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!

June already!

I’ve been meaning to write a post (and answer comments) for a long time now, and life keeps getting in the way. I suppose that’s a good thing — I’m busy because I can be. On the other hand, I’m also busy because I still need more sleep and time to care for myself than I’d like, keeping to the routine in my treatment plan is time consuming.

I think the biggest change is that I am no longer  fighting the wrong thing. I relapsed, and I spent weeks fighting the wrong thing. I wanted to punch something … the lyme disease … but I couldn’t get to it, I couldn’t pick it up and squish it between my fingers and feel it pop and die. I couldn’t burn it and watch it shrivel up. I couldn’t do any of those things. Read the rest of this entry »

Relapse #1 Treatment Plan

Now that I’ve gotten past the denial stage, I am taking action. I figured it’s worth documenting. I spent significant time thinking about my options. I don’t want to become an antibiotic junkie, nor do I want to give up on having a life again. I need to balance short term (getting out of this) against long term (finding a more permanent way to manage things). In the end I am leaning toward the following plan: start this (and future relapses) by trying something new, but then switch to antibiotics if it doesn’t seem to be working. Read the rest of this entry »

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.

Read the rest of this entry »

Doing the joy dance (or: popping pills)

It might seem like a small thing, especially to an adult who does it all the time, but for my son, swallowing pills has not been possible … until yesterday. This might seem like a small thing, but the daily number and volume of bad smelling, bad tasting liquids we’ve had to ask him to consume since December has been extremely challenging for all of us. My son’s stamina and determination have been tested daily. As have my patience and parenting skills.

When my son was able to substitute pills for one of his most distasteful fluids, it was like a weight was lifted over all our shoulders. After he swallowed the last pill for the evening, when we were still cheering, he said to me, “mommy, I feel like I am flying!” I felt like I was flying too. I had promised him a dance of joy and that I would dump the liquid the pills replaced down the drain, and I treated him to song and dance as I poured along with the whole family’s cheers.

Sometimes the small things are so big! And sometimes the big things are so physically small (like a pill)! Read the rest of this entry »

Chelation?

So, as I mentioned, my 6 year old has been diagnosed with heavy metals. In particular, he had a very high amount of lead in his urine on a “provoked urine test”. As a result, I find myself in a similar realm of uncertainty as I did when the Lyme diagnosis arrived — except that I know less about lead and chelation than I do about lyme (now). As with Lyme, there is uncertainty in the testing and the treatment. Here is what I’ve been able to find out so far: Read the rest of this entry »

Helping a 6 year old to buy into his own treatment

One of the more challenging parenting experiences I’ve had in years has been the process of helping my son to accept and support our efforts to treat his Lyme disease. He dislikes medicine (in general) and especially dislikes medicine that has a bad aftertaste (as his Ceftin does). As a result, we have in the past given him a lot of leeway about taking optional medications such as cough medicine, and he has rarely taken anything for more than a few days. But for his treatment to be successful, he currently has to take two doses of antibiotics each morning and one each evening, along with probiotics at lunch time (I can’t give him an evening dose without waking him up, so I’m hoping the lunchtime dose will suffice). Additionally, he has to do this for weeks to months, so he has to do it willingly as I can’t possibly force him or bribe him to do it twice a day for an unknown length of time.

The good news is we got there, he is doing a great job of it. I still have some big hurdles to get past with him (we haven’t even discussed the need for monthly blood work for example, something that causes him to vomit each time we do it and is hugely emotionally trying). But the medicine he takes, in a routine fashion, without fail. Read the rest of this entry »

Off antibiotics!

I can’t believe it’s been over a month since I last wrote in … I certainly haven’t forgotten about this blog or having Lyme disease, but as an academic the beginning of the semester always rolls over me in waves leaving little time to step back and reflect. Fall is especially bad because there are many conferences to travel to (I just returned from a trip) and I always submit to an important conference in my field around mid September (just before my trip this year).

It’s hard to believe how far I’ve come in a year, but as I roll through my second year since diagnosis I often find myself reflecting on where I’ve been. Two years ago I was desperately seeking a diagnosis, unsure what was happening to me, and floundering at work as I attempted to sprint through what felt like molasses. A year ago I had finally come to terms with the prospect of long term antibiotics, only to descend into one of my worst periods ever. I will never forget my attempts to submit to that same conference deadline, which consisted of hours and hours of painful attempts to look sideways at my screen as I edited the most mindless parts of my papers interspersed with occasional moments of clarity in which I would sprint away from anything that could stop me from writing with an over the shoulder request to my husband to take over if kids were involved, and dive in to do as much as possible before the pain and cognitive dysfunction descended again. In contrast, leading up to this September’s deadline, I had only brief mild headaches and not even every day, with no other major cognitive impairments. Read the rest of this entry »

Running the Numbers (June/July, 2009)

I have entered another two month’s worth of numbers into my stats program and analyzed them. I had my best month ever in June, and it is easily visible in the chart included below.  I had many days with only one or two symptoms, and felt much better, than I have since I became ill. The mean number of symptoms per day was 4 in both of these months, as opposed to 8 or more in past months.

Read the rest of this entry »

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