Negative ELISA, low CD 57, few symptoms

Can the CD 57 be used diagnostically? My understanding is that it should not be used to diagnose Lyme and even some LLMD's are no longer finding it to be a useful test.

Bedsides the removal of large ticks when I was a little kid living in Massachusetts, I have not been bitten by a tick in at least 25 yrs. I have lived in New Mexico for 12 years now, though visit friends back in New England in the summer here and there.

I have never had the flu or flu-like symptoms besides when I had mastitis. As in, in my entire life, I have never had the flu.

I was diagnosed with Hashimoto's in 2007, but responded well to treatment once I figured out the right medication and dosing. I have ups and downs, but in general lead a happy, pain-free life. My hormones are universally low, but I function okay even with that (i.e. progesterone, testosterone, DHEA, etc). Supplementing just makes me feel worse.

Anyway, if you had peripheral neuropathy (but not painful), some memory trouble, and an increase in anxiety, would you think Lyme if you have no recollection of a tick bite, no typical rash, no flu like symptoms, no current pain, a negative ELISA, and no Western Blot testing? I have some fatigue, but I am not getting enough sleep due to my son and my need for an increase in thyroid medication (as per labs, symptoms, and temps).

I would not even be thinking Lyme if my doc hadn't mentioned it due to my recent travel to New England and then the very low CD 57 (<20). The only symptoms that are really bothering me are the peripheral neuropathy and anxiety. Everything else could be just my normal endocrine issues. These are the only "new" things. Even then, the anxiety could just be because in the last 5 months I have had a couple colds, haven't slept well, my dog had a rare complication from a basic surgery which eventually led to her untimely death where I had to put her down (horrible, horrible experience and I miss her terribly), and my mom was in the hospital for what they thought was pancreatic cancer. I feel like any normal person would be stressed. So then it comes down mostly to the odd skin sensations in my extremities, but also other places as well. Sometimes my chest and back feel burn-y, or the side of my jar or ear. I have tingling, numbness, pins and needles, and/or burning in various parts of my body, but no pain.

Would you suspect Lyme or get more testing before you went down that road?

I had a negative Western Blot and very low CD57 (14). My LLMD diagnosed me based on symptoms and the low CD57. I believe I was infected with Lyme as a child, but I never had symptoms that were bothersome enough for me to understand there was anything wrong until fairly recently. When you have mild symptoms for most of your life, it's hard to recognize them. At my first appointment with my LLMD, I was surprised by how many "normal" things I experienced were actually symptoms.

It sounds to me like your symptoms, although mild, could be from Lyme. Lyme can certainly mess with your hormones, as well as cause fatigue, neuropathy, etc. If you have been infected for many years, it may be "hidden" from your immune system, so you may want to try to start treating Lyme to activate an immune response before you have a Western Blot. That way you could avoid a false negative.

Good discussion.

I totally agree with cappuccino curls—I would spring for the IGeneX.

But before doing that, I strongly suggest what Nosila is suggesting and what my LLMD did for me:

She followed protocol and we did the Elisa first, which was negative. Then she had me take 5 capsules of olive leaf extract every day for a month to "provoke" the buggers with the intent to increase immune response. That's exactly what happened and my IGeneX came back "CDC positive", the holy grail according to our pathetic insurance racket—I mean health care system.

My LLMD also checked my CD57, but did admit so many factors affect it, so this is peripheral information and most LLMDs use it as context for a much larger picture.

Symptoms are so confusing—I was like Nosila for the past 15+ years, I had a lot of minor things going wrong that I just learned to live with and only when they really started to snowball did I question them. Funny how you can learn to live in a miserable state.

-p

Interesting test results! I became much sicker after a couple rounds of steroids & abx last year (this was before I even suspected I had lyme & co.) My CD57 level was at 34 after that. I bet it's higher now a year later but LLMD isn't interested in checking it—she's already made her diagnosis so it is peripheral at this point.

Sounds like you know what you're going to do next—that's good. Please report back and let us know how things go!

-p

Each 'disorder' would have it's own ELISA - they don't all get tested for with just one test.

Also remember that the ELISA and WB are both antibody tests - and since you have had steroids, the immune system will respond even less, since Lyme alone can reduce the immune response. The likelihood of you getting a positive WB at this point is pretty slim when you consider these two factors.

I would encourage you to go for the PCR tests - they look for the DNA of the bacteria in your blood, & urine. The spinal fluid and synovial fluid (like from a knee) can also be tested in this manner.

While not all diseases/infections have been studied to see if they too produce a low CD57, this is what has been found by some very good Lyme researchers:

"In a cross-sectional study, patients with
acute Lyme disease (defined as disease occurring within
one month of infection) were found to have normal levels
of CD57 cells, while untreated patients with chronic
Lyme disease (defined as disease occurring more than 3
months after infection) were found to have decreased
CD57 lymphocyte levels. We have now documented a
decrease in this lymphocyte subset over 10 years in
conjunction with relapsing and remitting symptoms of the
disease. This finding reinforces the concept that chronic
Lyme disease is associated with a persistent immunologic
defect that prevents the infection from being cleared by
the immune system. Our observation also provides further
evidence that a decrease in the CD57 subset may be a
valuable marker of chronic infection with the Lyme
disease spirochete.

www.anapsid.org/cnd/files/strickercd57.pdf

Also, you should know that you have alternatives to long term antibiotics for the tick-borne infections. Many here use herbs to help with treatment or as a stand alone treatment and are healing.