posted
Extreme fatigue, tingling hands and feet, ear pressure, tippy feeling, headaches, back pain, sound sensitivity, muscle weakness
no joint pain so they say no lyme
ELISA negative, spinal tap negative
Posts: 9 | From North Shore Mass | Registered: Aug 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
What do your tests look like and who says no Lyme?
Some of my main symptoms have been: extreme fatigue, muscle twitching, back aches, numb extremities, particularly in bed...probably related to the low pulse rate Lyme often causes
...and recently I've had the stuffy ear thing...not sure what that is....
My joints have been minimally effected and are not one my major symptoms...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Sorry, I see you have had the Elisa....I'd pursue the western blot through a LLMD if possible...
the Elisa test stinks...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi LG
Elisa test is useless - negative elisa test means nothing --
Are you going to a LLMD( Lyme Literate MD)
sound like you are going to a ID doctor-
Spinal taps usually dont show Lyme- although there was a couple of people here that said there ST showed something --
but ST is not the best test --
A western Blot done threw Igenix lab is the best but still no guarantees that it will show something
This is why Lyme is DX(diagnosed)by symptoms Only-
the tests are very poor and very inaccurate so dont base treatment on test results alone
Hope this helps you--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Ive never had joint pain and Ive had lyme since 2002.. and bartonella.. and erlichia.. and mycoplasma, etc.
Please please post in seeking a doctor. I had all the rest of your symptoms and then some!
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Nessa1815 Frequent Contributor Member # 15697
posted 06 August, 2008 09:19 PM -------------------------------------------------------------------------------- I have all of those, I had back pain before Lyme though. I don't have the tippy feeling.
I also have painful ribs and horrible neuro neck pain.
My tingling hands and feet was the 2nd symptom to make me realllllllllly realize something weird was going on.
At first I thought it was anxiety, but I wasn't anxious.
I'd get an LLMD. I heard that spinal taps aren't that reliable.
I had one test that was negative. Then another was positive after 1 round of antibiotics. I would maybe try to get some antibiotics, then test again.
I always thought that the abx helped my body fight it enough to make antibodies for it so it finally showed up as CDC positive through Labcorp.
I just now have gotten an LLMD and we did some IgeneX testing, I don't know what those will say!
If those come up negative, I'm going to go crazy I think.
Good luck.
-------------------- "~*~My smile hides my bite~*~." ~~~~~~~~~~~~ My Myspace filled with pictures/blogs of me and my family.
You can locate an LLMD here by going to Seeking a Doctor.
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
-------------------- Do not take this as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
posted 07 August, 2008 01:14 AM -------------------------------------------------------------------------------- check newbie package link below here...
Welcome; so glad you found us!! xox
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! *************************************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Example:
PLEASE show your positive, +/-, and IND numbers from both western blot IGG AND IGM blood tests; do it this way please!
IGM ... do same thing for IGG below IGM *******************************************
18 + 41 +/- 78 IND
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! -----------------------------------------------------------------------------------
also, please see below, 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.
see my newbie package info; click on link at bottom of my package. @ http://tinyurl.com/58eyou ****************************************
-------------------- Bettyg's NEWBIE PACKAGE w/TABLE OF CONTENTS! http://tinyurl.com/58eyou NOT CONSIDERED MEDICAL ADVICE! Info provided should not be used replacing your personal MD's advice. Site links are provided for EASY RESEARCH.
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Posts: 9 | From North Shore Mass | Registered: Aug 2008
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posted
hcconn22 Frequent Contributor Member # 5263
posted 07 August, 2008 01:15 AM -------------------------------------------------------------------------------- Symptoms are consistent with Lyme.
You also live in an endemic area.
ELISA test is worthless.
Spinal tap is worthless & painful too. Normally used to DISPROVE Lyme Dx for insurance.
Both of these tests tell me you are not at a Dr or medical clinic that knows anything about Lyme.
Find a LLMD, and get help.
Get a Western Blot test from a good lab- Igenex, or you can start at a standard local lab. This test is better than both above, but still only is at best 40% indicative. Lyme Disease is a CLINICAL DX and not a simple test.
Ticks also carry several other pathogens- that can make you equal to or worse than Lyme. Please search on lyme disease co-infections on this site or Google. Babesia, bartonolla and Elickelois are VERY common in New England.
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