posted
Hi my name is Sandy. I was just diagnoced with Lyme disease and was wondering if I had the standard testing for this disease? I tested positive for both the IGg and IGm on the Westeron Blot test. The test was sent to a lab in CA (I don't know if we're allowed to say names or not).
Is this a pretty reliabale test?
Do you think I need a second oppinon?
I'm having a hard time beleaving I really have this. If anyone can help me I would really apprecheate it Thank you! Sandy
Posts: 56 | From Washington State | Registered: Feb 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hello and welcome :-)
Sounds like you were tested by Igenex. do you have a copy of the test results. If not you should get a copy, they are good to have for future reference etc.
Do you have a lyme literate medical doctor? Do you have any lyme symptoms?
Who made the official diagnosis?
Most have a hard time believing they have lyme. Mostly i think its because the public has instilled in us that it is "a flu like" illness.
I encourage you to read as much as you can here and post any questions you might have.
I was diagnosed in November 2005, so im fairly new to this too.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
Welcome Sandy to the lyme board; you are in a great bunch of company. Yes, Igenex is excellent, and that is where I got my diagnosis in 6-04 after being misdx for 34 years!
Sandy, it's been 1.5 years and I'm still in disbelief! But when you go back to your symptoms, and check the link below showing ALL the symptoms, you can remember when you were really DEATHLY SICK; I do.
I'm copying/pasting a bunch of info here. When you go to TREEPATROL'S NEWBIE SITE, look for the meaning of western blot numbers! That's why it's important to get copies of both igm/igg from your dr. who diagnosed you.
Also make sure you tell the dr. he MUST report your lyme disease to your state's health dept.; my md didn't know this but did do this for me! I want to be counted.
Welcome to this 24/7 LYME support group board! Here's TREEPATROL's and tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier.
I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
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 CALL for their current prices effective OCT. , 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! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
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!
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 labs from Florida, www.bowen.net 727.937.9077 You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get 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.
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!
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, Sandy and welcome to this board!
I could really empathize with your comment about disbelieving you have this; I felt the same way. Sometimes I still do, especially when I run into someone I haven't seen in awhile.
In some ways, it has been like walking into an alternate reality.
There's a LOT of information. It can seem overwhelming, and being overwhelmed can add to stress (stress, if you haven't heard, exacerbates the Lyme symptoms).
Just take it slowly. As cant suggests, get a good doctor (a Lyme literate doctor in your state) and just start following whatever treatment plan your doctor suggests.
Come here, ask questions, learn what you can, complain or just talk. It's a gift to have an entire community of people from all walks of life who understand exactly what you're going through.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
IGeneX is very reliable and a positive is a strong indicator. Also look at the "Testing" portion of my site below for more details.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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