posted
I know this has been brought up but i didnt really find what i was looking for in archives.
I went to see an infectious disease dr. last week and he feels in his professional opinion that my positive Elisa and Positive Igm western blot are false and I dont have lyme but am suffering from depression.
The lyme test came back elevated but not exteremly high so this led to his diagnosis of not having lyme.
I can't figure out how you can have the antibodies show up at some degree whether high or low they're still present one would think.
Having a Igg western blot done but got a call later that week that they forgot to label the vile and wasn't sure whose bloodwork was whose.
The Dr. told me that Igm WB was positve and the Igg was negative the first time i was tested so if they rescreen me for the Igg after antibiotics it should show positive if I have Lyme.
Just wondering what everyone thought.
I dont know what is worse having lyme or all these problems with no answers?
Posts: 13 | From Granite Falls MN | Registered: Oct 2007
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Get a REAL doctor ASAP!!!! ID ducks are the WORST at recognizing Lyme disease and they have NO CLUE about how to treat it.
Move on.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
This is always so darn frustrating. I've been blessed that I haven't had my diagnose "revolked" by any other doctor, but when trying to find out what WAS wrong for the five years prior, they would call it anything BUT lyme.
As Lymetoo said, get to a SPECIALIST. A LLMD, since putting your life in the hands of this other doctor could be a decision that effects the rest of your life.
Our lives are too important not to go right to a specialist. Good luck and please don't let this infectious disease doctor convince you to ignore the tests.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
yes, ducks have a tendency to wax on and on about 'false positives,' when in reality, i've never heard of such a thing, unless you happen to be infected with syphilis.
i had a CDC positive igenex WB, IgG and IgM, and still, no one believed i had lyme (this was before i was able to make it to an LLMD). in my case, it led to forced psychiatric imprisonment, but that's another story altogether.
if your lyme test is positive, then you have lyme. just my two cents.
posted
If IGG were all nonreactive and one IGm was reactive (41KD) in someone with lyme symptms, is that reason enough to see a llmd? I also have lesions. It is not MS. But my neurologist and regular doc. do not think I need to see a llmd.
Posts: 23 | From n.y. | Registered: Nov 2007
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posted
I went to an ID duck and he was a "lyme specialist" I showed him my positive Igenex wb and he ran a wb from another lab and it came back neg. The next time I saw him he said it was a false positive and it was all in my head. "Your a healthy young man with your whole life ahead of you" he said. So back into the circle of searching I went and was lead right back to lyme.
Hang in there. Rich
Posts: 413 | From nj | Registered: Nov 2005
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quote:Originally posted by cat65: If IGG were all nonreactive and one IGm was reactive (41KD) in someone with lyme symptms, is that reason enough to see a llmd? I also have lesions. It is not MS. But my neurologist and regular doc. do not think I need to see a llmd.
In someone with Lyme symptoms? Yes! Lyme is a clinical diagnosis. It's definitely not ruled out by that western blot.
I knew someone in exactly this position (just a 41 IgM band) who was diagnosed and treated successfully, and her western blot showed more bands once she was treated. The test only finds free antibody (not complexed with antigen) that your body is producing, which is one reason bands sometimes don't show. And some labs are much better than others. Major labs like Quest don't report all bands.
LLMDs have lots of experience that other doctors just don't have in terms of the clinical picture of Lyme. They also understand the limitations of testing as well as other testing possibilities (CD57 for example).
Posts: 621 | From US | Registered: Jun 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, my duck told me that my IgG positive showed past exposure and even though I had most of the symptoms, I was suffering from Somatization disorder.
I see and LLMD now and am getting better with Lyme treatment.
My ob/gyn also told me it was probably a false positive ... it was irrelevant that I was responding to treatment and that I had all the symptoms .... apparently in his eyes I'm a hypochondriac.
Don't waste your time with ducks who don't believe you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I was sick off and on for 20 years! Every once in a while i asked my PCP to run a Lyme test. He used Quest labs - always negative.
Then in '04 I crashed - worse symptoms ever. Quest again were negative. My PCP said I had "anniversary crisis syndrome" because my Mom had died the year before.
I didn't take that for an acceptable diagnosis. Found a LLMD who sent my blood off to Igenex. Boom! Positive results. First Ketek i took cleared up the brain fog within hours!
The rest of the symptoms took longer, but the proof was in the pudding.
BUT - the PCP and other non LLMD's have since said to me "If you shop around for a positive test, eventually you'll get one!"
If it quacks it's a duck.
Posts: 277 | From NY | Registered: Jun 2005
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posted
After reading the above topics, I can see why my LLMD said we have hit the jackpot and I was luckey. I could not figure out how the word lucky could be used in such a serious condition
I tested positive on bands,18 23 28 30 39 41 45 58 66 93 and other conditions within in blood work that pointed to LYME.
What would have happened if I had came back negative? I would be a vegtable sitting in a chair. We have got to have a accurate test!
Posts: 108 | From maryland | Registered: Sep 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Unfortunately you have the answer, LD - there is nothing like it.
Having a positive Elisa/Wb is rare, as the test is very unreliable, so this is a sure thing without a doubt.
Md's nationwide are illiterate to the fact that LD is the fastest growing infectious disease in the U.S. surpassing Aids and the number one vector borne disease. They have no idea how to treat it.
Nearly 1/4 million people were infected in 2006.
Get as far away from that doctor as possible, run and find an LLMD. If you need help, email me through the site contact below.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by tracybillings: Well it's my professional opinion that anyone who is told their Lyme test results are false positives should get a very good lawyer. These ducks are delaying your treatment.
Just curious, what profession?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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AZN301 - if your state has criteria that back up the test numbers, that might help. But I'd run, run, run to a different doctor if you can.
Also, the IgM for chronic stage can be positve and a good doctor has written that the IgM and IgG can be sort of mixed up sometimes in chronic cases. My IgG was low; IgM high, although I'd been sick for years. Retesting the IgG may not help much.
I'm really toast now, but try a google search : "IgM, chronic, lyme"
see if this gets you what you need:
ILADS - International Lyme And Associated Diseases Society A very important issue is the definition of ``Chronic Lyme Disease. .... Order IgM and IgG western blots -- but be aware that in late disease there may be ... www.ilads.org/burrascano_1102.htm
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STATE HEALTH DEPARTMENTS MAY HAVE A DIFFERENT SET OF NUMBERS FOR WESTERN BLOTS. For others who might need help backing up the "lotto" gamble of the Western Blot:
With my Igenex labs positive for babesia and HME (human monocytic ehrlichia) - and with several positive bands for lyme, the lyme test IgM was stamped "equivocal according the the CDC" - the IgG also had a couple of positve bands but was stamped "negative according to the CDC criteria.
Although a neuro-otologist told me to get tested (the basic test by MD was negative) . . . later my naturopath said we needed more tests and the labs were sent to Igenex.
Fortunately, the leader of the local lyme support group also told me that often each state has a separate set of criteria - different number combinations that are considered positive for that state.
In my state, and with my Western Blots, it was a clear active lyme positive.
Still, my MD said "we don't have lyme here" and "[sic] you are cookoo" That was ten years ago. To this day the official word of the medical board in my state is the same.
So, I tell you this so that you can check your state - the health division, department, etc, etc. whatever it's called. NOT the state medical board, but other group with such documents.
You might ask your local support group leaders.
In my state, that same document has been updated every couple of years and there is a current one. Nevertheless, the medical board must be on mars . . .
Don't expect a doctor to say, ohhh . . . I see. But they might.
I think most of the doctors are just overwhelmed with their million 15 minute appointment to know what is going on about this. AND . . . if the state (like mine) clobbers the few who know and tried to help (chronic) patients actually get well . . . well, you can understand why shouting off the rooftops might draw attention to the clobber committee.
I know this seems mixed up and I can't quite write it just right, but I hope this helps if someone has a test in question.
You might also consider such information from neighboring states (assuming the ticks can cross the state line) or states in which you've vacationed or lived during time that might be relative to this.
Ditto for other countries, too. And then, of course, there is the question: Did you drink the water? Did you swim with cattle ? (On a swimming break during a canoe trip, I actually realized a few cattle were just around the bend - downstream, I hope but can't recall. Guess if they had been upstream I'd have passed them, though.)
Now, hope we all can have a good laugh about something. This is hard work.
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