LymeNet Flash: what to do when your test come back negative

This is topic what to do when your test come back negative in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/33578

Posted by stella marie (Member # 7216) on :

Just wondering what to do when your Western Blot comes back negative?

What is the next step?

Feel lost.

Posted by janet thomas (Member # 7122) on :

Ask for a copy of your WB and post the result here. CDC negative may have Lyme specific bands.

Posted by stella marie (Member # 7216) on :

Thanks Janet....will do

Posted by Aniek (Member # 5374) on :

Don't give up! Keep pushing for a diagnosis, whether it turns out to be Lyme or another illness. Remember, Lyme is a clinical illness that does not need
a positive test to diagnose...even the CDC says that.

I had many negative tests when I was in high school, in the first years of illness. I didn't get treatment and I never got a diagnosis better than "growing pains."

In the couple years before my diagnosis, I went to many doctors and had at least 2 negative blood tests. I didn't give up. I called a local support group and got the name of an LLMD. I finally tested positive on a test through MDL, but she was ready to give me a clinical diagnosis based on my symptoms.

What lab did the test? If it was Quest, it means absolutely nothing. Get another test.

Do you have an LLMD? If not, don't stop until you find one.

Don't give up until you are satisfied with an answer. One doctor wanted me to accept a diagnosis of a repetitive stress injury and change careers to not use a computer. Another wanted me to accept a fibromyalgia diagnosis, when I knew the symptoms didn't fit.

Posted by stella marie (Member # 7216) on :

I don't know what lab did the test....just where the blood was drawn...LabCorp

Thanks for the information everyone.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by stella marie:
I don't know what lab did the test....just where the blood was drawn...LabCorp
Thanks for the information everyone.

I would think that if LabCorp drew the blood they also tested it. Basically worthless.

------------------
oops!
Lymetutu

Posted by Lymetoo (Member # 743) on :

REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochetes are deep in host tissue
5. Only blebs in body fluid; no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (300 strains in U.S.)
8. Antigenic variability
9. Surface antigens change with temperature
10.Utilization of host protease instead of microbial protease
11.Spirochete in dormancy phase
12.Recent antibiotic treatment
13.Recent anti-inflammatory treatment
14.Concomitant infection with babesia may cause immunosuppression
15.Other causes of immunosuppression
16.Lab with poor technical capability for Lyme disease
17.Lab tests not standardized for late stage disease
18.Lab tests labeled "for investigational use only"
19.CDC criteria is epidemiological, not a diagnostic criteria

Posted by map1131 (Member # 2022) on :

I tested negative thru Labcorp twice before I had lyme testing thru Igenex and it was IGM highly positive. I've never personally seen results of the Labcorp testing.

I just might try to get a copy those results someday.

Pam

Posted by stella marie (Member # 7216) on :

Just got results.....on the WB IGG only 10 bands #18 - #93, all had ABSENT beside them.

On the WB IgM # 41 had PRESENT beside it and the other bands #39 and 23 had ABSENT beside it.

Posted by duke77 (Member # 5051) on :

I think I am seronegative sp? I had a positive LUAT and Positive PCR and got diagnosised clinically before the tests were done. I had all of the symptoms there was no doubt the internet and I came to that conclusion before the LLMD. IGG WB tests were all negative except 41. If you live in the south they claim there is a particular strain of bb that does not show up on antibody tests. Then there is the 19 reasons that Lymetoo posted. So testing is really just for confirmation Lyme has to remain a clinical diagnosis.

Posted by stella marie (Member # 7216) on :

Don't have a LLMD, just a neuro doc who knows something is up and hasn't given up.

He has suggested for me to see a person at local well known teaching hospital.

I have read their protocol on LD and it doesn't sound promising unless they test elsewhere.

Maybe it's not LD.

My backyard does have reg deer visitors as does the surrounding area.

Posted by treepatrol (Member # 4117) on :

Read all the western blot info here and remember Lyme is a clinical diagnosis.
Also You could save your Dr and you a lot of time and money bying getting a LLMD.Do a 3 day urine test at the same time following its protocol.

My Dr did this for me get on high doses of say doxy for a week then do the western blot thus freeing up the antigens that are attacking spirochetes.They become free and easier to find in the blood also pieces of protiens will be in the blood from death of spirochetes.

But remember lyme should be diagnosed clinicaly.Read Dr Bs stuff to.

Newbies List 2005

WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and
foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Lyme Disease symptoms 2005
Lyme Symptoms 2005
Post for a LLMD in
Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Support Links LLMD's

Lyme State Info Cheryl's
LYME DISEASE TREATMENT & DIAGNOSIS
Cheryl's LDT&D
Lyme Disease Misdiagnosed As ...
Art Doherty Misdiagnosed
Art Doherty Lots a Links

Conflicts in Lyme

How to Search Courtesy of Danq
TC LymeNet Links for New Members
TC 50 Questions

TC Warning To Posters

Lida Mattman

DISEASE INFO - COINFECTIONS

Newbie's Lingo

Links for family members

Lyme Disease Audio Network
Dr B's Treatment Guidelines

Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society

Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M

Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B

MP Controversy
MP 2
MP 3
MP 4

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Labs
MDL
Igenex Labs
Q-RIBb
Western Blot Info

FDA It is important that clinicians understand the limitations of these tests

Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Western Blot
Blood Brain Barrier

ABX `s Cross Blood Brain Barrier
Flagyl,= List of ****dazole's that I have found
Cyst's Treatment

Drug Interactions and Other Drug Info
Drug Digest & Interactions
Drug Interactions
American Medical Women's Association
Tiscali Reference Encyclopedia

Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Herxheimer Reaction Explained

Candidiasis

Quote Lida

Ilads

Yeast Problem Diet too
Oral Yeast
Oral Yeast
ZIPZIP Thanks

IntestinalFlora

Parasites
Put word Diarrhea in Search
Morgellons
Infestations

More Tick Disease

Infectious Disease List

Tularemia
Tularemia

Tularemia Rabbit Fever

Mycoplasmal Infections
Mycoplasmal CDC

Alzheimer's

ALS

Lida M
Good Article ALS MS And More Etc
Good Article ALS
ALS
Lou G ALS
M S
MS
Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier
Links

Lupus Lyme
Lupus Lyme Misdiagnosed
Lyme Disease Misdiagnosed as Fibromyalgia
Fibro Lyme

Lyme Misdiagnosed as other disease's
Lyme Disease Misdiagnosed As ...
CFS CFID
CFS CFID
CFS

Garlic Proper way to eat it
Garlic

Check Diet Link Atkins Diet

PORT-A-CATH (catherter)
Abx's Port

Prolotherapy

Transmission Lyme
Transmission Fleas Mosquito's Food Etc
Transmission Etc

Transmission Art Doherty

Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections

Good Site Canadian Lyme Disease Association
FDA on Lyme Testing

Legal Help
InsuranceLaws
Medical Records Privacy
Legal Help
Legal Help
Legal Help
Legal Help
Legal Help

MatthewGoss Site
GreatSite
MedicalDictionary

Cheryl's Site

MorphologySimplified

Tonsils crimson crescents

Killing Lymphocytes By Spirochetes

Wealth of Info

Support
USA Support

SupportGroups Canada
Canada SupportGroups
Associations, Foundations, and Support by Country

Marnies...... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1

In a Nutshell P2

Part1 Long over Due
Part2
Part3
Part4
Part5
Part6
Part7

Updated in a Nutshell
For My Friends

Canlyme MAG
Silver Discussions
Silver Treatments

Help Free
Help with Meds
Help! Free Meds
Vitamins you should Know
Tests Synonyms Guide
Lab Tests Looky

Blood Donor Info
Pain Info
Pain Info

Psychiatric Lyme
Fallon & Tager Report
Duramater NeuroPsych Info Kids&Adults
Neurologic Lyme
Neurologic Lyme

Dirty Truth
Sporadic Schizophrenia
Psychiatric Manifestations
Columbia Lyme
Schizophrenia & Lyme Disease
Sunra links

Scans & How they Work

How UltraSound Works
Explains LD50 Chemicals Toxicities
MSDS SITE
Silver

Interested in what Trolls are?
1.

Remember This
Rules
Success Stories
Success Stories
Chat
LD Chat Room Links
Spirochetes Pics Link
SPIROCHETES FORMS 1
SPIROCHETES FORMS 2
SPIROCHETES FORMS 3
SPIROCHETES FORMS 4
Conspiracy Theories
US Patent Pathogenic mycoplasma
CDC CITATIONS
Citations

A copy of this is stored in computer Help section.

Updated 04/22/2005

Posted by deb obrien (Member # 5239) on :

stella-marie - i've never tested positive for lyme but last year tested pos for babesia on two tests from igenex - therefore, my doc is sure i also have lyme....so i would suggest doing all the lyme and co-infection tests from igenex to see if something shows up...
deb

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

Posted by Aniek (Member # 5374) on :

quote:
Originally posted by stella marie:
Don't have a LLMD, just a neuro doc who knows something is up and hasn't given up.
He has suggested for me to see a person at local well known teaching hospital.
I have read their protocol on LD and it doesn't sound promising unless they test elsewhere.
Maybe it's not LD.
My backyard does have reg deer visitors as does the surrounding area.

I notice you are in MD. If this hospital is in Baltimore and begins with a J, they won't help you much with Lyme. They are known to be very conservative when it comes to Lyme diagnosis and treatment.

If you are close to the DC area, there is a local support group. It's listed under the Support Groups link on the left. They can give you some recommendations for LLMDs in the area.

Posted by Pocono Lyme (Member # 5939) on :

Stella Marie,

My first Western Blot was done by LabCorp and showed absent next to every band listed.

My Igenex Western Blot revealed an equivocal IGM and a positive IGG. Also the bands checked by Igenex are different, not all, than what LabCorp checks for. LabCorp doesn't have equivocal in their vocabulary.

Posted by stella marie (Member # 7216) on :

How does one go about getting tested by these others labs mentioned?

Posted by DeniseBunty (Member # 6559) on :

when my son got tested first we went to Bowen Research came back positive) email [email protected] my doctor said he thought this was the best, then we retested him and me and went to Medical Diagnostic Labs www.mdlab.com and we both were positive my doctor says you just have to be careful who tests your blood, my husband did a local test at our local hospital it came out negative we are retesting him at MDL I will bet it will come out positive, he gets it done May 13 we will know in 2 weeks after that, I will let you know

Posted by on :