Which place would be best, Igenex or Bowen? (I live in the UK, so will send blood via fedex). What tests should I ask them to perform? Er, and - should I get them to test for co-infections, also?

Since ive never had any 'symptoms' per se since i started the doxycycline (only the rash) - im confused as to what could be lyme and what is doxy side-effects. everytime I take a doxy, i feel weak for about 1-2 hours. I sleep feverishly, but with no fever, and have a permenant background nausea, fatigue and 'weak bones'. My body also heats up till I have a temperature, especially at night. A few hours after doxy, I begin to feel a bit better. Coupled with the intense heat in my body, comes lots of old emotions from when I was young (I didnt have the best childhood) intense anger & sobbing etc. Can anyone relate to this, or am i just weird?

Does anyone actualy get better from lyme? I mean, ive just never read any 'im lyme free & healthy' letters. Is this because they are leading happy, fulfilled lives somewhere and not posting on forums? Or not? (maybe we someone shoud round them up and force them to post, 'im symptom free' testimonials for the rest of us - or maybe i havnt looked hard enough! .

Re: sex - assuming my test is positive, and I have lyme - does this mean i cant have unprotected sex with anyone again, without risking giving them lyme? Does symptom-free mean spirochete-in-semen free also? (i guess there may not be many firm answers to this one)

Sorry for all the questions.Thanks to everyone who has taken the time to post answers to this pestering lyme newbie

All the best to you all

Angus.

These are totally different testing for LD.

YOu can go to the www.igenex.com site yourself and print out the forms and have you doctor order a blood draw and you call and get the amount you need to send in with the blood and whala, you'll get your results in about 3 weeks.

Rosemary

Bowen might show Lyme earlier. You can test there for both Ehrlichea and Babesia, but not Bartonella. They are only a research lab, so may not be accepted by some doctors, and insurance will not pay for them.

Igenex is more accepted by doctors and insurance. They have multiple ways to test for each organism, including Bartonella, but it can get expensive. They do not accept insurance (except Medicare), require payment up front, but will provide a bill to submit to your insurance.

If your doctor's office doesn't draw blood (many LLMDs offices do) you may have a hard time finding a lab that will do it for you.Blood should only be sent Mon-Wed, maybe not even that late in the week in the UK. Not sure how much of this is pertinent to the UK.

Do you know that the CDC considers a bull's eye rash confirmation of Lyme? No tests needed. Testing for co-infections is important, but you need to know that many doctors don't know how to interpret ANY of the tests, even the ones from Igenex.

Does your doctor know that your Western Blot could come back negative, but because of your rash you have a documentable case? This is very important, given your situation.

Riversinger is correct. No test will show positive results for at least 6 weeks after bite. No LLMD would perform testing so early since bite.

Ditto --- if you have the Bull's eye rash------you have Lyme Disease.

If your LLMD does testing after 6 weeks he might choose Igenex.

Here's my experience: If you have Igenex testing, start with the ELISA & Western Blot for Lyme. (You don't have a choice because Igenex always does the Elisa & Western Blot together; you have to pay for both!) The ELISA is worthless, but that's the system. No test is diagnostic for Lyme.

My LLMD gave me 2 weeks of Zithromax to pull the Lyme bacteria out of the tissues so it has a chance to show up in the blood work. Only then was my Igenex Western Blot CDC positive.

Please note: The year before I had a regular doctor do the Igenex with no antibiotics previous to testing & my test was negative. I stupidly went a whole year thinking I didn't have Lyme because my test was negative. I was wrong.

A year after my positive IGENEX, my LLMD is doing the Bowen Test which tests for Lyme, Babesia & Erlichiosis.

It's $250 & FED EX overnight shipping. It will show bacterial load. You can have Babesia & Erlichiosis in your system, but it still may not show up as positive on this test or any test, for that matter.

Even if you do all these tests & they're negative, you can still have Lyme. A Lyme Literate Doc will know that. He will diagnose you according to your symptoms. It's a clinical diagnosis not a lab-determined diagnosis.

Those tests can be a trap into making you think you don't have Lyme, but you may, in fact, have a severe case.

The real key is to find a Lyme Literate Medical Doctor. He will determine about doing testing for co-infections. Some LLMDs agree to treat co-infections without having positive testing for them.

Remember the LLMD will treat you according to symptoms-------not test results.

Keep asking questions. We all really want to help so you can get better really fast.

Other, more savy Lyme patients will visit your post & provide links to other good websites.
Take Care,
Jan

I read iin report recently she is the only 1 that has the most accurate testing on this.

Very expensive eqipment,I know, since we worked together a few times.

She has dedicated her entire life to research. No fam.,kids. All Medicine

I am not kidding you name the degree she has it on her wall. Not even all them since took up entire wall.

She has lyme & a true vested interest

She just pushed the limit on this lyme matter, including Govt. That is why she has to work & run lab herself. You can see pics if you are lucky enough they are showing.

Check out her website.

I am not as familiar with Igenex, do know they are also respected. Dr. at Bowen has spoken all over the world.

She is a No nonsense person. But you will not have interaction with her anyway.

I filled out the forms myself, and never ordered the ELIZA from them. I would think that if they did as you say, always doing an ELIZA with their WBs, then there would be a place to order this test and it would come with results. The ELIZA is useless in determing LD, so, why would they do that extra cost unless you are paying.

And, my daughter and two granddaughter's results from IGENEX did NOT include any information on the ELIZA.

Where are you getting this information? Just wanting to "set the record straight", but, if you have personal inside knowledge of this, please let us know where you got this information. It's just from my experience of personally seeing 6 WBs from Igenex that I am making this statement.

This is not the case with the Bowen test.

Also, via the generosity of Dr. Harris, my daughter did research with his lab for her AP Biology year long project. The lab is as advertised. Professional, cutting edge, human. I live near by so go there for my blood draws.

As to sexual transmission. there are no peer reviewed studies yet, but I believe that it's definitely possible. My honey got lyme from me...had to. He is a computer geek in Silicon Valley, doesn't venture outside, much less to the great outdoors.

My LLMD in San Francisco says that almost all partners of his lyme patients become positive for lyme, and advises using condoms.

You do not have to be off of antibiotics prior to a Western Blot test.

The HMO and lab screw up comes in the pathologist and PhD interpretation of the tests. The usual Labcorp tests are interpreted (only sometimes which I find very interesting) by CDC reporting standards. These standards will give a negative or equivocal response the majority of the time. Labcorp reps give their "interpretations" based on who is ordering and paying for the test. Igenex never does this.

If your doctor orders through Labcorp, they must specify that the lyme and coinfections blood work be done by Igenex, and a special draw fee is charged by Labcorp. You also then prepay for the Igenex test by providing a credit card number on the form at the Labcorp draw center.

FYI, in the bay area, my blood work drawn by Labcorp never made it to Igenex twice last Fall..postponing my new babesia diagnosis by almost six months! Lapcorp billed me for the tests that they never sent on to Igenex.

If you do go to one of these places, it helps to have Igenex send you the test kit needed for the tests you will run. That way you have requisition forms, tubes, packing material, and the information the lab needs on prep and shipping of blood or serum.

As to antibiotics before testing, sometimes it suppresses antibodies, sometimes it increases the. I have heard there is a greater chance of suppression in someone newly infected who was immediately treated, but I don't know if it is true.

The nurse & I check off the form & ordered ONLY the Western Blot & I sent my check with the blood. I thought I was paid in full. I felt really guilty spending all this money & I wasn't working.

Well, then I get a statement from IGENEX saying I owed money for the ELISA test. That doubled my bill.

I was furious & called them. They said they ONLY run the Western Blot & ELISA together & I had no choice but to pay for it because it was already done. I called my Nurse at the OB-GYN's office & asked her if she had ordered anything extra? She said no, but you better pay the bill anyway.

Anyway, I wrote a nasty little note on my IGENEX bill & told them it wasn't right to make someone pay for something they never ordered. I paid my bill.

After all that bull, I was able to file the 2 tests on insurance & nearly fainted when they reimbursed me for it.

Well that's what happened to me. I ordered one test because I didn't want to spend more money. We didn't have it to spend. I felt like they had pulled a double whammy, but what could I do?

It only got me a negative test until I found an LLMD who ran a comprehensive Lyme Test for $640. Hope that helps explain things.

Take Care,
Jan

I had my tests done at Igenex in 2003, and had no trouble doing only a Western Blot. What they will NOT do, is only an Elisa. Then they insist on doing a Western Blot with it.

nuff said zman

I'm a newbie here & I very much appreciate all the help provided on this board----it's priceless.

You're both very well-versed & much more up-to-date than I am on the subject. But Riversinger, I don't really need to look up the IGENEX form though------I already believed you anyway. You obviously have tons of experience with IGENEX.

My experience with IGENEX was based on old information in 2002, but it was still my experience. I didn't dream it up.

I did not state in my first post that my first Igenex testing was 2 years ago in 2002. Their Testing Policies in 2002 relative to the ELISA & Western Blot were obviously very different than in 2003.

As for "insider" information-----all I know to tell you is that when I called on numerous occasions to complain about being billed for something that was never ordered, they told me this: If you order a Western Blot you automatically get an ELISA-----back then in 2002 it was a packaged deal.

That was my point. My first test was back in 2002.

I realize it's hard to believe, but it was hard for me to believe, too. IGENEX said they didn't even need a Doctor's order for the ELISA because patients automatically get the ELISA when the Western Blot is ordered.

I am not confused about this in the least. I went round & round with them. And again--- no, my doctor didn't add any additional test.

IGENEX told me it was their laboratory policy & I didn't get a say in it. I was very appalled by it all; and you're right, it seemed so senseless & wasteful.

Prior to testing, I had at least read the website www: matthewgoss.org and it stated the ELISA was useless. So I set out to get a Western Blot & I filled out the form myself. The nurse & I proofread it.

Just prior to testing in 2002, I called IGENEX to get the latest fee for the Western Blot. They never bothered to inform me I was going to get the ELISA test automatically, thus increasing the fee.

Did either of you happen to have a Western Blot performed in 2002?

And yes, you're right on about the 2003 testing. My Comprehensive Lyme Panel in May 2003 showed no ELISA results either.

Sorry to cause so much confusion.

If this is still a major concern, maybe you might want to check it out with Nick Harris at IGENEX and ask what their policy was in June 2002.

Heck, I'm just glad struggling patients aren't forced to jump through hoops anymore to get that sacred Western Blot by being forced to pay for a useless ELISA test like I had to.
Makes sense to me.
Take Care,
Jan

I have a couple daughters still in their employ and I'll give them a call and we'll just find out where the heck LabCorp is doing there testing for this specific test panel.
You could very well be right and I wrong because I did hear they bought up some other labs. The labs I heard they bought up though were inferior to their own capabilities. Then again i don't know for sure. i will check it out and get back to you all.

the zman