Trying to put the pieces together

[rockchalk76]

Hi - I have an appointment tomorrow with a neurologist, after receiving the news that the radiologist observed "changes" on my MRI, 10 days ago from the nurse at my family doctor's office. I am concerned that my family doctor thinks I have MS after treating me for  4 months for migrating joint and muscle pain in the left leg.  Last week I also developed a short episode of double vision and that is what triggered the MRI.  His snotty nurse would not tell me anything and said that my family doctor wants me to see a neurologist.

I was a researcher at the diagnostic lab at Kansas State College of Veterinary Medicine for several years.  When I read one of the postings on this forum, they referred to Dr. Jernigan in Kansas, but did not give any address or web site.  While I was at the veterinary college, there was a Dr. Jernigan that was a very respected member of the faculty.  This was in the late 70's, so don't know if this is the same person.

A friend I developed on another board, mentioned the possibility that I might not have MS but might have Lyme disease.  I started reading as much as I could before my appointment tomorrow and found your discussion board.  I know that neither disease is anything that you would want to develop but at least I have some understanding of microbiology.  I was in the Master's program at KSU for veterinary pathology.  Little did I know that 30 years later, I would be learning about an organism in my area of speciality, spirochetes.  We were not testing for Lyme disease at the vet school when I left in 1980.  Its been a learning curve to try to put together all of the pieces of information I am gaining from reading the posts because of the use of so many abbreviations.  I saw some reference to what I think was a fluorescent antibody technique.  That was used in the lab next to mine, to test for rabies.  I used a dark field microscope for the micro-titer agglutination test that I did for Leptospirosis.  That was an antibody test and was sensitive enough to tell the difference between a titer from vaccination and active infection, in horses, cattle, sheep, pigs, and dogs.  

I got on the IGENEX site and that is the kind of lab I would LOVE to work at!  I have seen many postings about their lab and wondered how they got to be the lab of choice?  Is this something that they test for a state health labs?  I live in Iowa now and really want to insist that I am tested for Lyme disease before submitting to anything like a spinal tap.  What kind of "ammuno" can you give me for why my doctor HAS to use this lab?  

I was also curious about why most of you say that the ELISA test isn't any good?  When I still worked in medical labs, the Western blot test procedure was diagnostic for syphilis, another spirochete.  As someone from a medical lab background, this disease is facinating to me, but I haven't had the time I need to throughly study it for the appointment tomorrow, so looking for any suggestions that might help me convince my doctor to explore this disease.  Thanks, Kay

[Carol in PA]

Kay,
I left a message for you, check your inbox.
Here are links to articles about ELISA:

Laboratory Tests
By Tom Grier M.S.
Three Main Categories of Lyme Disease Tests:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=5&t=000805

In vivo-induced antigen technology: the most sensitive method of detection for Lyme disease and other tick-borne diseases, Part One of a two-part article
http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170374

Novel Diagnosis of Lyme Disease: Potential for CAM Intervention
http://ecam.oxfordjournals.org/cgi/content/full/nem138v1

Carol

[babsesl]

Hi Kay,
Quest labs never came back with a positive for lyme for me. My lyme doctor explained that they use a cheaper test kit, therefore;less dependable.  I remember him even telling me what it cost.  He never used Quest.

I dont' remember the specifics of why the Elisa test isn't a desirable one, (I used to know) but as far back as 1997, I don't think it had a very good reputation.  But, some doctors still used it.

I wish you good luck.

Barbara

[rockchalk76]

I was so afraid that the neurologist was going to tell me that I had MS, that I didn't think to insist that they use the IGenX lab.  I could have kicked myself for that after I left the office!  He said he was ordering a Lyme disease titer.  I know our local clinic uses Quest as their outsource lab.  I haven't gotten a call back yet and don't know how long it takes for results of this test.  

As a former Med Tech, I'm still hoping someone will answer my question about why the ELISA test method "isn't any good".  Is the antibody response much different with this disease than others?  We had a good antibody test for Leptospirosis, another spirochete, 30 years ago.  We have a good test for syphillis, yet another spirochete.  Sometimes the tests we developed in veterinary lab medicine could be used to develop tests that will work in human disease.  We hoped the test we developed for Feline Leukemia would translate to human AIDS, but it didn't.  Maybe this is one of those similar mysteries.  Thanks, Kay

[babsesl]

Hi, I am not surprised that your doctor read your report differently than the neurologist did.  That kind of thing happened to me a few times.  Makes you wonder, doesn't it?  Do you know what kind of test was done for lyme?

[rockchalk76]

Thanks for your response back.  As I was rapidly reading the posts, I wasn't absorbing all the details and it has been so many years since I learned these analytical techniques.  I think you are referring to the Immunofluorescent assay (IFA) technique.  This test uses a fluorescent microscope to be able to see the spirochete on the slide after specialized staining procedure.  When I read some of the various postings on the forum, they mentioned a fluorescent light.  That is often called a Wood's lamp and is a simple test often used in veterinary medicine to show the prescence of fugal diseases in animals.  That is where my confusion came in as I was rapidly trying to put the pieces together in time for my appointment this past Monday.  I'm not trying to be a nit picker about this, its just that I had a hard time understanding because of my frame of reference, coming from a lab background.  

I'm happy to say that the neurologist did not think that I have MS!  He couldn't believe that my family doctor had put me through 10 days of limbo when he felt the "changes" on my MRI were due to the aging process and a worsening of the form of arthritis in my neck.  I passed all the neurologic tests he gave me.  When I finally got a copy of the MRI report, after I saw the neurologist, I couldn't believe that my family doctor had referred to these things as changes.  I have had histology and pathology and could read and understand the report and nothing there, as the neurologist said, that should have caused this kind of alarm.  The neurologist was open to testing me for Lyme disease and now I'm waiting for that report.  

[babsesl]

Hi, I mentioned the flourescent light test if this is the test to which you are referring.  It is not a test for antibodies, it shows the actual spirochete.  It is the only lyme test that came back positive for me.  Also, people are sometimes told that they might have MS because the lyme symptoms are so similar. Hope things went well at your appt.

[patsy10]

Sadly, your doctor probably will not know very much about it and you'll have to do your own research.  I would go to lymenet dot org and read as much as possible.  Use the search for info on Igenex.  Supposedly this lab specializes in tick-borne disease testing and uses much more sensitive tests, tests for more strains etc..  Lyme hides in tissues, nervous system etc...Some peoples immune systems are so weakened they don't even form antibodies.  From what I have read, the longer a person has it the less likely they are to test positive.  Best of luck at your appt.