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 :).

Re-Post: Ask your senators to co-sponsor Lyme disease bill (S. 1503)

Senators Kelly Ayotte (R-NH) and Richard Blumenthal (D-CT) have introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 (S. 1503).


This is a NATIONAL bill, folks, which means it potentially subsumes the need to pass these on a state by state basis and has a big impact. It would help countless people if passed. We need you to help support this bill by sending a letter to your senator! It won’t take long, please do it because numbers matter. The more that our state senators see how many people in how many states care about this, the bigger the chance it passes. If you are reading this, you have been touched by Lyme in some way. Please help.

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?  Read the rest of this entry »

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.

A Training Plateau

We’ve reached a training plateau. It seems as if Gryffin isn’t really learning anything new right now. Perhaps I’m just unmotivated, as I’m feeling outstandingly well. Or perhaps it’s the constant time it takes. Or perhaps it’s the fact that he’s mastered the impressive stuff. Now we need to work on basics and small additions. For example, he’s really great at down when I ask. But there are many incremental steps from there to going down at a distance; staying down when I am out of sight; staying down for one minute longer; and so on and so forth. Similarly, he’s pretty good on the leash (especially when he’s in the harness) but that’s a different matter from pulling steadily but lightly when we walk, in the right direction; starting exactly when I start; stopping exactly when I stop and so on. So the most recent training session we had, which will also be the last one for at least a month, was a long list of incremental goals:

  • Down from a distance — 1/2 step at a time — rope play as reward (or food). To be done at first without harness and perhaps later with it.  This will eventually translate into me giving him all sorts of commands from a distance, but it’s the first one we’ll practice.
  • Let’s go — so that he always comes with me. He needs to follow where I lead in this and not pull back (or sideways, or forward too hard). After we get this on level ground in the house we’ll be working up to other locations, including out and about and on steps. The goal is to focus on places he doesn’t like, moments he tends not to listen. This will be done with harness.
  • Stand and wait — We’re moving away from an automatic sit to an automatic stand whenever he’s in the harness and at my side. This can be practiced with Let’s go.
  • Switch — We have decided to get a touch switch installed in my office. It’s been too hard to teach him to push a switch up (he pushes it down great). We’re practicing doing it reliably, and eventually from a distance, without the harness for now. Could do with rope play as reward. Many many repetitions.
  • Door — I had been using “open” and “close” but that’s confusing because some doors are pulled to open, others are pulled to close. Also he’s getting less eager to do this. We’re changing the names to “push” (with paws) and “take” (a rope in the mouth), with me deciding which one depending on which way the door needs to move. Will practice with harness.
  • Stays — work on longer stays. Daily. So easy to forget/ignore this. He just stayed nicely while I went and did something in a different room for a few minutes though :). We practiced sit and down stays that way today.

One of the challenges with Gryffin is that he does not like corrections. I have to minimize them to avoid turning him off training. And pump up the praise.

Lyme Support Gr…

Lyme Support Group

September 29
October 6
December 1
6 – 9 pm

Christ Lutheran Church
910 North Avenue
Millvale, PA 15209

A new Lyme Support group is getting started in the area (about time, I think the old Etna one I have posted about before is now defunct). Hope this is of use to some of you.

Assistance Dog Training Update #1

It has been 4 months now since I began training our pet as a service dog. Our intent at the time was to work on training Gryffin to (1) retrieve things; (2) find people; (3) close and open a door; (4) behave in public; (5) identify and get appropriate equipment.

It’s been a joy and a pleasure for both Gryffin and myself to work on these things. We’ve met the trainer, the wonderful Arlene Halloran, about once every 3 weeks and continued to attend puppy class in the intervening 4 months, and while we have lots to work on, progress has been made on every front. The most fascinating thing about the process is how to break things down into simple steps that he can learn, and how much I’ve learned about his personality and quirks in the process. Here’s an update on where we are:

Retrieve: Retrieving is broken into two types of tasks.

  • The first thing we started working on was “find” (by name). This is going pretty slowly — he is beginning to understand naming, but typically sniffs around until he happens upon the right thing and I praise him and give him a treat. So he has the idea of find but has a long way to go. To make things slightly harder, I have been inserting other commands between find commands, and varying the order of things found. He is most reliable with the cane. We have also begun teaching him to find my children by name. Also his Kong (for peanut butter when we leave the house), keys, and anything else we can think of that is useful.
  • The second thing we began working on was “take” “hold” and “give”. He has made significant progress here. At first, I had to put something in his mouth and hold it shut. Then we progressed to him taking it voluntarily from my hand, eventually no matter where I held it, and finally from the floor. Now he will pick things up off the floor even if they are across the room from me. Also, he will pick up a variety of things including toys and soft cloth things, but also more uncomfortable things like a set of keys or a metal spoon. Today we introduced take by name (as in “take keys”) and soon we will begin working on taking things by name that are out of sight. Eventually he will also learn to “clean up” his toys.
  • For getting the cane, we discovered he is uncomfortable picking it up. We’ve incorporated it into the work on pull (described below).

Find: Described above under retrieve.

Close and Open: This is broken down into several basic abilities

  • “Pull” (tug of war on command) can eventually be used to retrieve something heavy, or open a door. He loves this game, and in one training session progressed to the point that he would pull the cane around. We have not yet applied it to other things like doors, first I want to make sure the cane pull is very solid.
  • “Touch” (touch something with your nose). He does this every time we let him out back. However, it turns out he doesn’t like to push things very much. In fact, we have had to work very hard to get him to push open the pocket door, by progressively narrowing it and calling him through it. This will probably not be used as often as other things.
  • “Paw” (shake hands, and eventually “High 5”). He is not yet reliable with this, though my daughter has been working on it. We will try to improve it this month, and make him do it every time he wants to go out. Eventually we can teach him to use a paw to close a door (or turn off a light, etc.)
  • “Back” (walk backward). This will eventually be used to pull on something and back up so a door opens. Right now, he walks back with a lure and me in front of him. The next step is for me to stand beside him and we both back up (with a wall or couch to help us stay aligned and straight).

Behave in Public: There are several commands we need to progress on for this.

  • “Under” is the command used when he needs to get out of sight (under a bus bench; table in a restaurant, etc). He can only go in these places in the U.S. because he is training as a service dog and with permission, of course. He is also practicing this command at home, and has finally progressed from doing it with a lure to doing it with a snap of the fingers most recently.
  • “Stay” is the basic command that is commonly taught to many many dogs. He needs to learn to do it more reliably, and in many many different situations. We need to work on it much more at home as well as out, and work towards “errorless learning” (increasing the difficulty always to just below what he can actually tolerate). Tied to this, we realized today that he doesn’t actually know the word for down (just the signal) so we will work on this too (my daughter being my ever present helper :).
  • “Leave it” is a safety command — when we walk by dead bird, for example, leave it should cause him to look at me and ignore the yummy item on the street. This needs lots more practice.
  • Greetings are an important moment, as is entering a new space (a home or business). He needs to learn better behavior in all of these settings.
  • “Bed” is a useful command in my office, where sometimes students are uncomfortable around dogs. He needs to learn to go to his bed, lie down, and stay there as long as I need.

Equipment: In addition to the obvious appropriate equipment, we need to explore some other possibilities: A cape that can carry things (such as a laptop) might be useful. Also, a “bridge handle” that might be able to help with balance. Finally, I am hoping to start a research project involving a video camera and buzzers or some other communication mechanism that I could use to help guide him to an object of interest, whether in or out of sight.

Personality: I have learned thanks to Arlene’s insights how to identify some of Gryffin’s stress signals (“this is too much for me”), that he responds by shutting down to being criticized (he much prefers praise and just ignoring the mistakes), and just how much he loves being trained.

Gryffin and I are both so happy with the progress he has been making. All of this has been made easier by the fact that I am very energetic at the moment, with no symptoms at all most days. It’s a pleasure to work with him knowing that this will pay off on the harder days, and to enjoy the good days we are having right now.


Lyme disease cases skyrocket [in Pittsburgh]

Lyme disease cases skyrocket [in Pittsburgh]

Thank goodness the press is paying some attention (again) to what’s going on with Lyme disease in the area. Maybe it will help one or two more people think twice before they dismiss unusual symptoms. If only the reporter had also talked about how to prevent tick bites, or mentioned the fact that not all treatments are equal.

Update on Low Dose Naltrexone

I’ve been on Low Dose Naltrexone now for almost two months. During the first month, I felt extremely tired, almost from the day I started it. At the end of the month I reduced the dose to almost half, and the tiredness went away. Not only that, but I was out of relapse (something that had been on its way to happening around the time I started the LDN, in fact I suspect the LDN dosage may have been the reason the relapse didn’t end sooner). I tried going up again by a much smaller amount and immediately felt tired again. So I’m back to my very small dose of LDN. I don’t know if it’s doing something, and my jury will be out until a year or so passes. I do know that the side effects are manageable at this dosage, a very good thing. Additionally, I continue to not get colds, etc, and generally seem to heal very quickly (I sliced my foot open and healed in record time). I will be interested to see what comes of this in the next year.

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.”

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