One more reason for doing Yoga

I’ve mentioned before that Yoga is a key part of my health maintenance and relapse protocols. Today I happened upon an article that may explain why I find Yoga so beneficial: It directly effects the production of compounds that enhance the immune system. Here’s a quote from an article in Salon discussing the study:

“The researchers found that the nature walk and music-driven relaxation changed the expression of 38 genes in these circulating immune cells….  yoga produced changes in 111”

I also looked up the original study  (published in 2012, and open access). On reading more deeply, it appears that the research Salon is referring to is focused on a combination of pranayama (the facet of yoga concerned specifically with breathing) and asana practice (the facet of yoga concerned with poses). They also review past work on the physiological effects of yoga practice. The study tested for gene expression 2 hours after practice but does not shed light on the effects of regular yoga practice over time, or the length of time for which a specific practice has an impact.

Qu S, Olafsrud SM, Meza-Zepeda LA, Saatcioglu F (2013) Rapid Gene Expression Changes in Peripheral Blood Lymphocytes upon Practice of a Comprehensive Yoga Program. PLoS ONE 8(4): e61910. doi:10.1371/journal.pone.0061910

Training a service dog

SONY DSCI had my first session with a private dog trainer to explore what Gryffin could do to be of help to me. I have my work cut out for me! Here’s what we discussed:

  • Retrieving things: Gryffin could help pick things up and bring them to me when I need them. One of the most important: Getting my cane if I realize I need it and don’t have it handy (since I am often just fine, and sometimes have very rapid onset problems, getting a cane and/or a jacket for me could be quite valuable). To help him learn this, I have two first steps: For things that have names, begin teaching the name by putting a treat on it and saying “find name” (for now). For things that don’t have names, he has to learn to pick up first. So I need to give teach him to “take” “hold” and “give” a variety of items with treats. Eventually I’ll be able to point at something or name it and tell him to pick it up and carry it back to me, and maybe even send him down the hall to my office for my cane or jacket if I need it.
  • Finding people: This is useful when I am tired and want to ask one of the kids to bring me a drink of water (for example). Teaching it relates to the find part of the last thing. I’ll teach him the name of each family member, and to go to them on command. Eventually we’ll teach him hide and seek and other fun games so he can get someone if I need him to.
  • Closing and opening a door: This is useful because I often need to close my door (for private conversations or a nap) and open it (when someone knocks). When I’m feeling tired, it would be nice not to have to get up to do this. To learn closing a door, he first need to learn “touch” which is to push agains something with his nose. Eventually I transfer this to a door by literally taping the thing to the door and letting him practice touching that. Opening a door: This will build on “take” and “hold” by attaching a rope to the door, and teaching him to back up while holding it. Eventually I’d also like to add turning on and off the office light to this.
  • Carrying things: He can carry about 1/8th of his body weight, which translates into one laptop and cord on the way to class if I’m having a bad day. Right now we will work on wearing a backpack, and eventually add water bottles for weight.
  • Behaving in public: Lots of effort needs to go into this. He still isn’t a great heeler, and he tries to nose new people. He needs a down stay that is totally reliable. And he needs to learn “quiet” which I will probably teach him partly by teaching him “speak” on command :).
  • Equipment: My trainer feels it’s important for him to wear a cape to limit attention when he’s “working” at the workplace. I am going to probably transfer some badges I have (“In Training”) and (“Working Dog”) to his backpack so I can use that as his cape. Eventually she recommended getting a handle for balance in those moments when I need it.

I don’t expect to need his help most of the time, but at the moments when I do, it will be a relief to have his help with all of this. And so far he loves every minute of the training, especially when it involves treats!

The four stages of relapse

I’ve decided it’s time for an (admittedly tongue in cheek) exploration of my emotional reaction to relapse. Tongue in cheek not only because I’m comparing to a very well known model normally called “The five stages of grief” but also because the evidence suggests that that model is a poor representation of what really happens to people suffering from grief (as described in this news article which explores grief across cultures and a book by psychologist George Bonanno who has studied grief, its heterogeneity, and successful coping with grief extensively). So with those caveats in mind, here’s my version:

First off, I am pretty much always experiencing two things at once. Secondly, my order is different.

Denial + Acceptance

I seem to be a master of Cognitive dissonance at the start: Big voice in my head: These initial symptoms will not be a relapse. They WILL NOT BE  A RELAPSE. I will repeat that as often as necessary. Small voice in my head: I’m probably going to have a relapse, but it will be short and I’ll move on. What I say to others: I’m feeling fine. What I tell my husband: I’m having night sweats (or whatever other symptom) so be warned. Hopefully it’s nothing.

Bargaining + Creating A Solution

I go into research mode. My pattern is the same but the outcome is different each time. I come up with some “solution” that will make things better, research the wazoo out of it, start down that road, and if I’m lucky drop it completely because the relapse ends. For example, last time around I researched disability accommodations, this time around I researched canes and low dose naltrexone. The fact that I got to two things (and executed on them both) is probably a hint that this relapse has been longer/worse than usual. This comes with a fair dose of optimism: whatever I come up with, I’m convinced will help. In the case of my new treatment idea, I was stubbornly applying the placebo effect along with hoping it would work for the first four days I took it. On day 5 I could not ignore the symptoms that were coming back, but I’m still going for the placebo effect — though I’ve never experienced one before I’m going to believe this is a herx!

Anger + Self Doubt

I’m currently in the “I want to throw things (if only I had the strength to)” stage. Actually, I do have the strength to sometimes, but at those times I’m neither angry nor depressed so I don’t want to then. It’s when I wake up from a nap and my arms are too weak to even use my cane easily that I want to throw something. This is about when I also allow myself to start wondering if I’m not going to get better, should investigate other diagnosis, and whether I’m contributing enough at work to be useful there, whether I should just stay home and give my kids what they need, and why no one asked me to review any UIST papers or sit on any proposal committees this year.

This doubting is a bit ridiculous considering I am on a program committee and an NSF panel this spring as a reviewer, submitted 8 papers just this Spring (7 to top tier conferences), am co-advising 6 PhD students, teaching a class, helping with the hiring committee and tenure review, and spending plenty of time with my kids. I needed to say (and read) that so forgive me for the self-indulgence. But doubt I do nonetheless. It’s true that at home long walks are limited to when the dog and I both want them, I have lots of kid time, and I can use my energy as much or as little as I want, sleep when I want, play when I want, work when I want. It is so much easier that way, and perhaps that’s the most legitimate reason I phantasize about “just stopping”. On the other hand, at work I am valued for my mind (especially useful to feel and know that when the brain is sometimes fuzzy or difficult), and I contribute in a totally different way than at home. Work may be hard at times but sitting at home feeling sorry for myself while the kids are at school (worst case) would be far harder.

Recovery + Change

I have to believe it will end with recovery, as it always has in the past. A day will come when I get back on my bike, put my cane away and can just be myself again. Or maybe a day will come when I am comfortable in my new skin. But I’m betting on the first outcome. It may make it harder day to day since I don’t truly accept what’s happening to me, but it gives me hope for the future. Besides I get to experience “recovery” almost daily for a few hours here and there. And I am becoming more comfortable using my cane. I don’t use it at home — that’s a space to be myself, relax. But at work, instead of worrying about the attention it attracts I feel the positive energy and support it brings me.

A Good Remedy: Patience + Faith

So where does this all leave me? It seems like forever, but this all started getting bad only at the beginning of March. So I’m a month and a half in, looking at an international trip in a few weeks, realistically this could last 3 months given that travel. Not terrible compared to other relapses, not great either. What I need instead of all of the other things listed above is one simple item: patience. I need to persevere through this as through all the others and wait it out. And I need to keep the faith that this too will pass.

Low Dose Naltrexone: A new treatment option?

I am in the process of researching a potential new treatment for my Lyme disease, and this post is a place for me to summarize what I am finding. As I describe elswhere in my blog<link>, I think it is important to consider any treatment plan from multiple perspectives. In this case my research includes the mechanism by which it functions (“process data”), clinical trials (“frequency data”), the impact of side effects (potential risks), and patient experiences
(Lyme patients and also other diseases). I’ll go through each in order. The treatment I’m exploring is Low Dose Naltrexone (note I am linking to the Wikipedia article, which as of this writing is at best incomplete, since it does not include all the trials that have been done). A potentially better source is, which is run by the doctor who discovered this use of the drug and two other doctors. Read the rest of this entry »

Strong Evidence of Lyme Persistence in Monkeys

A recent study (2012) proved the persistence of Bb (Lyme) in Rhesus Monkeys. The researchers waited 27 weeks after infection in their first experiment, which is all I’ll discuss here, and then tested with multiple methods. The Eliza declined in treated animals, which might be interpreted to say treatment worked. However, in fact, spirochetal DNA and RNA were both detectable in multiple treated animals (not all, but some). DNA and RNA means that Bb was both present and active/alive in some sense (being transcribed). Here’s a quote:

Read the rest of this entry »

Relapse #n

Or maybe I should call this YAR (yet another relapse). Who’s counting, anyway? This one (maybe) was triggered by international travel and possibly stress. I’m about a week in, and as usual it’s both new and the same. Started with night sweats (while still on the trip), transitioned to nausea (new) and dizziness and now some pain as well (headaches, back and shoulders, etc). Not to mention the fatigue, sometimes just putting my own boots on gets me out of breath (those zippers!).

As usual, I find myself trying to make something new of this, because I have to do something. In the past I’ve developed new treatment plans, explored disability accomodations, and explored new doctors. This time around … I went shopping for canes (I had tossed my old one in a fit of hope and because it was falling apart). I’m heading to a conference at the end of April, and I’ve always found “seat canes” to be particularly helpful in that sort of setting, so I invested in a much nicer one than last time around. It arrives Monday, and I hope it will be as nice as it looks online! I’m using a hacked together cane at work right now (an old broomstick with rubber bands so it doesn’t slip!) so I also invested in a very simple wooden cane to replace the broomstick.

Really though, I want something more satisfying to do than shop for canes or try to sleep through it. Lying here in my office (in my lovely zero-gravity reclining chair; another investment in comfort when ill) a few minutes ago I tossed around feeling sorry for myself and even tried to work up to some tears or a good primal scream, but really it just didn’t feel right. It wasn’t going to change anything, after all.  Then I thought about working, but I guess I need a better project in my line up because none of my current ones were appealing enough to pull me out of the haze of pain I was in. So here I am writing a blog post instead (and it is helping :).  Read the rest of this entry »

Urgent need for donations

This was not my children’s lyme doc, but he is one of only a small number (2 or 3 that I know of) on the east coast who sees kids under 12, and a hero to many families with Lyme. Please help support him if you’re able. You can donate here. Even a small amount would make a difference, but he especially needs it by the end of the month:

Children’s Lyme disease network has a site to make online donations: Read the rest of this entry »

Just a Cold

I’m miserable this week. And it’s making me happy. I’m coughing up gunk, sneezing, even slightly nauseous, and I’m still on top of the world. Why? Because it’s just a cold. It started on Saturday with a sore throat, and I am already starting to feel better. I can still walk my dog, I am still cooking and cleaning and taking care of my family, I missed only one day of work, and I can treat it with simple supplements, cough drops, and a warm bath or sauna (which I luckily have in the house because I used it to treat my Lyme disease). It is not a relapse which I feared might be coming on (as they have every year until this) at the start of December. I had the classic signs (nightly sweats, increasing fatigue days) but began a new set of supplements and seem to have staved it off. The supplements come straight out of the Burrascano guidelines, and include high quality fish oil, vitamin D, vitamin C, vitamin B, CoQ10, and a few specialty supplements suggested by my Naturopath. While on them (until this week) I didn’t even get a cold as my family cycled through more than one. And the relapse signs faded. So, pill popper I am not (by preference) but I’ll keep taking these!

I remember the days and days of being grateful for feeling well when I first came out of the worst of my Lyme disease (which I re-experience after each relapse), but today I am grateful for feeling lousy! And laughing at the very idea that a cold is a reason to give thanks.

Disability Accommodations?

I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one might go about doing that.

First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination. The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA.  Read the rest of this entry »

Repeat Relapses

Being out of treatment, I don’t have things to post that often anymore. Or perhaps I’m just too busy. Having gotten back from my sabbatical I’ve been thrown headlong into a very difficult semester. And when I don’t  feel well I have nothing to fall back on because I have no wiggle room left while doing everything I’ve been asked to do and still sleeping and taking care of myself.

However, Lyme doesn’t pay attention to those things, and so I’ve twice in the last 6 weeks had a week in which I had to step back. The first time I didn’t pay too much attention. It was after a trip, I was fighting a cold, and working hard. No wonder I ran into trouble. On the other hand the symptoms were unusual — tingling in my lower limbs is a new symptom (I think), and while the associated fatigue and shortness of breath when moving about were familiar, the tingling concerned me, especially when it was still going on a few days later. I also realized that when I’m tired like that I have trouble focusing (I see double).

Read the rest of this entry »

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