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 :).

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.

symptoms, thoughts

The meaning of strength

The last two days have been trying. Yesterday, a flare up started while I was at work and quickly got so bad that I could not keep my eyes open. Luckily I was already sitting on the comfortable couch of a good friend at the time. I was able to enter that state of waking sleep that my body demands at times like that without qualms. As things slowly improved, I asked for some soup and we propped me up and ate lunch together. When I had to leave for an off campus doctor’s appointment (something I couldn’t cancel) he found a nice piece of wood and drilled a hole in it and presto! I had a walking stick. Another friend gave me a ride to the doctor’s building, and the walking stick helped me get around where the car couldn’t.

Continue reading “The meaning of strength”

symptoms

Flares

My “bad periods” are becoming a regular companion in my experience of Lyme disease. I don’t mean the overarching up and down of my fatigue, headaches, and other symptoms, but the specific moments when I suddenly realize that something is wrong and my body’s demands overwhelm anything else.

At this point they’ve become so common that I’ve named them flares… the experience of each is unique and as a group they are becoming increasingly well defined… so I thought it might be worth documenting what I’m experiencing. Continue reading “Flares”

my story, thoughts

When it rains it pours

It’s been a while since I posted anything on this blog … when things are good I’m just less motivated –there’s so many other things I want to do, and when things are bad, I suddenly don’t have the time. That’s certainly been the pattern in the last month…

Almost immediately after my last update, I started a major downslide (the beginning of it is described in that post). The whole experience was highly hormonal, with wild emotion changes, extreme fatigue, heat, cold, and so on (and, interestingly, coincided with my period). I ended up leaving early to see my doctor just to get away from it all, and spent a lovely weekend with my 1 month old niece in Philly before going to NY. I arrived at the doctor’s office right around the end of it and was given a new antibiotic (Ceftin).

Continue reading “When it rains it pours”

my story, treatment

Update and mold remediation

This is a radical topic change for a moment, but I want to give a quick update to folks about how the past few months have been. The more distance I have from last September/October the more aware I am of just how sick I was in that period. I didn’t write much about how bad I was feeling, but a few details can be found in the posts from that period (e.g.,still not over…” and “Highs and Lows“) and perhaps their topics are most illustrative — I made my first visit to a support group; wrote about how the people around me could best help, and reveled in a few pain-free moments.  Rather than dwell on the details, I’ll just say that that period of my life makes me even more grateful for what I have now. It took only about 2 days from the switch from Minocyclin to Zithromax for my improvement to start, and while I think I have plateaued, I am definitely doing well.

Last week was one of my best since February 2008, with about 5 or 6 good days and 3 days in a row feeling like my healthy self (boy can that get addictive!) except for the early bedtime. Looking back over my very sparse notes from last Spring I’d say I’m doing about as well as I was right after the IV antibiotics ended. On the other hand, I also still have bad weeks, and this one definitely qualifies. Hot flashes (sometimes every few minutes); nausea; naps (twice a day sometimes); that heaviness in the limbs … time to hole up and rest.

Interestingly, my improvement also coincided approximately with the installation of a device to dry out my house a little more than our basement humidifiers could. Continue reading “Update and mold remediation”