posted
I have all the classic symptoms of Lyme...and I live in southeast PA...and I spend a lot of time outdoors camping and working.
My GP just gave me a Westerb Blot (skipped ELISA) and it was negative. I was surprised and I'm not inclined to believe this one test. However, my GP has already written off Lyme as a possibility...
Has anyone else with Lyme had a negative Western Blot?
What should I do? Demand a cycle of Doxy to see if it helps? What would be the harm?
Posts: 40 | From Lancaster PA | Registered: Aug 2007
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posted
I tested negative 8 times via w/b. I finally was told by every regular doctor that there was nothing wrong. I went to a LLMD (lyme literate medical doctor) and she tested me through Igenex and it came back very positive. Go to Igenex.com and check them out.
As far as testing in general.....Lyme should not be diagnosed by test's alone. The doctor should base diagnosis on clinical findings, meaning you can very easily test negative and still have lyme.
You need to find a llmd and fast. I went a while without being treated and am still not better. Take action and become proactive. That is the only way to regain control of your health.
Good luck, Rich
Posts: 413 | From nj | Registered: Nov 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Multiple negative WBs.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Yep, me! Don't let it slow you down! Fight for your health and your life!!
You could go for a trial run of abx, that might work! IF you get doxy and you feel worse after a few days, that's a VERY strong indication that you have LYME!
The lab that your dr used is most likely a lab which does an inferior job of testing for Lyme disease.
You need a test through one of the better labs, like Igenex. www.igenex.com
Dr. Bransfield's Reason's for Seronegativity the reasons why you can test negative and still have Lyme disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls) 4. Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.) 5. 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, 100 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 (L-form) with no cell walls 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 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S"- layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks all for your input. Just back from another visit with my GP. I asked her straight up for a cycle of antibiotics just to see, and she said "no way, not with a negative WB test." I challenged her about the possibility of a false negative (my blood was drawn on a Friday but not tested until Monday, so I know that's not protocol), and she said "you've had no flu-like symptoms."
So, let me as all you good folks: do all LD cases present flu-like symptoms? If not, what percentage do?
Thanks a ton!
Posts: 40 | From Lancaster PA | Registered: Aug 2007
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posted
Every person has a different symptom complex. Mine started as dizziness, pelvic pain, ringing in ears. As little as 40% of those infected with lyme get the bullseye rash. Most Lyme docs say that the rash indicates a FULL BLOWN POSITIVE CASE OF LYME. Take a picture of the rash in case it goes away before you get to the lyme doc, because that's where you need to be.
I used to love my Dr. but once I knew more than him about lyme (within the first 2 days of research) I had to move on. Please find a llmd.
Posts: 413 | From nj | Registered: Nov 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
I know someone who felt great but had lyme and tested positive but the Lyme ate the joints in his Knees and had to get both knees replaced-
He looked fine too- Lyme is craze like that-Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Several negative Elisa's and WB's via Quest over 13 years; most recently in 2004 and 2005. Last month I was tested via IGENEX western blot for the first time. IGM was IGENEX AND CDC POSITIVE; the IGG was IGENEX POSITIVE AND CDC NEGATIVE; but 3 out of 4 was good enough to get me diagnosed and finally get some antibiotics.
Posts: 48 | From New Jersey | Registered: Aug 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I had some symptoms of infection when I had the bulls eye rash, but I wouldn't say full fledged full symptoms. I had chills and a bad headache. But it didn't last more than a day or so.
Was the western blot done through a regular lab, like Quest or Labcorp? If so, then they don't test all the bands. They only test the bands that the CDC uses for tracking Lyme infections, and that leaves out some important bands.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
[QUOTE]Originally posted by improver: Every person has a different symptom complex. Mine started as dizziness, pelvic pain, ringing in ears. As little as 40% of those infected with lyme get the bullseye rash. Most Lyme docs say that the rash indicates a FULL BLOWN POSITIVE CASE OF LYME. Take a picture of the rash in case it goes away before you get to the lyme doc, because that's where you need to be. Good info!
I used to love my Dr. but once I knew more than him about lyme (within the first 2 days of research) I had to move on. Please find a llmd.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by Aniek: Was the western blot done through a regular lab, like Quest or Labcorp? If so, then they don't test all the bands. They only test the bands that the CDC uses for tracking Lyme infections, and that leaves out some important bands.
Yep!! I'd bet good money it was not run by Igenex Lab and therefore is worthless.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
My WB test was done by a local lab in York, PA. Blood was drawn on Friday, they did the test and faxed the results the next Monday. It was straight negative...and my doctor believes it 100%. I guess it's time to find a LL doc...
Meanwhile, numbness, tingling of arms and legs, abdominal cramps, migratory joint pain all continue. Not much fatigue, nor any rash or flu symptoms...which is why my GP won't give me Abx.
Thank again to ALL for the input.
Posts: 40 | From Lancaster PA | Registered: Aug 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yes, I had a negative WB from Igenex. Just because Igenex does it, doesn't mean it'll come out positive if you have lyme. They are said to be the best lab; it's just that lyme tests aren't very accurate.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I am technically negative through Igenex, but I do have some bands specific to Lyme that were positive. Those bands are very important to a trained eye. Even though I am negative, my daughter is CDC positive and it is believed that she got the Lyme in utero from me.
Posts: 1251 | From california | Registered: Apr 2005
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quote:Originally posted by wxrock: My WB test was done by a local lab in York, PA. Blood was drawn on Friday, they did the test and faxed the results the next Monday. It was straight negative...and my doctor believes it 100%. I guess it's time to find a LL doc...
Then it had to be the ELISA. They are VERY notorious for false negatives.
Blood for the Western Blot should be drawn early in the week so it does not sit around in the post office or a truck all weekend.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi wzrock
IGG was negative and IgM Equivocal was(indeterminate)
Most important was I had band 31 +++...and never had the lyme vaccinne.
I had almost all the lyme symptoms, and responded to treatment in very classic lyme fashion.
Personally I think one of the reasons I test negative to WB's ~ other than they are 50% inaccurate ~ is because I have had chronic lyme for 21 years. And it's harder to detect antibodies in blood after I had become chronic many years ago.
posted
Wxrock, we're basically neighbors, let me know if you find a LLD locally, been looking for a while, I've had + western blott in the past, but negative lately with symptoms returning recently, doc won't treat me because of the negative result. I hope to hear from you.
Posts: 25 | From PA | Registered: Aug 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi wxrock,
Yes. Lyme Disease can present differently to many people. It does not always start or present as a flu like illness.
I have a friend in CT where the lyme went straight to his heart & he only had heart involvement, no other symptoms.
Another friend whose grandson just has neuro problems. He plays soccer & no flu symptoms at all. It went to his brain & he has mainly neurological problems. ( memory, concentration & brain sweeling ect..)
Like Jay I know alot of people that it settled just in their joints. I have read way too many posts from patients where their main symptoms where just crushing fatigue & headaches.
It's a insidious disease. Often called "The great imitator" Here's a link:
Lyme can settle in one area for a long time and be very happy there. Be careful though, without proper treatment, over time it can disseminate and worsen.
It's a tricky disease to treat. A regular GP is not up on the latest findings & research ~ and usually does not have much patient experience.
That's why it is important to get help as early as possible. As others have suggested seek a lyme literate MD if you supect lyme.
Take care Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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