posted
I saw my MD and mentioned Lyme as a possible cause . It's hard to say how much he knows about it, but he is going to run an initial test and they do send it out to Igenex. He asked where I went to school, and I told him Oneonta (southern tier NY). He said that area is endemic, so it is a possibility.
I mentioned my that I've read the ELISA test isn't very accurate...he said its the most sensitive test so they use that first and then would do a western blot to confirm.
Very curious to see the results. It would be nice to know what is ailing me so I can start on the road to recovery after so many years of being sick.
Posts: 9 | From NY | Registered: May 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
The specificity of the Elisa isn't that great.
The "snap" test they run on dogs is better.
Oh well. Negative Elisa means nothing.
So, tell him to skip the Elisa and do the Western Blot.
Or do both. Just don't let him "talk" you out of the Western Blot.
You really need to be looking for a LLMD in the meantime.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Geneal is correct. Maybe printing this from the International Lyme and Associated Diseases Society website will make you more certain with the info you've "heard".
good luck
Posts: 2675 | From ct, usa | Registered: Jan 2004
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adamm
Unregistered
posted
Unfortunately, the medical community's been lied to about Lyme by the powers-that-be since its emergence, and, as a result, most practitioners have it all wrong. The fact that your doc's relying on these tests to make his diagnosis means that he doesn't know enough to get you well if you have it. The ELISA is worthless, and even the best test available to us are only about 70% sensitive (there's a much better one that's been withheld from us--detailed in the "patents" section of the third website to which I provide a link).
For the real scoop on tick-borne disease, you should check out
lyme-info.net ilads.org lymecryme.com and lyme-rage.info
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I hope he will do a Western Blot through Igenex.
I tested negative on an ELISA test and a Western Blot by Lab Corp (or Quest, I can't remember which). When I went to an LLMD and he sent my blood to Igenex I had several positive Lyme bands.
Best of luck to you. I hope you get the help you need.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Go to Dr B's paper in the link below...see page 7.."Diagnosing Later Disease".
Read what a real lyme expert has to say about the ELISA and western blot.
Print out this paper if you can and take it to your Dr.
You should read it thoroughly and so should he.
My ELISA was Indetermintate.
Many, many people had a negative Elisa, yet had a significant western blot.
Your Dr probably will not run the western blot if your ELISA is negative. He will instead tell you that you don't have lyme.
Don't let that happen.
Even if an Igenex western blot is CDC negative and Igenex negative, you can have lyme....those are just reporting criteria.
Read the part titled "Western blots" on page 7 of Dr B's paper also.
You should assert yourself and tell him that Dr B says the ELISA is not sensitive enough and he recommends against using it.
Insist on a western blot from Igenex.
I hope you get answers soon.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I agree with all the above! The Elisa test is garbage!
I always demand a WB and never get "tricked" into taking an Elisa test.
At the end of the day, the testing itself just isn't there....
Lyme should be treated more on a symptomatic/clinical diagnosis if all else fails.
In this country there are few that follow that guideline....
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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