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 :).

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”

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”

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!

my story, symptoms, treatment

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.

Continue reading “Running the Numbers (Apr/May 2009)”

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”