CD 57

— update —

After posting the information below I discovered an additional article from 2000 by Stricker & Winger. They evaluated 73 patients with chronic lyme disease. Six of those patients were tested repeatedly over 4 months. They found significant differences between those with chronic lyme, and various comparison groups. This constitutes (I believe) better evidence than any of the other studies I cited. The findings contradict the conclusions below. I’m not sure what to think — it appears that knowledgeable Lyme literate medical experts have concluded that the CD57 is not trustworthy, yet this (early) study seems to indicate a big difference between groups. Here’s my understanding of what they did and found:

Sample:

  • 10 acute Lyme disease patients (within 1 month of a tick bite)
  • 22 patients with HIV and CD4 counts¬† < 200 / microliter
  • 73 patients with chronic lyme disease (huge variety in this sample: 3 months to 15 years sick; 31 hadn’t been treated and 42 were in or post treatment; 48 had primarily musculo-skeletal symptoms and 20 had primarily neurological symptoms). Of these, 6 were tested repeatedly over 4 months and 1 was followed for 9 years

Results

  • pre treatment 100% had abnormal cd57 counts; during treatment 50% did; post treatment 0% did (difference from pre treatment significant: p < .001)
  • acute LD 0% had abnormal cd57 counts; HIV 18% had abnormal cd57 counts. Both groups differ significantly from the pre treatment lyme group.
  • those with musculo-skeletal symptoms had higher cd57 counts (average = 58) than those with primarily neurological symptoms (average = 30); this difference is significant (p = .002), both groups improved during treatment.
  • in the 6 tested >2 times, 4 had clinical improvement (and all doubled their CD57 counts or more) and two did not (and their counts stayed low). The patient who was followed for 9 years had persistent symptoms and persistent low CD57 counts. This case was in submission and probably corresponds to reference [2] below.

Absent the testimonials below, this seems to be fairly convincing evidence that the CD57 count is meaningful. I’m very curious to hear any explanations for the differences in opinion here, and I don’t believe my medical knowledge is sufficient to judge them.

— end of update —

Some investigative blogism seems in order as I’ve just been given a new test (the CD57, also known as the Stricker NK panel) and need to understand how to interpret it. I’ll start by summarizing what I found: Although CD57 is biologically associated with Lyme disease CD57 cells are not a reliable clinical marker for the level of disease in chronic lyme patients, although C4a cells (according to Savely) and/or the vitamin D reversal pattern (according to LymeMD) may be (hopefully I will get a chance to investigate those in future posts). That’s not to say that CD57 has no meaning, only that it’s not as straightforward to interpret, on average, as we would like. Here is my summary of the literature on CD57 to back up the statements made in this paragraph. I’ll start by trying to explain what the CD57 measures, and then I’ll discuss the clinical and medical evidence that it is not a valid marker for Lyme.

There are two summaries available online that try to explain what the CD57 cells are (one by Ginger Savely, R.N. who says elsewhere that it is not a reliable clinical marker, and one by LymeMD who says that in his experience the CD57 count has not been a good indicator of the needs of his patients). Free Ideas’ summary of other’s opinions about the CD57 leads to the same conclusions: don’t trust the CD57. It also includes a great illustration of how T-cells work.

Despite the skepticism of the bloggers mentioned above, the summaries are pretty accessible. Basically, they say that CD57 cells are a type of white blood cell. White blood cells, and specifically lymphocytes, are one way the body fights off infection. CD57 cells are type of lymphocyte, natural killer T cells. When the body is fighting and infection (such as Lyme disease), the number of natural killer T cells increases. Most of these are CD 56 cells, but a smaller subset has the CD 57 marker. The presence of CD57 cells can be measured using flow cytometry.

But why should we care about CD57 cells? According to Focosi & Petrini (2007), CD57 cells increase naturally with age and with¬† diseases “associated with immune dysfunction” including conditions like multiple myeloma and rheumatoid arthritis as well as infectious diseases such as HIV, CMV, TB & Lyme (but they cite the Stricker & Winger papers (2002 & 2003) which argue that the CD57 count decreases with Lyme, so their statement is a little hard to interpret).

So what, exactly, is the evidence that CD57 cells might be a good measure of how ill someone is with Lyme disease? There are three published works that deal explicitly with the prevalence of CD57 in Lyme disease ([1, 2, 3] below). Two are longitudinal but anecdotal at best in the quality of their evidence ([1 & 2]). Stricker & Winger, 2003 present a case study of two patients with neurological Lyme with the unusual symptom of musical hallucinations. Over the course of 8 months, both patients were treated with oral and then IV antibiotics. One patient showed increased CD57 counts (she had received significant prior antibiotic therapy and began with a normal CD57 count). The other patient did not, and also only received temporary relief from her symptoms. Stricker, Burrascano & Winger (2002) is a case study of one patient over a 10 year period, who experienced consistently depressed CD57 levels. Marques, Brown & Fleischer (2009) is a sample study, meaning they gathered information from a much larger number of people, allowing it to use statistical tests to compare them. It finds no significant difference between those with lyme disease (divided into “post lyme syndrome” and “recovered”) and healthy volunteers. All three groups have a large range, and the means and standard deviations overlap a lot. This last study is to be trusted more than the longitudinal case studies because it looks at more people, however it tells us nothing about how CD57 levels change over time.

So here’s my summary: While CD57 cells are part of the immune system, and therefore have some relationship to how it is functioning, there is no clear information about whether they are associated at all with level of illness in Lyme disease [1, 2, 3]. The available data tells even less about possible cause and effect. However, although it is mentioned in the Burrascano guidelines as a possible measure of infection, there are two respected lyme literate healers (a doctor and a nurse) who have blogged independently about its unreliability (mentioned above). In the end, all we know for sure is that CD57 counts may be affected by infection [4], as well as age [4]. How they are affected, or what we can learn from that, is hard to say. I plan on looking elsewhere for quantitative measures of how my disease is progressing.

[1] Stricker R. B. & Winger, E. E. (2003). Musical hallucinations in patients with lyme disease. Case report, Southern Medical Journal, 96(7):711-715. (html version)

[2] Stricker, R. B., Burrascano, J. J. & Winger, E. E. (2002). Longterm decrease in the CD57 lymphocyte subset in a patient with chronic lyme disease. Case report, Ann Agric Environ Med, 9:111-113. (pdf)

[3] Marques, A., Brown, M. R., Fleisher, T. A. (2009). Natural killer cell counts are not different between patients with post-Lyme disease syndrome and controls. Clinical Vaccine Immunology. 16(8):1249-1250. (doi:10.1128/CVI.00167-09)

[4] Focosi, D. & Petrini, M. (2007). CD57 expression on lymphoma microenvironment as a new prognostic marker related to immune dysfunction. Journal of Clinical Oncology. 25(10):1289-1291. (DOI: 10.1200/JCO.2006.10.2251)

Drawn in by false hope

I was hesitant to even write about this experience, because who wants to admit it, but I wasted a lot of time and hope on something that I shouldn’t have. The reason I am telling you this is that if you are ill you have probably faced the same temptations I do, and maybe we can all learn something from my experience.

What exactly happened? I desparately want a cure, and I fell for the promise of one…

Read the rest of this entry »

More evidence for antibiotics … and the mold connection

I had the privilege of meeting a wonderful infectious disease doctor here in Pittsburgh this week. She treated me as an intelligent person who deserved a say in my own care, and was willing to talk about and even consider the possible value of additional antibiotics. We ran tests to try and verify one or more of the hypotheses I’ve been talking about in my blog, and also discussed the role that my December-February 2006/2007 mold exposure may have played in my illness.

Wonder of wonders she then had the kindness to respond to some questions I sent her by email a few days later, by which time she had (1) read an article I mentioned to her as possibly suggesting the value of antibiotics and (2) had most of my test results back. She answered my questions and discussed both the article and my test results in the email and included a table with the full details. I was amazed and grateful.

Suddenly the picture seems much clearer .. and perhaps also more complex. The test results pretty conclusively say that I don’t have an auto-immune disease and that I have lyme disease. I was shocked by the latter, it is not supposed to be possible after the sort of antibiotic treatment I had, but the IgM (the test which shows current, active infection) was positive on my western blot, and in fact included markers that are highly specific to lyme. As expected, the IgG (which shows past exposure) was also positive.

I have begun researching mold in any case and have some questions about how it may have contributed or may be contributing to my situation. But the case seems very clear for a specific explanation of many if not all of my symptoms: the IgM test tells us that I still have an active infection. My gut was right.

Diagnosis!

The path to my diagnosis was surprising at the time, though far less so in retrospect. At a time when my doctors were completely at a loss, and I had begun interviewing Massage Therapists to find relief for my symptoms. The third (and final) one that I spoke with suggested that I might have Lyme disease the very first time we spoke by phone. As soon as she made the suggestion I realized that it was indeed a possibility and called my MD/Homeopath to ask that she add a Lyme test to the bloodwork that she had just ordered on our 9/25 visit.

Sure enough, the ELIZA test, the first test typically ordered when Lyme disease is suspected, came back abnormal. My MD/homeopath informed me that Lyme was still unlikely as this test has a high false-positive rate, but ordered the Western Blot typically used as a follow up. This test takes a very long time to be processed in the fall as there are many people who need it, and it wasn’t until a month after the masseuse first suggested Lyme that I finally got a definitive result: my Western Blot was positive. In fact, everyone who’s looked at it has been shocked by just how “lit up” it was.

CAT Scan, weaning, unweaning …

Probably one of the most difficult moments of this whole experience was the morning of October 4th, when I showed up at the hospital to get a CAT scan. After all the paperwork was done and I arrived at the lab, I sat down for the nurse to prep me, and she asked me if I was nursing or pregnant. I said that I was nursing, and she explained that I would have to stop nursing for the next 48 hours because they were going to inject me with a contrast that would make my breast milk dangerous for my daughter.

I lost it. I was totally unprepared for this news, I had not prepared my daughter, I still felt guilt over having weaned my first child suddenly and had sworn I would not do the same to my second, my husband was out of town, and I had no clue what to do. Luckily, I reached my best friend on the phone, and she walked me out of my emotional response and encouraged me to put my health first, which is what was sorely needed at that moment. I told the technician to prepare me, but could not stop the tears from running down my cheeks as I did so. I already knew that I would probably wean my daughter for good, as her night nursing was interfering with my sleep and I knew weaning her was one of the steps I needed to eventually take as I worked on healing myself. A doctor walked in as this was going on and asked if I was o.k. I did my best to say yes, but I’m quite certain that moment is the reason the lab called back less than 8 hours later with the results of my CAT scan: NO CANCER. What a relief, for me, and especially for my husband, who deeply feared that we would get bad news.

I returned home and (after consultation with at least one more friend) told my daughter that just like mommy’s arm was not working last week, this week her breasts weren’t working, and that I could not give her milk. Her response makes me cry even now months later as I write this: truly the worst part of weaning her was sitting in the hospital imagining how she would react. She handled the situation with a grace that I still strive for when faced with unexpected and unhappy events. Unfortunately, at the same moment, she took on a burden bigger than a 2 year old should have to bear, and it began to visibly wear on her as the week progressed. Finally 10 days later, my husband and I decided to allow her to return to nursing.

This return to nursing was decided on after a tearful morning talking to a wonderful La Leche League leader who supported me in my choice to wean, but also encouraged me to consider options I hadn’t seen. In particular, she told me that I could choose to feed at times and frequencies that made sense to me, rather than those preferred by my daughter. I chose to allow nursing only once per day to minimize the physical requirements: the time of day I treasured most, right when I come home from work. No night time nursing, and no frequent nursing. Also, should I have to wean again if my diagnosis required it, only one feeding would need to be eliminated. Athough a little bit of a bumpy transition, the return to nursing was exactly what both I and my daughter needed.

My husband insists that we figure this out

Shortly before the 9/25 doctors visit described in my next post, I received a phone call from my husband (who was in Australia at the time). He told me that we needed to insist that my doctor start conducting tests and eliminate possible causes of my symptoms, starting with lymphoma.

Now, I had actually mentioned my concern over that possibility to my MD/homeopath before, and she had assured me that something abnormal would have shown up on my X-rays in December. However, my husband was insistent, and I was still worried myself. Also, we did not just want to test for cancer, but rather start eliminating every possible cause of this illness until we could track it to its source. My husband in particular believed that I really was ill, and not just fatigued by a difficult lifestyle.

While I myself sometimes had doubts if I was just making a big deal over getting too little sleep, I had trouble believing that the sort of pain and frozen muscles I had experienced over the previous month could have been caused simply by an unhealthy lifestyle. Also, I knew that I ate well, exercised, and got way more sleep than my husband. I was beginning to believe that, as a colleague had told me, I needed to figure this out for myself. In fact, by the time my husband called I had already begun to take steps to improve my lot by sleeping more and getting a massage. His belief that my experience warranted concern and investigation helped push me over the edge to actually advocate for myself in a way I had not until now. I am so grateful for his insistence on action. As a result of that phone call I:

1) Asked my MD/homeopath for more tests (on 10/25). She ordered a repeat of my blood work with some additions, a CAT scan of my lymph nodes, and another X-ray.

2) Began interviewing massage therapists in earnest, trying to find one who would massage my lymph nodes to help drain them (a big mistake!). This ultimately led to my diagnosis.

3) Arranged to take a week off work in order to determine if more rest would help me, take a break from the stress of having way more to do than time to do it in, and do some research to try to figure out what was wrong with me.

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