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 :).

links, research, treatment

Strong Evidence of Lyme Persistence in Monkeys

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:

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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

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!

dog

Dog update

After a couple of months of doxycycline (no one balked or questioned it when I went past the initial prescription of one month, and the question about whether to increase the dose hung only on whether my dog could stomach it — how different from how humans are treated), my dog has stabilized. It is a relief to see her feeling and acting like herself again, and we were able to stop the antibiotics entirely a few weeks ago. When we did, her urine test (a measure of kidney disease) even improved slightly. She seems to be stable.

The really frustrating thing about this, though, is what the vet in New York said when I brought her out to visit (we moved her from Pittsburgh to New York because my family and I are going on sabbatical out of the country for the next year). His comment? “We see this all the time in this area.”

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dog

Dog-gone Lyme

Lyme has been, for the most part, less of a factor in my life in recent months. Sure, it’s there, and sometimes worse than others (or is that just the bronchitis I spent a month fighting back from?). But it is something I can push to the side — it’s part of the routine, and it’s not my focus. It requires no meds, and the naps & other symptoms are not getting in the way. Perhaps I just need to push it aside — I hardly realized how many headache’s I’d had at one point, until the day I was pain free and even then the first reminder I had that something was different was all the comments I got from others on how perky I looked. Suddenly I realized that a weight really was off my shoulders for that day.

So I really thought of Lyme as something that I could put behind me, at least for now. In fact, my focus was on the sad signs of my beloved dog’s slow progression through old age towards the end of her life — kidney issues, less energy, and so on. A few weeks ago, this became more acute, with vomiting, diarrhea (even in the house), and a loss of bowel control. She became desperately ill, barely able to move, clearly in pain, and I took her to the vet. Her pancreas was inflamed, her kidneys necrotic, her abdomen seemed swollen, a mass inside, and the diagnosis was abdominal tumor, unlikely that she’d make it through the next month… They called an ultrasound to confirm, and found …

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