posted
I have had 3 negative ELISA tests, I don't believe the labs have been doing WB unless the ELISA is positive. For the last 2 months, my symptoms started with tingling in my legs and hands, changing between numb sensation, and burning sensations at times. Also I have had brain "fogginess" and seeing what look like ameoba spots through my eyes. My balance has been off, and I sometimes feel like the room is moving when I'm sitting. Also I have a feeling of walking on water in the bottom of my feet? I was wondering if anyone has had numerous negative ELISA tests, and then tested positive for Lymes. An MRI of my brain and Spinal cord has showed no other problems, and all my bloodwork is normal. Any info will be appreciated.
Posts: 25 | From US | Registered: Nov 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
You need to get a Western Blot done by Igenex in CA. Call them and get a kit and then ask your doctor to order it for you (ie; draw the blood and put his signature on it). However, you need to get to a LLMD (Lyme literate MD) ASAP because the other docs out there don't understand this disease. Post in "seeking a doctor" and someone will help you.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
The description of the symptoms in your feet are exactly what I've been going through (including the water -it's amazing). I'm waiting for the blood work from the above mentioned lab to be returned but I believe in my case it's Lyme since I had Lyme in 03 (positive WB test combined with every symptom down the line including the rash) and the recent bout was triggered by a series of steroid injections for back problems.
Posts: 12 | From PA | Registered: Nov 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Some people will never be blood positive but DO have Lyme disease. Even Igenex does not get everyone. That is why it is a clinical diagnosis. **************** From "The New York Times", 1993. A few excerpts.
Lyme Disease: Does It Really Linger? Those who claim long-term ailments pose a puzzle. By Elisabeth Rosenthal
From her bed at Northern Westchester Hospital Center, Vicki Logan begs to differ with academic scientists who claim that there is no such thing as chronic Lyme infection and that Lyme is cured with at most four weeks of antibiotics.
Since 1987, Ms. Logan has battled headaches, fevers, fatigue, progressive paralysis,seizures, periods of dementia and memory loss so severe that she remembers only the previous three weeks out of the last year. For much of her illness doctors told her she could not possibly have Lyme disease and prescribed no antibiotics.
Two years ago Dr. Kenneth Liegner, a Westchester internist, decided to buck conventional wisdom and try giving her prolonged courses of antibiotics that could kill the Lyme spirochete: she improved somewhat during each course of the drugs, and relapsed when they were stopped. Dr. Liegner became convinced that Ms. Logan had chronic active Lyme infection that could be controlled but not cured through daily drug treatment.
Others, including consultants at the Mayo Clinic, disputed the diagnosis, saying that after months of antibiotics, Ms. Logan - if she ever had Lyme - had certainly been cured. But recently, Dr. Liegner was vindicated: scientists at the Centers for DiseaseControl and Prevention in Atlanta found the Lyme spirochete, Borrelia Burgdorferi, swimming in a sample of Ms. Logan's spinal fluid. ........... A handful of cases like Ms. Logan's are challenging conventional assumptions about Lyme disease and igniting a fiery debate about the usual course of this increasingly common infection: Are disastrous experiences with Lyme like hers the rare exception or the rule? ........... The Lyme organism is extremely difficult to culture, particularly when the disease is advanced, so doctors are left relying on indirect and imperfect tests to determine if a patient with continuing symptoms is infected. The current Lyme test detects the patient's immune response to the parasite and is prone to false readings. In most cases it is impossible to say with certainty that a patient harbors the bacterium. Even among patients whom all doctors would agree have Lyme infection of the central nervous system - who have a known tick bite, a typical Lyme rash and test positive on all current tests - only 10 percent have spinal fluid samples in which scientists can find the germ.
"In most infectious diseases, you don't diagnose until you identify the organism - which is the sine qua non - anything else is inferior," said Dr. Mark Klempner, a Lyme expert at Tufts-New England Medical Center. "But in many cases of Lyme we're stuck. We can't find the bacterium. Until we have a better diagnostic test that actually finds or measures multiplying bacterium, we're going to have problems knowing which if any of these patients have an ongoing infection and who might benefit from treatment." ........... Researchers have come to believe that chronic Lyme may be difficult to detect and treat because it is caused by a very few free floating organisms that are confined to the joint spaces and central nervous system - sites that many antibiotics do not reach. Recent work in Dr. Klempner's lab has shown that the spirochete may spend at least part of it's life cycle inside cells, where they are similarly protected. ........... Unfortunately, scientific advances have not clarified whether the small number of well-documented cases of chronic Lyme represent anomalies or the tip of a huge iceberg. ............ There are similarly loud disagreements about how often people who test negative on the standard Lyme antibody tests can nonetheless have Lyme disease. It was because Ms. Logan initially tested negative on this test that she went untreated for years.The newer lab methods have proved that this is possible, but no one is sure how common it is.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
I've had a total of 4 negative ELISA's in the past year. Meanwhile I've been symptomatic for almost 2 years. Tested CDC IgM positive on the Western Blot. I had wondered whether this could have been a false positive...
After 2 weeks into antibiotics, got sicker than I had ever been (herx) and it has been a slow, uphill battle on antibiotics ever since.
Unfortunately it is all too common to get a negative ELISA...
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Hey, three Elisa negatives must be our magic number. I too had three separate Elisa tests, one even being in the ER and was told due to it being negative, I couldn't possibly have Lyme.
Since I was unaware of the controversies or the fact that this test wasn't even a very good screener, I was stupid enough to believe them and let them yank me around to every type of specialist out there to keep getting all sorts of wild misdiagnosis's.
As said earlier, considering your symptoms AND since I too had THREE NEGATIVE ELISA's, I would definitely tell you to get to a LLMD and get tested through Igenex.
They are going to pick up on cases that are slipping through the cracks and if nothing else, a LLMD can help you either treat or else rule it out. Good luck in your search.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
The one thing I forgot to mention, after I got my brain MRI about a month and a half ago. I was given antibiotics Ceroxumine for a minor sinus infection, 300MG 2 times a day for 10 days. While on the antibiotics I still felt bad, even worse, 2 days after stopping them I felt fine for a week, and then my symptoms all came rushing back. Has anyone experienced this? Does this seem to make sense if it's Lymes? I'm going to try and see a doctor in Towson who is a LLMD by the new year. Thanks for the info so far.
Posts: 25 | From US | Registered: Nov 2007
| IP: Logged |
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
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic