So Confused, please help.

[ChrisD07]

I posted earlier on interpreting my Ignenex test results, which were:

LYME IgM WESTERN BLOT

31 kDa:  ++
41 kDa:  IND
83-93 kDa:  IND

LYME IgG WESTERN BLOT

31 kDa:  ++
34 kDa:  +
39 kDa:  IND
41 kDa:  +++
58 kDa:  +

I showed an ID these results to day and he told me that without a positive ELISA that my Western Blot means nothing.  He says that the Igenex results are must likely false positives and wants me to get tested at anther lab.  He says he thinks I have chronic EBV or  fibromyalgia.  What should I do? listen to this ID doc and retake the lyme test at another lab or seek out a LLMD.  I have had MS like symptoms for 3 months now (clear MRI's and every other test).  I just want to stop taking tests and start trying to fix something.  I am so confused.
-Chris

[ChrisD07]

Jackie- Thank you for responding so quick. I am currently searching for a LLMD in the Bay Area of San Francisco.  I just watched  "Under Our Skin" and I was blown away, I learned so much and I am going to take a much more aggressive stance in treating this.

Todd-Thank you for the support. =)  I will ask for a CD57 on my next visit.  I am so surprised that the ID doc put so much emphasis on the ELISA when it seems to be inaccurate.  He kept stating that Igenex tests are worthless and regular labs would give a much more stable result.  He wouldn't even prescribe a bottle of doxy to see how it has an effect on me.

[patsy10]

The ELISA has about a 40% accuracy rate if I recall correctly.  It is a poor screening test for lyme.  The fact that the doctor does not know this leads me to believe he or she is not knowledgeable about lyme.

[JackieCalifornia]

I just went back and read the messages responding to your April 28 post -- they are still good advice (even including mine, ha).

To be faced down by an MD with the diploma hanging on the wall is always dispiriting.  It somehow insults your body for the pain it's going through...how wrong.

I'd find a new doctor.  Take all your test results with you.  The sooner you make the appointment, the sooner you will know more, and knowledge is power.

Neuros and infectious disease docs have unfortunate reputations as the thickest heads in the medical profession when it comes to Lyme.  Find an LLMD -- I see you are in California -- there are some good LLMDs out here -- *go for it*.  What have you got to lose?

[Todd36]

I know how you feel.  These tests are so painfully frustrating!!!  Hang in there...

I know there are other people on this forum (me included) who are receiving treatment for lyme with fewer +/IND marks on their Ignenex results than what you've presented.  If you’ve had lyme disease for a while now, the likelihood of detecting it using an ELISA is slim (at least from what I've read).  Your body's immune system stops producing antibodies for the lyme bacteria when you’ve had it for a while.  This is the reason why ELISA test is so inaccurate, as it's testing for lyme bacteria antibodies, which you may or may not have at this point.

I'm not a medical doctor but this is what I'd do.  Find an LLMD and have them run your CD57 immune marker to see if its suppressed.  Lyme, HIV and a few other conditions will suppress your immune system, which can be detected by measuring your CD57 marker.  Again, if you've had lyme for a while, you need to be clinically diagnosed in conjunction with your Ignenex and CD57 marker results.  

Good luck and check back in with an update.  We feel your pain and frustration…

Best,
Todd

[JackieCalifornia]

I'll let the more scientifically posters here comment on the specific bands, but remember that Lyme remains a disease diagnosed by symptoms, assisted by the imprecise and imperfect tests.

Given your symptoms and some positive (even if equivocal) test results (and your dr's comment that the Igenex results are 'false positives' -- this seems to be a favorite thing for drs who don't like Igenex to say) -- I'd take myself to a LLMD asap.

I don't get the lack of a positive ELISA as supposedly invalidating the W.Blot results.

Confusion is everywhere, and it's hard to make confident decisions based on messy information and advice.  Have you located an LLMD in your area?  Best wishes --