Support #2

I’ve posted before about the importance of finding support; attended support groups; recommended mailing lists. I’m one of those people who naturally seeks mentorship and support wherever I am as a way of coping with whatever I’m going through. But recently I’ve also realized just how lucky I am to find support in everyday places — the colleague/friend at work who listens and thinks through my illness with me, the husband who takes on extra duties, the parents who, though at a distance provide unending ideas, are willing to pitch in with labor and looking, believe in my experiences. Sure, I’ve had days where it seems that no one cares enough to call, friendships lost and regained only when I had the energy to pursue them again, days when I was on my own with too much expected of me and too little energy. But overall, even without support groups and other formal mechanisms, I am supported.

Unfortunately, not everyone is as lucky. Having recently had my name in the paper in an attempt to raise local awareness about Lyme disease, I have been contacted by a number of people who are also struggling with it. While these individuals are uniformly motivated and active in fighting for their health (they all made the effort to find me, after all), the varied experiences they have been through reminded me again of what has been shown for other illnesses: a complex ecology of support and connections exists among those who need support and those who give it [1], and dependence on individuals ranging from the helpful clerk who loads a car to a close friend can make independence possible. So if you find yourself refusing help (or needing it), please remember: asking and receiving are another way you can be strong, and a natural part of the human experience.

[1] Forlizzi, J., DiSalvo, C., and Gemperle, F. (2004). Assistive Robotics and an Ecology of Elders Living Independently in Their Homes. Journal of HCI Special Issue on Human-Robot Interaction, V19 N1/2, January, 2004.

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)

Liberating Constraints

Somebody asked me a few days ago, how I am able to live with and accept the impact of Lyme disease on my life. The resulting conversation helped me achieve a new understanding of what it means to live with a chronic condition.

Because Lyme disease is potentially curable, I find myself living with constant cognitive dissonance. On the one hand, I must believe I can be cured. Otherwise why treat? Also, treatment is less effective if you don’t believe in it. This creates a situation that requires faith. On the other hand, I must accept things the way they are. Otherwise I would constantly be unhappy with my lot. This is not always easy. After getting everything back, losing pieces of myself again is at times agonizing. There’s nothing I can grapple with physically in this fight, and sometimes I get tired of fighting. But in the end, giving up would be far worse than continuing, so I keep going. Read the rest of this entry »

Assistive Technology — don’t forget to use it!

It seems silly in retrospect, but one of the things that took me longest to integrate into my daily experience with Lyme disease was simple devices that would increase my mobility, strength, memory, and so on. Many of these things are inexpensive or even free, and all of them helped to reduce the impact of the symptoms I was suffering from.

Here are some top things that I made use of. Please comment on this post with your own ideas and maybe we can build up a nice list of things that anyone who is suffering from Lyme disease can draw from.

Read the rest of this entry »

Advice from someone on the other side…

I noticed when I was pregnant that there were suddenly a lot of pregnant people around. Funny how, once I had my first child, I saw many fewer pregnant ladies, but a whole lot of moms and dads with strollers. Now that I have lyme disease it seems that everyone knows someone who has a relative or a friend or … with lyme disease. The first two didn’t surprise me. This does. Makes me sad … but has turned out to also be very valuable. I found my doctor in NY because a colleague of mine had had it (turns out more than one had). I learned about the possibility that my (sub-clinical) seizures are caused by it from a friend of a friend. And so it goes.

Most recently, a former student and friend told me that he had an aunt who had recovered from lyme disease. He put me in touch with her, and she shared her thoughts in this gem of an essay (posted with her permission, and followed by my further questions and her response).

First, let me introduce my self. I was the California Statewide Tick-borne Disease Program Coordinator for CA State Department of Public Health (old name was Health Services) from 1992 to 2005. During my 13 years tenure there, my job was conducting the statewide tick-borne disease surveillances (including Lyme, Babisiosis, Erlichiosis, Bartonella), investigating human cases, working (collecting data) with local health departments and mosquito and vector control agencies and managing the statewide tick database (surveillance and disease testing)….etc.

I was bitten by a nymphal tick and infected with Lyme while investigating a possible Lyme case up in the high desert (the place was not known for Lyme) in 1999. To make a long story short, when I got infected, I was no difference from anyone else ~ a very bumpy ride, and experienced very complicated treatments. I had 9 ½ years of antibiotic treatment (Doxy, Zixothrmax, Biaxion, Rocephin-IV, Leviquin……etc.); and for a good of 6 years I was taking a combination of 3 different antibiotics (my monthly drug expenses was over $1500). Even with early treatment (2 weeks after I had the EM), my symptoms was not getting better after the initial treatments, as a matter of fact, my worse symptoms occurred during the treatments in 2001-2005. However, fyi, I stopped the antibiotics only about three months ago.

Most of my problems were fatigue, short memory loss, photophobia, smell and taste abnormality, nausea, vertigo, motion sickness, word reversals, words finding difficulties, and special disorientation (difficulties of judging distance, bumping into things, dropping things); as for the typical arthritis, I only experienced about 1 ½ years. Sounded like you’re having the “Neuro Borreliosis”, I would highly recommend you to read Dr. Brian Fallon’s work on Neuropsychiatric Manifestations of Lyme Borreliosis (Psychiatr Q, 1992, 63:95-115). [Editorial note: you can view that essay on the lymenet library and it is a great read]

I have been in this Lyme business for over 20 years, and I have seen enough Lyme patients never getting any better. There were many many reasons (political, personal, mis/delay diagnosis, no literate treating physicians, short term insurance coverage…….etc.) contributed to the failures, and I don’t believe anyone can come up with answers or solutions at this time. I’m sure you’ve read a lot of articles and books in finding a solution for your illness, and probably formed some opinions how you should deal with your Lyme. Nevertheless, there are several important things that I would like to bring your attention:

1) Take charge of your own illness

2) Aggressive treatments are very important; most of my Lyme friends had long term antibiotics got over the illness including myself

3) Trust your treating physician (if you can find a good one); the process usually very slow, long and bumpy. Before you feel better, you’ll have many low/worse days

4) Boot up your immune system; any holistic approaches will be helpful

5) Keep a positive attitude ~ always believe you’ll overcome the illness; mental state can be very negative at your not so good days

Hope, I answered some of your questions. Let me know if I can be of further help!

My answer: Thank you for writing to me. 9 and a half years sounds like a very long time to someone who used to avoid antibiotics like the plague, but I have been on them now for 2 months, so that boat sailed in any case. How do you know you are better? 3 months without after 9 years with sounds like such a short time — do you worry about a relapse or anything?

Great questions! Likewise, I was one of the persons never into chemicals (drugs, smoke, pain killers…). The only bad thing I did was one cup of coffee/daily during the weekdays in my adult life. I did worry about the liver damage and other problems, however, after one or two years of antibiotics, my symptoms did not go away. I did have my good days, but my bad days kept recurring. Since I have met hundreds of Lyme patients at work and at the support groups, I realized a very high percentage of the Lyme patients who relapsed due to insufficient antibiotic treatments. In my 9 ½ years infection and antibiotics, I managed to keep a full time job (I did take a two-month sick leave while I was on Rocephin-IV and I used up 4 ½ months of sick leave that I accumulated through the years) and lived a pretty normal life. Nevertheless, I noticed the constant stress to hide my problems (especially short memory deficit – could not conduct a meeting because I did not remember what was said two minutes ago….) in 2003 and 2004 may delay my recovery and I decided to take an early retirement in 2005. After 6 months of not doing anything at home, my health took a giant leap. As such, I returned back to work in March of 2005.

Yes, when your body was doing well, you’ll feel the difference immediately. Attached was a symptom chart, I did check marks everyday for seven years. My table used to be covered with 85% of the marks from 1999 to 2005. Right now, I only have one or two every two weeks! Highly recommend you to use this table; it’ll give you a very clear picture of your illness (good, bad or worse) ~ it also gave me a good justification why I needed the antibiotics (paid by my insurance). FYI, I continued my antibiotics at least 6 months after I became asymptomatic. [editorial note: here is the lyme symptom chart she was referring to. I am trying it out this month and it seems more comprehensive than my previous approach. One big difference is that I fill it out on paper instead of online. I may enter some summary statistics for charting later if needed.]

All about PIC lines

A PIC line allows repeated doses of intravenous (IV) fluid to be administered without having to repeatedly stick a needle in a vein. This is helpful when one has been told to administer IV antibiotics daily for six weeks. That much I knew when I arrived at the hospital at 9am on Tuesday morning. What I didn’t expect is that it would take almost 8 hours for this line to be inserted! Luckily, I spent much of that time with a wonderful neighbor in the bed next to me. Not only was she a sweet woman (she and her husband bought me lunch as I was unprepared with cash and had no way to go get it!) and a reminder of how much I have to be grateful for (a grandmother to many, she also was on her 6th chemo treatment), but she had a PIC line of her own and was full of advice. Here is what I learned about PIC lines and IV antibiotics both from her and from my own experiences over the last six weeks:

  1. Make sure the PIC line is inserted in your non-dominant arm! This will make it easier to deal with showering, administering medicine, and so on
  2. Ask that it be inserted about 2 inches above your elbow. This will avoid problems such as the dressing being in the crack of your elbow where the PIC line may get bends and kinks in it
  3. Be sure that everyone dealing with your PIC line keeps the insertion area very sterile. Do not be afraid to speak up and ask people how they are making this happen, and what to watch for or do yourself.
  4. Make sure that you are happy with your dressing. My PIC line’s dressing had to be changed every week. I was lucky enough to have a nurse very experienced with PIC lines most weeks, and I could really tell the differences on the week that a substitute changed the dressing. Even so, in the first two weeks, I had to ask for an “emergency” mid-week dressing change to ensure that the line wasn’t kinking, the tape wasn’t causing my arm to break out in hives and so on. If you are uncomfortable with something, speak up.
  5. Be sure to ask for an extension so you can reach the line with both hands. It was an invaluable aid that allowed me to administer my medication alone when my husband was busy with the kids or traveling
  6. Also ask for a shower bag. I used a combination of an ACE wrap, two rounds of saran wrap and a shower bag (a plastic bag with a drawstring at the top and bottom), and pulled the drawstring so tight it almost cut off my circulation. Even with all of that, my ACE wrap sometimes got wet while I showered.
  7. An ACE wrap or the top of a sock (cut off the foot) both make great covers for your PIC line. This helps the line from catching and pulling (you don’t want it to pull out!) and also provides some privacy if you are in short sleeves
  8. If your meds normally infuse by gravity (as mine did), and nothing’s happening, check if there’s air in the line. I made the mistake more than once of pushing the saline through so far that the bubble of air in the saline tube ended up in my line and then nothing would infuse. Once I discovered the cause of this problem, I didn’t have any further troubles with gravity-based infusion.

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