janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Ask for a copy of your WB and post the result here. CDC negative may have Lyme specific bands.
Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Thanks Janet....will do
Posts: 694 | From US | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
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
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
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.
Posts: 649 | From United States | Registered: Dec 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
posted
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
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Posts: 122 | From richmond, ca, usa | Registered: Feb 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
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.
Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
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
Posts: 43 | From Hanover Pa USA | Registered: Nov 2004
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