LymeNet Flash: Blood test questions...

This is topic Blood test questions... in forum Medical Questions at LymeNet Flash.

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Posted by PatioGazer (Member # 5650) on :

A couple questions about blood testing for Lyme disease. First, I understand that something like only 35% of people with Lyme actually test postive on the "basic" test. What is the name of the "better" test that is available now? And second, does anyone know of a place where this test is offered without going to a doctor? (...such as ordering the test online myself.)

Thanks!

Posted by tvalentijn (Member # 5255) on :

I would not screw around trying to do your own test. LD is a clinical diagnosis. Go to a recognized LLMD (Lyme Literate MD). You can find one through this website.

Posted by duke77 (Member # 5051) on :

The basic test is called the ELISA and its not worth the paper the result is written on. You said 35% test positive on the ELISA, honestly it is less than that.

I don't know about giving yourself the test. If you know a dr or nurse (someone who can extract blood) you can send away for an igenex or bowen labs test kit and then overnight them the blood samples. IGenex and Bowen are probably the most respected labs.

I believe there are some good labs in Canada too that you can get a kit and send your blood sample too. (A canadian lab through canlyme foundation is how a friend of mine finally convinced her doctors it was Lyme. They kept telling her Lyme is not common here and your ELISA test was negative. They were refusing to do any other tests because the ELISA was negative.)

A more accurate test than the ELISA would be the Western Blot antibody detection test. Another very accurate test is a PCR antigen test. THis might just be the most accurate test if the lab doing the tests are competent (IGenex and Bowen are okay). The problem with the PCR is that the organism actually has to be in the blood at the time of the test. Lyme doesn't spend much time in the blood stream. So there are a lot of false negatives with the PCR. Although, when you have a positive with the PCR it is positive. It is comparable to a pregancy test (u can't be partially pregnant its all or none).

[This message has been edited by duke77 (edited 10 May 2004).]

Posted by PatioGazer (Member # 5650) on :

Thanks for the comments and info. I realize that ordering my own test and having the blood drawn may not be the best choice, but sometimes it seems like the only alternative that I have. I don't know if I have Lyme, but I have a whole cluster of symptoms that no one can tell me what they are from, how they all fit together, or what to do to get rid of them. I am tired of going to one specialist after another, being put through a battery of tests, being charged a whole lot of money, and then being told that they can't help me or to schedule an appointment for another six months and to wait and see how I am doing then. I have lost the last three years of my life to whatever is happening to me, going from appointment to appointment, and I am just tired of the doctor-go-round. I would just like to get the tests done and see what they show. I don't plan on trying to treat myself, I just want to get the tests done on my own. If I got positive results, then I would follow up with one of my doctors or an LLMD - the difference this time would be that I would have some proof in my hands that might get one of them moving in the right direction. I am just tired of having to fight to get tests ordered.

Having said that, I will post asking for LLMDs in the Pittsburgh area. But if anyone knows of a site that will let me get the tests done without the middleman, so to speak, please let me know.

[This message has been edited by PatioGazer (edited 10 May 2004).]

Posted by TexLyme (Member # 5640) on :

I am in the same position as you...waiting for answers that no one seems to have. I ordered the test from IGeneX myself. It just came to my door on Saturday. I am taking it to my doc next week when I go for a follow up and will ask her to sign the forms so I can get the test done, at my own expense. Call IGeneX.

Posted by JillF (Member # 5553) on :

How much does it cost to get the IgeneX testing yourself?

The LLMD I saw said it would be over $1100 to get tested through his lab, so he is having me go through LabCorp because of my health insurance.

I've heard only bad things about LabCorp (they screwed up one of my tests in the past), so I'd prefer to have my blood tested at IgeneX or Bowen.

But if it is $1100+, it will have to wait...

Posted by V. Owens (Member # 5380) on :

quote:
Originally posted by JillF:
How much does it cost to get the IgeneX testing yourself?
The LLMD I saw said it would be over $1100 to get tested through his lab, so he is having me go through LabCorp because of my health insurance.
I've heard only bad things about LabCorp (they screwed up one of my tests in the past), so I'd prefer to have my blood tested at IgeneX or Bowen.
But if it is $1100+, it will have to wait...

Good day all,

It cost us 180.oo paid up front for lyme IgM
WB. and lyme IGG WB or 90.00 each.

IGeneX, INC. 1 800 832 3200

Posted by rosesisland2000 (Member # 2001) on :

quote:
Originally posted by JillF:
How much does it cost to get the IgeneX testing yourself?
The LLMD I saw said it would be over $1100 to get tested through his lab, so he is having me go through LabCorp because of my health insurance.
I've heard only bad things about LabCorp (they screwed up one of my tests in the past), so I'd prefer to have my blood tested at IgeneX or Bowen.
But if it is $1100+, it will have to wait...

Jill,

The IgG and IgM from Igenex is $180.00.
LabCorp is useless in that it doesn't test all the specific Lyme bands... Igenx does.

Go to www.igenex.com and print out the forms and take them to your doctor. If you have to go somewhere else to have the blood drawn, then he will write the script for that and a script for the IgG and IgM testing. You do NOT need the kit.

My daughter ordered the kit and it didn't have anything different in it than that of their website. The tubes, any blood draw lab or if at you docs office, will have the correct red top tube needed.

It's real simple and why waste time getting the kit when it is no different than the website's forms.

BTW.you are NOT seeing a real LLMD if he is sending your blood to LabCorp...seriously, consider a real LLMD recommended by someone here who is a happy client of that LLMD.

Rosemary

Posted by Curley911 (Member # 2205) on :

Hi PatioGazer, just reading your name makes me want to sit on my patio, relax and enjoy the day :-)

I just looked up the distance from your location to my LLMD in PA. It is about 78 miles. He accepts the Bowen test as the GOLD STANDARD of tests and is an incredible Dr. Many of us from N. FL travel to see him and looking around the table of our support group, I've seen the results of his work.

Just yesterday a young woman who I helped get diagnosed sent a college graduation thank you to those of us who helped her get where she is today. She was very ill and she totally credited this Dr. for her wellness.

Bowen is seeking FDA approval (VERY EXPENSIVE) and is very accurate for lyme diagnoses as well as picking up babesia and ehlichia.

There is a medical book about stealth pathogens and cell wall deficient form bacteria that was up for the Nobel Prize. Included in this book is pictures of the borrellia bacteria from the Bowen Lab. VERY reputable.

The trouble some people/drs have with this lab is they get alot of positive results. They forget people are very ill by time they get to the Bowen test and they also forget lyme is a cousin to syphyllis . . . therefore transmittable as all get out.

Many walk around with the lyme bacteria and are symptom free, stress can set it off such as having a baby. (stress to the body and lifestyle).

The Bowen test requires a written request for bloodwork and the Bowen Lab will send a kit to mail the bloodwork back in. It is $250 and tax deductable. Insurance will not pay for it as the lab is a research lab. They reverted to a research lab to keep the government watchdogs at bay and for the ability to keep functioning.

Write me if you'd like my Dr.s name. He is reasonable in price and very patient and kind. He also treats children.

Posted by JillF (Member # 5553) on :

Wow. I can handle $180. I was expecting it to be like a qatrillion dollars.

If it's only $180, where did $1100+ come from? I had three different doctors quote that price to me for labs, and all three doctors were referred to me as LLMD's.

I'd prefer to pay $180 vs. using free LabCorp.

Thanks!!!

The LLMD I decided to go with is also in PA.

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