posted
Hi! I'm a newbie here. I just had my first follow-up appointment with my LLMD & got some test results back. I'm not sure what to think & can use some advice / input.
ELISA (tested through Stony Brook). This came back as positive. I scored .182 .104 is Negative .132 is Reactive
WESTERN BLOT (also through Stony Brook)This came back "Indeterminate".
IGM: I was told I had one band positive (but i'm not sure which one...i realize this is probably important info. ) IGG: 18, 41 were positive
My Lyme doc said given the Elisa & my symptoms, he's pretty sure I have Lyme. However, my regular doctor says that I don't have Lyme. I'm nervous that I have some scary undiagnosed illness (i've been tested for everything, including lupus, thyroid, and also had MRI w/ contrast & EMG....everything was normal).
My symptoms started in April with tingling, prickling sensations, slight numbness, insomnia, anxiety. Now i have muscle aches, muscle twitches, internal vibration, dizziness, elbow aches. All these symptoms seem to come & go daily. Something will bother me for a few hours, then go away.
I started doxy 3 weeks ago. Some of my symptoms got worse on days 3-5 of abx, but i'm not sure if it was a real herx reaction. My LLMD just upped my dose to 300mg a day, which i'll start next week.
Anyway, sorry about the long post...any advice / thoughts are greatly appreciated.
Thanks! morgan
Posts: 32 | From New York, NY | Registered: Jun 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Thursday,
I would trust my LLMD, not the regular duck.
Wait till you increase doxy to 300mg or higher.
It needs to be 300mg or higher to cross the blood-brain barrier.
IMHO, your symptoms sound like Lyme to me.
I was unlucky enought to have my Western Blot done via Quest (prior to me knowing about this site)
I only had one IgM band positive. IgM band 23.
That and my symptoms were enough for my LLMD.
My husband had a positive Elisa as well. Although he did not
Have a CDC positive WB via Igenex, he showed Lyme specific bands.
That and his symptoms were enough to be diagnosed with Lyme as well.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Go with the LLMD's opinion. My GP said I did not have Lyme even with EIGHT positive bands!!! And that was only on the IgG part of the test.
Regular doctors just don't know. If you have a Lyme specific band from a non-Igenex lab, you've got Lyme.
The fact that doxy made you feel worse, if further confirmation.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I agree with the others here -- trust the LLMD not the GP! I'd still be extremely ill with alot of the same symptoms as you if I had listened to my GP. Also, I had Western Blots done by two different labs a month apart and the results were HUGELY different, it's crazy. Welcome to Lyme disease...
I'd suggest asking the lab for a copy of your Western Blot detailed report which shows results for each individual band.
Good luck, hang in there!
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Thursday,
Here's a 17 page document with extensive medical references about the common finding of negative Lyme tests in people with Lyme disease.
I hope someone else will post the numerous reasons for negative blood tests from the Canadian Lyme site.
Keep reading. There is a lot to learn.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I believe Lymetoo posted a few days ago about why the blood tests can be negative for Lyme.
If I remember correctly there were 23-25 specific points for a negative test.
Now if I can just remember the thread.....
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Okay....I found the thread.
Dr. Bransfields's Reasons for Seronegativity the reasons why you can test negative and still have Lyme Disease.
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocyte cell walls) 4. Spirochete is deep in host tissue (i.e. fibroblasts, neurons, etc) 5. 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, 100 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 (L-form) with no cell walls 12. Recent antibiotic treatment 13. Recent anit-inflammatory treatment 14. Concomitant infection with babesia may cause immunosuppression 15. Other causes of immunosuppression 16. Lab with poor technical capability for Lyme disease. 18. Lab tests labeled "for investigational use only" 19. CDC criteria is epidemiological not a diagnostic criteria 20. Lack of standardized control 21. Most controls use only a few strains as reference point 22. Few organisms are sometimes present 23. Encapsulated by glycoprotein "S-layer" which impairs immune recognition 24. "S" layer binds to IgM 25. Immune deficiency 26. Possible down regulation of immune system by cytokines 27. Revised W.B. criteria fails to include most significant antigens
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I had my LLMD fax over my Stony Brook results. It only lists the positive bands. It reads:
IgM: 41 and other "CDC" non-specifc bands IgG: 18, 41
Of course, last night all my Lyme symptoms were more pronounced!
Geneal - Does the seronegativtity list refer to the ELISA or WB? I did test positive on the ELISA. Also, what does question 18 mean? My test is labeled that way.
18. Lab tests labeled "for investigational use only"?
thanks!
Posts: 32 | From New York, NY | Registered: Jun 2007
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posted
Thursday...I have the symptoms as you and they started going down after about 4 weeks of doxy(200mg). 2 months later I am on 600mg doxy and 500mg zithromax(expensive!!!). My symptoms are 10-30% of what they used to be, depending on the day. I had an intermediate WB with some lyme specific bands showing + and IND. Usualy LLMDs will treat lyme with multiple antibiotics, it is strange to me that your LLMD gave you only doxy.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The tests are garbage!!!
People have tested negative repeatedly even in spinals and then when dead Lyme was found sequestered in their tissue. Glenn Edward Killion, 36, was one such person.
So get treated if you have a good LLMD and have had a thorough Differential Diagnosis!!!
-------------------- 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
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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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tailz
Unregistered
posted
Who was it here that had EIGHT bands and was told they didnt have Lyme?
Jeez - I'm still trying to figure out though how they can pump you full of steroids for 'rheumatoid arthritis', even when your rheumatoid factors aren't high enough, yet they keep denying people have Lyme - even with 8 bands.
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