Topic: Dr. wants me to retake elisa, bad idea I think?
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
I am seeing a Dr. for my chest pains and he has set up some x rays and blood work. He wants me to get a sed rate and an ELISA lyme test. I told him I have been diagnosed with lyme. Wondering why he wants another test.
I have a positive western blot according to my llmd. I have never had a positive ELISA.
Could he cause problems for my llmd and I if I agree to the ELISA and it is negative?
If I show him my positive western blot (not technically CDC positive though) will he just say it is not the accepted standard of testing since he is not lyme literate?
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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MichaelTampa
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Member # 24868
posted
Sure, it could cause problems, with insurance and whatnot, down the line. Diagnosing lyme is a specialty area and if you are seeing him for chest pains and have an LLMD involved, it is probably not within this doc's specialty, so it doesn't feel that he would have any right to push that.
To your question of what he will say, a lot of docs are stupid, just like stupid people with a medical degree, so of course he could say any number of stupid things. But last I knew the CDC website said that lyme is a clinical diagnosis and the criteria they lay out is for tracking purposes only, not diagnosing purposes. So I don't think there is much official support for his position (although it is commonly held).
Posts: 1927 | From se usa | Registered: Mar 2010
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poppy
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posted
Yes, this could cause trouble. Just tell him you have a specialist for your lyme treatment and that is not why you are seeing him. He is fishing, and out of his depth. This sounds very suspicious to me. He might even run the test without telling you he is doing it. Is this blood draw going to be done in his office? If so, you might not even know what tests are run.
I hope you have not given him the name of your lyme doc. It is usually other doctors (or insurance companies) that report a lyme doc.
If you wanted to add anything to your answer of why you don't want another lyme test, tell him what Michael said above it being a clinical diagnosis, etc. If this were me, I would find someone else for the chest pains, etc. Does you lyme doc know you are seeking other medical opinions on what might be lyme caused?
I finally decided, after some bad experiences, not to see other specialists unless my lyme doc suggested it, and then if it was possible find one that my doc recommended, or other lyme patients had seen without issues.
Posts: 2888 | From USA | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
ohhh, not a good idea. course I never mention lyme but that's jus me. I've had too many doctors tell me there is no lyme and then try to dig the name of my llmd out.
I wouldn't put it past them to report on one.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Could he cause problems for my llmd and I if I agree to the ELISA and it is negative?
- It will cause problems for YOU!! Don't do it. Tell him you have a positive test and you don't need any help with the Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Ok, I will decline the test. I may not see him again. He did not reject the idea of Lyme and did not seem to make a big deal of it but it was weird he ordered another Lyme test.
He does not know my docs name though and I will leave it at that.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
It's a common request from doctors - and, the ELISA test usually comes back negative.
Compare that with an AIDS screening test that is accurate 99% of the time.
So, I now prefer to have that conversation with doctors, comparing the accuracy stats between the two illnesses as a reason why I choose not to do the ELISA. You can let a doctor know that you know the stats.
The Western Blot test through the IGeneX lab is 60-70% accurate, due to the 27 reasons thread that I posted in Medical recently.
The Advanced Laboratory Services culture is 100% accurate if the bacteria is in the blood sample.
Rather than remain silent in doctor offices, I prefer to have a state-of-the-art conversation with them to let them we are following what's going on, and we want better from them.
Posts: 13116 | From San Francisco | Registered: May 2006
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Sometimes it is also good just to ask the question: Why do you want to do this test? And maybe, what will you do with the results?
Posts: 2888 | From USA | Registered: Mar 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ditto what Michael and Poppy said. Don't do it.
I made the mistake of seeing a cardiologist who quizzed me big time about lyme--wanted the name of my lyme doc and I made the mistake of giving this stupid doc the info.
They are out of their realm of expertise when they do this, even a request for an elisa is off track and none of their business.
Tell your doc you have a specialist for lyme, you've got it covered and to focus on your heart, not an elisa. If he/she keeps quizzing you about lyme or wanting an elisa tell him or her that if (s)he can't focus on your heart, you will have to find another doc.
I wish I had just grabbed my things and walked out of the room. These people are IDIOTS when it comes to lyme. You have to either get them to re focus on your heart or leave.
A negative elisa could screw you for lyme treatment (meds). Don't do it. Make your doc re write a lab slip without the elisa or the lab will do it anyway. Labs have to follow the lab slip. If your doc won't re write it, go somewhere else.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Forgot to mention, it is not a big deal for them to re write a lab slip. They could also cross off the elisa, but they would need to cross off the codes too or the lab might run the test.
Also love what Poppy wrote above:
"I finally decided, after some bad experiences, not to see other specialists unless my lyme doc suggested it, and then if it was possible find one that my doc recommended, or other lyme patients had seen without issues."
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I see. So this is why the rheum doc sent out for an ELISA test AFTER I already had a positive Western Blot - because he was trying to cancel that.
And indeed, with the expected negative ELIZA result, then told me I was negative - after I had no pain anymore from being on a month of abx and was herxing! I let him have it! And then went out and told his staff what was going on.
Posts: 13116 | From San Francisco | Registered: May 2006
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