Ok...Test Results. Dr says negative

[lilmiss1999]

I dont know what any of this means so ALL advice is needed. I know it is Western Blot only. She said it all means I am negative and no need to go any further.      Is she right?     Thanks in advance. :)

LYME FLD/SERUM PAIR

Fluid Result : NON REAC
Fluid OD         : 0.026
Borderline Cutoff : 0.114
Reactive Cutoff : 0.146
Serum Result : NON REAC
Serum OD : 0.061
Fluid/Serum Index : 0.43

LYME WB FLUID

Lyme WB IgM Result : Negative
Lyme WB IgG Result : Negative

LYME WB SERUM

Lyme WB IgM Result : Negative (Igm reactivity was to NONSPECIFIC bands only. 58,93)
Lyme WB IgG Result : Negative

[JackieCalifornia]

There is a controversy about which lab to use:  LLMDs lean toward IGeneX, but nonLLMDs think IGeneX does something wrong, tho I have never figured out what ... nonLLMDs think the IGeneX test 'over-identifies' Lyme, and don't believe the test is accurate, for reasons I have never read.

NonLLMDs can be quite dismissive of IGeneX, and lodge criticisms that are unclear in their basis, at least to me.

So the messages you are getting from your doc are not 'wrong' in the doc's view, or he would change his view.  There isn't agreement between LLMDs and nonLLMDs on IGeneX, so trying to reconcile the views of the two groups is a losing proposition.  I voted for the LLMD approach; no regrets, but different people make different choices.

[Ricobord]

The doc who writes the LymeMD blog says that band 93 is very specific to Lyme and that some docs will diagnose on that band alone.
http://lymemd.blogspot.com/  
See his March 15, 2012 post.

Also, Dr. Schaller (expert on Babesia) quoted Dr. Charles Jones, famous pediatric expert on Lyme describing band 93 (separate from 83) as a Borrelia specific band.
http://www.personalconsult.com/articles/drjonesapproach.html
This article from several years ago is reprinted on this site and other locations on the web.

I would be concerned if my doc didn't know which bands are Borrelia specific. Most LLMDs say IGeneX is the best.

[JackieCalifornia]

Well said.

[mojogal]

My non-LLMD told me,  I was in remission when he read my Western blot test results. I was having heavy duty symptoms. My current LLMD reading the same results said no, you are not in remission.
Like Jackie said, if you are having symptoms, there is no way (I was told that very sternly by a doctor who has Lyme himself in Texas, on a support group, where I was living at the time) said if you are experiencing these symptoms, brain lesions as he was having, blindness that comes and goes like he was having, and more ...he called me and was very concerned, that there is no way you are in remission. You have Lyme, go to an LLMD. So try to get to one and let us know how you are doing.

[lilmiss1999]

I am in Oregon. My doc send the labs to NY. She said they were the best.

[JackieCalifornia]

Your profile says you are in ... Oregon?  But Dattwyler is in NY, yes?  You have lots of choices, and if you post 'looking for LLMD in [OR/NY/whatever]" you might get some leads through the private message (PM) system on this website.

Be sure to ask people respond by PM, in the upper right corner of this webpage where it says 'inbox'.  That way you can send and receive messages through your medscape identity privately, but still keep your true identity to yourself.  Safer that way, for you and for the docs who get named.

[lilmiss1999]

That makes sense on finding a doc first. AHHHH my next quest in life! :) Thank you.

[JackieCalifornia]

Well, you can tell I'm tired.  That post is garbled.

My point:  I'd find an LLMD first, and let the doc decide what and when to test.  I have said elsewhere on this site that no Lyme test is like a +/- pregnancy test.  It takes a trained doc to read the results, and also a trained doc to know what else to test for.

You can't prescribe for yourself, so what good does it do to have tests run for yourself?  Find a doc who knows what to order and how to read the results.  IMO.

[JackieCalifornia]

Just reread your post.  A couple more things:  

-- not all LLMDs are soft music and herbs.  My LLMD was just the opposite.  

-- I would not run have the IGeneX tests run till I found a doc who would understand them and know what else to test for.  The tests are not cheap, and Lyme is not a do-it-yourself venture.  IMO.

[JackieCalifornia]

I just found this comment on a website (so take it for what it's worth):

"Stonybrook has a good Western Blot but only reports all bands when requested; otherwise reports CDC bands which exclude the most important 31 and 34 bands"

Also I didn't remember that Raymond Dattwyler is the doc behind Stonybrook, and by searching his name found commentary about his possible conflicts of interest between his Lyme research and his personal financial interests ... not to say he doesn't believe in what he does, but his views seem to line up in one direction.  

He appears to be an IDSA kind of doc (meaning the nonLLMDs).  He is listed in an ILADS comparison chart on the ILADS website with Wormser, Steere and other docs of the IDSA persuasion.

I'd suggest you read up a bit on him online and decide whether to see another doc (preferably one who is a member of ILADS).  Take your recent test results with you to any new doc you see, because it may or may not be useful.  

Personally, I'd find an ILADS doc, but I'm not medically trained, just been through Lyme myself.  Sorry not to be more upbeat, it's been a long day..

[lilmiss1999]

This was done by Stony Brook in NY.

I am wondering if I should have IgeneX run labs and then go from there. Not sure right now.

Thank you. I will be looking for a different dr. I just dont want too much of a "natural" lyme dr. You know.....herbs, soft music, meditating, Feng shui  and all that. Seem to have some of those here in Oregon. :)

[JackieCalifornia]

Some questions/comments:

-- What lab ran the tests?

-- Band 58:  specifics unknown, but can perhaps indicate Lyme

-- Band 93:  unknown, but probably the same as Band 83.  Band 83 is a specific antigen for Lyme, probably part of a cytoplasmic membrane.

With such fragmentary information, and if you have had/are having symptoms consistent with Lyme, I would find another doc, take the test results, and get another opinion.

Not all labs are created equal; not all docs are created equal; all Lyme indications are imo worth following up on.

Lyme requires a clinical diagnosis, meaning based on symptoms and history, aided by test results.  The tests are not the final word.  Any doc who takes the test as the final word is imo not up to date on Lyme.

I'm not medically trained, but seeing the right doc is a critical part of being properly diagnosed, whether it's Lyme or not Lyme.

I just google searched

lyme oregon

and got lots of interesting hits that should help you find a Lyme doc.  It's what I would do, because Lyme (if you have it) won't just go away by itself.

Sorry to be a downer.  Others can weigh in here.