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”

my story, thoughts, treatment

Just a Cold

I’m miserable this week. And it’s making me happy. I’m coughing up gunk, sneezing, even slightly nauseous, and I’m still on top of the world. Why? Because it’s just a cold. It started on Saturday with a sore throat, and I am already starting to feel better. I can still walk my dog, I am still cooking and cleaning and taking care of my family, I missed only one day of work, and I can treat it with simple supplements, cough drops, and a warm bath or sauna (which I luckily have in the house because I used it to treat my Lyme disease). It is not a relapse which I feared might be coming on (as they have every year until this) at the start of December. I had the classic signs (nightly sweats, increasing fatigue days) but began a new set of supplements and seem to have staved it off. The supplements come straight out of the Burrascano guidelines, and include high quality fish oil, vitamin D, vitamin C, vitamin B, CoQ10, and a few specialty supplements suggested by my Naturopath. While on them (until this week) I didn’t even get a cold as my family cycled through more than one. And the relapse signs faded. So, pill popper I am not (by preference) but I’ll keep taking these!

I remember the days and days of being grateful for feeling well when I first came out of the worst of my Lyme disease (which I re-experience after each relapse), but today I am grateful for feeling lousy! And laughing at the very idea that a cold is a reason to give thanks.

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 ( 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, treatment

High-tech alternative medicine

I spent the day traveling to my new bio-medicine doctor (and napping on the train in both directions). I didn’t really know what to expect — he’s not google-able, and I had very little information from the person who recommended him about how he works or what he does. Just following my gut, and enjoying the opportunity to feel hopeful again. I am coming to the conclusion that conventional Western medicine doesn’t have much more to offer me right now, and at least he wouldn’t be more of the same.

The feeling I had when walking into the office was one of familiarity. The warm comfortable feeling of a practice of alternative medicine — a place that is not sterile. I was an hour early and settled into a chair in the waiting room with my knitting, a book, and a lecture on machine learning. A few minutes late, the doc came knocking and I followed him to his office. He was an older man with a warm smile. None of the slick salesemanship of my last stroll into a new office disturbed me. Rather, he came across as straightforward, caring, ethical, and honest.

Starting yesterday, I’ve been using a cane to get around because of a combination of fatigue and dizziness, but I put it aside indoors, so I was a bit tipsy. I was even more unbalanced when I saw the office — it had more computers than a small computer science laboratory! This was the most high-tech approach to alternative medicine I have yet to experience.

The doc ran tests on a series of machines that measure various forms of electrical currents and resonance. Between the foreign language and the foreign approach to medicine, I did not understand the details of what most of them were doing, but he talked constantly trying to explain what he could to me about the results I was seeing (many of which appeared on the screen as we worked) and what the measurements were. At least three different machines were in use during all of this, and they produced pictures of my body highlighted with areas that were overactive, underactive and so on. He also measured the resonances in different areas and compared them to known resonances for various diseases. In coming up with a diagnosis, he attempted to triangulate (something I appreciate, as described in my post on treatment evaluation), both across machines and across areas of the body.

The upshot of all of this was a diagnosis of Epstein-Barr virus. There was evidence of Babesia as well, confirming that I had had it but not requiring treatment. The doctor’s theory is that the antibiotics helped to control the lyme bacteria, but as they are unable to help with viruses, the possibility that I was also fighting Epstein-Barr may have been overlooked. He believes that this diagnosis is also consistent with my major symptoms (inflammation of the lymph nodes, fatigue, headaches, night sweats, etc.).

The treatment includes vitamins (which he tested to demonstrate effectiveness) as well as a special machine that is programmed to resonate with the virus using electrical currents. The doc would not sell me the vitamins himself because he has seen too many doctors corrupted by the income they get from this (it is a very typical experience to walk out of a naturopath’s office with a slew of supplements).

Regarding the primary treatment (the resonance machine), he started out by saying he understood if I didn’t want to use it as it is quite different from most medicine I had probably experienced. He then proceeded to tell me the general theory about the device (which I have researched before) which is that it somehow interacts with the crystalline form of the virus and causes it to collapse. What amazed me is that he then expressed the same skepticism I had developed myself when researching this possibility, and gave me his own (admittedly unproven) theory about how it might actually work. I don’t mean to speak negatively about therapies that others in the Lyme community have chosen, but for myself, in the past, I came to the conclusion that Rife machines and similar technology were not for me precisely because I couldn’t find strong support for their theoretical grounding (despite finding research published on the topic). So I found my doctor’s skepticism about the mechanism reassuring. At the same time, I am open to using the technology he offered, given his experience with it and belief in its ability to make a difference. Additionally, my research suggests that bioelectric medicine can have an astounding effect on the body (for example in healing surface wounds), that electrical currents can clear micro-organizms from food (also see [1]) and so on. Clearly something amazing is going on here even if its limits and mechanisms are not well understood.

I do not know what will come of all this, but I must say that I still feel both hopeful and in good hands. That this doctor is honest and trustworthy I feel by gut. From the loving way he interacted with his wife/office assistent to the care with which he explained everything and the ethical boundaries he set himself, he left a very good impression on me. His own personal history with lyme disease as well as the patient anecdote I know of both point to the possibility of success. We discussed the need for balancing acceptance against belief in a cure, and his comment was: You don’t have to believe. Just keep yourself open to the possibility. That is exactly what I plan to do.

[1] . Schoenbach et al. (2000) Bacterial Decontamination of  Liquids with Pulsed Electronic Fields, IEEE Transactions on Dielectrics and Electrical Insulation  Vol. 7 N o .  5, October 2000. “Cellular effects of ultrashort pulses, with pulse durations on the order of and less than the charging time constant of the outer membrane have been demonstrated recently on mammalian cells [52]. Some initial results on bacteria [19] indicate that similar effects might be used for bacterial decontamination.Such intracellular effects might …allow us to reduce the energy consumption for bacterial decontamination in (conducting) liquids.”

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!