activism, diagnosis, thoughts

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 :).

symptoms, thoughts

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 :).  Continue reading “Relapse #n”

my story, symptoms, thoughts

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).

Continue reading “Repeat Relapses”

diagnosis, my story, symptoms, treatment

Quick Update

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.

diagnosis, infection, my story, treatment

It had to happen one day…

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:

1) I went to the website of a reputable lyme organization (lymedisease.org) and looked up how to remove a tick  

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” [1]. 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.

[1] 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

symptoms, thoughts

Feeling better and a few firsts

First some news — I am happy to say that I am no longer suffering from constant headaches, have less dizziness, am not totally soaked when I wake up (though still sweaty) and generally seem to be improving. I still tend to need either an early bed time or a nap or both and have regular swollen and/or painful lymph nodes, but I am less dizzy, less out of breath, and generally happier with how I’m feeling. The improvement started as slowly as the original downturn, and definitely before I changed anything in particular. However it may have spread up as I began taking large amounts of vitamin D and starting the new energy-device. I can’t say for sure, and would not want to draw conclusions at this point. I probably won’t want to draw any real conclusions until I see either a total lack of symptoms (almost never happens) or I go for a year without a relapse. For now I’m just grateful for what I’ve got.

As for the firsts, I have in the last week for the first time had a doctor tell me he thinks I probably never had lyme disease in the first place, and had an acquaintance ask why I didn’t use make-up to cover up the fact that I look tired. Both of these, I am sure, are not uncommon experiences for others in the community. Neither threw me — I’ve been dealing with this long enough that I have fairly stable opinions about what’s going on and how I want to deal with it. However, they were a reminder of the ongoing mismatch between the expectations and views of the average outsider/doctor and who/what I am. I won’t even both to discuss why I think the doctor was wrong, I’ve spent plenty of time already on that in this blog.

But the use of make-up — that deserves a response, at least here if not in person. I know there are many opinions on this, and I have acquaintances with chronic illness who work very hard to make it as invisible as possible. I do not mean to criticize those choices in what I write. But for me, personally, make-up is not a solution. I don’t use it normally, and putting it on just to hide how I’m feeling seems counter-productive. My illness is invisible enough already. I appreciate the fact that people who care enough to look can see that I’m not well when I’m not. It makes it easier when I need to ask for help, or simply contribute less to an event, conversation, etc.  Additionally, while having Lyme disease does not define me, it is part of who I am. I am many things, and I don’t hide any of them. I  don’t see a reason to single this one out.

doctors-conversations, my story, symptoms, treatment

Back :(.

Although on sabbatical, I’m going to check in with a brief series of posts this month and next. I am in the midst of a relapse (severe night sweats since early january, more recently fatigue, out of breath, headaches and dizziness). After more than two weeks of symptoms that are getting in the way of daily life, the usual fears that this will stay came back and I decided to seek out a doctor (not sure exactly why, as at least the western model usual responds with a lack of solutions, even those doctors who believe that I am sick and, in principal, treatable).

The process went approximately like it does in the US. “Normal” doctors suggested specialties such as rheumatology. A relative has a friend with the long term version of lyme disease. And lo and behold, there is a doctor who specializes in tick-born diseases in Zürich. Another acquaintance has a son who was very sick, normal  treatment failed, and he found a doctor a full city away who practices “bio-medicine”. Of course the doctor’s schedule is full and he wasn’t taking new patients. But the son is apparently totally better now. Sounds tempting, if anecdotal …

In the end, I made an appointment with the tick specialist (reminiscent of an LLMD in how he reacted to me, but commented that antibiotics only work long term because of their anti-inflammatory properties, and interestingly had no experience with co-infections like Babesia, which are apparently quite rare here. A disappointment as the night sweats were making me think that perhaps that was the source of my relapse rather than the Borreliosis, as they call Lyme here). Still, he did a complete work up (blood, heart, even x-ray which I was a little concerned about). I am to go back in two weeks for the results, and partly went through with it all, after the comment about the antibiotics, out of rampant curiosity about the local patient experience.

In the meantime, I received an email from the bio-doc, who has found a way to fit me in, and on Monday no less. I’m intellectually curious about what will come of that, and perhaps because I am in a new country, wierdly hopeful given that I know almost nothing about his approach besides the anecdote of one child’s success… I made a cursory effort to research what I thought it might be (related to the Bionic 880) only to find skepticism in the blogosphere, and evidence that the company that makes the Bionic 880 is no longer partnered with the Dr. most have seen (one wonders why). Again wierdly, still feeling hopeful.

So off I go on Monday across Switzerland to see what happens. It’s been a couple of years since I’ve tried something new, and I’m pretty clear now that relapses are going to continue happening given that I’m on at least my third (significant) one since 10/10. Maybe this will change things. My gut says go for it. Wish me luck!