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» LymeNet Flash » Questions and Discussion » Medical Questions » Newbie - What Test to Get

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Author Topic: Newbie - What Test to Get
Cruisin97
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Hello.

After a couple of days of looking around, it appears this is a well-run board with a wealth of information and caring people.

So much so, I was inspired to register and also motivated to call my Dr. and schedule an appointment for a Lyme Test.

Since it is tomorrow (NO, I'm not a procrastinator, I called yesterday and they had an opening), I am wondering what test to request. I have heard and read (either here or 1 other Lyme BB) that most tests aren't not very reliable.

Thanks in advance for the advice.


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DJP
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I think most LLMD's recommend the Western Blot.

Send the bloodwork to Igenex, not your local hospital or lab the doctor's office uses.

Your doctor may resist, but insist on Igenex. I think you can download a form from their site.

Look at the newbies link for information about the Western Blot and which labs to use and why.

How long has it been since you were bit? I think you can test negative if you test too soon.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Good luck.


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Kara Tyson
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There is NO test (Lyme or otherwise) that is 100% accurate.

Lyme tests have many false negatives and occasional false positives (for gum disease and syphilis).

But the major issue with Lyme is a misunderstanding about the testing itself.

The Lyme 'test' is an antibody test only. It will tell you whether or not you are making antibodies. Not if you are infected.

Many Dr.'s/labs will say you are negative by CDC standards if you dont have 5 positive bands. This is inaccurate. Less than 5 bands only means you cannot be included in CDC statistics (the CDC tracks a certain % of patients who make antibodies).

Dr.'s who treat Lyme on a regular basis tend to use specific labs that they can trust. Many labs are poorly run, use old kits, and dont use certified lab techs.


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Cruisin97
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Thanks for the quick replies and advice. I'm not aware of when (if?) I was bit as I didn't get the rash or flu-like symptoms.

However, over the course of a few weeks, there were a bunch of things happening slowly such as profound fatigue, not related to how much/little sleep, weird aches and pains in feet, 1 knee, 1 or both elbows, and others, equally as weird such as 1 glass of wine creating what feels like a huge hangover the next day.

At first, I attributed to working crazy hours, extra physical work around the house, getting old, etc. until there was a week or 2 of just feeling lousy. Then suddenly, I felt great for several days.

I'll check into what labs my dr. uses.


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treepatrol
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Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
BostonLyme2005
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Hey,
I also had those symptoms at first. I would use Igenex, I am doing so soon.

Rob
DONT WAIT TO GET ON ABX!

quote:
Originally posted by Cruisin97:
Thanks for the quick replies and advice. I'm not aware of when (if?) I was bit as I didn't get the rash or flu-like symptoms.

However, over the course of a few weeks, there were a bunch of things happening slowly such as profound fatigue, not related to how much/little sleep, weird aches and pains in feet, 1 knee, 1 or both elbows, and others, equally as weird such as 1 glass of wine creating what feels like a huge hangover the next day.

At first, I attributed to working crazy hours, extra physical work around the house, getting old, etc. until there was a week or 2 of just feeling lousy. Then suddenly, I felt great for several days.

I'll check into what labs my dr. uses.


------------------
Rob


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bg
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Cruisin, more info for you.....

Read over Tree's co-infection list and see if you have a lot of those symptoms; if yes, I'd consider doing co-infection testing NOW too. I'm not a dr....been misdx for 34 years until 7-04!

Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.

print & read Dr. B's (a lyme literate MD) info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Some guidelines from Betty/others on using this message board:

* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.

* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
*
* LYME SYMPTOMS - http://www.lyme.org/otherdis/ld_symptoms.html

Bettyg, Iowa
=============================================================
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:

IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.

(If the early test, called IGM, is negative; the later test IGG is NOT done!)
Please see their web site: www.igenex.com for their current prices effective May 1, 2005 and

to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices!

Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!

NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.

Medicare patients do NOT have to prepay!
7-24-05...CALL 1ST ABOUT MEDICARE; just read today someone having troubles w/medicare paying!

2. MDLabs from NJ, www.mdl.net
see their site; they too require their own form. NO prices are listed; you must call their 800 no.

3. BOWEN RESEARCH lab from Florida, www.bowen.net 727.937.9077
Dr. must call Bowen for their 13 pages of instructions; patient completes 5 sheets; dr. 1 page.
You pay $250 tax-deductible payment for testing (lyme, babesia, & ehrlichia), and they send you a picture of what shows up in your blood. Dr. gets the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures to MD.

NOTE: Bowen - I was disappointed in their not sending an explanation with their report showing if you are positive or negative and their number...mine was 1:64!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.

NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).

FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!

bettyg, Iowa


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Cruisin97
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Thanks for the reply.

Haven't been here in a while. This is quite an active board. I'll have to read the info on these links.

Went for blood work nearly 2 weeks ago. Have a dr. appointment later in the week to find out results.

They used Quest Labs. It appears they aren't too highly regarded here. But we have to start somewhere.

I took advice of this site and got blood drawn early on a Monday morning.

I'm guessing the results will be negative. So, then I guess I'll press for an Igenex test.

Anyone know how much that costs and is it covered by insurance?

Any difficult questions, feel free to pass along.

Meanwhile, haven't had any symptoms for the past 2 weeks, except for a bit of fatigue due to a couple of late nights at work and several James Bond movies on AMC


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Michelle M
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Your Quest test will likely be negative. Mine was. Many on here had negative tests by Quest. Not worth the paper they're printed on... (In my opinion, no disrespect to your doc, who probably doesn't know any better.)

Now, order the IGeneX kit. Get your Doc to sign the authorization. March down to your local lab. Rip out your credit card and prepare to spend about $180 or so. Ask for the IgM and IgG tests. Give the collection kit to the lab and roll up your sleeve! In a week to 10 days they will fax the results to your doc. You may be highly surprised to find them radically different than Quest. They test MORE bands than Quest, plus they use 100% pure Lyme antigen -- they don't water theirs down to save money like cheap labs do. Makes a world of difference.

Your insurance will hopefully reimburse you at least partially because your doctor requested it.

Please do it. Otherwise you'll never know.

Best of luck and keep us posted.

Michelle


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Lymetoo
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quote:
Originally posted by Michelle M:
Now, order the IGeneX kit. Get your Doc to sign the authorization. March down to your local lab. Rip out your credit card and prepare to spend about $180 or so. Ask for the IgM and IgG tests. Give the collection kit to the lab and roll up your sleeve! In a week to 10 days they will fax the results to your doc. You may be highly surprised to find them radically different than Quest. They test MORE bands than Quest, plus they use 100% pure Lyme antigen -- they don't water theirs down to save money like cheap labs do. Makes a world of difference.

Your insurance will hopefully reimburse you at least partially because your doctor requested it.


Ditto! Agreed!! My insurance covered Igenex.

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


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Cruisin97
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Well, got the results of the blood work from Quest and everything is fine.

That and no symptoms.

Still, the dr. was receptive to my concerns.
Mentioned an ELISA if I want further testing or if an symptoms recur.

Any opinions on that?


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Lymetoo
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quote:
Originally posted by Cruisin97:

However, over the course of a few weeks, there were a bunch of things happening slowly such as profound fatigue, not related to how much/little sleep, weird aches and pains in feet, 1 knee, 1 or both elbows, and others, equally as weird such as 1 glass of wine creating what feels like a huge hangover the next day.



What about these symptoms?? Gone??

The ELISA is no better than Quest labs. And I think Quest runs most ELISA's. Not worth the paper they run the results on.

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu


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Cruisin97
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Yes, symptoms are gone. It's been 3 weeks.

They crept up slowly enough that I could explain away by attributing to extra physical activity, working overtime, getting old, and so forth.

Then they disappeared over the course of less than 24 hours. Started to feel a lot better on one afternoon while at work. Slept great that night and the next and here we are.

Dr. said to contact if symptoms return and document what,when, activities, weather. etc.

Strange, isn't it?


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