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.”

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!

Running the Numbers (Apr/May 2009)

I have entered another two month’s worth of numbers into my stats program and analyzed them. Of note is the fact that I was apparently hyperthyroid in Feb/March (and maybe before that) but went into remission in April. I’m gaining back my weight now, which apparently was caused at least partly by that.

I’ve created a new way of visualizing my data. The next image summarizes major symptoms since symptom onset (Fall ’06) through August ’08. Major events (such as the mold bloom) are marked at the bottom.

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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.

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Managing Lyme’s Unpredictability

One of the most frustrating things about this illness is the unpredictable nature of its flare-ups. Even without flare-ups, the illness is unpredictable: one month I am dizzy each time I stand up, almost to the point of blacking out, the next I have to wear sunglasses and a hat indoors if the lights are on. One day I feel like myself, the next I am functioning but fatigued. One hour I have a headache, the next it feels as if the clouds have lifted and the angels are singing and I can concentrate. Anind, I say, take the kids, I’m going to write!

So … the normal ups and downs are manageable by being flexible and agile and having great support at home and work. I apply the same skills that helped me when I had a repetitive strain injury that limited me to 30 minutes a day of typing, the same skills that helped when I had a newborn and was a (relatively) new faculty member: I stay organized, so that I know what is most important and most urgent (not the same thing) at all times. I also have a very good sense of what I can do in what condition. Then I stay on top of all the mundane stuff, and whatever I can do that is important or urgent. This takes planning and organization, especially when my work hours are limited, but it is possible to do. And the advantage is that when the opportunity to really think arrives I am able to use it effectively. If the timing is bad, I rearrange my schedule when possible.

But even the best organizational skills in the world (and mine are pretty good) mean nothing when a true flare up occurs. Not the rapid changes described above, but the sinking suddenness of pain, fatigue, and headache that is inescapable and complete. One time I went within the course of an hour from (literally) doing handsprings on a gorgeous spring day in my child’s school yard to laid out on the couch napping when I was supposed to be watching her. This week (2 weeks into my first attempt to teach again) I had a similar descent. After biking Elena to school and standing around happily for an hour I suddenly found myself unable to hold my head up long enough to iron napkins (a “chore” the adults help with) and had to lay down. By the end of the day my light sensitivity had spiked, I had a headache, hot flashes, back pain, ear pain, extreme fatigue, and a total inability to read or write. A good friend (Scott) observed my descent and offered me a ride home, where I collapsed on the couch and barely left it for 2 days (we’ll see what tomorrow brings). The cause? Possibly wearing an item of clothing with some dust on it, but mostly unknown.

Clearly I have the ability to write now, and in fact I am lucky that even at this nadir my experience of lyme is unpredictable — yesterday and today around 4 or 5 pm the cognitive symptoms lifted and I could concentrate for a little while, enough to take care of a few fires, and of course I was prepared and knew the important ones. Having a job and family I love helps — rather than sinking into the remaining symptoms I’d much rather focus on the things I care about when I can.

I am lucky that the first two weeks of the semester were relatively a good period (though tiring) so I was keeping up, Friday was a planned work at home day and now it’s the weekend. I’ll have to hope that these flare-ups continue to be relatively rare and confine themselves mostly to “convenient” times (i.e. days I am not teaching). Even so, with the CHI deadline coming up on Friday, losing days of work is hardly convenient and will require even more careful use of my time in the coming days.

I remember that when I first began to comprehend what I was facing, around the time I started this blog, I read some other blogs (linked off of this one in fact), and found an essay on this same topic. The author talked about embracing her flare-ups by pampering herself with time, simple enjoyable activities (like a good movie if she was up for it) and compassion. While most of the essay (above) has to do with how to maintain my job in the face of lyme’s unpredictability, her advice is worth following. When work is neither possible nor enjoyable, acceptance, compassion, and a good pampering are a crucial ingredient to something equally important — maintaining my sanity.

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

Feeling better… :)

The signs are starting to add up and I think I’m beginning to improve. I’m still sleeping a lot, but my back pain goes away for hours at a time, I had an entire day without headaches (yesterday) and my strength seems to be better than before. The only thing that’s worse seems likely to be a side effect of the antibiotics: My teeth have turned black and are tender.

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