hi everyone... an arkansas supermom...struck down the end of july...with all the symptoms of lyme..and a negative test. 28 thousand dollars later..and i just spent 12 days at the ochner diagnosis clinic in new orlenes with no luck. we have ruled out everything bad that could possibly be, yet i still cannot walk..numbness in my right arm and both sides of my face. i would like to talk with someone about the initial begining of this transformation of my physical self. whatever happened to me went thru my body within 20 days. i felt it go thru me. i want to know what the acute stabbing pain sparatic 10 to twelve seconds apart that started in my legs and spread throughout was. it was like sciatic pain.
Posted by Michelle M (Member # 7200) on :
Hi Arkansas Supermom!
Well, lyme is certainly a likely culprit, but you're smart to be checking out all sorts of things if you don't have a specific memory of a tick bite.
Sounds like everything else is coming up negative too, right?
The one thing that doctors are notorious for NOT KNOWING or rather, knowing but keeping secret from patients, is that conventional lyme testing is unreliable.
In other words, chances are, your Lyme "test" was at some lab like Quest or Labcorp.
Lyme is a clinical diagnosis, made by an experienced doctor based on your symptoms and history. Testing is done through a really good lab like IGeneX in California which specializes in tickborne diseases.
Take a took at the symptoms list (see the Newbies links at the top of the forums) and see if you have other symptoms other than those you describe.
Post in "seeking a doctor" with your city and state and make an appointment with a lyme-literate doctor.
When you say you've "ruled everything out" do you mean the whole works -- i.e., you've had brain MRI, spinal tap, EMG's, the whole nine yards?
Be aware that neurologists are some of the worst at recognizing lyme even when it's under their noses!!
Let us know more so we can help!
Michelle
Posted by bettyg (Member # 6147) on :
quote:Originally posted by beaglethings:
hi everyone..am arkansas supermom.
struck down the end of july with all the symptoms of lyme and a negative test.
$28,000 later and i just spent 12 days at the Ochner Diagnosis Clinic in New Orlenes with no luck.
we have ruled out everything bad that could possibly be, yet i still cannot walk, numbness in my right arm and both sides of my face. :
i would like to talk with someone about the initial begining of this transformation of my physical self.
whatever happened to me went thru my body within 20 days. i felt it go thru me. i want to know what the acute stabbing pain sparatic 10 to twelve seconds apart that started in my legs and spread throughout was. it was like sciatic pain.
Welcome! What specific lyme tests were done and what LAB? We recommend WESTERN BLOT IGM & IGG BE DONE BY IGENEX, CALIF. They are 1 of 3 top tick/lyme diagnostic labs in USA with: MD Labs in New Jersey and Bowen in Florida.
I'll send you a private message, PM, with my 19 pages of newbie links/advise to help guide you too.
Yes, it's so disgusting to have seen so many drs. and $$$ and have NO results of a CORRECT DIAGNOSIS!
This is a 24/7 education/SUPPORT board, and we are HERE FOR YOU! Take care, and read, read, and read. Knowledge is power in the lyme journey. Bettyg Posted by Lymetoo (Member # 743) on :
Hey neighbor!! I urge you to get tested thru Igenex Labs in CA....ASAP!!!
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
Within 30 days of seeing the Lyme Bullseye I was Real Sick-- I went form 34 to 75 yrs old in one month-
I knew something serious was wrong-- Ductors had No clue-
Took ME 18 yrs to figure out what was wrong- Dont let this happen to you--Jay--
Posted by run4fun (Member # 10204) on :
Check out chronicneurotoxins.com see if any of the info applies...any chance of contact with heavily toxic or polluted waters, fish, molds, etc?
I dont know...but just another possibility...not everything is LYMES!
run
Posted by minimonkey (Member # 8693) on :
run4fun --
It's LYME, not LYMES. Pet peeve for a lot of us Posted by Lymetoo (Member # 743) on :
quote:Originally posted by minimonkey: run4fun --
It's LYME, not LYMES. Pet peeve for a lot of us
No kidding. And the cholestyramine has limited effectiveness.
Posted by MommaK (Member # 10376) on :
Hi and welcome!
My prayers and go out to you! Sounds like you really are suffering.
Your topic was about being tired. Is that one of your worst symptoms, or are you tired of the pain etc.
You mentioned Supermom , our llmd said he never met a lazy person with chronic fatigue! I think that means lyme too. They are usually high achievers and perfectionists, physically active and often athletes.
Just got back from llmd in LA and am on cloud nine! Not only do we have answers, the list of culprits is long! Also found out my dd's B12 level was too low! Had been a low "normal" before but now actually low. One B12 shot later my dd feels better already. Not the cure, but part of the puzzle.
Keep posting! I have found the folks here are great support and have a genuine desire to help others!
MommaK
FYI, I suggest if you don't already have a copy of them, get a copy of your medical records. You might want to check into exactly what was tested (and not tested) and especially what lab did the lyme test. You can order your own test from Igenex! I've learned a lot by looking at the lab results and googling the test and learning about it.
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