I tested positive on the Elisa test for Lyme. My ANA Titer was 1:320.
I have all the classic symptoms, from arthritis to neurological disorders, (especially rigidity in the hands and mild ticks in the face). I also have extreme flu-like symptoms and fatigue. I'm experiencing edema in my ankles and hair loss. Basically, I have all the symptoms....AND I tested positive for Lyme.
I went to a NON-VA (veterans affairs) doctor for a second opinion. He was NOT a specialist in Lyme.
He ran a Western Blot test and the test showed only ONE reactive band (band 41).
They said, "Oh, you don't have Lyme disease"...since you only have one reactive band.
Will someone please tell me WHAT I have if I don't have Lyme?
I was living in an area heavily populated by deer (in a forested area in the midwest) and did wildlife "rehab" with orphaned animals, so I was likely exposed to ticks and fleas carrying the bacteria.
I'm NOT an expert in this stuff...I'm just learning the basics but from all I've read, my symptoms match Lymes and it's the only thing that even makes sense.
Can anyone help me? Does this Western Blot test rule out Lyme in my case??????
HELP???!!!!!
Posted by ChrisBtheLymie (Member # 8916) on :
Firstly, that's what most people get when they see a non-Lyme literate doctor.
Do you know what lab the Western Blot test was done at?
Lyme disease is a clincal diagnosis, the serology tests are very unreliable, unless they are done at Igenex.
You need to see a proper Lyme expert who will take your history, symptoms and maybe test you at Igenex, otherwise you will be running from doctor to doctor like a headless chicken and you will not get anywhere.
Go to the "Seeking a doctor" section to find a doctor in your area.
Hopefully more people can help you.
Posted by lymie tony z (Member # 5130) on :
First and foremost... If you got a positive ELISA result from an infamously poor and usually negative ELISA test then you have lyme disease.
This first test SHOULD have been followed up with the same test sample with a western blot to further confirm lyme.
The second test done at(and here I'm a little confused cuz of the way you worded it{non-va}..is it VA or not??
Anyway the VA is a notoriously bad HMO who uses bad labs especially where lyme is concerned...
I know cuz I've NEVER gotten a pos thru the labs they use...surrounded by positives from other labs I have used on my own....
I had to take wifey to work so now I forgot what other stuff you were asking....soooo
OK I went back and read your post....
If you get a copy of your test results...and IF the duck that told you, not to worry about lyme disease has EYES in his head and can understand ENGLISH...
You and he will see that ON the test result it states that a neg result does NOT rule out lyme or BBorelia infection..."A clinical diagnosis" is needed....
given your symptom list...you got it kiddo...
Hope this helps a little..........zman
Posted by Michelle M (Member # 7200) on :
Hi there Catsmeow!
Lyme is a clinical diagnosis. Means a good doctor can diagnosis you without a blood test just based on your symptoms. That's because blood tests are so unreliable.
Fortunately for you, you already have a positive ELISA. Those are tough to come by!
The ONLY place to bother getting a western blot done is at IGeneX. That's a lab specializing in tickborne diseases. I'll bet it would positively light up with bands! And also demonstrate the worthlessness of the other lab your doctor used for your western blot.
All of this points to the need for you to find an "LLMD." A regular doctor (such as the one you are now seeing) will neither see, believe, nor understand the complexities of lyme disease. Nor treat it long enough or correctly. Nor deal with the potential co-infections which will prevent your getting better.
Please find a good LLMD.
If that's impossible, then get your blood drawn for a lyme western blot, tests 188/189 at IGeneX. Call 'em up and they'll send you the kit via mail. Your local lab will do the draw and you can send it off in the prepaid FedEx label. Then ask your doctor to treat you according to the ILADS guidelines (see the newbie links above). Also test for co-infections.
Be well.
Don't underestimate it!
Ask lotsa questions and read, read, read!
Michelle
Posted by bettyg (Member # 6147) on :
Hi! I think I sent you a private message, PM, with my newbie links and long list of symptoms. If I didn't, please pm me and I will send this to you privately.
Yes, in my NON-medical opinion; you have LYME, and we welcome you here as you learn about our illness and what you can do besides finding a GOOD LLMD NOW!
Posted by Lymetoo (Member # 743) on :
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
Get a test done through Igenex Labs in CA www.igenex.com
You can find a dr who will administer the test...or even a lab who will draw the blood. Do whatever it takes because your life is at stake!
Begin your search for an LLMD....Go to Seeking a Doctor here at Lymenet.
Good luck and God Bless! Posted by SForsgren (Member # 7686) on :
Which band was positive?
Posted by Catsmeow (Member # 9485) on :
YOU PEOPLE ROCK!!!!
I hardly know how to say this but, "I LOVE YOU GUYS!!!"
SForsgren: The 41st band was positive/reactive.
Okay, now that I got that off of my chest, Michelle, thanks tons! I think the ELISA is what the Veterans Affairs lab gave me. It's the one that had a high ANA titer of 1:320.
Lymietony When I went to a NON-military/VA doctor (regular, plain vanilla MD), his lab said I had a negative ANA and WB, (only band 41 was reactive).
So, the VA actually gave me decent results ironically.
Everybody here at this message board: I am so full of gratitude to meet such awesome people! Everyone has been so kind to a complete stranger and I actually feel a sense of "HOPE" for a change.
At last I feel like SOMEBODY understands me! Thank you so much!
Posted by SForsgren (Member # 7686) on :
41 is not specific for Lyme disease. Thus, I would not use that as an indication either way. Something like 1/2 the population would show a band 41.
A positive ELISA might be useful. I'd test for coinfections and see if you can find other clues that Lyme disease is part of the issue. Then you may want to find a doctor to start treatment and then retest the Western Blot again. I have seen them go from negative to very positive after treatment starts and the immune system starts to react.
I would not however use only band 41 as anything telling. Hopefully your test was from IGeneX and you included any IND bands as well.
Posted by Lymetoo (Member # 743) on :
You're welcome, Sweet Pea!!
If you weren't tested by Igenex, the test results don't hold water.
More bands are bound to show up on their tests. Some labs don't even TEST for all the bands!
Yes, going on antibiotics for several weeks, then retesting may do the trick for you! Posted by Catsmeow (Member # 9485) on :
I was NOT tested at Igenx. I was tested at some little podunk local lab who based their tested results on some conference on Lyme done in 1994. It says so right on the lab results...
My symptoms are so closely matching Lyme, nothing else fits. What's hardest to deal with are the neurologic problems that go with the flu symtpoms, chronic fatigue, etc.
BTW, this lab that did my Western blot ALSO showed my ANA titer as NEG.
The Veterans Affairs showed it HIGHLY positive at 1:320, along with a positive ELISA...so there's a huge discrepancy between the two labs.
My symptoms so much match everyone I've read and I lived and worked around wildlife in the midwest, I can't help but think this is the only DX that even comes close.
Posted by Michelle M (Member # 7200) on :
Hey Cats -- here's why your western blot from the Podunk Lab was "negative."
Mosta the junk labs do junk western blots.
They're actually FORBIDDEN TO REPORT ON ALL THE BANDS.
The reason -- ?
The most specific bands for borrelia -- the very ones used to make the lyme vaccine from -- are excluded from being tested for!!
Now, if you HAD the vaccine, that makes sense. But not that many people had it. OR, if you had it, you could just tell the doctor that you did.
Instead, most labs (OTHER than IGeneX and a couple others) operate under the guidelines of leaving those BORRELIA BURGDORFERI-SPECIFIC bands completely out of their tests.
So your western blot could be positively. glowingly positive on those specific bands, indicating you have lyme disease, yet it would nevertheless be reported as 'negative.'
And you would trundle on your merry way, to be misdiagnosed with something else.
It's called "lyme politics."
That's why there's no point in getting a blot done anywhere else.
Just don't let anyone tell you your ELISA is a "false positive."
Hit em with science!!!
Michelle
Posted by Lymetoo (Member # 743) on :
Michelle is right...and a pos ELISA is rare...so run with it.
Posted by SForsgren (Member # 7686) on :
It is critical to get tested for coinfections and ideally an IGeneX panel as well. Get all the information you can.
Posted by Catsmeow (Member # 9485) on :
Someone here has told me about an excellent LLMD (Dr. C) in Missouri) who is one of the most knoweldgeable. I'm calling tomarrow and hoping for an appt. I'll fly out there...it's that serious. I'll do whatever it takes.
The neurological problems are the worst...with rigidity in the hands and twitching in the face.
I will not settle for an average doctor. From all I've read from everyone here, it's worth it to spend the money and just find a REAL doctor who can help me. I'm really desperate.
Posted by Lymetoo (Member # 743) on :
You won't be disappointed. Hope you can get an appointment before TOO long.
Posted by Catsmeow (Member # 9485) on :
I DID IT!!!! I made an appt with a LLMD in NM (he takes medicare, thank goodness).
I can't get in to see him until mid September but I'm on the cancellation list and he's already ordered the IGenex test kit which is being sent to me.
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I was NOT tested at Igenx. I was tested at some little podunk local lab who based their tested results on some conference on Lyme done in 1994. It says so right on the lab results...![[woohoo]](graemlins/woohoo.gif)