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05/18/2012 09:10 PM
Bettyg
 
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ADVANCED LAB SERVICES,PENN.

9-5-11 press release for BORRELIA CULTURE NOW AVAILABLE

http://researchednutritionals.com/Announcements/ LymeCultureTest.pdf

i think JOHN PATRICK, member, posted this elsewhere.

bettyg, iowa activist forever

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
Reply

06/28/2012 01:02 AM  Top
Bettyg
 
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SEE GRAPHS AT SITE!!

Lyme Disease (Borrelia burgdorferi B31) Line Immunoassay

JUNE 2012

Navigation

Ordering Info

IgM Antigens

IgG Antigens

Lyme LIA

LIA vs. Western Blot

LIA Advantages

Test Strip Details

Package Inserts IgG, IgM

Quality Control

Lyme Studies

Lyme General Info

GSD offers both a highly specific line immunoassay (LIA) confirmation test and sensitive ELISA screen to fulfill the CDC's recommended Lyme disease diagnostic process.

The LIA offers numerous improvements compared to traditional Western blot technology, and the ELISA can be easily automated on the innovative ThunderBolt™ EIA Platform.

GSD’s Lyme disease ELISA is fully validated as “ThunderBolt-Ready” ensuring quick and easy implementation in any laboratory environment.

In addition to Lyme disease, over 200 other assays from 20 different manufacturers are also certified “ThunderBolt-Ready”.

Important Borrelia IgM Antigens

Proteins:

Flagellin (p41) - Marker, Flagella Protein

BmpA (p39) - Membrane Protein

OspC (p23) - Early Lyme Surface Protein

Legend:

Weight: Antigen weight in kiloDaltons (purified or recombinant)

Protein: protein name (if available).

Stage:Early – Early localized infection, Disseminated – Early disseminated infection (e.g. “neuroborreliosis”), Late – Late persistent infection.

Important Borrelia IgG Antigens

Proteins:

p83/93/100) - Late Stage Marker

Oms66 (p66)

OppA-2 (p58) - Disseminated Stage Marker

Heat Shock (p45)

Flagellin (p41) - Flagella Protein

BmpA (p39) - Membrane Protein

OspA (p31)

Surface Proteins (p30, p28, p18)

OspC (p23) - Early Marker Surface Protein

Legend:

Weight: Antigen weight in kiloDaltons (purified or recombinant)

Protein: protein name (if available).

Stage:Early – Early localized infection, Disseminated – Early disseminated infection(e.g. “neuroborreliosis”), Late – Late persistent infection.

Line Immunoassay (LIA) vs. Western Blots

Line Immunoassay strips offer easy handling, simple procedures and intuitive interpretation. Results can be read by virtually anyone with minimal training and experience.

Traditional “Western Blots” are not intuitive to read and require a Band Locator to interpret results.

Line Immunoassay (LIA) Advantages

Discrete Antigen Application - Antigen applied in tightly defined, discrete positions on each strip.

Native Antigen Structure – The 3D (tertiary) structure is maintained for LIA. Western blot proteins are denatured, and only their primary structure remains intact. Antibodies bond with proteins in their native structure.

Intuitive Results – Easy-to-read, precisely defined results. No special Band Locater or subjective judgment required.

Easy Handling - Strips fixed in a numbered booklet (32 strips per booklet).

Durable Strips - Strip booklet stabilized with plastic backing.

Automation - Standardized strips are suitable for automation.

Simple Procedure – Identical Serum Dilution (1:100)

Internal Test Controls (Serum & Conjugate bands)

Quick results (100 minutes: 30/30/10)

Calibration via Cut-Off Control Band

The Line Immunoassay (LIA) Test Strip

100% Quality Control

GSD’s Line Immunoassays are thoroughly examined by testing two strips from each nitrocellulose sheet using a positive control.

Borrelia bergdorferi Diagnostics Studies

Burgdorfer, W., Barbour, A. G., Hayes, S. F., Benach, J. L., Grunwaldt, E., and Davis, J.P. Science 516:1317-1319, 1982.

Steere, AC. N. Engl. J. Med. 321:586-596, 1989.

Steere A.C., Taylor E., Wilson M.L., Levine J.F., and Spielman A. J. Infect Dis. 154:295-300, 1986.

Aguero-Rosenfeld M., Nowakowski, J., McKenna D, Carbonaro C, and Wormser, G. J. Clin. Micro. 31:12 3090-6095, 1993.

Steere, A. C., Grodzicki, R. L., Kornblatt, A. N., Craft, J., E. .Barbour, A., Burgdorfer, W.G., Schmidt, G. P., Johnson, E., and Malawista, S. E. N. Engl. J. Med. 308:733-740, 1983.

U.S. Dept of Health and Human Services, FDA, CDRH. Draft Guidance for Industry and Food and Drug Administration Staff. Establishing the Performance Characteristics of In Vitro Diagnostic Devices for the Detection of Antibodies to Borrelia burgdorferi. Jan 2011.

Centers for Disease Control and Prevention. Morbid, Mortal, Weekly Rep. 44:590-591, 1995.

Dressler F,Whalen, J. A., Reinhardt B. N., and Steere, A. C. J. Infect. Dis. 167:392-400, 1993

Lyme Disease (Borrelia bergdorferi) General Information

Lyme disease is caused by three species of Borrelia bacteria:

Borrelia burgdorferi,

Borrelia afzelii and

Borrelia garinii.

Most cases in the United States are caused by the Borrelia burgdorferi strain.

The vast majority of cases are concentrated in the Northeast and Midwest United States, with over 94% of 2010 cases occurring in just 12 states in those regions.

More information: http://www.cdc.gov/lyme/

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bettyg, iowa activist

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/3865674-new-lyme-test-approved- by-fda

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

08/21/2012 12:31 AM  Top
Bettyg
 
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july 2012 ADVANCED LAB NEWSLETTER UPDATES

http://www.advanced-lab.com/news/Newsletter_July2012.pdf

BETTYG

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

10/23/2012 03:24 PM  Top
Bettyg
 
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ADVANCED LABS VS. IGENEX DIFFERENCE explained by

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic;f=1;t=120826;p=0

AuntyLynn posted 10-22-2012 07:41 PM

Advanced Labs is a CULTURE test. They try to grow borrelia spirochetes from "eggs" in your blood.

IgeneX is an "expanded" Western Blot. It's looking for antibodies, (just like the garbage ELISA), but it shows a few more bands,that are helpful for a diagnosis.

If you can get a Positive Culture Test (Advanced) - even the Insurance Companies would have trouble trying to deny your care! This is why you "can take it to the bank."

Advanced labs sends folks a photo of the spirochetes grown from the sample, which is taken under a microscope. A Positive is UNDENIABLE!

If you have mostly neuro symptoms, you will likely want to try IV (which crosses the blood/brain barrier best) ... but which costs about $3K a month.

Most folks need to be on IV for many months to get results. (See: Dr. S study) This is why insurers are fighting lyme claims left and right.

Posts: 1201 | From New Jersey | Registered: Jan 2012

© 1994-2011 The Lyme Disease Network of New Jersey, Inc.

All Rights Reserved.

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

10/24/2012 11:10 PM  Top
Bettyg
 
Posts: 27227
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read tincup's explaination to lymeseek on IGENEX testing/background of company!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/79309

i've talked to many with igenex testing these last SEVEN yrs; many had NEGATIVE RESULTS; they are NOT ALL POSITIVE!!

igenex has the most sophisticated equipment plus the other LYME DIAGNOSTICS LABS WE RECOMMEND; mayo clinic DOES NOT!!

this comes up all the time, so i'm adding this to this subject.

bettyg

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

12/20/2012 09:07 PM  Top
Bettyg
 
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Fry Lab -- New Testing Available

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic;f=1;t=121878;p=0

seibertneurolyme posted 12-20-2012 01:22 PM

Wanted to repeat some of this info in a separate post. I am very excited about the new DNA sequencing testing available from F lab.

Spoke at length to the lab director -- Jeremy -- about testing procedures.

I am an acoountant so have no scientific background,. But from my discussion with the lab I was very impressed with their work. I think they know what they are doing.

I had been under the impression that they cultured the blood samples, but that is incorrect. What they are doing is much more sophisticated.

The advanced stain test sounds very similar to the IGeneX fish test.

They incubate the blood sample for 5 minutes with a florescent DNA stain and then label and store it. This is what they take a photo of.

Now for the radical new testing.

If they visually see something in the blood then they now (since June 2012) can do DNA sequencing to identify the pathogens.

There are separate tests for protozoa and bacteria -- think the protozoa test is $265 and not sure about the bacteria cost yet.

In this test they use universal amplification and widen the scope and look for more than just babesia or FL1953. This is all computer based.

Actually there is a separate DNA sequencing test available for babesia that costs $100.

And there is the DNA sequencing test for FL1953 -- the PCR test listed on the lab requisition forms.

The lab director explained in detail that test to me. It involves 2 positive and 1 negative control and the test is even repeated if it comes back negative.

I won't go into all the specifics about that test as many people are already somewhat familiar with this testing.

Since much of this testing is new, IT IS NOT LISTED ON THE TEST REQUISITION FORMS.

But this is the info that people need to understand.

If you had a photo taken by them or had a blood smear done by someone else such as Clongen and they visually saw something but you could never get an I.D. on the pathogen now there is some hope that the new testing can actually identify all those strange things in your blood.

For example -- in hubby's F lab photo, STEVE SIEBERT, who passed Oct. 2012

Maybe now we can find out what the coccobacilli (bacteria) really were -- waiting on that test to be done.

What visually looked like babesia may not really have been babesia but might be some other strange blood borne parasite.

What Dr F himself thought was FL1953 based on visual exam also turned out to be something else -- I'm waiting for hubby's LLMD to talk to the doc to have a better understanding of what the 2 or 3 different blood borne parasites really were.

Hubby never had antibodies to babesia microti. He did have very elevated antibodies to babesia duncani -- 1:2056 in December, 2010. But they had come down.

But he still had visual evidence of what we thought was babesia as seen by both Clongen and F lab. But all the PCR tests came back negative.

So now the new DNA sequencing has found some other things that I am eagerly waiting for more info on.

It is my understanding that the FL1953 pathogen as currently identified has only 1 strain. I was a little unclear as to whether the lab thinks there are actually multiple strains of that pathogen or not.

Anyway -- this gives me hope at least that now maybe people can really find out what their infections are and how to better treat them. If you don;t know what infections you have, then you are just taking an educated guess as to treatment. The more info the better in my opinion.

If cost is an issue then treat the 3 basic infections -- lyme, babesia and bartonella -- as best you can.

But if you are still sick and not getting better -- especially after years of treatment -- then maybe it is time to do additional testing.

But just repeating the usual testing for antibodies or doing another Western Blot doesn't give you any new info.

Try doing a blood slide or having someone with experience look at your blood under a microscope. If something shows up then the next step would be doing the DNA sequencing testing now available from F lab.

When we did the Spirostat testing last April we were hoping they would find something. But they were doing only PCR testing for specific pathogens.

What F lab does is start with what they actually find in your blood and then look for a DNA match. Their approach does not assume you must have some specific pathogen or strain of bacteria or protozoan.

They are the only lab I know of that offers this type of testing.

Bea Seibert

poppy posted 12-20-2012 01:35 PM

Thanks for the information.

The caveat that I would add is that when they are sequencing, they must compare it to known banked sequences to have an I.D. Not everything has been sequenced, so this will not identify those microbes.

Did you get the impression that they were keeping frozen samples of all the previous clients so that someone who had coccobacilli could ask for further testing on it?

seekhelp posted 12-20-2012 01:35 PM

THanks Bea. This is very interesting. My question is what is the starting test one does at Fry to get this process going? A standard blood smear? Something different? This is the one thing I feel is important for me.

I am very, very interested in what they find from Steve's specimen.

Also, do they only focus on pathogenic organisms or all types?

How do we know the general public doesn't all have some different pathogens in their blood, even if healthy?

seibertneurolyme posted 12-20-2012 02:10 PM

Poppy -- Not 100% sure, but I think they do keep stored frozen specimens from all patients who had the blood smear testing. But not sure for how long.

Maybe someone else should call the lab and ask that question -- I don't want them to think I am a pest for calling too much.

And yes, your other point is valid. They do compare the sequence results to what is recorded -- I am guessing they use GenBank.

But as reported in hubby's test results it says if the match was 88% or whatever. So unless it is something totally new it should match up to a fairly high degree I would think.

Seek -- I am assuming they look at all recorded bacteria and protozoa. Everyone has good bacteria as we all know -- but I do not think the beneficial bacteria are supposed to be in your bloodstream. But I don't think there are any good protozoa found in humans.

I think it comes down to your immune system as to how it responds to pathogens. Not everyone gets the flu for instance.

But I also think there are some bacteria and protozoa that are only found in sick people.

Bea Seibert

Editing to add -- Reread hubby's test results.

The babesia sequencing test does report the percentage of genes matched up. But the protozoa test only says what percentage of organisms found belonged to each different organism listed.

So maybe they are looking for only exact matches, but still they are looking for things no other lab is looking for.

[ 12-20-2012, 03:00 PM: Message edited by: seibertneurolyme ]

© 1994-2011 The Lyme Disease Network of New Jersey, Inc.

All Rights Reserved.

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

01/03/2013 11:05 PM  Top
Bettyg
 
Posts: 27227
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Fry Lab -- New $800 Testing Available; 1-3-13

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 121878?

seibertneurolyme

Frequent Contributor (5K+ posts)

Member # 6416

posted 01-03-2013 05:25 PM

Just talked to the Fry lab today.

The bacteria sequencing test will cost $800 and it does not look like it will be paid by insurance as it is considered research and experimental.

I have requested the test anyway as it may still be covered under hubby's catastrophic insurance policy.

Regardless, at this point I want to know whatever I can find out even if I have to pay for the test myself.

Will post more when I get the test results.

Bea Seibert posted 01-04-2013 10:01 AM

cold feet,

Yes, the new test is expensive -- but it is not something that any other lab I know of does.

Hubby had the full Spirostat testing done twice in April 2012 -- both the lyme and babesia panels -- at a cost of $2500 I think it was.

They did not find anything -- because all they look for is a specific set of organisms by PCR. PCR testing is great if it is positive.

But there are lots of false negatives with that type of testing.

They are only looking for exact DNA matches and would not be able to i.d. unknown organisms even if they found them as far as I know.

Never heard of the other lab you listed -- need to research that one.

I totally understand your skepticism regarding the FL1953 bug -- but actually that is not what the lab found in hubby -- at least I don't think so.

Not 100% sure what the 2 or 3 blood borne parasites are yet -- they will only talk to a doc and not to me.

Hubby had multiple things show up on Clongen bloodslides over the years that no one was able to identify.

Other patients have had the same or similar findings.

I personally think there are other tickborne or maybe mosquito borne pathogens that have not been identified in the medical literature.

They may be pathogens commonly found in animals or they may be something totally new -- just do not know at this point.

My hope is that all the testing on hubby can help some other patients down the road. There are just so many unknowns with tickborne disease patients and the research is so far behind where it should be.

And the hospital lab could not even find any bacteria or blood borne parasites at all -- even though at the end they said Steve died from sepsis.

Standard blood cultures as done in hospital labs miss many pathogens in my opinion.

Bea Seibert

Posts: 6191 | From Martinsville,VA,USA | Registered: Oct 2004

kelmo posted 01-04-2013 10:36 AM

Thank you, Bea, for your persistance and research. Your husband would be proud of you. I know you have tried many labs looking for many organisms.

We've been on this journey with Fry Labs. They are really committed to research. A lot of personal sacrifice.

Posts: 2881 | From AZ

© 1994-2011 The Lyme Disease Network of New Jersey, Inc.

All Rights Reserved.

Post edited by: Bettyg, at: 01/07/2013 03:58 AM

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

05/23/2013 12:58 AM  Top
Bettyg
 
Posts: 27227
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Testing LIST BY SCOTT FORSGREN, BETTER HEALTH GUY

Last Updated: April 27 2013

The information outlined here on testing for Lyme disease and related co-infections is based on my own personal experience. It may not be an all-exhaustive analysis of possible testing options and is not intended as a substitute for your own research.

Many of the comments represented are opinion as there are numerous debates in the arena of Lyme testing.

It is important to differentiate between tests that look for antibodies and tests that look for antigens, or the actual organisms (or DNA of the organisms themselves).

Antibody testing can be highly unreliable (as can antigen testing).

Lyme disease often evades the immune system and thus false-negatives are not uncommon. It may be only after the start of treatment that one finds a Western Blot, for example, becoming positive.

This is generally due to the recovery of the immune system and the immune system's ability to now begin to mount an attack and recognize the foreign invaders.

1) ELISA (Enzyme Linked Immunoassay) - a simple, inexpensive test for detection of antibodies created as a response to an infection with Borrelia Burgdorferi (the main causative agent in Lyme disease).

Personally, I do not believe this test is of any significant value and may represent a doctor that is not well-versed in diagnosing and treating Lyme disease.

It may be a sign to turn and run to find a new doctor if your doctor is relying on an ELISA test to determine the course of your care. In one study, the test was found to be 55% inaccurate.

Thus the odds are better with a simple coin toss. The test is not recommended until at least four weeks after exposure.

Reference The C6-peptide ELISA is a more accurate form of the ELISA test though still not recommended. A positive ELISA must be followed up with a Western Blot.

2) Western Blot - This is likely the most commonly used test for Lyme disease. It is still an antibody test and thus false negatives are not uncommon, but it is, in my opinion, the best place to start.

Western Blot test results will include both IgG and IgM assays. In many traditional infections, IgM is an indication of recent infection whereas IgG is an indicator of late infection.

With Lyme Disease, there appears to be a cycling between IgM and IgG and thus, these are not accurate indicators of the length of time the infection has been present in most cases.

In my opinion, IGeneX is the best place to have this test performed.

It is critically important that one not look at the NEGATIVE or POSITIVE summary result of the Western Blot test.

That criterion is based on CDC guidelines which many argue are not appropriate for Lyme disease.

Instead, it is important to look at all of the bands and map those to the known Lyme-specific bands (those bands that represent evidence of serological exposure to Borrelia Burgdorferi).

According to Dr. Charles Ray Jones, these are: 18 23 30 31 34 37 39 83 93.

Reference Other doctors focus on 23-25, 31, 34, 39, 83-93 as the most specific bands.

Additional information on the specific bands and what they mean can be found here.

If any of these bands appear in either IgG or IgM, that is an indication of past or present infection with the causative agent in Lyme disease.

Thus, that is NOT a clear "negative" test result; "something" consistent with infection with Borrelia was observed.

Some labs reports only + (positive) and - (negative) and ignore equivocal or IND (indeterminate) bands.

This is, in my opinion, an error. If anything is visible, this is not negative. Quest, for example, does not report IND bands whereas IGeneX does.

In my opinion, testing for Lyme disease via Quest, and most other major labs, is a waste of time and money as they do not test for bands 31 and 34 which where used for Lyme vaccine production.

Something else to consider is that most labs in the US only test for Borrelia burgdorferi.

This may miss many strains of the Borrelia organisms, especially those from Europe.

IGeneX also offers a new 30-31kDa Confirmation IgG and IgM test.

If results from the initial Western Blot are positive for bands 30 or 31 only, it is possible that these could be due to cross-reactivity with several different types of viruses.

In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses.

3) PCR (polymerase chain reaction) - a sensitive method of testing where minute amounts of DNA are looked for. Though many consider this method of testing to be useful, I have not found that to be the case.

In a presentation that I attended by Dr. Aristo Vojdani (head of Immunosciences Lab), it was noted that PCR tests are positive somewhere between 6% and 15% of the time.

Thus, it was stated that this is not generally a useful test for the evaluation of Lyme Disease.

For PCR to be useful, it should be expected that it may take repeated tests in order to get a positive result.

4) Lyme DOT-BLOT is an assay for the direct detection of Lyme antigen in the urine.

The Reverse Western Blot is an antigen detection test in urine where the urine is exposed to rabbit antibodies for Borrelia Burgdorferi.

5) IGeneX offers the IFA (immunofluorescence assay) for Borrelia. It has shown many people that have had consistently equivocal or negative results that, in fact, they do have results consistent with Lyme disease.

IGeneX also offers a Babesia FISH and a Bartonella FISH (Fluorescent In Situ Hybridization).

I'm excited about these options as they are antigen detection tests and not antibody tests.

6) CD-57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or CD-4 cell counts checked on a regular basis.

Current information suggests that there is a similar population of NK (natural killer) cells called CD-57 cells that are known only to be suppressed in the presence of Lyme disease.

Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease.

Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active.

A normal test result would be > 200.

It is the opinion of some doctors that treatment is necessary until the CD-57 test score is 150 or above.

The lower the result, the more likely a relapse if treatment is terminated.

The test can be an indication of progression of disease or of progress in treatment.

However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels.

It may be the case that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.

Unfortunately, there are people that feel they are recovering and still have low CD-57 scores as well as those that have high scores and are still quite ill. The test doesn't seem to provide consistent value for every patient.

For more information on the CD-57 test from a recent article in the Public Health Alert, go here.

The test is now available through both LabCorp and, as of late 2010, IGeneX.

7) In mid-2007, I did the new "Borrelia Burgdoferi Direct Fluorescent Antibody by Flow Cytometry" from Central Florida Research.

The result was "NEGATIVE" which hopefully is a good sign after having treated for almost two years. I'd welcome the experiences of others with this test as well to help me form a more complete opinion. I still have not heard many doctors using this lab.

The one downside I have heard is that they may not look at any strains of Borrelia other than Borrelia burgdorferi and thus may miss infections with other strains of the disease.

I don't currently recommend this lab as one of the initial screening options.

Update: In November 2008, I was contacted by a reader of my site indicating that they had done both Central Florida Research and NeuroImmunology Labs (specific panel no longer available).

The Central Florida panel reported that they were entirely "NEGATIVE' while the NeuroImmunology results showed abnormal levels for Borrelia, Ehrlichia, Babesia, Bartonella and unrelated spirochetal infections.

The reader contacted me suggesting that CFR might not be the best recommendation to give to others looking for testing advice.

Given that my result was also negative, it does lead one to some questions about the test.

Another reader of my website contacted me regarding the Central Florida Research testing.

They concur that the lab seems to have many false-negatives when the same patient is positive by other labs such as IGeneX.

8) Fry Clinical Laboratories offers a number of tests for Lyme and co-infections. I think they are a good option and one of the few, if not the only one, labs that looks for Babesia and Bartonella in a blood smear.

I had them perform an ANA and antibody tests for Anaplasma, Babesia, and Bartonella.

My tests showed Ehrlichia antibodies as well as Bartonella antigens (the actual organism) in the blood smear.

I did not have a positive result for Babesia, however, I have seen other test results from this same lab that did show clear indication of Babesia.

To see my blood smear results, go here.

Contact by phone at 480-991-4555 to request a test kit or you can order the kit online at http://www.frylabs.com.

As of early 2012, the lab is offering a number of tests including

Borrelia, Anaplasma, Bartonella, Ehrlichia, Coxiella burnetti, Rickettsia,Plasmodium, Babesia, Toxoplasma, and FL1953.

FL1953 was the original reference for a novel new organism now called Protomyxzoa rheumatica that Dr. Fry and his team have observed in patients with a wide range of chronic diseases.

Protomyxzoa rheumaticais a biofilm-forming protozoan with characteristics similar to Babesia and malaria.

A blog post on this new organism can be found here.

Additional information is available here.

Update: I do think that some exciting new directions for treatment may emerge from the work that this lab is doing though and that our understanding of TBIs will emerge as a result of their work.

At this time, I think that their biofilm and Protomyxzoa rheumatica testing may be of particular interest to those of us with chronic illnesses.

9) One of the emerging labs on the block for Tick-Borne Infections is Clongen. I've heard the director of this lab speak at conferences and they appear to have a number of useful tests.

I did perform a couple of their tests and was surprised that they did not find anything in my samples.

That said, I had already been treated for quite some time for Lyme so I wasn't the best test subject.

I am particularly excited to see that they offer testing for other strains of Borrelia such as Borrelia afzelii and Borrelia garinii. A list of their tests can be found here.

Though the extensive panel for Lyme is over $2000, it is quite an impressive list of organisms that they are testing for:

Borrelia burgdorferi

Babesia microti

Bartonella henselae

Anaplasma phagocytophilum

Mycoplasma fermentans

Borrelia lonestari

Borrelia afzelii & garinii

Coxiella burnetii

Ehrlichia chaffeensis

Ehrlichia ewingii

Francisella tularensis

Rickettsia species (9 species)

Update: More and more, I've heard discussion that many of the tests from Clongen have come back negative and it seems that some doctors have stopped using this option as a result of the number of negatives that they were receiving.

10) MELISA testing was traditionally employed for testing for allergic responses to various metals. It is also available as a potential method for diagnosing Lyme disease by looking at reactivity of blood cells to different strains of Borrelia.

Details on the LTT-MELISA test for Lyme Disease can be found here. For residents of the United States, a variation of this test is now available through NeuroScience in the United States.

Their "My Lyme Immune ID" is reported to be more sensitive that many other tests on the market. It may also be a good indicator of inflammation resulting from Lyme disease.

The test has two basic parts: T-cells (ITT or Immune Tolerance Test) and "Stimulated Cytokine Testing" which provides insight as to inflammation.

IGeneX now also offers the "Borrelia Elispot-LTT" which was discussed in my recent "Emerging Tests for TBIs" blog entry.

11) Bowen Q-RiBb (Quantitative Rapid Identification of Borrelia Burgdorferi) was an interesting test for Lyme Disease. As of early 2007, the test is no longer available.

It was done by Bowen Research and Training Institute, a research facility.

I personally had the test done and found the information to be of some value.

However, the test is debated and many LLMDs would not use it.

I thought the test may have provided a data point that could have been of value to some especially at the beginning as additional confirmation of the disease.

It should be known that there were only a handful of negative results on this test in its history. In the eyes of some, this spoke to the prevalence of the organism.

In the eyes of others, it drew questions about the reliability of the testing procedure.

The photos below are my personal results from Bowen Labs in 2005:

Q-RiBb ResultsQ-RiBb Results

12) Galaxy Diagnostics emerged in early 2010 as a lab with a focus on Bartonella. I have not personally used the lab and would welcome and feedback from those that have. More information on Galaxy can be found here.

13) ImmunoSciences Lab led by Dr. Aristo Vojdani is back with a number of useful tests for Lyme and Tick-Borne Infections including their Multi-Peptide ELISA. More information can be found here.

14) Spiro Stat Technologies is another newer kid on the block also emerging in early 2010.

Dr. Lee Cowden said in a presentation in April 2010 that Spiro Stat is the only lab that he would use for Lyme disease at this time. Their panel includes a lengthly list of microorganisms. I

'm impressed that they even include the common dental pathogen, Treponema denticola.

They offer a Lyme Panel, a Babesiosis Panel, and a Fungi Panel. I talked in more detail about this option in a recent blog that can be found here. Their web site can be found here.

I think this lab is becoming one of the leaders in TBI testing.

Microorganisms include:

Anaplasma phagocytophilum

Borrelia afzelii

Babesia microti

Bartonella henselae

Borrelia burgdorferi

Borrelia garinii

Borrelia hermsii

Borrelia lonestari

Borrelia parkeri

Borrelia valasiana

Brachyspira aalborgi

Bracyspira hyodysenteriae

Coxiella burnetti

Ehrlichia chaffeensis

Ehrlichia ewingii

Francisella tularensis

Mycoplasma fermentans

Rickettsia spp (9 species)

Treponema carateum

Treponema denticola

Treponema pallidum

Treponema pertenue

15) The newest lab to start testing for Borrelia as of late 2011 is Advanced Laboratory Services. This is the first commercially available culture test for Borrelia. This lab has the potential to be a game changer in the world of Lyme disease.

If the actual organism can be cultured after years of treatment, the argument over persistence of the organism may be forced to change.

Consultants to the lab include Dr. Joe Burrascano, Dr. Marcus Conant, and Dr. Eva Sapi.

I haven't had this test done personally because at this stage of my journey, I'm not sure how a positive or negative result would change my direction, but I do think it is the most exciting development in testing to emerge in a long time. A recent blog on this option can be found here.

A July 2012 press release from Advanced Lab with more information about their testing is available here.

16) Another option for testing is Infectolab which is based in Germany and led by Dr. Armin Schwarzbach.

They offer the Borrelia-Elispot LTT, CD57, Borrelia-immunoblot, and other testing such as Chlamydia and co-infections.

To learn more, visit the Infectolab web site here.

To order these tests from within the US, contact Sue Vogan at 717-254-1953 or via email at svlabtestkit@gmail.com for more information.

Testing for Co-Infections

My experience has been that testing for co-infections is a critically important piece of the puzzle. My initial Western Blot was equivocal and yet, I had evidence of Babesia, Ehrlichia and Bartonella.

This helped to round out the facts in support of my Lyme Disease diagnosis.

I have had the clearest results from the standard IgM/IgG antibody tests (outside of energetic medicine using ART or EAV which were far superior in my experience) from IGeneX and the test above from Fry Clinical Labs when it comes to co-infections.

I also firmly believe that people with Lyme generally have at least one co-infection (in fact I would go as far as to say almost always if not always).

Each co-infection may require different types of treatments and unless all of them are addressed, the chances of recovery are lessened.

Here are some additional thoughts on co-infections:

Co-infections are the RULE, not an exception

The average child with Lyme has 2-5 co-infections with an average of 3.

Treatment of co-infections is required and often, they must be treated BEFORE or concurrent with the Borrelia treatment itself.

If you don't test for and treat co-infections, you are not putting yourself in a good position for healing.

Almost everyone with chronic Lyme likely has 1 or more co-infections.

Co-infections require DIFFERENT treatments in many cases. Do not assume that you are covering them with only the Lyme treatment. Many people don't even know which ones they have.

Co-infection testing is often unreliable as well and you need to repeat them over time. It took 4 months for my Bartonella to appear and almost 8 for Babesia to finally appear, but they were there.

If you think you only have Borrelia, odds are you have not looked closely enough.

For an article on co-infections in the Public Health Alert, go here.

My current preferred approach for testing for co-infections is to use IGeneX (particularly the Babesia and Bartonella FISH tests) and Spiro Stat.

My Recommendations

For Lyme Disease / Borrelia Testing:

Complete Lyme Panel 6050 from IGeneX which includes Western Blots, the Lyme IFA, and PCR.

Borrelia Culture from Advanced Laboratory Services was made available in late 2011. This is the first commercially available culture for Borrelia and does not rely on the immune system for a positive test result.

CD57 from either IGeneX or LabCorp as another key indicator that may help provide more information as to whether or not Lyme disease may be a factor in one's chronic illness. A fantastic article on the test can be found here.

For Co-Infection Testing:

Complete Co-Infection Panel 5095from IGeneX done which includes Babesia antibody and FISH testing, Ehrlichia antibody testing, and Bartonella antibody and FISH testing.

Lyme Panel and Babesia Panel add-on from Spiro Stat.

Co-Infection Profiles from Fry Labs.

I would also definitely do a good heavy metal urine challenge test, viral testing, and a good parasite test. All too often, people focus too much on just the Lyme and in my opinion miss many of the other important things that are also going on.

LIA (Lyme in Autism) Foundation has created an excellent list of tests that are recommended for autism. It is my opinion that these apply to anyone with chronic illness. LIA Foundation recommendations can be found here.

In Better Health,

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Post edited by: Bettyg, at: 05/23/2013 01:04 AM

Post edited by: Bettyg, at: 05/23/2013 01:19 AM

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
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NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
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