I got my WB results today from LabCorp. It was negative. There was not even one positive band either IGG or IGM.
I have all these horrible neuro symptoms and history of bullseye rash in 1992. MS ruled out by MRI.
I don't know if I should continue this pursuit with a LLMD or if maybe I really don't have Lyme and should look for other causes. No one has been able to find anything yet. All my test results have been negative.
Any thoughts?
Patti
Posted by SForsgren (Member # 7686) on :
Did you have any indeterminate bands? Have you considered doing a test with Igenex instead of Labcorp?
Posted by pattilynn (Member # 8065) on :
No indeterminate bands. All were negative. I have considered Igenex. I'm just not sure what to do as I have many Lyme symptoms.
Patti
Posted by Panchito (Member # 4880) on :
Bulls Eye Rash = Lyme. The ONLY 100% sure way to be diagnosed. Of course, it was 13 years ago in your case and you may have had lyme which was cured and now you have something else, but chances are, if you have all these strange neuro symptoms and there is no other disease present which could explain the symptmos, i'd defintely look for an LLMD. Lyme is a clinical diagnosis of course, but a blood test at IgeneX or MDL would be helpfull.
A negative labcorp test is meaningless. Many reasons for false negatives, even Igen3eX false negatives, people with long standing infections who have not been treated often test negative. After proper treatment, these people actually turn seropositive.
I am not saying you have lyme, but just giving my view. And I do not think a month or 2 - 3 of antibiotics would hurt even if y9ou don t have lyme. In case of a herx or improvement you have very strong evidence of lyme or another infection...
Good luck!
Posted by Lisianthus (Member # 6631) on :
Elisa and WB are antibody tests. You can try some antibiotics one month prior to your next test.
When you have lyme you get a herx reaction to certain ones that cross the blood brain barrior. Also they may help with making you start to produce antibodies to Bb.
When you start to produce antibodies to the bacteria it will show up on these tests.
Also, get your test done by a good lab. (Igenex) My labcorp tests were all neg. too.
Lisi
Posted by groovy2 (Member # 6304) on :
Hi Patti
I had tests done a few months ago (Igenx) Tests came back Indertiminate--
I have Lyme and Babs-For Sure- I had a huge Bullseye bruse on my leg weeks before I started to get sick 1985 and have had almost every symptom -
Many things can sque the test results- Because of the way the test is preformed- a False Negitive is much more likely than a false positive-
Also Each lab has there own way to do the tests and Read them--
Use symptoms to DX disease--
Do Not use tests to rule out disease- Only to conferm--Jay--
Posted by timaca (Member # 6911) on :
Patti~
I am inclined to think you should keep persuing lyme AND whatever else your doctors can come up with as a possible diagnosis.
Your story is similar to mine (as we've posted back and forth)....which inclines me to think lyme is your issue. BUT, I'm not a doctor.
I would suggest finding an LLMD. Try posting in the seeking a doctor section.
You might also consider going to a good medical center to rule out anything else they can think of.
You might also consider getting tested (which means more money) at Igenex, MDL and/or SUNY at Stonybrook....all good labs for tick borne diseases.
Don't give up trying to find the cause for your issues. Good luck....
Posted by Lymetoo (Member # 743) on :
Ditto to what Panchito said. Read it again.
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
TRY IGENEX Posted by Michelle M (Member # 7200) on :
Hi Pattilynn.
LabCorp? A pox on LabCorp. Use a good lab. It's worth a coupla hundred dollars to do a good western blot. I can almost bet you that your results are going to be vastly different. Sheesh, you already HAD Lyme, so it's practically guaranteed you'll have reactive bands on your IgG, at the very minimum. That's a sign right there how good LabCorp is. NOT!
Now, on to thing number next: Whole lotta people "seroconvert" -- i.e., test negative, take antibiotics for a while, free up some little borrelia creatures outta their cages, and voila -- test positive like crazy all of a sudden.
So, a good LLMD will know this. A regular doc wouldn't have a clue, but would be more than happy to give you all sorts of other labels instead (MS, chronic fatigue, etc.). He'll discount Lyme entirely based on some dumb LabCorp test.
But please don't go for it. You haven't REALLY ruled out Lyme at all... Sure sounds like Lyme to ME. Keep working toward a real diagnosis and get better!
Michelle
Posted by treepatrol (Member # 4117) on :
Get Igenex or MDL labs to do your lyme boodwork and get a LLMD to do it you need people to do this that know about lyme. I had negatives every year since 1988 until 2000 the reason they didnt do them correctly and then if it was they said negative because there werent enough of the CDC bands which are suppose to be for reporting only. Do you have your results f you can get them and post them we can help.
Posted by bpeck (Member # 3235) on :
You are DOCUMENTED as having Lyme in the past (there are no false positive Bulls Eye Rashes).
There is enough research evidence that lyme bacteria can survive antbiotic treatment in some people.
It is also FACT that there is so much controversy surrounding Lyme that you have a high probability of being mis diagnosed (probably with an autoimmune disorder) if you go to a conventional Dr.. They eventually will label you with something.
Since you have already ruled out afew other disorders, I think the probability is high Lyme is the problem.
I 'd do the month of antibiotics (as suggested in an earlier post) then wait a month - then get tested at Igenex.
Barb
Posted by pattilynn (Member # 8065) on :
Thanks everyone. I'll make the appointment. My symptoms are just so bizarre and changing daily, hourly. I searched to the ends of the earth and can't find any disease that fits the bill except lyme.
I clearly had the bullseye rashes (3) in 1992 and have never been right since. I took oral antibiotics for about 3 months back then, that's it. I had the neuro sx. then too.... numbness, weakness in legs, burning skin, floaters, hair loss, pain "everywhere", and many more.
My symptoms are sooooo much worse at that time of the month, I can hardly walk.
Patti
Posted by robi (Member # 5547) on :
Here it is in a nutshell. Labcorp is worse than flushing your money down the toilet. My labcorp tests were repeatedly negative.
You had a bullseye and inadequate treatment 15 years ago. You have Lyme ..... you need an LLMD.... it would be the rare doctor that will go down the lyme road with you unless it is an LLMD.
Oh yeah .......... this is just my opinion. PLease do yourself a favor and get to an LLLMD ASAP!!
robi
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by bpeck: You are DOCUMENTED as having Lyme in the past (there are no false positive Bulls Eye Rashes).
Well said!
Patti...glad you're going to seek an LLMD. Got one in mind?
![[Smile]](smile.gif)