Feeling better and a few firsts

First some news — I am happy to say that I am no longer suffering from constant headaches, have less dizziness, am not totally soaked when I wake up (though still sweaty) and generally seem to be improving. I still tend to need either an early bed time or a nap or both and have regular swollen and/or painful lymph nodes, but I am less dizzy, less out of breath, and generally happier with how I’m feeling. The improvement started as slowly as the original downturn, and definitely before I changed anything in particular. However it may have spread up as I began taking large amounts of vitamin D and starting the new energy-device. I can’t say for sure, and would not want to draw conclusions at this point. I probably won’t want to draw any real conclusions until I see either a total lack of symptoms (almost never happens) or I go for a year without a relapse. For now I’m just grateful for what I’ve got.

As for the firsts, I have in the last week for the first time had a doctor tell me he thinks I probably never had lyme disease in the first place, and had an acquaintance ask why I didn’t use make-up to cover up the fact that I look tired. Both of these, I am sure, are not uncommon experiences for others in the community. Neither threw me — I’ve been dealing with this long enough that I have fairly stable opinions about what’s going on and how I want to deal with it. However, they were a reminder of the ongoing mismatch between the expectations and views of the average outsider/doctor and who/what I am. I won’t even both to discuss why I think the doctor was wrong, I’ve spent plenty of time already on that in this blog.

But the use of make-up — that deserves a response, at least here if not in person. I know there are many opinions on this, and I have acquaintances with chronic illness who work very hard to make it as invisible as possible. I do not mean to criticize those choices in what I write. But for me, personally, make-up is not a solution. I don’t use it normally, and putting it on just to hide how I’m feeling seems counter-productive. My illness is invisible enough already. I appreciate the fact that people who care enough to look can see that I’m not well when I’m not. It makes it easier when I need to ask for help, or simply contribute less to an event, conversation, etc.  Additionally, while having Lyme disease does not define me, it is part of who I am. I am many things, and I don’t hide any of them. I  don’t see a reason to single this one out.

Back :(.

Although on sabbatical, I’m going to check in with a brief series of posts this month and next. I am in the midst of a relapse (severe night sweats since early january, more recently fatigue, out of breath, headaches and dizziness). After more than two weeks of symptoms that are getting in the way of daily life, the usual fears that this will stay came back and I decided to seek out a doctor (not sure exactly why, as at least the western model usual responds with a lack of solutions, even those doctors who believe that I am sick and, in principal, treatable).

The process went approximately like it does in the US. “Normal” doctors suggested specialties such as rheumatology. A relative has a friend with the long term version of lyme disease. And lo and behold, there is a doctor who specializes in tick-born diseases in Zürich. Another acquaintance has a son who was very sick, normal  treatment failed, and he found a doctor a full city away who practices “bio-medicine”. Of course the doctor’s schedule is full and he wasn’t taking new patients. But the son is apparently totally better now. Sounds tempting, if anecdotal …

In the end, I made an appointment with the tick specialist (reminiscent of an LLMD in how he reacted to me, but commented that antibiotics only work long term because of their anti-inflammatory properties, and interestingly had no experience with co-infections like Babesia, which are apparently quite rare here. A disappointment as the night sweats were making me think that perhaps that was the source of my relapse rather than the Borreliosis, as they call Lyme here). Still, he did a complete work up (blood, heart, even x-ray which I was a little concerned about). I am to go back in two weeks for the results, and partly went through with it all, after the comment about the antibiotics, out of rampant curiosity about the local patient experience.

In the meantime, I received an email from the bio-doc, who has found a way to fit me in, and on Monday no less. I’m intellectually curious about what will come of that, and perhaps because I am in a new country, wierdly hopeful given that I know almost nothing about his approach besides the anecdote of one child’s success… I made a cursory effort to research what I thought it might be (related to the Bionic 880) only to find skepticism in the blogosphere, and evidence that the company that makes the Bionic 880 is no longer partnered with the Dr. most have seen (one wonders why). Again wierdly, still feeling hopeful.

So off I go on Monday across Switzerland to see what happens. It’s been a couple of years since I’ve tried something new, and I’m pretty clear now that relapses are going to continue happening given that I’m on at least my third (significant) one since 10/10. Maybe this will change things. My gut says go for it. Wish me luck!

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)

Diagnosing Lyme in my son

I have waited a long time to make this post, for a two reasons. One is that I am still weighing the implications of writing about someone else’s life so publicly. Another is that I felt uncomfortable discussing anything here before I had told him what we discovered. I have resolved the latter and, at least for now, come to terms with the former. Let me explain:

About 18 months ago (March 2008), my husband and I had my son tested for Lyme disease because he had become chronically ill and very fatigued, unlike his younger self.  Although part of his test (the test for current infection) came back positive, we were assured that he did not in fact have Lyme disease. I consulted with an ID doc who specializes in Lyme disease to confirm this and was assured that his symptoms were “within range of normal.” At that time, I had not yet learned enough about Lyme disease to put myself into long term treatment, I still believed / wanted to believe the doctors who told me I was cured, and I believed / wanted to believe the doctors who told me my son was fine. Read the rest of this entry »

Running the Numbers (June/July, 2009)

I have entered another two month’s worth of numbers into my stats program and analyzed them. I had my best month ever in June, and it is easily visible in the chart included below.  I had many days with only one or two symptoms, and felt much better, than I have since I became ill. The mean number of symptoms per day was 4 in both of these months, as opposed to 8 or more in past months.

Read the rest of this entry »

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 »

Running the Numbers (Apr/May 2009)

I have entered another two month’s worth of numbers into my stats program and analyzed them. Of note is the fact that I was apparently hyperthyroid in Feb/March (and maybe before that) but went into remission in April. I’m gaining back my weight now, which apparently was caused at least partly by that.

I’ve created a new way of visualizing my data. The next image summarizes major symptoms since symptom onset (Fall ’06) through August ’08. Major events (such as the mold bloom) are marked at the bottom.

Read the rest of this entry »

The meaning of strength

The last two days have been trying. Yesterday, a flare up started while I was at work and quickly got so bad that I could not keep my eyes open. Luckily I was already sitting on the comfortable couch of a good friend at the time. I was able to enter that state of waking sleep that my body demands at times like that without qualms. As things slowly improved, I asked for some soup and we propped me up and ate lunch together. When I had to leave for an off campus doctor’s appointment (something I couldn’t cancel) he found a nice piece of wood and drilled a hole in it and presto! I had a walking stick. Another friend gave me a ride to the doctor’s building, and the walking stick helped me get around where the car couldn’t.

Read the rest of this entry »

Flares

My “bad periods” are becoming a regular companion in my experience of Lyme disease. I don’t mean the overarching up and down of my fatigue, headaches, and other symptoms, but the specific moments when I suddenly realize that something is wrong and my body’s demands overwhelm anything else.

At this point they’ve become so common that I’ve named them flares… the experience of each is unique and as a group they are becoming increasingly well defined… so I thought it might be worth documenting what I’m experiencing. Read the rest of this entry »

Running the numbers (March 2009)

I expect this will become an (approximately) monthly post as long as I am still in treatment. I have entered another month’s worth of numbers into my stats program and analyzed them. This month is of note because I switched meds half way through –Penicillin was begun March 13th. At that time, Zithromax, Mepron, and Ceftin were stopped. I also lost 12 lbs sometime between when I last weighed myself (maybe over christmas?) and now, probably due in part to Ceftin causing me to have about 4 bowel movements a day.

The news continues to be good. The charts below illustrate the change in various symptoms from last month to this (click on them to see close ups)

Read the rest of this entry »

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