Lyme Disease Support Group

BERS!!

..... did add 1 more testing lab![/b]

FRY LABS, ARIZONA...GREAT FOR BARTONELLA & BABS TESTS FOR $250 vs. almost $1,000 at Igenex!!

8-19-10 added more info about BAND 41; interesting!

**************************************************

Tracey,

From what i just read as i skimmed your reply was this, you need to get the WESTERN BLOT IGM AND IGG BLOOD TEST bood test drawn and sent to IGENEX, PALO ALTO, CALIF. for testing for lyme disease.

there are other tests for CO-INFECTIONS and additional $$ for that too.

since i original post was edited, i don't know what is in there or not, as i gave very DETAILED info earlier!

so i've gone back to MY 50 pages of info, and am copying area i feel you/OTHERS should know about, and take action on to get the western blot igm/igg blood tests done. IT'S A CLINICAL DIAGNOSISI but they will show the 16 protein bands and if they are POSITIVE, IND, or negative!

NEW TEST – BORRELIA LONESTARI by Bea Seibert 8-26-06

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic&f=1&t=045853#000006

IGENEX , CALIF. BLOOD TESTINGS

 Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it’s meant to be informed PRIOR to going into having various tests done and then be told what the costs will be!

 Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.

 Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes

 The below tests were done for ME; you MAY NOT NEED them all ok! :

 western blot IGM & IGG, this is MANDATORY for you which costs $190 total for 2 tests done;

 *******************************************************

 OPTIONAL ONES ARE:

 co-infection panel for YOUR AREA OF COUNTRY;

 PCR WHOLE BLOOD...this is what my LLMD ordered!

It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.

go to www.igenex.com and read over their info.

 Also, call 1-800.832.3200 for CURRENT PRICES!

 They will also send you a “test kit” with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!

What I gave you was 2-06 prices; went up 11-06!

 You need to DOWNLOAD IGENEX’s required form.

 MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he’s ordering the test.

Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg 

 When you get your results, please post them in MEDICAL;

 ONLY the POSITIVE & IND ones ....not the negative ones!

 Also, look for post by LYMETOO/TUTU on DR. C’s (Missouri) explanation of the western blot IGM & IGG numbers. They are listed on another page in my links ok! 

Top 5 lyme/tick diagnostic labs in USA:

1. Igenex, Calif.;

2. MD LABS, NJ; www.mdlab.com

3. EDITING: DELETING Stoneybrook, NYC, SUNY Stonybrook:

www.path.sunysb.edu/labs/ticklab/TICKLAB.htm

NOTE: Stoneybrook's lab, according to lymenet members, has NOT been great for lyme and NOT CO-INFECTIONS! 1-22-09.

4. FRY LABS, ARIZONA ...excellent for babs/bartonella testing for around $500 !!

5. edited 1-22-09, now Florida Labs, formerly Bowen

COMPLETING BCBS HEALTH INSURANCE “CLAIMS” TO SUBMIT TO COMPANY:

*************

1. cross out in heavy marker any info you do NOT bcbs to know; credit card numbers, etc. OR put a post it note on that area.

2. you do NOT have to send certified, etc.

fyi --- des moines, iowa's bcbs LOST my info many times internally and perhaps it is still lost!

nov. 06 i filed with iowa insurance co. a complaint form against bcbs for not paying $4300 out of pocket for my lyme expenses since they would not process any of my lyme claims! they have sat on these, lost them, and denied verbally but not sent me WRITTEN DENIAL FORMS! in 8 months!

3. yes, on each form you complete, show the DATE MAILED WRITTEN IN! you will need that each bcbs asks you this.

what i did is this:

*******************

prepare a MASTER COPY of completed info it requests:

our name, address, phone no., PERSON'S BCBS ID NO. .... make sure you have the ENTIRE NO. WRITTEN DOWN!

I SIGNED THIS ORIGINAL SAVING ME TIME FOR FUTURE ONES.

do NOT date !

i messed up; left last digit off and no one noticed!!

Then i made 12 copies on my scanner/copier!

*******************************************

then i'd complete one PER DR./LOCATION

showing the date done, what was gotten, and then WRITE IN THE TOTAL AMOUNT PER INVOICE!!

EXAMPLES: if you have 2 or more bills from SAME DR., shown them on this ONE claim form,

but after each invoice shown, type of service gotten, write in the $$ amount of invoice.

do this for each one until you have this specific dr/location done

then show a grand total also for this dr!!

****************************************

take one of your other forms for pharmacies; EACH PHARMACY IS SEPARATE!

you can combine the SAME PHARMACIES TOGETHER; again, show the total amount per invoice!!

when done, make copies of:

***************************

. EACH CLAIM FORM

. each billing invoice

note: IF THEY ARE SMALL PIECES OF PAPER, PUT SEVERAL TO "SAME DR. OR PHARAMACY" ON A 8.5 SHEET OF PAPER TAPING THEM TO IT SO THEY ARE NOT LOST.

in my case, i got the name of the lead worker at this bcbs billing station, and sent ALL CLAIMS TO HER; even had typed address label with her name HIGHLITED!

hope this helps you! when done, go thru everything again so nothing is overlooked; have your family help you

double check that bcbs ID NO. and that all 9 digits appears!

now print off everyone's suggestions; place in a file folder for future use ok.

****************************************

UPDATED 7-12-07:

I have now APPEALED $3800 of DENIED wellmark/bcbs expenses for my 3 LLMD appts., body lab testings, & $1,000 of supplements prescribed to me!

I also copied IOwa's INSURANCE COMMISSION, MARKET REGULAR BUREAU ATTORNEY who I've had 2 letters/emails from. So it's BACK IN BCBS's corner again for:

o 2 COMPOUNDED pharmacy meds not paid to date for 07;

o shipping/handling for 5 compouned meds from out of state pharmacies to my home

o $3800 denied expenses above.

-------------------------------------------

Tick Specialty Labs: Too Many Positive Findings?

They Save Lives

By James S., MD, MAR, PA, DABPN, DABFM

I asked Dr. Harris, from the internationally respected, IGeneX labs, to reply to the dubious comment that IGeneX "only has positive findings."

This is not valid for many reasons. First, many physicians using IGeneX get negative results. Further, IGenex has done quality assurance studies with appropriate negative findings in uninfected controls.

And the company, as you can see below, has done a great deal to be certified and licensed.

The "all results are positive comment" is lazy, sloppy and uninformed. Lyme is the leading vector illness in the USA. A positive result should not be rare.

*********

IGeneX, Inc. is a reference laboratory located in Palo Alto, California specializing in Lyme disease and other tick-borne diseases.

We take pride in the quality and diversity of the testing that we perform on samples from around the world.

IGeneX is licensed by CMS (Centers for Medicare and Medicaid Services) and is strictly regulated by CLIA.

We are licensed in all states, including California, New York, Pennsylvania, Maryland, and Florida where special licensing is required.

The laboratory is inspected by these state and federal agencies on a regular basis.

A Ph.D. consultant is also used to ensure that our laboratory is current with all the compliance regulations.

IGeneX participates in all proficiency programs required, such as New York State.

Independent specialty laboratories, such as IGeneX, who have a narrow focus in testing, typically are not certified by CAP, but we do participate in the CAP Proficiency programs.

IGeneX has been testing clinical samples for over 11 years.

The staff consists of a Laboratory Director, an MD Clinical Consultant, and several other MDs who also are licensed Clinical Laboratory Scientists who manufacture and perform tests.

The personnel responsible for the test quality and performance are all licensed Clinical Laboratory Scientists, most of whom have been with IGeneX for many years.

Our Research team is comprised of qualified PhDs and MDs and experienced Research Associates.

Customer Service is our main goal and the office staff is always willing to assist our patients and physicians. We take pride in our trained personnel that have worked together for years.

IGeneX is continually working on the advancement of existing tests.

In addition, IGeneX is committed to designing and researching new technologies and opportunities.

Our goal is to give Lyme patients and their physicians state-of-the-art tools for diagnosis of Lyme and other tick-related diseases.

--------------

[Steve Andison Comment] The Federal Center for Disease Control periodically ships identified samples of what they know to be positive and negative samples to IGeneX to determine the accuracy of their testing procedures.

Their accuracy rate for both positives and negatives is unsurpassed by any facility in the United States and with their state-of-the-art techniques and equipment, they may be the most accurate lab for diseases carried by ticks.

**********************

WESTERN BLOT IGM AND IGG RESULTS EXPLANATIONS FROM

DR. C IN MISSOURI, PLUS BABESOSA TEST NO. & MORE!!

A MUST READ/PRINT FOR ALL from LYMETOO/TUTU !!

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=print_topic;f=1;t=042077

*********************

good luck tracey! also, 3 times i've been dx with LUPUS, but never treated for it!''

"What are the most prevalent symptoms of lyme disease since I have/have had a host of symptoms" you asked:

pain in joints, ligaments, tendons,

chronic fatigue,

SUPER SENSITIVITY TO:LIGHTS, GLARE, AND REFLECITON;

sounds/noises;

chemicals: perfume, after shave, food, DIESEL FUMES, cleaning/office supplies, cigarette smoke, etc.

irritable bowel and bladder syndrome,

migraines,

FOOD ALLERGIES

underactive thyroid

these are the main symptoms i think of right at this moment.

i hope the moderator left my list here of the 135+ symptoms of lyme disease! please study that carefully. bettyg

[/b]

ADDED 5-28-10

disturbedme

Frequent Contributor (1K+ posts)

Member # 12346

posted 11-23-2009 10:04 PM

IMPORTANT INFORMATION ON BAND 41:

Read this, very important for people to read who have only gotten a band 41 or wondered what band 41 could mean:

http://lymemd.blogspot.com/2008/09/all-i-got-was- 41band.html

ALSO:

The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and

they do not have severe periodontal disease or syphilis, they have Lyme borreliosis:

http://www.pubmedcentral.nih.gov/picrender.fcgi? artid=423723&blobtype=pdf

1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: ”

Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,” [b]since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that,

THIS CHANGING phenomenon means “the spirochete remains alive throughout the illness.”

In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.[/b]

--------------------

One can never consent to creep when one feels an impulse to soar. ~ Helen Keller

Posts: 2884 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

Post edited by: Bettyg, at: 11/23/2009 03:26 PM

Post edited by: Bettyg, at: 05/28/2010 12:36 PM

Post edited by: Bettyg, at: 08/19/2010 02:02 AM

Post edited by: Bettyg, at: 07/10/2011 11:51 PM

"I think Igenex Labs was investigated a few years ago for so many positives: they found that Igenex was simply better at finding Lyme."

yes, you are 100% correct!

copying this here from my newbie links with more info on end about something else from igenex ... BIOPSIES!

Tick Specialty Labs: Too Many Positive Findings?

They Save Lives

By James S., MD, MAR, PA, DABPN, DABFM

I asked Dr. Harris, from the internationally respected, IGeneX labs, to reply to the dubious comment that IGeneX "only has positive findings."

This is not valid for many reasons. First, many physicians using IGeneX get negative results.

Further, IGenex has done quality assurance studies with appropriate negative findings in uninfected controls.

And the company, as you can see below, has done a great deal to be certified and licensed.

The "all results are positive comment" is lazy, sloppy and uninformed. Lyme is the leading vector illness in the USA. A positive result should not be rare.

*********

IGeneX, Inc. is a reference laboratory located in Palo Alto, California specializing in Lyme disease and other tick-borne diseases.

We take pride in the quality and diversity of the testing that we perform on samples from around the world.

IGeneX is licensed by CMS (Centers for Medicare and Medicaid Services) and is strictly regulated by CLIA. We are licensed in all states, including California, New York, Pennsylvania, Maryland, and Florida where special licensing is required.

The laboratory is inspected by these state and federal agencies on a regular basis. A Ph.D. consultant is also used to ensure that our laboratory is current with all the compliance regulations.

IGeneX participates in all proficiency programs required, such as New York State. Independent specialty laboratories, such as IGeneX, who have a narrow focus in testing, typically are not certified by CAP, but we do participate in the CAP Proficiency programs.

IGeneX has been testing clinical samples for over 11 years. The staff consists of a Laboratory Director, an MD Clinical Consultant, and several other MDs who also are licensed Clinical Laboratory Scientists who manufacture and perform tests. The personnel responsible for the test quality and performance are all licensed Clinical Laboratory Scientists, most of whom have been with IGeneX for many years. Our Research team is comprised of qualified PhDs and MDs and experienced Research Associates.

Customer Service is our main goal and the office staff is always willing to assist our patients and physicians. We take pride in our trained personnel that have worked together for years.

IGeneX is continually working on the advancement of existing tests. In addition, IGeneX is committed to designing and researching new technologies and opportunities. Our goal is to give Lyme patients and their physicians state-of-the-art tools for diagnosis of Lyme and other tick-related diseases.

--------------

[Steve Andison Comment]

The Federal Center for Disease Control periodically ships identified samples of what they know to be positive and negative samples to IGeneX to determine the accuracy of their testing procedures. Their accuracy rate for both positives and negatives is unsurpassed by any facility in the United States and with their state-of-the-art techniques and equipment, they may be the most accurate lab for diseases carried by ticks.

*********************

[b]BIOPSIES SENT TO IGENEX from HSHBMOM, 6.08

If you're sending the biopsy to Igenex Labs in California....

Collect several 3-4 mm punch biopsies from

the inner edge of the expanding part of the rash...the inner edge of the outer part of the expanding rash.[/b]

Put the biopsies in a dry, unused sterile urine specimen cup.

Do not put the biopsies in formalin or alcohol.

Ship the biopsy by overnight express to Igenex Lab in California on a Monday through Wednesday.

Do not ship on a Thursday or Friday or your specimen may get ruined over the weekend.

I wasted $300 on a PCR biopsy because my helpful, but uninformed physician took the biopsies from the center of the rash where the tick had been attached, not at the active (expanding) part of the rash.

Also, please remind others to take sequential photos of their rash(es) with a ruler in the photo and the date written on their skin...include a photo so you can see the rash and the person's face, if it's possible.

Taking photos got me classified as a "Suspect" case by the state health department. I was told confirmed and suspect cases are the only ones included in the state's Lyme case counts.

I was told I'd be added to the Lyme case count that year, but someone failed to amend the case count and I was excluded from the official statistics.

The health department was too bothered to amend the Lyme case count after they waited 6 moths to contact me and verify my positive Lyme Western Blot test.

Post edited by: Bettyg, at: 08/19/2010 02:06 AM