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 :).

my story, thoughts

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”

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”

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!

my story, my-daughter

The energizer bunny

I’m starting to feel like chronic illness just keeps going and going and going …

I know that’s the definition of chronic, but I keep getting my hopes up. I suppose the right thing to focus on is that life goes on too. And for the most part, I do. But this is my space to talk about other things. Like my daughter, who is continuing to complain of daily belly pain even after the constipation treatment. We’re waiting on the results of an x-ray to see if constipation is still the cause, but she’s complaining of headaches now too and I am not hopeful.

While she is obviously a focus of my concern, my own situation is also not so great right now. I’ve experienced a lot of pain, fatigue and brain fog recently, some temperature regulation problems, ear ringing is back, and so is napping and a little dizziness. I am ramping up the yoga again and taking frequent salt baths. I am also trying to get my sleep patterns back under control. My homeopath/MD suspects yeast, and gave me a bunch of supplements and diet change (low carbs/sugar) to help with that, but I’m also going to see the endocrinologist because my appetite has been out of control, which happened the last time I was hyperthyroid. Tomorrow bloodwork, then we’ll see.

Anyway, I’m surprisingly cheerful despite all this, and I’m still hopeful it’s a temporary symptom uptick. As I said: my bigger concerns are with how to help my daughter. But I wanted to give an update nonetheless. No interesting stories or major insights today, just the realities of ongoing chronic illness.

my story, treatment

Fear of falling

Things have been going incredibly well since I stopped my medication in October. However, I’ve always thought of myself as “in remission” and tried to act accordingly (protecting at least some of my healthiest habits). Despite that, the call of a job I love, the needs of my children, and time have slowly eroded these (I am not currently doing yoga, using the sauna daily, sleeping more than an average of 7-8 hours a night). Some symptoms never left (such as ringing in my ears) which I attribute to side effects of the medication.

Things seemed great despite this, but about two months ago I started to notice some changes. Occasional dizziness. One day where I needed to sleep sleep sleep (4 extra daytime hours). Another day where I napped for 3. A day where walking up a flight of stairs left me out of breath for what seemed like 10 minutes. A week where I napped for 20 minutes almost every day. A couple of instances of more extreme dizziness. And then this week hit.

Continue reading “Fear of falling”