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 :).

treatments

Low Dose Naltrexone: A new treatment option?

I am in the process of researching a potential new treatment for my Lyme disease, and this post is a place for me to summarize what I am finding. As I describe elswhere in my blog<link>, I think it is important to consider any treatment plan from multiple perspectives. In this case my research includes the mechanism by which it functions (“process data”), clinical trials (“frequency data”), the impact of side effects (potential risks), and patient experiences
(Lyme patients and also other diseases). I’ll go through each in order. The treatment I’m exploring is Low Dose Naltrexone (note I am linking to the Wikipedia article, which as of this writing is at best incomplete, since it does not include all the trials that have been done). A potentially better source is lowdosenaltrexone.org, which is run by the doctor who discovered this use of the drug and two other doctors. Continue reading “Low Dose Naltrexone: A new treatment option?”

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, 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.

symptoms, thoughts

Pain free moments

It’s funny how sometimes you don’t truly percieve something until it’s gone. That’s how it is with my pain. Last Tuesday or Wednesday my pain finally lifted, and I realized how much pain I’d been in for the past few weeks. Suddenly I was much more understanding of myself-in-pain.

Since then I’ve been pain free for well more than half of each day, and had increasing amounts of energy as well. The first day I couldn’t stop smiling. By the third day it was starting to be routine again to not constantly feel pain radiating from my back and neck.

Let’s hope this is the beginning of the end of my recent endless flare up :).

symptoms, thoughts, treatment

Up and down, up and down

It’s been a while since I made an entry in this blog, though I often think of things I’d like to write about. A big reason for this is that I’ve been trying very hard to return to my working life (somewhat unsuccessfully). As a result I cut out from my day everything that isn’t directly benefiting the kids (computers and the kids just don’t mix) or my job. You might note that no where in that sentence did I refer to the things that benefit me, and that’s probably part of why this attempt was unsuccessful, though my illness of course also contributed. But all of that is a topic for a separate post.

Today I’m here to talk about my symptoms, and my doctors, and the frustration of how badly the two are interacting. At the bottom of this post you’ll see a very nice little diagram showing my symptoms (yellow line) and the other factors that may interact with them. Anything below the 0 line is bad. For example, I started tracking my sleep around 3/11, and you can see that for the first two days, I got *less* sleep than I should have. In contrast, you can probably see that my symptoms were better than normal around 2/12 and 2/26 but worse than normal around 1/15, 2/19 and 3/11. Details on the scales and what I was tracking can be found in the caption below the image.

Now, I made this chart because I’m a scientist and I like data, but because I’m a scientist, I also know that this chart is almost meaningless. Less meaningless than my daily symptom logs (which I’ve almost stopped doing at this point, nothing new seems to come up) but still meaningless. First of all, I don’t have anyone else’s charts to compare with. Second, it’s a lot of data, but way too little to conclude anything. Maybe after a year or so I could reach conclusions, but right now it’s impossible to correlate behavior with results.

So why am I keeping a chart? A couple of reasons.

  • First off, my memory is shot, so it’s hard to report clearly what’s happening without recording the data. At least that way I can be concrete with my doctors.
  • Second, my memory is shot, so I need something like this to prove to myself and others I’m still sick — look, this, today, is not the normal me — remember, I once lived without pain. You might think that I don’t need to do this anymore, but at this point is exactly when it seems to be necessary once again. In the last week, I had two alternative docs tell me that they had nothing more to offer me, that I just had to stop worrying so much and I would start to improve. Not quite as bad as saying I’m just imagining being ill, but not exactly the help I was hoping to get. The only doctors who are still truly checked in and helping at this point are my MD/homeopath (who still seems unsure of how to help me) and my therapist (who is great, but can’t give me a cure).
  • Third, science may not be able to draw conclusions, but sometimes you have to trust your gut. I hope that with the help of this data to supplement my memory, my gut may start to reach some conclusions about what is helpful and what is not. I have to decide whether to do yoga or not, how important sleep is, and so on. Science can’t help me, my doctors can’t help me, my intellect is running out of ideas, so maybe at least I can help my gut guide me.

So I’ll keep the chart, and I’ll keep adding to the chart, and I’ll keep waiting. The increasing numbers of days with energy give me hope. The increasing numbers of days with lots of sleep provide affirmation that I’m doing what I can to help myself. And maybe one day the whole picture will either tell me what I’m doing is working, or show me what to do.
Lyme symptom chart

Chart 1: a history of my symptoms. I track

  1. cold: whether my I had a cold or the flu (since my immune system functioned so badly when I became infected, the hope is that we will see an improvement now that I’ve been treated). Scale is -1 (sick) to 0 (not sick)
  2. symptoms: (scale is -2 (lots of symptoms like pain and fatigue) to 2 (lots of energy plus no symptoms)
  3. period: since it seemed to match up with downturns. Scale is 0 (no) or 1 (yes)
  4. hrs sleep (only tracked since around 3/11). If I get 7.5 hours of sleep (exactly enough when I’m energetic) that maps to 0 on the scale. If I get less than 7.5 hrs, I subtract 1 for each hour less. If I get more than 7.5 hours, I add 1 for each hour more.
  5. Whether I did yoga (only tracked since around 3/11). 0 means I did yoga morning and evening, -.5 means I only did it once, -1 means I didn’t do it at all.
symptoms, thoughts

Fighting to stay positive

Today has been difficult, no sign in sight of an end to the bad week. My back and neck hurt, my nerves feel hyper sensitive there and the only relief is when my husband touches my back. Also, my head has been hurting for hours, and neither a nap nor ibuprofin helped my head or back. In addition, my knees have been feeling arthritic today (a new symptom), my jaw is a little stiff, my ears are ringing and currently I’m nauseous. My abdomen’s still tender. And my mind’s been wandering again, making it difficult to sleep. At the same time, a friend who hadn’t seen me in a few months told my my complexion looks better, my face more filled out, than when she last saw me (pre-antibiotics). Her comments are an echo of what others have told me this week.

I know that hope and positive thinking have a very important role to play in healing.  Yet on days like today it’s very hard to keep my focus on that, or even on the positive comments, the negative looms so large: The fear that I will continue to get worse, that I made a mistake in which doctors I trusted, that I will have to revise my life again to a set of constraints I don’t want.  After hearing from this friend who hasn’t seen me recently, I am starting to believe that there is outward change to match the inward change I was feeling before this week. I’m glad I look better, yet even so I doubt it’s meaning. Is it a sign of healing, that I will get back to my old self, or just that the minimalistic lifestyle I currently subscribe to (little work early, bedtimes) is acceptable to my body?

Maybe I’m just setting my hopes on something too immediate, too specific. I don’t have faith any longer that I can map out my path to recovery. Maybe that’s ok. Instead, I will work toward the following: I will reach a day where I have moved beyond the pain and the worry.  I will reach a day when lyme is part of my history, a story I can tell my children, like RSI.

jen