New Goals for the Blog

If you’ve visited me recently at gotlyme.wordpress.com you may have noticed that we have a bit of a new look (and that we can now also be found at pghlyme.org). This blog was slowing down, and I made the decision to help revitalize it by joining its effort with that of the Pittsburgh Lyme Support Group, something I hope will be mutually beneficial.

The PghLyme Support group is trying to get a strong support network off the ground in Pittsburgh, and we’ve made this blog it’s front page. As part of that effort, we’ve also added a new author, Pittsburgh Lyme Support Group founder Bill Moore. He is listed on the contact page, and has written about his Lyme Story. Bill also founded the pghlyme facebook group, and I am very excited to have him collaborate on this blog. I hope you will enjoy his contributions as well.

 

 

Slipping between the cracks

In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases – I think of Lyme disease and wonder whether they were properly evaluated for it. I often think of the saying ‘when you have a hammer everything looks like a nail’ and wonder if I should say or do anything. But I also know that I was headed down the path toward an MS or ALS or similar diagnosis myself. I only discovered that I had Lyme disease because I was lucky. A massage therapist, who I called to ask for help with my pain, suggested the diagnosis.

One of the three told me she had a false positive test for Lyme. This more than anything set off alarm bells in my head. How could I fail to wonder whether the ‘false positive’ was a true positive, given the lack of specificity in tests. Many doctors never tell patients basic facts about diagnosing Lyme disease.

In the end, I can’t be sure that any of these individuals have Lyme disease, and two of the three have passed away, so even bringing it up would only be a cruelty. But it breaks my heart to think of folks who are that ill not even being properly evaluated for Lyme disease, because I know that there is a way back from Lyme disease.

The passage of PA State law Act 83 in 2014 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) mandates education of lyme patients (I don’t think I’ve written about that success yet! I will have to post separately about that). But how can we educate those who fall through the cracks before diagnosis?

For now, at a minimum, I will speak up, even if I fear seeming like a hammer without a nail. But maybe it’s time to do more — find groups of outdoors focused individuals and tell them Lyme disease exists, and that it is controversial, for example. Feel free to share other ideas for how best to reach out to maybe-lymies :).

Life without major relapses

It’s been about 2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge — it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a backup.

Most recently it meant I could say yes to being on a program committee, a work event that I have not been able to participate in much over the last few years because I have restricted my travel to (mostly) no plane flights, and (mostly) no time zone changes. In other words, it means I can live my life a little bit more like I did before lyme, before 2006. But does it mean I am cured?  Continue reading “Life without major relapses”

Strain-based immunity?

Strain-based immunity?

This news article highlights results from a study exploring whether people exposed to a particular strain of Lyme disease are immune to that strain for any length of time. The news article gives a nice layman’s summary of the research article. The main result is that it seems statistically more likely that the participants were immune to the strain they were re-infected with for some time, since the strains present in their subsequent infections tended to be different than the strain present in their initial infection. The participants in this study only included people who had multiple culture-confirmed erythema migrans rashes. Blood and skin were cultured to identify Bb strains could be extracted. In addition, the participants were treated ‘with standard courses of antibiotics’ after each rash (I read this as ~3 weeks oral doxy), at which point the rash resolved. Participants had evidence of disseminated infection before treatment, meaning the results cannot be attributed to only involving people who were just infected and quickly and decisively treated. Most participants were infected at least a year after their initial infection. 

There is no arguing with the fact that participants in the study had been infected with multiple strains, likely at different times. However, the authors do not address the question of whether the original strain could still be present and even symptom causing, just not implicated in the rash. The authors do state that ‘our findings do not support the hypothesis that relapses in antibiotic-treated patients would be more likely to be culture-negative’ and then go on to say that 63% of participants had a culture positive second episode. However, since the inclusion criteria for the study was to have a rash, which indicates some sort of presence of Bb on the skin, it is not surprising to me that culturing was relatively successful (I do not have a reference handy to back up the idea that rashes would be easier to culture, does anyone know of one?). In addition, if rashes are associated with early stage infection the inclusion criteria may even have biased the study toward people who are likely to have been re-infected. So one possible explanation for the results is that people developed immunity. But I think another possible explanation is that when people were re-infected with new strains, they developed new erythema migrans rashes. However, when people are re-infected with or relapsing from strains with which they were previously infected, they are harder to culture and their symptoms express in other ways. The authors do not address this possibility in their article.

Evidence for Erlichiosis transfer by Blood Transfusions

Evidence for Erlichiosis transfer by Blood Transfusions

“A 9-year-old Georgia boy who developed a rare tick-borne disease got the infection from a blood transfusion, according to a report of his case.

The case is the first time this infection, called ehrlichiosis, was spread by a transfusion, said Dr. Joanna Regan of the Centers for Disease Control and Prevention.”

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.