posted
well, dr's office just called, lyme was negative. i'm actually disapointed, maybe i'm in denial about ms or als or something equally degenerative. weird thing is, once i started on the zpac, i was starting to feel better and still do. i was on my fifth day of zpac, my last when i was tested. i saw the opthamologist today and everything was fine. monday i see a neurologist. i'm scared. i figure my symptoms started about four - six weeks ago and now i'm faced with neurological testing that will determine my future. my vertigo seems to have subsided as has my walking problem. my shoulder is still stiff but fingers working well. maybe the remitting relapsing ms is going away, i was really hoping for a positive as the antiobotics seemed to make a difference. i guess their's no chance of my pcp giving me a 30 day supply of antibiotics since i was lyme negative. sorry for the negative post but my symptoms were so typical and came and went that i was really hoping it wasn't something more progressive. good luck to you all karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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posted
Karen... it may be lyme. If your eye sight is still messed up, don't let your eye doctor tell you it is ok... mine said i had 20 / 20 vision even when my vision was at its worse.
LAst week I saw my neuro optimologist, and she said the sickest of the sick have negative lyme tests, no antibodies.
Ironically enough, I was given antibioitcs(levaquin) for a sinus infection, and sure enough not only did my sinus infection go away, so did my brain fog, dizzyness, and 2 or 3 other problems. I have since been on antibiotics for 3 months or so, and have made a tremendous recovery, I am almost well again.
Please pursue a Lyme literate doctor(it still may not be lyme, but a Lyme literate doctor is best to make that call). Which state do u live in, we would be happy to help. Do not give up.
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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posted
What lab was used?? Makes a HUGE difference. Since you are in a Lyme endemic area, you need to pursue this with a GOOD QUALITY lab like Igenex in CA.
Which TEST did you have? If it was an ELISA, then forget it. They are known [even Johns Hopkins says so] to be 75% INaccurate.
REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR 1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochetes are deep in host tissue 5. Only 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 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 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
posted
i live in uxbridge, massachusetts. if anyone knows somebody who is a specialist that would be great. i figure if neruological symtpoms started to go away with antibiotics i might not be totally crazy but then again i've spent too much time on the web researching possible causes. i hate the fact that i'm feeling better but may find out a neurologist thinks different or the fact that with recent vision problems i have 20/20 vision with healthy eyes.
back to the drawing board karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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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
-------------------- --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 Firepersnurse and welcome to lymenet,
Listen to lymetoo she's been here almost the longest and knows what she's talking about.
Which lab where you tested at? CDC negative doesn't mean you dont have lyme. Read the list lymetoo provided.Here is a link that explains it further:
The tests for lyme are inaccuate for many reasons as stated in the above link. Even the CDC say that lyme should be a clinical diagnosis(symptoms and patient history)
If you felt better on the antibiotics-that speaks volumes.
JMHO but neurologolists and infectious disease docs are bad at recognizing and treating lyme. There are a few exceptions though but not the rule.
I went to a neurologist just to rule out stuff like brain tumors ect.. But for treating lyme and the co-infections it is a must to find a lyme literate doctor for treatment.
Do some reasearch by reading the links provided and at the newbie section too. I hope you can find a doctor that knows about lyme and treament for it.
You can pm people by clicking on the envolope on the top of every post and its called pming.
Post a request in "seeking doctor section" There are several people here from the mass/boston area getting treament.
goodluck to you and hope you can feel better soon.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I'm relatively new here, but I'm learning more and more every day.
Couldn't the Z-pac (Zithromax) that you were taking have skewed the test restults?
I'm going to see a LLMD next month and his office sent me all kinds of information regarding testing.
One thing it said was that I shouldn't be on abx for 10-14 days before I'm tested.
Just a thought.....
Donna Posts: 13 | From SW Florida | Registered: Jun 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You are assuming your doctor knows how to interpret the test. Bad assumption. Get the test, post the results, post the bands, etc. and then let people comment. You need to get the physical test results from your doctor and have them further evaluated.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
good luck..And I think Tutu mistyped the accuracy rate of the ElISA. I think perhaps she meant "in" accurate...Not sure but it definitely doesn't get it right 75% of the time. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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I had a completely negative Lyme test. Not even a hint of anything on my western blot. Totally negative. My infectious disease doctor looked me right in the eye and said that there was no way I could have Lyme or any other infection.
I think that was doctor 13 or 14. At that point I decided to stop believing everything doctors told me and I went and did my own research. And I listened to my gut instinct which was screaming Infection! Infection!
Thankfully, I found Lymenet and found a doctor who would send my blood to Igenex. I came back CDC positive for Lyme and positive for co-infections.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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quote:Originally posted by lymemomtooo: good luck..And I think Tutu mistyped the accuracy rate of the ElISA. I think perhaps she meant "in" accurate...Not sure but it definitely doesn't get it right 75% of the time. lymemomtooo
OOPS! I sure did mean IN .. I started to type that first, then changed it. Lyme confusion!! I'll go change it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I'll go change it.
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