posted
After so much time and effort spent pooh-poohing the ELISA test (and still rightly so, I feel) I am now having a heck of a hard time defending it --- let me explain!! My 22-yr-old nephew who climbs mountains and runs in marathons has been sickish for the past few years, ever since an episode of pain in his knuckles, a rash under both arms and one drooping eyelid. He's had extreme fatigue, off-and-on fevers, light-headedness, aches in his arms and legs, breathlessness, need I go on?
He finally emerged from his "Lyme Denial" and went to the doc, who did extensive bloodwork (thyroid, CBC etc., all fine) including a Lyme ELISA, which -- whoa!! -- came back positive. Naturally (did we think otherwise?) the doc has told him "that just means that at one time in your life you were exposed to Lyme Disease. Doesn't mean you have it now. So we'll wait for the Western Blot to come back and if that's negative we'll just pursue other avenues." Sure, of course, might be some rare elusive disease -- after all, nephew lives in southern Connecticut and works outdoors cutting brush, etc. Anyway, having known so few who tested + on ELISA, but being in the position now to assure nephew "you got it, babe," I can't find much of anything saying ELISA is accurate, except for all those articles stating how false positives are so common. (You know the ones.) I was nailed with Lyme and Babesiosis at age 28 and since then have had pretty much no real life. He's 22 and he and his brother ARE my life, so can anyone help us? What if he tests - on Western Blot (as we know, a real possibility)? How do I make sure this kid gets treatment?
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
My first ELISA was negative from my PCP, then of course he said "you don't have lyme"
But then I went to an LLMD who did another ELISA and 2 Western Blots (from different labs) and my ELISA that time was positive but the Western Blots both came back IND. Luckily for me I was seeing an LLMD.
So actually the only positive test I've had is an ELISA.
With 18months of treatment so far, I am doing so much better. So tell your newphew to get treated by an LLMD. He will understand how to read the tests even if the WB comes back negative. He may have specific bands to Bb and still have a negative or IND test. Which means he should be treated.
posted
Thanls Lisi. It goes without saying, a LLMD is the ticket, but he's a college student working part time and can't afford it (in fact doesn't even have insurance and is paying everything out of pocket now).
What I'd ask for is any citations, articles etc. he can be "armed with" for his next dr. visit in case the WB is negative. Then, he could perhaps persuade this doc to treat him even if so, rather than order more unnecessary expensive tests for diseases he doesn't have. There are plenty of articles of course saying the WB does have lots of false negatives. He has that material. But we have nothing saying a positive ELISA with a false WB is accurate - because all of the articles about false negative WBs also put down the ELISA as unreliable. Help!!
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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Have the doc start him on Doxy NOW, while waiting for the WB. No reason not to!!
By the way, how long have you been sick - did you discover your lyme right away?
Posts: 109 | Registered: Aug 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi,
I know I'm preaching to the choir with you because you've already been through this. But you need to remind him that a Lyme diagnosis is based on clinical symptoms as well as test results. His clinical symptoms sure sound suspicious enough!
His WB may come back positive and that should put things to rest. But even if it came back negative, an LLMD may give him a short-course of Doxy to get the spirochetes into the blood and then re-test with the WB. IGeneX can give you the paperwork that explains this protocol if he can only go to a non-LLMD.
As one poster mentioned, just having him go on Doxy will tell you something - and hopefully help him a lot. I was deteriorating so rapidly pre-treatment, came back with a positive WB, and also started doing great on even low-dose Doxy. My LLMD said that my improvement on Doxy was virtually confirmation alone of a bacterial infection.
Good luck! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Do you know about the website, a great info source, at www.lymeinfo.net ?
Also, here is an abstract for a study which concluded that lyme is a clinical diagnosis. If this person has lyme symptoms and a positive ELISA, with the history you describe, it is ridiculous to wait for another test result. He should be treated now.
I should point out that I don't agree with everything this article says, in that they are suggesting a full battery of tests that are not even available to doctors in private practice. But they do make several useful points: clinical diagnosis, and lack of acceptable performance by tests used.
If this doctor does not realize that the ELISA/WB two step testing is not meant for clinical application, but for surveillance, then he may not be willing to prescribe.
J Clin Microbiol. 2005 Oct;43(10):5080-4.
Two-year evaluation of Borrelia burgdorferi culture and supplemental tests for definitive diagnosis of Lyme disease.
Division of Medical Microbiology, Department of Pathology, The Johns Hopkins University School of Medicine, Baltimore, MD 21205, USA.
Lyme disease is usually diagnosed and treated based on clinical manifestations. However, laboratory testing is useful for patients with confusing presentations and for validation of disease in clinical studies. Although cultivation of Borrelia burgdorferi is definitive, prior investigations have shown that no single test is optimal for Lyme disease diagnosis. We applied high-volume blood culture, skin biopsy culture, PCR, and serodiagnosis to a cohort of patients with suspected Lyme disease acquired in Maryland and southern Pennsylvania.
The study was performed to confirm the relative utility of culture and to identify laboratory testing algorithms that will supplement clinical diagnosis. Overall, 30 of 86 patients (35%) were culture positive, whereas an additional 15 of 84 (18%) were seropositive only (51% total sero- and culture positive), and PCR on skin biopsy identified 4 additional patients who were neither culture nor seropositive. Among 49 laboratory test-positive patients, the highest sensitivity (100%) for diagnosis was obtained when culture, skin PCR, and serologic tests were used, although serologic testing with skin PCR was almost as sensitive (92%). Plasma PCR was infrequently positive and provided no additional diagnostic value. Although culture is definitive and has a relatively high sensitivity, the results required a mean of 3.5 weeks to recovery. The combination of acute-phase serology and skin PCR was 75% sensitive, offering a practical and relatively rapid alternative for confirming clinical impression. The full battery of tests could be useful for patients with confusing clinical signs or for providing strong laboratory support for clinical studies of Lyme disease.
Publication Types:
* Evaluation Studies
PMID: 16207966 [PubMed - indexed for MEDLINE]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
In answer to your question, newdurham, I was infected in 1984 -- yes, I was diagnosed right away, I had the bull's eye, a 104 fever, blinding headache, every bone in my body hurt from toenails up, vomiting, no tests done, a clinical and correct diagnosis. Unfortunately I was only given 7 days of Doxy and I threw up the 1st two pills. So 6 days of Doxy. Sure I felt great a week later but was sick again within a year and never got well. I wrote about it at www.angelfire.com/ct/lymejourney
I agree it's ludicrous to withhold abx until WB comes back. I was standing in line at the drugstore (sounds like the beginning of a Rolling Stones song, doesn't it?) today and overheard a woman telling someone she was there to pick up abx for her daughter who has Lyme. Her ELISA had also come back positive. So had her WB. The woman was disgusted because the doctor hadn't given out abx to the girl until that WB came back. Her daughter had "achey" symptoms that didn't scream "Lyme" but the mom had a feeling she had it. (Is it just me, or do you think it's kids who have the best results with testing positive?)
I was so grateful when I heard that my nephew had a positive ELISA. He has been feeling so very ill. Then, when I heard the doc was waiting for the WB, I had to take 1/2 a tranquilizer. Didn't work and I had to take the other half. I can barely restrain myself. If the positive ELISA means that my nephew was exposed to Lyme in the past -- then how'd it go away without treatment??
And I really liked this doctor when I met him -- he did well by my parents, both of whom are senior citizens with challenging health concerns. I may be borrowing trouble, maybe the WB will come back positive. But if not, dear lord, here we go again.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
They called today - WB is NEGATIVE. And "the doctor is so pleased he doesn't have Lyme Disease." And "please call back if there is anything else we can do for you." He, of course, has Lyme, knows it, believes he has had it for at least 1 1/2 years, and without $$ or insurance we don't look too lucky -- yup. And that's the way it is, here in the heart of Yale country. Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Oh, dear, Laurie. What lab ran his western blot? Bet it was a crappy lab. Probably one that doesn't read all the bands. Ask for a copy of his western blot. Maybe he has lyme-specific bands that are positive, but his doctor wouldn't know it unless the test reads 'positive.'
Any chance of getting a western blot done at IGeneX?
It's apt to be WHOLE LOT different than a Quest or other lab's work. I.E., way better and more accurate.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Laurie-
Your nephew is in the same boat as I was. Positive ELISA, negitive WB and no insurance.
This means he does not have lyme as far as insurance goes.
GET HIM INSURANCE ASAP. He doesn't have a pre-existing. This is what I did. I could only afford an HMO, but it does cover the lab work and drugs, my llmd takes cash, which works for both of us.
Posts: 1572 | From Pa | Registered: Jun 2001
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WildCondor
Unregistered
posted
The ELISA is awful, misses HALF of all cases. The Western Blot os not much better, and 2 of the most important bands have been removed for diagnostics. Lyme disease is a CLINICAL DIAGNOSIS people!
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posted
Thanks guys. I'm so upset to see the 2nd generation in the family beginning this horrid journey your help, suggestions, questions and replies mean everything to me right now.
I don't know yet which lab ran the WB but I told him to get down to the dr's office next week ASAP and get copies of his lab work.
In speaking to my brother and some of you, I realized that a neg WB might in fact work in our favor right now. He is 3 weeks from completing college and becoming an official alumnus, and there is some health insurance offered thru his college - short-term (prob pretty expensive but whatever) until you are hired somewhere with insurance. His part time place is SUPPOSED to give him 40 hrs after graduation and then in 3 months health insurance. If he can get some insurance quickly, then the neg WB means it isn't a pre-existing condition (even though we know damn well it is).
Reading more about the two tests, I understand the ELISA is machine driven with consistent machines in labs, so false positives are very rare, though false negatives common (the "just because you didn't catch one doesn't mean there are no fish in the sea" situation). I'm not sure if this makes me feel better or worse! Anyone know if this is correct?
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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posted
The ELISA test is the reason why I have Chronic Lyme. I was told something like 5-10% chance it would be false-positive and 30-50% chance it would be a false-negative. The ducks seem to always think it gives false positives but not false negatives. I expect the false-negatives are more common than 30-50%.
My LLMD said only 2% of his patients has a positive ELISA.
Posts: 263 | From UK | Registered: Mar 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
Good advice to try for some insurance......even student insurance might be a help.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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