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:
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 »
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:
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.
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 »
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).
Just a quick update on the tick bite: The tick tested positive for Lyme, so thank goodness I started treatment. Most of my “typical” lyme symptoms did not come back (presumably, those are the ones that were not side effects of the drug). I have had increased tinnitus, got a bad rash on my hands from the combination of drugs and sun, and have to be careful to take the doxy with food not to get nauseous. The back ache that I had right after the tick bite is well and gone. Overall, this has been a breeze. Just over a week more to go and I’ll be done, thank goodness!
In other news my darling dog, who was apparently on the verge of death, seems to have regained some of her appetite and stabilized. No one knows for sure why … but I did insist she get a month of doxy when things looked most bleak. Could it have been another lyme attack? I will never know for sure, but I am glad she’ll (hopefully) still be around when I get back from my sabbatical.
I love being outdoors, and I love being outdoors with my children and teaching them how beautiful and special nature can be. So I knew that a day would probably come eventually when one of us would be bitten by a tick. My daughter has a morning of wood time every friday and we take hikes and walks in the woods fairly frequently. As a result, I am very very careful to do tick checks at the end of any day where there might be a risk.
Since I’ve been feeling much better (and in fact finished the unique treatment I began this spring), I had a hike planned with my family in the swiss mountains. I let my guard down and didn’t insist on socks around pants until I realized we were heading off trail (and found my missing tick spray); we didn’t wear light colors, and I generally relaxed more than usual. I should know better.
Then on the train ride home, we discovered an adult deer tick crawling down my husband’s arm. So when I got home I insisted on doing a very very thorough tick check on each child, and gave them a hot bath to boot (on the theory that if I missed one maybe it would drown :). I also checked my husband and he checked me.
As you’ve probably guessed by now, we found a tick. A nymph tick, attached to my hip. Interestingly, I had experienced some discomfort in the area near the tick during the train ride home (and attributed it to the fact that my back went out last week on that side). After finding the tick, I can’t help wondering if perhaps it was something else (I’ve had no back pain for a week and when I had it it was quite a different sort of pain). In any case, once the tick was discovered I did the following:
2) I followed the instructions carefully, with my husband’s help, and put the tick in a ziplock bag
3) I emailed my doctor, a tick expert, and asked what he knew about the standard of care in this situation. He pointed me at a very interesting paper titled “Accelerated transmission of Lyme disease spirochetes by partially fed vector ticks” . The article shows that a nymph tick attached for as few as 8 hours can transmit Lyme disease spirochetes (to mice) if it was previously attached to an infected host and partially fed.
4) The normal treatment if you catch infection immediately is 3-4 weeks of antibiotics (usually doxy), according to the ILADS guidelines (the standard I choose to use when considering treatment options).
I considered the situation. My tick was was attached for 8 hours or less (I don’t know when I got it, only when my hike started), and was a nymph tick. I don’t know whether it had a previous feeding or not, but I do know that if it did, there’s a significant chance that I could have acquired an infection.
As a result, I decided to treat prophylactically, and simultaneously to get the tick tested for Lyme disease (the test available here only tests for that, but co-infections are apparently less common in Switzerland). If it comes back negative, I can reconsider whether to continue the antibiotics.
This leaves me with one important question: Have I made the right larger choice. Is the risk of Lyme disease, and the concern over getting it, worth being out and about in nature? So far, my answer has been yes. But the outcome of today’s events may affect how I think about all this. I am most thankful, though, that it was myself and not a family member that was bitten. I at least know what needs to be done and am willing and able to do it.
 C. M. Shih & A. Spielman, Accelerated transmission of Lyme disease spirochetes by partially fed vector ticks” J. Clin. Microbiol. November 1993 vol. 31 no. 11 2878-2881