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Transition Zone

Thursday, October 13, 2016

It’s been over a month since I stopped the Alfons Ven remedies. I had a plan, once I stopped, to see a doctor and go on antibiotics for a while. I had a plan, you see, because I’m as well as I expect to get before my ovaries stop producing eggs. So I’d like to try to get pregnant, but I’d like to do so without infecting my husband or a baby with tick-borne diseases.

There are grim statistics about being pregnant with tick-borne infections. Without antibiotics, the transmission rate is estimated at 50%. With a two-antibiotic combination, the rate goes down to less than 1%. Meanwhile, there are a few studies that suggest that Lyme and the other tick-borne infections can be sexually transmitted. I’d rather be safe than sorry.

Now, back to my plan. The plan was to get as well as possible on the Alfons Ven remedies, in the hopes that I could minimize the amount of antibiotics I needed to take to keep the infections in check. Instead, I had a Lyme flare which the Ven remedies did nothing to reduce, which triggered Babesia and Bartonella flares, so I began my doctor search with more symptoms than I’ve had in the past three years. At the same time, my coil machine broke (specifically the amplifier, which can be fixed by any appropriate audio equipment dealer), meaning that I couldn’t coil to get everything under control. Before it broke, I got to coil for about a week, just enough time to reduce my pain level and the Babesia fatigue–temporarily. Enter traditional chinese medicine. I took a formula to keep me going while I searched for a doctor.

Doctor Search

I started with the recommendations from the local Lyme Disease support group. That didn’t work out quite as well as I hoped. The first doctor (an internist who takes insurance) looked at my history, said I needed iv antibiotics for 3-4 months followed by hyperbaric oxygen, then I could skip antibiotics for the pregnancy. As soon as he finished his pronouncement, he said that he couldn’t treat Lyme patients for a few years because the insurance company of a patient who went into remission on iv antibiotics brought him before the state medical board. Now he cannot prescribe antibiotics for Lyme patients. He can only refer them to other doctors. I was a little relieved because his plan for me didn’t seem quite right.

The doctor he referred me to was also on the list from the Lyme Disease support group. He is an infectious disease doctor who also likes to give iv antibiotics, though never for longer than 28 days. His office was a nightmare. The medical assistant made one sexist comment after another. (Before I left I told him that he was a lawsuit waiting to happen.) The doctor insisted on looking at all my labs from the past ten years…and fell asleep doing so. He nodded off five or six times and I had to keep waking him up. He was less interested in my infections and more interested in my hormone levels, just to make sure I could get pregnant after a diagnosis of PCOS several years back. I’m no longer symptomatic of PCOS, but that didn’t reduce his interest in the topic.

After these two appointments, I contacted the Lyme Global Alliance for a list of ILADS doctors within driving distance of where I live. The downside to these doctors is that they don’t take insurance and are extremely expensive. I called around and talked to the staff while checking on my notes about what the people I’ve met at my support group have said about the various doctors in the South Bay (south of San Francisco). I picked one. She’s knowledgeable, competent, a good listener, and not freaked out that I’ve been using a coil machine. We came up with a diagnosis and treatment plan and have started moving forward.

Restarting with an LLMD

I’ve been able to control my own symptoms and control my own treatment for five and a half years. It’s hard to give up control. It’s hard to go back to antibiotics, tests not covered by insurance, side effects, and other tribulations.

Understandably, the doctor wants to retest me and see what I’ve got growing in my body right now. She wants to take a fresh look, checking for things that no one bothered to look for the first time around. She thinks we missed something. Frankly, I’ve been wondering for two years if I had an undiagnosed infection, one that prevents me from getting to the end of Bartonella with the coil machine. It was comforting that she came to the same conclusion I’ve come to without me bringing it up.

Not so comforting is taking a short course of a combination of antibiotics, just to kick up my immune response, before taking the blood tests. I saw five years of rebuilding my gut flora go down the toilet in less than a week. Oh well. I didn’t end up taking the full course of antibiotics because I discovered that I was allergic to one of them. After a trip to the emergency room and several days on benedryl, I eventually started to notice the Lyme symptoms coming back.

Now the tests are over. But I won’t start the longer term, pregnancy-safe antibiotics until the doctor gets the test results. We may even do a course or two of iv antibiotics to get rid of most of the neurological symptoms (and quiet the active infections) before starting the pregnancy-safe antibiotics. In the meantime, my coil machine is fixed. I got to coil for a week before I go on a trip to visit my family. So I’m back to TCM herbs, with the addition of artemesinin for a Babesia flare.

I’m still pretty symptomatic. This transition plan is not going quite as well as I’d like, but I’m able to get up, most days, and do at least one thing. On good days, I can do more.

In a few weeks, when I’m back home, I’ll go back to coiling and see how many of the symptoms I can clear up before beginning antibiotics.

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