Lyme - Igenx - Questions

[ShayFL]

I am now going to investigate Lyme. I googled LLMD + Tampa to discover an expert in infectious disease literally 3 minutes from my house. Right up the street. So if I have Lyme, I know I will be in good hands. I called them and they are sending me a package to fill out. They use IGENX for testing and they work in conjunction with my primary care doctor. So if I have Lyme, the LLMD will prescribe the protocol and my Primary doctor will administer it. And she is really good about these types of things, so I know she will work with me and another doctor very well.

When a few people first mentioned Lyme to me, I thought there would be no way I would have it. But as a child I grew up in the country. We played in the pastures and woods everyday and my Mom did tick checks every night before we took our baths. I do not remember her ever finding any on me (but I remember once on my brother) and I dont remember ever getting sick. I have visited my Ex's relatives in Connecticut about 12 times. I was aware of Lyme up there and took precautions, including making my Hubby check me every night for ticks. I wore long pants and didnt walk in the woods in CT at all.

So there is a possibility and at this point I do want to be able to rule it out.

Has anyone used IGENX and tested Negative???

Does everyone who tests with IGENX come up positive???

Are there false negatives??

False positives??

How common??

What is the best test to order???

Western Blot?

Anything else??

How long does it take for results??

If you have been Dx Lyme, what has been your treatment??

Is it working??

Anyone cured??

How has the Herx been??

And anything else you care to add......

[dlp252]

Has anyone used IGENX and tested Negative???

Does everyone who tests with IGENX come up positive???

I have heard of people testing negative

Are there false negatives??

False positives??

I think it's possible, but if Igenix is used it is less likely...the problems usually come from the doctor's interpretation of the report

What is the best test to order???

My doctor ordered both western blots (IgG and IgM)

How long does it take for results??

I think mine took 2 weeks...maybe 3

If you have been Dx Lyme, what has been your treatment?? Is it working??

I've been on herbals and supplements because my doctor thought my body would be overwhelmed by aggressive treatments, and he was right, lol

Carla is our residence expert, but she's got somewhat limited Internet access so may not see this for a while. You can also ask this on lymenet . org

I'm feeling significantly better since beginning treatment even though it is herbal and supplements, but I've got a lot of other stuff going on with the lyme so it's not going quickly. There is a lyme thread in the leaky gut section you can check for information and lymenet is also good.

[Rachel--24]

Has anyone used IGENX and tested Negative???

All kinds of people test negative but this does not rule out Lyme Disease. I had some positive bands but my test was negative.

Lyme testing is not black and white and this is why Lyme is primarily a clinical diagnosis....based on symptoms and history. These tests cannot be used to rule out Lyme.

Does everyone who tests with IGENX come up positive???

Definately not.

Are there false negatives??

All the time.

False positives??

Not that I'm aware of. If the immune system is producing antibodies against specfic "parts" of the bacteria....well, there is no reason for that to occur unless the bacteria is *there*. Some antibodies are less specific to Borrelia....some are VERY specific.

For example....on the Western Blot it's very common for band 41 to be positive. This is the first band to become positive when a person has Lyme...HOWEVER, this band can be positive as a result of other bacteria as well. It is not *specific* for Borrelia. Band 41 represents the tail of the bacteria (flagella) and lots of bacteria have a flagella.....not just borrelia.

Then there is band 39 which is the most specific band for Lyme. If you have a positive band 39...there is no question.....there is no other bacteria known to cause this band to be postive.

I dont believe that there is any such thing as a false positive Lyme test...however, most people with chronic Lyme have many additional factors contributing to the unwellness. So, this means that having a positive Lyme test doesnt necessarily mean this is the cause for all symptoms. Chronic lyme is mutifactorial.

How common??

Very common for false negatives....never heard of a false positive....and Lyme in general is a VERY common underlying issue in chronic illness.

What is the best test to order???

IgeneX Western Blots (IgG and IgM)

Western Blot?

Yes

Anything else??

Co-infection testing is essential for anyone who has Lyme....but first you need to determine whether or not Lyme is an issue. Co-infections are the rule....not the exception. Co-infections have to be diagnosed and treated.

CD57 (LabCorp) is a useful test....I would recommend it

How long does it take for results??

A couple weeks.

If you have been Dx Lyme, what has been your treatment??

I had alot of testing to try to determine how much of a role Lyme is playing in my health issues. It was a lengthy process but I like to be thorough. My Dr.'s and I came to the conclusion that Lyme is not a significant factor for me at this time...although I have been exposed.

I was taking antimicrobials (no antibiotics) for a period of time but most of my treatment was (and still is) focused on detoxification.

Is it working??

Lyme was never a major issue for me...now it appears to be even less of an issue.

Anyone cured??

I dont know if anyone ever actually "cures" Lyme Disease. The bacteria is present in many healthy people....it only becomes a problem when the immune system is not able to keep it in check. Its an opportunistic organism and as long as the body is compromised in such a way that allows this bacteria to become an issue...it will continue to be an issue.

You cant get rid of the bacteria completely....however, if your immune system is strong enough to keep it in check...then symptoms can resolve. If for some reason the immune system is not able to handle it....it will keep coming back.

How has the Herx been??

No herx's for me.

And anything else you care to add......

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

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Positive results depend on anitbody production....the state of the immune system at the time of testing has alot to do with whether or not results are positive. Some of the sickest Lyme patients do not test positive....simply because the immune system is overwhelmed and unable to put up a strong fight.

[hiacynth]

I want to say I am so glad you found a LLMD close to you.

Has anyone used IGENX and tested Negative???

I used IGENX and had positive bands but not enough that the CDC require for their protocol for having Lyme

What is the best test to order???

If your going to a LLMD they will probably let you know which one

I would definitely get tested for co-infections

This did come up positive on mine for Babesiosis

How long does it take for results??

I think this is a case by case as every person with Lyme varies and the severity and stage of the Lyme

and also if your dealing with co-infections

If you have been Dx Lyme, what has been your treatment??

I was on different antibiotics for 2 years

They would mix them up every couple of months usually 2 sometimes 3 different ones at a time.

I also had a pic line for 3 months (which I believe is what finally got me back to as normal as I will get)

Anyone cured??

I got much SOOOO much better. Cured I don't think so

How has the Herx been??

One thing with herx is it timing you can usually plan around them

Mine were pretty intense. But I kept telling myself it's all for the good it means your killing the Lyme

Some say if your testing was inclusive a Herx is a telltale sign of Lyme