posted
First off, thanks for a great site. The information found here is fabulous.
I requested that I be tested for Lyme after experiencing palps, aching joints, stiff neck, persistant headaches, 1 mild tremor, and having knowingly been bitten twice in the past year.
My Dr. ordered a Holter monitor test, and EKG, which revealed a partial left branch bundle block. This lead to a stress test, and nuclear imaging, which revealed a mostly normal stress test, and a questionable spot on the imaging.
The cardiologist feels that it is probably nothing, but has ordered more cardiac tests.
Should I have had to ask to be tested, or should the Dr. have suspected something? Also, how long does it take for the results?
I understand that the tests are not always accurate. What should be done if it comes back negative?
Thanks to all.
Posts: 8 | From Pennsylvania | Registered: Mar 2008
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posted
If you really think you have lyme and possible co-infection you should get your blood work done at Igenex. MUCH better results then your doctors office test.
The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Don't ask your doc to test you -- he'll do the standard "ELISA" - the first test docs usually use. It's up to 70% of the time wrong, according to a John Hopkins study (and others too). If negative (and they usually are), he'll swear you don't have lyme.
Instead, demand an IGeneX test -- a western blot. WAY more accurate. Call them and have it mailed to you. www.IGenex.com - ask for tests 188 and 189. Your doc will have to sign off first. Then take to lab and have blood drawn and sent off in prepaid fedex mailer. Then post results HERE!! Your present doc won't likely know how to interpret them.
You'll need to prepay as IGenex doesn't bill insurance, unless you have Medicare.
They do a WAY more thorough job than any other lab since they're a tickborne disease specialty lab, testing for more strains than other labs and including more bands than other labs, like bands 31 and 34 - the most specific bands on a western blot -- bands other labs conspicuously leave out.
Don't let these things delay testing, but DO get an IGeneX test and seek and appointment with an LLMD!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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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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bettyg
Unregistered
posted
WELCOME, would you like a copy of my newbie package of 112 pages info galore includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 of 112 pages since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain thigns: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR, no infrared SUNGLASSES, etc. and how to use this board!
if yes, please send me a PM, PRIVATE MESSAGE, it's 2 people standing together icon asking me to send it to you. i will send within 1 day of receipt of your pm; thanks **************************************************
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posted
Based on those symptoms, yes, the doctor absolutely should have tested you for Lyme and it is negligence if you ask me that he/she didn't.
Regarding other posts, even if your PCP were on the ball and tested you for Lyme, he/she likely would have only tested you using the ELISA. Problem with the ELISA is that it really isn't accurate depending on the presentation of the disease (seems to be more accurate for arthritic presentations versus neurological) AND is highly dependent of the stage of the disease (not as accurate early on or late in the disease).
I would highly suggest asking for the Western Blot. I was ELISA negative and had a positive Western blot from Quest laboratories.
Posts: 561 | From mass | Registered: Jul 2007
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posted
Aquita9, I would suggest getting the latest test that is available to people that suspect that they have Lymes. Contact Central Florida Research Inc. This lab has a new antigen test that studies show to be about 90 persent accurate. In the Lakeland Ledger article done on CFR it quotes "Even when doctors suspect a patient might have Lyme, the most widely used diagnostic tool, a blood test called a "Western blot," it is accurate less than half the time, said Nick Harris, the owner of IGeneX Labs in Palo Alto Calif.,the leading U.S. lab for Western blot screening." CFR uses a Flow Cytometer that looks for the antigen not antibodies. They are having great results with this new test. CFR "It may be the best current method for identifying the pressence of the organism in the patient today." You can call (863-956-3538) ask for Tom Long, he is very informative.
Posts: 11 | From florida | Registered: Dec 2007
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posted
Thanks everyone for taking the time to post.
I have not heard back from the Dr. yet, but I will take your advice and push for further testing if nothing shows up this time.
Posts: 8 | From Pennsylvania | Registered: Mar 2008
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