posted
Last Friday a nurse relayed the results of my Lyme Western Blot over the phone saying it showed negative.
Finally today I get them to fax my lab results (we already knew that the standard blood test came back positive - twice).
What they sent shows no detail and actually looks like the report is saying positive.
Would love to have someone more familiar with looking at these review the report and give me their two cents. Please PM me for offline email discussion.
Thanks!
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Was this test given by a LLMD? What did the nurse tell you to do about the results? Not all labs are equal. Igenex is the most reliable.
I am very new to my Lyme diagnosis (clinical), but from what I have read, some people have been told their reports are negative when in fact they show some signs of being positive.
-------------------- 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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posted
I'm not sure how to post the scanned file. And there's no helpful data, but I've typed up what little they provided below. It's the Patient Result List Report from LabCorp (and they won't resend to IGeneX).
Lyme IgG/IgM Ab; Result: 1.88; Reference range: which is also positive by Western blot
Lyme WBlot, Srm; Result: Footnote b; Reference range: Footnote b: See separate report
Again - the assistant said "lab results as requested. I don't have the Western Blot report yet. I just requested your chart for that." So that's all I've got.
Thanks!
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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posted
And no - this test was given by an MS/MS mimicker specialist. (And the lab lost the blood after the first positive so I had to send more blood for the second positive and the Western Blot.)
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hi adunkin. Welcome to Lymenet!
It looks like this is an ELISA result, but I've not had one done so I'm not familiar with it. However it looks like a general antibody level test, which is worthless.
It says in the assistant's notes that she doesn't have the Western Blot report yet, so I would wait for that and get a copy of the full report.
Are you seeing a Lyme Specialist? If they ran an ELISA or similar screening test, that would seem unlikely.
Lyme Specialists know better than to rely on a test for diagnosis, and they doubly know that ELISA and other screening tests are worthless - they miss up to 75% of proven Lyme cases, per a recent Johns Hopkins study!
You need to know that NO Lyme tests are diagnostic. Lyme is a clinical diagnosis, and anyone with possible Lyme needs to be evaluated by a Lyme Specialist, or Lyme Literate Medical Doctor (LLMD), for both Lyme and coinfections.
Please post a thread in the "Seeking a Doctor" forum, with some background on your symptoms and history (nothing too personal), and a request for a LLMD in your general area, and mention how far out you are willing to travel:
It will explain clearly what these and other tests are, how they are run, and what they mean. It's a must-read for anyone looking into Lyme disease.
I would follow-up with your Dr's office in a few days and ask if they have your Western Blot results back yet.
However, if, as you say, you already had positive Lyme test results in the past, then YOU HAVE LYME.
No ifs and or buts. You don't need to keep verifying it with tests. It is exceedingly difficult to get a positive Lyme test result. The norm is a false negative. You need an LLMD.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by adunkin: And no - this test was given by an MS/MS mimicker specialist. (And the lab lost the blood after the first positive so I had to send more blood for the second positive and the Western Blot.)
Good grief! It's amazing the mistakes that can happen in a doctor's office.
Anyway, I am sure someone will answer your question. I don't know how to interpret anything, but the people on this board are wonderful.
I'll be watching to read what they say.
-------------------- 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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posted
OK - I called again and got the full report. Remember, this is not with an LLMD (it's an MS specialist - that was their best guess up to this point). Also, this report is from LabCorp. They only report Absent and Present - no values, etc.
Western Blot IgG - All bands Absent
Western Blot IgM P41 - Present P39 - Absent P23 - Present Lyme IgM WB Interp. - Positive
So, last week the nurse said the ELISA was positive twice but the Western Blot was negative and they've schedule me for a spinal tap to look for other things.
What say you?!
Thanks!!!
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I hope you don't mind me revising what I wrote earlier, I'll just chop it up to only speak to your WB results and skip the ELISA stuff:
"P41 - Present P39 - Absent P23 - Present"
These WB results have several Lyme species-specific bands. 41 can only cross-react with other spirochetal illnesses like syphillis and advanced acute gum disease. 23 and 39 are bands that ONLY react to Lyme.
It will explain clearly what these and other tests are, how they are run, and what they mean. It's a must-read for anyone looking into Lyme disease.
However, if, as you say, you already had positive Lyme test results in the past, then YOU HAVE LYME.
No ifs and or buts. You don't need to keep verifying it with tests. If you are looking for a disease or cause for your symptoms, Lyme (and possible coinfections) is capable of causing symptoms indecipherable from MS, early ALS, Parkinson's, etc, among many other conditions.
You need to know that NO Lyme tests are diagnostic. Lyme is a clinical diagnosis, and anyone with possible Lyme needs to be evaluated by a Lyme Specialist, or Lyme Literate Medical Doctor (LLMD), for both Lyme and coinfections.
Please post a thread in the "Seeking a Doctor" forum, with some background on your symptoms and history (nothing too personal), and a request for a LLMD in your general area, and mention how far out you are willing to travel:
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi adunkin,
You at least got a postive IgM from LabCorp which is almost a miracle in itself.
Go to the following link....Dr B's Guidelines...scroll to page 6-7. Read the short explanation of western blot results on page 7. It is very easy to understand.
Basically, he says that you need to see band 41 and one species specific band to be positive.
You have band 41 present and band 23 is species specific...meaning that only a person exposed to Borrelia burgdorferi would make the antibody to that protein.
You should run, not walk to a LLMD!!!!!!!!!!!!!
Same old story...99% of Dr's can't recognize, diagnose or properly treat Borrelia infections and associated coinfections.
-------------------- 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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adamm
Unregistered
posted
You don't need a spinal tap. And you don't need the doc who ordered it, as if he won't treat you given your bloodwork, he clearly will not be willing to do what it takes to get you well.
Lyme can in fact be diagnosed clinically, positive serology being fairly uncommon. However, if anything is positive, you can be certain that Lyme is what you're dealing with. You need to educate yourself about the realities of this disease, which have unfortunately been kept from the public by the folks at the top since the its emergence, and then get yourself to a doctor who's familiar with them. A post in seeking a doc should suffice as a means to the latter end, and bellow are a few good sites where you can start working towards the former.
I did actually start over the Seeking a Doctor. I completely realize that my Multiple Sclerosis doc isn't the best person to treat Lyme. I got multiple LLMD/ND suggestions and was encouraged to come over here once my Multiple Sclerosis doctor got my lab results back.
I've had almost every test under the sun according to traditional medicine trying to figure out what's wrong. Just want to make sure I'm not grasping at straws with the Lyme diagnosis.
Thanks for all the help and guidance!
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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posted
from personal experience i would NOT go for spinal tap. i was worked up for MS first and thought the spinal tap would be the end of me
not to be dramatic at all, that was the worst experience ever!! then went back for blood patch and doc poked around in there (yeah ...in the spine!!) I finally had to tell/ yell for him to just stop!!
took over 3 wk for me to be able to even get out of bed to use restroom without feeling like my head would explode!!
just my 2 cents on spinal taps!! NEVER again. have told my hubby and family do not ever let a doc do that agian!!
then MS was - and neuro tested for lyme as "last ditch" and igm positive, only 1 band of igg so lucky for me and you that meets CDC +. Neuro then explained that with lyme pt.s can have hard time with spinal taps/fluid replacement, body to busy with other things
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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