Coiling for Lyme

The night before last, I took the last dose (#28) of my second package of the Alfons Ven CHIM remedy. Yet again, I feel like this treatment is a wild ride. I’ve had a few really good days, several days where my mind was clear but my body hurt, and some bad days.

The question I keep asking myself (and my husband and my acupuncturist) is: am I getting better? The short answer is that it’s hard to tell. Things are definitely moving. I don’t feel as bad as I did after the first package. In fact, my symptoms have shifted around a lot. I have fewer periods of brain fog, more energy, more pain, and loose stools. In comparison, towards the end of the last package, I had lots of brain fog, less energy, less pain, and constipation.

What gives?

I suspect that the brain fog in the first package and the middle of the second package was from a Bartonella die off. Many of my symptoms were consistent with Bartonella herxes. There were other symptoms, including kidney pain, cardiac pain, acne, constipation, extreme fatigue, etc., to go with the brain fog. They haven’t all completely cleared up, but they are not dominant right now. This time around, the symptoms include: spine pain (esp. my sacrum), muscle spasms, headaches, irritated bowels, night sweats, and joint pain. If anything, the symptoms have moved away from the core of my body towards the periphery.

Two Week Update

After my last blog post, I went down to two doses of FLUOX daily. I realized that maybe 3 doses daily was too much, pulling excess toxins out of storage in my tissues and increasing the load my body has to process while herxing. Once I went down to two doses a day, I found that I didn’t crave it anymore. The 2 doses were adequate to get rid of most of my herx symptoms by the following night.

In the past two weeks since my last update, starting with day 16 of the second package, I had several days of bronchial irritation. (Do I call it bronchitis if there was no infection?) I was exhausted and in bed at least a few hours each day for 4 days. During that time, I started getting night sweats. They started out moderate, waking up damp or even wet. Then by day 21, I had to change my clothes every night because I woke up drenched. That lasted for three nights. Also on day 21, I began to have loose, unformed stools. That continued for 7 days. During that time, as long as I slept at night, I had very productive days, going for walks and working on my computer. I had intermittent insomnia. Days 21-23, I had arthritic pain in my hands, most strongly, and in my other joints as well. Around day 24, I started having headaches. They’ve continued every day since then: sometimes the top of my head, sometimes the back, sometimes the right side, other times the left. The pain is associated with tension in my neck and shoulders as well as light sensitivity (with bright light triggering or increasing the pain). I spent day 25 in bed. The night sweats started again on day 26, supersoakers, for three nights. Days 27 & 28, I was up and around, with a headache part of the day and increased pain in my left heel, which had never gone away, though was less of a bother for many days.

The day after dose 28, I had such a bad headache that I couldn’t focus on anything: no reading, no watching tv, no radio, no writing. I tried napping. I tried crocheting. But mostly I sat still or lay down. When I finally convinced myself to go for a walk (might as well because my head was going to hurt either way) my husband came home and gave me a head and neck massage. The muscles were hard like rocks. Between his hands and a dose of advil, the headache reduced itself to a mild annoyance.

Speaking of annoyance, I found myself very easily annoyed for the past 10 days. I wonder if this is the toxins in my brain causing emotional disturbance rather than brain fog. Also since the last dose, I’ve had bronchial inflammation again (2 days so far).

Today I went for acupuncture to help clear away the toxins (or in TCM terms, to release stagnation) that build up during herxes. I felt great afterwards, no pain anywhere…until I left the building. As I was getting out my sunglasses, the sunlight triggered yet another headache. AAARGH! This is a very troubling symptom.

I’m taking a five day break between the end of package 2 of CHIM and the beginning of package 3. During this time, I’m taking 3 doses of FLUOX daily. I’m also drinking a dose of the dissolved zeolite, ORËÁ, to help flush out toxins.

Assessing CHIM

I’m glad I purchased all six months of the Alfons Ven remedy that I plan to take. It would have been difficult to decide, based on my symptoms and how I feel, whether to continue to take it. Having decided in advance, part way through the first package, that the remedy is doing something, I’m glad to have it on hand. In many ways, this feels like an experiment. I don’t know how it will end, but there is an endpoint, after which I will be at another crossroads.

In one way, the Alfons Ven remedy, CHIM, reminds me of antibiotics: I can’t control the intensity or duration of the herx symptoms. It is a confusing picture because I don’t know which of the infections are being targeted, as I did with the coil machine. I just know that something is happening because the die off symptoms are familiar. I guess I’m used to having more control. With this remedy, I have to trust that my body will know what to do next to eradicate the infections.

Reaching out

I had an encouraging conversation with someone who is three months ahead of me in taking the Alfons Ven remedy. Echoing what another person told me, he said that the fourth month was the worst. It seemed like everything in his body and mind was going haywire. Then a few days into the fifth package, he has enough energy that he started going to the gym. His experience makes me more hopeful.

The other thing I’ve learned is that it matters that he and I have been coiling and detoxing for a long time. Another woman I spoke to has more active infection (and has done less treatment, and is more symptomatic) and can’t handle taking the remedy daily. She needs time in between doses to let her body recover from the herxes. Each person who takes this has a different reaction, depending on where they are in their journey.

We’ll see how I’m doing in another two weeks, after I’m part way through the third package.

Disclaimer

It is a common pattern in healing from a long term illness: as soon as you feel a little better, you want to do everything, until you’ve done too much, and you’re flat on your back again. That basically describes my life over the past month and a half, while I’m taking the Alfons Ven remedies.

The first lesson I had to learn is that I need to rest, even if I’m not coiling. Back when I was coiling for three hours a day, it was three hours that I was lying down, reading or writing or resting my eyes. The downtime was built into the day because of my treatments. Since I started taking pills instead, I’ve had to learn to spend part of the day, usually right after breakfast or in the afternoon, resting.

The lesson is hard to accept when I want to do lots of things. I’m taking a fiction writing class, which takes up most of my computer time. I also made a kids book for my niece and my nephew and illustrated it for them. On days when I work, I don’t want to do anything else. I enjoy being able to concentrate, even if I can’t plan in advance which day my brain will be working.

Illustrating a children’s book for my nephew and my niece.

The second lesson is that the infections aren’t gone yet. I’m herxing, which means the usual problems, but they seem to pass in a matter of days rather than weeks. My impression of the Alfons Ven remedies is that they help my body peel back a layer on each illness over the course of the month. Thus the symptoms change every few days: cardiac, joints, headaches, digestive troubles, urinary tract troubles, insomnia, fatigue, brainfog, night sweats. These come and go much faster than before. I think I’ve both detoxed a lot of the residual toxins and reduced the infection load so that new toxin production, from microbial activity as well as die-offs, is much lower.

The third lesson is that I still have to take it easy. I’ve had several days in bed. Even though I’ve had some productive days, I’ve also had several days when I needed to lie down for many hours. I hate those days because they make me feel like I’ll never get to the end of this chronic illness. On the other hand, a good book makes them more tolerable. For the next month or so, I’m going to try to take it easier, try to pare down my list of planned activities, and reprioritize so that cooking food that makes my body work is more important than working on something else.

Shortly after I was diagnosed with Lyme, someone warned me that being sick is easy: you have no choices. You must spend all your time, energy (and money!) on getting better. It’s terrible to be incapacitated and in tremendous pain, but it is easier than the next step. Then he said that getting well is much trickier. There will be a strong desire to do anything other than spend another moment dealing with physical problems. I feel that now. I’ve felt that way in the past while coiling. Sometimes I want desperately to be done with the tick-borne infections and healing my body from the damage they caused. I want desperately to do other things that I’ve been dreaming about these past nine (9!) years. Other days, I’m more patient, but the desires don’t disappear completely.

Alfons Ven Remedy Update

I’ve been able to take CHIM every night and FLUOX every morning, once I started the first pack. I took a 5 day break at the end of the first pack of CHIM, during which I took only FLUOX (3 doses per day). Then I began the next pack of CHIM. I’ve been taking it every night. Tonight I’ll take dose number 15. At the beginning, I tried taking two doses of FLUOX per day, as recommended here. I found that taking 3 doses per day got rid of most symptoms by the following night. This is not recommended at the website I linked to, as it may pull out too many toxins. However, I have not had the problems related to to taking too much FLUOX. Most days, I still take 3 doses, though in the past week, I’ve forgotten the third dose a few times. This hasn’t been much of a problem.

I’ve taken AVIVA a few times, mostly when I feel irritation in my trachea and bronchi or when my sinuses get congested. Otherwise, I don’t take it most days.

One problem I’ve had, one that has been constantly present, though waxes and wanes in intensity, is pain in my left heel, foot, and ankle. This was an area I targeted with physical therapy and acupuncture. The Alfons Ven remedies have not done anything for it.

The first pack started with kidney pain, the kind that comes from a Bartonella herx. I had headaches every day the first week and abdominal bloating some nights. I also had 3 days of brainfog, moodiness and fatigue. By the end of the week I was constipated and nauseated (also Bart herx). As the second week began, my heart was a mess. I had cardiac pain, going up into the left side of my neck/throat. I needed a lot of time reclining. This lasted 4 days. After that, I had peripheral nerve problems (shocks and tingles) for a day. Then the kidney pain and fatigue came back, leaving me resting a lot during the day. My muscles ached, my joints ached. Then after dose 14, I had enough energy to go for a long walk. My foot didn’t hurt while I was walking though I paid for it later in the day. I had two more days with energy during the day, though I was out of commission by six o’clock and had to recline most of the evening. After dose 17, I started having cardiac pain again, this time with air hunger (feeling like I can’t breath enough) and a strong need to lie down. That night I had a strong night sweat (requiring a change in pjs), along with insomnia and strange, vivid dreams. The next few doses led to pain in my sacrum, constipation, strong smelling urine and itchy eyes. I continued to have big night sweats for the rest of the pack, though they got less intense. I had a toxic taste in my mouth for several days, starting after dose 22. At that point, my joints were aching, popping, and inflamed for two days. Then after the next dose, I started having bright (day-glow) urine for a few days, and inflamed bronchial tubes for the rest of the pack. I got cold and couldn’t seem to warm up the last few days of the first pack. After dose 28, my joints went crazy with pain, especially my spine.

I took a five day break from CHIM, while taking 3 daily doses of FLUOX. I had headaches and a feeling of being too hot or too cold all day and all night. I had night sweats, bronchial inflammation and very little appetite.

With the second pack, I mostly had insomnia and intense night sweats for the first six doses. From dose 2 to 6 I had cloudy urine and some incidents of loose bowels. After doses 7 through 9, the night sweats disappeared. In the past 5 days, I’ve had very bright urine again, two days of kidney pain, a lot of exhaustion, and night sweats. My spine has been in a lot of pain, the worst of it in my sacrum. I find I need to rest more than at the beginning of the pack. I’m also dealing with the too hot/too cold problem again.

I started the second pack while I was visiting my family in Virginia. My activity level there, plus the plane trips, contributed to swelling in my feet, with the left one much worse. It is mostly back to normal on the right foot, but the left one is still a problem.

In the past few days, I had the opportunity to talk to two other people using the Ven remedies. One of the conversations reminded me that when the infection load is high, the die-offs are much worse. The conversation gave me perspective that what I’ve done with the coil machine (and concomitant detoxing) has made it much easier to tolerate die-offs from the Ven remedies. The other person had finished his fourth pack. His energy is better and his brainfog has diminished. I look forward to reaching that point.

I think people have very different experiences with the Alfons Ven remedies. There are tons of contributing factors. Besides the infection load, there are the number of infections, the amount of detoxing done–before starting as well as while taking them, and what else the person is doing to support their body.

Other things I’m doing to support my body: acupuncture every 2-3 weeks, detoxing herbs (chanka piedra and milk thistle), high fiber diet, 10 minutes of yoga some mornings, and plenty of sleep.

Resting and reading when I’m too tired to do anything else. My tutor rests at my feet.

I don’t yet have a conclusion about the Alfons Ven remedies. So far, I can say that they do something that leads to the infections dying. I can’t say whether they will get me to the point that the infections are gone or nearly so. I don’t “feel better” or significantly improved since I started them. It’s been too much of a roller coaster to suggest that. Maybe after I finish the next pack or two, I’ll have a clearer picture of where this is going.

Disclaimer