activism

Urgent need for donations

This was not my children’s lyme doc, but he is one of only a small number (2 or 3 that I know of) on the east coast who sees kids under 12, and a hero to many families with Lyme. Please help support him if you’re able. You can donate here. Even a small amount would make a difference, but he especially needs it by the end of the month:

Children’s Lyme disease network has a site to make online donations: http://www.indiegogo.com/JonesAppeal Continue reading “Urgent need for donations”

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”

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!

thoughts

Biology or Behavior?

I am reading an ethnography [1] right now written by a woman who was misdiagnosed with fibromalgia. She discusses the way in which her doctors’ view of her and her symptoms defined (and destroyed) 8 months of her life. In the end, she is “saved” by a doctor who argues for the role of culture, gender, and other similar forces in her symptomatology, points out that some of her symptoms may be side effects of a medication she is taking, and that others are likely caused by her other diagnosis, which is an arthritic disease. The author benefits from this redefinition of her diagnosis and regains much of the lost quality of life caused by the fibromalgia diagnosis.

Although I have only read two chapters so far, I have a number of reactions to this ethnography which I think are relevant to the experience of Lyme disease. First, I want to provide further context for my thoughts by discussing the differing import of “behavior” (and culture) and “biology”in the patient/doctor relationship. Continue reading “Biology or Behavior?”

my story, treatment

Fear of falling

Things have been going incredibly well since I stopped my medication in October. However, I’ve always thought of myself as “in remission” and tried to act accordingly (protecting at least some of my healthiest habits). Despite that, the call of a job I love, the needs of my children, and time have slowly eroded these (I am not currently doing yoga, using the sauna daily, sleeping more than an average of 7-8 hours a night). Some symptoms never left (such as ringing in my ears) which I attribute to side effects of the medication.

Things seemed great despite this, but about two months ago I started to notice some changes. Occasional dizziness. One day where I needed to sleep sleep sleep (4 extra daytime hours). Another day where I napped for 3. A day where walking up a flight of stairs left me out of breath for what seemed like 10 minutes. A week where I napped for 20 minutes almost every day. A couple of instances of more extreme dizziness. And then this week hit.

Continue reading “Fear of falling”

kids, my-daughter

So sensitive…

My daughter is four, and she is a puzzle to me. She has always seemed so strong, so robust, so determined, so healthy (unlike my son). Yet she also shared the repeated summer time flu and frequent sickness of my son up through January of 2009, after which her health was excellent. Despite this, to be sure, we got her tested, and her test results were ambiguous, like his. She otherwise seemed fairly healthy, except for frequent complaints of stomach pain that we tended (perhaps too easily) to blame on her clear wish to emulate her brother on all fronts.

As a result, we decided (with input from the doctor) to do a test on her that involved giving her antibiotics and then testing her urine for lyme DNA. This provocative use of antibiotics normally goes on for a week, but the doctor recommended treating her for a month and then revisiting things. This was  because her test results combined with her history were worrisome. Since then she also tested positive for mycoplasma, a co-infection that may be associated with Lyme disease. It was thought that treatment (for a month) was safer than the possibility of Lyme symptoms developing.

At first, treatment went fairly well, with my daughter having a much easier time downing the drugs (at least on the surface) than my son did. However, over the past couple of weeks, she’s had more trouble with it. About 10 days ago, she got the flu and couldn’t hold the drugs down, and after we restarted them, she seemed to get more and more unhappy with them. At the same time, she did not seem to recover her energy, and her belly pain became more and more of an issue. It is so strange to see her actually acting sick, to the point that it sets more than a temporary limit on her activity levels, that my husband and I decided to stop the drugs (without input from the doctor). We speak with him tomorrow and I don’t know what he will feel about our decision, but my gut said that the antibiotics were hurting more than they were helping and I went with it.

What’s particularly unusual about my daughter is that, at a time when my son seems to be coming out of his shell in so many ways, she suddenly seems to have sunk into hers. Normally a robust, outgoing child, right now she desperately needs to be close to us, reacts to even the slightest bump as if she’d drawn blood, and is very fatigued. There are dark circles under her eyes, and tonight she was so tired that she volunteered to go to bed without a book and before her brother, an unheard of event. Even her dreams are plagued by strange worries. Her most recent one shocked me with its darkness — she dreamed that all the creatures on earth (“the people, the animals, and even the gnomies”) were dead. Even more wierdly, it’s as if she’d read my mind — I just finished a book about climate change that sent me to bed with the same worries.

I know about herxing, I know that sometimes you get sick before you get better, but she got better on her own, before we started any treatment, and now she seems worse. It is impossible for me to know what caused anything in her case, and I certainly don’t have any answers except one — with both my children, I have to keep following my gut. I just hope that she recovers quickly, whatever the cause of her symptoms.