Dept of Health 885
NY State Dept of Health 3172-805133A0
PA State Dept of Health 025659

Credits
The PCR is performed under a license from Roche Molecular Systems.

Procedures may change depending upon the availability of reagents from other manufacturers. IGeneX will notify customers when alternate methods are used.

There one of thee best!

Nick S. Harris, Ph.D., ABMLI

If take a group of 'healthy' people and examine their blood and tissues very thoroughly you would find all sorts of unexpected disease causing organisms. That's why we were given immune systems.

If you have a positive WB and don't feel sick do you have it? Probably, IMO. You would be surprised at the other things you have in you if you only knew. You immune system is just doing its job well, and may continue to do so if you take good care of your body. It is keeping the problem under control without your even having to know about it.

The WB is still valuable information. It alerts you to take supportive measures to give your body all the help it can get, and not do things that abuse and weaken it.

It also alerts you to be watchful for symptome if it becomes more than your immune system can handle.

Although I did have symptoms after my tick bite, it was a good two years before the roof fell in. And I got no treatment during that time. Don't know why it suddenly got worse. Those people who are symptomless may stay that way or become sick at some future time. Should they get treated or not, when they aren't having any symptoms? I haven't the foggiest notion. Maybe their immune system will hold it down, maybe it won't.

I have had lyme a long time, but the neruo pain didn't come until after my son and lots of stress in my life etc.

Linda

please any thoughts on that.

Here are some real important questions, particularly for children.

How many symptomless positives are there?

If the bug is persistent, does treatment with no symptoms do anything?

Does it make the bug more resistant?

Does it make the bug dig in deeper?

Needless to say, up until this point I had thought that lyme specific bands would result in SOME symptoms. This may not be the case and if so how many are in this same boat.

I know that infections can simmer at an asymtpmatic level for many many years and then pop up. But in the case of Lyme, if a lot of people have it then the whole question of disease vector has to be re-thought.
Bowen has illuded to this but the method of testing they use is basically non standard and controls are therefore difficult to establish based on published data.

????????

quote:

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Originally posted by david1097:
I'm not trying to knock Igenex. I am just repeating what others have said about "those labs" than "give false positives". This is a very common statement by many Dr's that don;t treat lyme every day.
If in fact the WB tests can give "false" positives, this should be well advertised so that additional weight can be placed alternate diagnosis metrics. This is very important asn it has a lot to do with people not getting proper treatment. Basically Lyme has a very bad name in the medical community and this is one way to correct the problem.

Here are some real important questions, particularly for children.

How many symptomless positives are there?

If the bug is persistent, does treatment with no symptoms do anything?

Does it make the bug more resistant?

Does it make the bug dig in deeper?

Needless to say, up until this point I had thought that lyme specific bands would result in SOME symptoms. This may not be the case and if so how many are in this same boat.

I know that infections can simmer at an asymtpmatic level for many many years and then pop up. But in the case of Lyme, if a lot of people have it then the whole question of disease vector has to be re-thought.
Bowen has illuded to this but the method of testing they use is basically non standard and controls are therefore difficult to establish based on published data.

????????

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I was responding to Lyddie

I just responded David I would be interested in your source, where you read anything critical of Igenex, the possibility of too many positives from Igenex, etc. ((((Is Igenex a recognized or certified or whatever lab?)))))

Statistics http://ethesis.helsinki.fi/julkaisut/laa/haart/vk/heikkila/newantig.pdf

My opinion (and I'm not a doctor): Give the child antibiotics until they no longer herx. Then watch, carefully.

It says that we know more about frontal assault strategies of microbes but not much about stealth attacks. There is a chart describing characteristics of these two strategies, including (in the stealth column) incubation period may be indeterminate, indolent or asymptomatic carriage, engages the innate immune system, avoids or manipulates the adaptive immune system, etc.

Then the article goes on to describe several microbes that use stealth tactics to establish chronic infections. Bartonella is one of them. Borrelia was not included but fits the profile very well.

It also describes situations where some of the 500 or so bacterial species that inhabit us can switch from commensal to pathogenic.

What they are pointing out in this review article is that the stealth pathogens need more study. Meaning that some of the questions we are asking do not have answers at this point. And chronic diseases need more research. Which we certainly know!

A quote from the end of the article:
"Gaining a thorough knowledge of chronically infecting microbes and learning how to control them is perhaps the greatest challenge."

(If I keep on editing this message forever, maybe everything will get spelled correctly. Can't spell anymore.)

[This message has been edited by lou (edited 02 February 2005).]

[This message has been edited by lou (edited 02 February 2005).]

Heres another. http://mmbr.asm.org/cgi/reprint/61/2/136.pdf

quote:

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Originally posted by Linda LD:
I have had lyme disease since I was a child.

Yes, you can have lyme and look great, be active, feel great. It is only when your body gets really run down that you are going to realize something is really going wrong with your body.

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Was dxd with Lyme 4 1/2 yrs ago and am now doing very well.

My point is that I lead a "full life", playing softball, tennis, etc as a child, went to college, taught school for 21 yrs, etc, etc. My body kept the Lyme in check for the most part.

Then I had surgeries and everything fell apart. If I'd had children, it probably would have fallen apart at that time instead of later when I had surgery.

So I say treat a positive test until no symptoms are present for 2 months or more. I would also pay close attention to the Lyme specific bands. If those are present, don't ignore!

Just my opinion.

Your article is so interesting that it is tempting me to forget the cost of Dell ink cartridges.

Interesting that he was identified in your article (l997) as being associated both with Stanford and the Rocky Mtn. lab, but in my article (2004) only with Stanford. So he is an alumnus of that illustrious lab that was also home to Willie B.

quote:

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Originally posted by lou:
Tree - Falkow was a co-author of both the article in Nature and the one in your link. Go Falkow!!!

Your article is so interesting that it is tempting me to forget the cost of Dell ink cartridges.

Interesting that he was identified in your article (l997) as being associated both with Stanford and the Rocky Mtn. lab, but in my article (2004) only with Stanford. So he is an alumnus of that illustrious lab that was also home to Willie B.

Do you ever get the feeling that the lyme community is better read in the scientific literature than the Steere crowd? Steere fiddles when he should be reading.

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