posted
I had blood tests done for Lyme disease for the 5th or 6th time. The lyme titer came back negative. What are the chances of me having blood work come back negative and still have Lyme?
Just a bit of history, I did have a tick bite before my symptoms started, and my symptoms are indicative of classic Lyme... tingling in legs, dizziness, brain fog, severe anxiety/panic attacks, pain in eyes etc.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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posted
Lyme testing is not accurate, especially the ELISA. A Western Blot is better, but still, all a test does is confirm exposure. Diagnosis is made based on clinical symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
How do I get a western blot done? I'm not sure I've ever had that yet.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Just to back up what six says......Lyme Disease is a "clinical" diagnosis. Your history and symptoms point to a lyme diagnosis.
Test are used to back up the diagnosis; but a test cannot rule lyme in or out. A LLMD will treat you based on symptoms and not based on an inaccurate test.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I should think since I had an engorged tick on my arm, and my symptoms all started after that... plus the fact that doctors ruled out anything else (MS, lupus, blood diseases etc) that chances are good I have Lyme. Except no one will treat met.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I had a tick, a bull's eye, symptoms starting 3 days later, 3 negative tests (never at Igenex)and I also couldn't find a doctor who would treat me. It took me 9 terrible months to find an LLMD.
My LLMD diagnosed me by my clinical symptoms and after 6 months of treatment I feel almost normal again!
You must find an ILADS trained LLMD (lyme literate medical doctor). Please go to "Questions and Discussion" and click on "seeking a doctor." People there will help you find an LLMD nearest you.
I see you're in Dallas. I'm not sure if there are any LLMDs in your area. If not, you'll have to travel out of state to one. But please, you must do it to get better! And do it soon as the longer you wait, the harder and longer it will take to recover!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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I see you posted in "Seeking a Doctor" - I know Texas is a state where it's very difficult to find a LLMD. So, you might find some who "fly under the radar" here:
quote:Originally posted by Joel: I should think since I had an engorged tick on my arm, and my symptoms all started after that... plus the fact that doctors ruled out anything else (MS, lupus, blood diseases etc) that chances are good I have Lyme. Except no one will treat met.
There are very few who will treat Lyme. See www.underourskin.com and watch the movie trailer for details why. It's all about money, insurance, and greedy doctors.
If you post in seeking a doctor, someone will pm you a list of docs near you who will treat Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Joel~ How about testing for other tick borne pathogens such as erhlichia, bartonella, babesia? Or how about testing for viruses such as HHV-6, EBV, enterovirus?
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Are all those viruses caused by tick bites? Can my primary care doctor test for any of them? He is pretty sympathetic, I think I will ask if he can do the Igenex test for me.
Posts: 54 | From Dallas, TX | Registered: Jun 2010
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massman
Unregistered
posted
Get treated not tested.
TESTS ARE NOT ACCURATE TESTS ARE NOT ACCURATE TESTS ARE NOT ACCURATE
This is not an opinion it is a fact.
Sorry if that is a bit rude but some here get obsessed with testing.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
A LLMD(lyme literate medical doctor) will treat based on your history and symptoms, because LD is a CLINICAL diagnosis! He will treat the patient not the test!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
you can call Igenex and they will send you a test kit for free. PM me if you are interested and I will get you the phone number. If you have a sympathetic MD who will sign off on it for you then you should be good to go.
I would recommend getting the basic lyme panel western blot. It cost $260 and is well worth it.
Although LD is a clinical diagnosis, it is still nice to see something on paper that shows you were exposed to the bacteria. It can ease people's minds.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Joel~ Viruses are not caused by tick bites. But, you could have gotten ill at the same time by a virus that you were bitten by a tick.
The other pathogens I mentioned are tick borne pathogens, which, if you haven't been tested for, you should be. That should be your first plan of attack. If you go to www.columbia-lyme.org, you will see under "patients" the words "other tick borne diseases". Click on that, and make sure you've been tested for all those pathogens/diseases.
Yes, your primary care doctor can test for anything. Mine does. However, for viral testing, Focus Diagnostics Lab is best for most things and ARUP lab for enteroviruses.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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quote:Originally posted by Joel: Are all those viruses caused by tick bites? Can my primary care doctor test for any of them? He is pretty sympathetic, I think I will ask if he can do the Igenex test for me.
Yes. And the others showing a positive would indicate to your dr that you are indeed infected by a tick.
suthrngrl.. He doesn't have access to an LLMD. At least not yet.
massman.. Testing is better than NOT testing in my book. Esp if he has no LLMD to rely on for a clinical diagnosis. He would be treating himself for something he's not sure he has.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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