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After the Third Package

Tuesday, May 24, 2016

Things are definitely shifting. I finished the third Alfons Ven CHIM package on May 16 (7 days ago). The last two weeks were easier than the first two weeks of the package, and more importantly, easier than the first two packages. So far I’m pleased with my progress.

Besides reporting on the second half of the CHIM package and the break between packages, I have two things on my mind. One is intestinal health, the other is hormones.

Ven Remedy Report

By the second half of the third CHIM package, I was starting to have energy some days. There were aches and pains, of course, in my joints and lower back, but I could do things. For two days, I had brain fog, fatigue and bronchial inflammation with coughing. After that, I had energy again for at least part of each day for the rest of time. On days when I had morning energy, the energy was all used up by about 5pm. Other days, mornings were difficult, then I had energy from lunchtime until about 8pm. By energy, I mean, I went for a 20-30 minute walk, worked on the computer, did light housework (folding laundry or emptying the dishwasher), or read. I still needed rest breaks during the day, to sit still or lie down for 30 minutes to 2 hours, depending on the day. I needed some naps as well. But all in all, I felt better than at the same time during the previous CHIM packages.

I had night sweats most nights. Some nights I had to change my clothes, some nights I woke up merely damp. I think this is part of the herx for Bartonella. I had loose bowels for much of the two weeks, which also seems like a herxing symptom (Lyme or Bartonella). I had kidney pain, especially after each of the last four doses. That is definitely a symptom of a Bartonella herx.

A few other physical symptoms came back temporarily: severe headaches with light sensitivity, rib pain (Lyme symptom), tingling in my arms, fresh acne on my buttocks, pain in my ear canals, and burning pain in my lower abdomen. Each of these symptoms was short lived, lasting only 1-3 days before resolving.

In contrast to the first two packages of CHIM, after which I had very bad days after doses 27 & 28, this time I felt pretty good at the end of the package. The break has been relatively uneventful. My pain level is down, my ability to concentrate has increased, and I have energy for at least several hours every day. Things aren’t quite normal, especially as I’ve had loose bowels and night sweats for yet another week. I haven’t been able to sleep enough (long time falling asleep at night, waking up too early and not able to go back to sleep). But I feel much better.

The main problem that remains unresolved is my left heel. I’m not sure if there continues to be bursitis and neurological inflammation or if there are additional problems. Besides CHIM, I’ve previously tried using the coil machine on my foot, acupuncture, rolfing, physical therapy (massage, strengthening exercises, and ultrasound). Nothing gave relief that lasted more than three days. This is a problem I’m still working on.

Intestinal Health

A few people have written to me about intestinal health and dysfunction. The trendy, and truly valuable, wisdom that is constantly in the news over the past year is the importance of probiotics. It is important to eat probiotic foods (yogurt, kefir, living sauerkraut, miso, living pickles, kimchi, kombucha, raw milk, etc.). These can be supplemented with probiotic pills and powders, which are essential for people who have taken antibiotics.

For people who are herxing, fiber and other supplements that bind toxins are equally important. The Lyme toxin can cause loose bowels and diarrhea. The toxin can come from the activities of the infection or from a die-off reaction (herx). The goal is to make sure that the toxins don’t get reabsorbed in the large intestines and recycled with bile that is naturally being reabsorbed. High fiber vegetables, such as leafy greens, artichokes, asparagus, green beans (and other pods) and cruciferous vegetables can make a huge difference in binding the toxins in the intestines. Eating a sufficient amount, much more than the recommended daily allowance, e.g., a head of broccoli in one meal, will also bulk up stools and turn diarrhea into loose bowels, helping to prevent dehydration. Other helpful foods including beans, lentils, and high-fiber fruit such as apples, have a similar effect.

When increasing the amount of high fiber foods being consumed, it is helpful to do so slowly over the course of weeks and to consume probiotics that help with digesting vegetables, such as kimchi, sauerkraut, and pickles.

Beyond foods, there are supplements that can help absorb toxins, such as psyllium husks, bentonite clay and diatomaceous earth. The latter two can cause constipation and should be consumed in conjunction with a high fiber diet, or at the same time as psyllium husks.

Constipation is the other extreme for people infected with Bartonella. Bartonella can cause constipation, both from the activity of the infection as well as from die-off reactions. My guess is that it irritates the nerves that control peristalsis, slowing digestion and allowing a lot of water to get reabsorbed in the large intestines. I believe it is a neurological problem because I have frequently had constipation when I simultaneously had other symptoms of vagus nerve irritation during Bartonella herx reactions.

Eating a high fiber diet helps to retain the form, water content, and toxins in the stool, even when digestion has slowed. This helps with daily bowel movements (a must for releasing toxins) even when stools are difficult to pass.

For people recovering from tick-borne infections, not enough emphasis is placed on eating large quantities of fiber, but I highly recommend it. I even follow my own advice.

Hormones

When I started the Afons Ven Lyme Package, I consulted with the author of lyme-symptoms.com about the supplements I take. She warned me that CHIM might override DIM, the supplement I take to keep my reproductive hormones in balance. I decided to keep taking DIM because it also seems to help with blood sugar regulation. If it stopped working, I reasoned, I haven’t lost anything, but if it keeps working, all the better.

I didn’t notice anything during the first two packages of CHIM. But this past month, things have seemed off. I wasn’t sure quite what it was. Maybe the acne on my chin was a clue. Maybe my hair falling out a little more than before (but not as badly as when I was dealing with big Bartonella herxes or when three tick-borne infections had taken over my body). I gained 7 pounds in a month, despite a reasonable diet. That’s when I knew something was amiss. A few days ago, I started getting pms the day after I ovulated (as opposed to a day or two before the start of my next cycle). My breasts are swollen and sore. I’m a little bloated.

I’m still taking DIM. I’m not sure it’s doing anything.

I’ve faced a similar set of symptoms before. Back in 2014, when metformin stopped working, I tried other supplements, including vitex. My breasts were sore and I was bloated two weeks out of each month. I gained a pound a week for six months. I’ve often thought it was the vitex that caused the consistent weight gain. But looking back, I realize that I was coiling a lot for Bartonella during the entire year of 2014. This past month, I also made great strides against Bartonella (a few days of arm tingling followed by severe kidney pain). It could be that the Bartonella die-off messes with my hormones, both insulin regulation and reproductive hormone regulation.

For now, I’m just keeping track that this is happening. I’m none the wiser about what to do except to watch and wait.

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It all comes out in the end

Thursday, May 5, 2016

I’m pretty tired today. This is the story of the third month on the Alfons Ven Lyme Package: Sleep at night. Take morning FLUOX. Nap during the day. Take evening CHIM. Repeat. I’m trying to get through the fatigue and postpone a nap that urgently needs to start to put together an update.

Alfons Ven Update

Since my last post, I’ve continued taking the Alfons Ven remedies. This included a five day break between packages of CHIM and the first two weeks of CHIM doses in the third package.

For the break between packages, I took 3 FLUOX per day. I also used a zeolite, ORËÁ, that helps to bind toxins and get them out. I took 10 drops per day in water, at night, away from the FLUOX. I continued my usual detox supplements: chanca piedra and milk thistle.

I went for an acupuncture session the second day of the break, in which the practitioner used Gua Sha, or scraping, to remove stagnation in my back. It was pretty intense (and my back had streaks of reddish purple for a few days). I was exhausted the rest of the day, but the following day, I started to get my energy back.

Towards the end of the second package, I had severe headaches for a few hours each day. This continued until the acupuncture treatment. After that, I had milder headaches, which came and went for a few days.

Otherwise, an amazing thing happened during the break: I started to feel normal again. I had a sense of possibility that this treatment would get me to the end of being tormented and limited by the tick-borne infections.

Then I started the third package (1 dose of CHIM each night, 2 doses of FLUOX each morning). It’s been more variable since then. I’ve had stomach problems, including pain, reflux, and lack of appetite. I’ve had intestinal problems, including more than 10 days of loose bowels. At the beginning of the package, I had some typical Lyme symptoms, including joint pain with popping noises, and rib pain. I had several days of insomnia, followed more recently by needing to nap for 2 hours every day. The night sweats tapered off during the first week, but returned the second week, increasing in magnitude and sometimes happening twice in one night. The last few days (tonight’s dose is #17) my kidneys are bothering me, and I have some inflammation in my bronchial tubes causing me to cough.

What has been really difficult is the lack of energy. This package seems to be doing something that just drains my energy and I can’t get it back, no matter how much I sleep. I’ve been lethargic. I’ve had brain fog some days. I feel unmotivated, yet unsettled by the things I’d be doing if I had energy. Sometimes I can push through and sometimes I can’t. The fatigue is disheartening. This is the part of the chronic infections that I have found most disabling.

On the bright side, I think that the fatigue and many of the other symptoms seem more like a reaction to bacterial die-off, rather than directly from the infections. I’ve had less pain, or at least in fewer body parts and for shorter duration, than I’ve had since I first got sick. I’ve had no strange neurological sensations for the past few weeks: no tingling, no numbness, no twitching, no nerve pain.

I feel like the remedies are working, though the treatment is slow going and not without the usual effects of attacking Lyme, Bartonella, Babesia, and the viral infections I picked up earlier in my life, like HHV-6 and Epstein Barr virus. I don’t feel well, but I’m not getting worse.

On the positive side, I’ve had a few good half-days. (That’s when I’m okay in the morning and don’t crash until around 3pm.) One of those day, I went out with friends and visited the wildlife in a boat on Elkhorn Slough. I posted some photos here.

Two Caspian Terns napping in a place with few daytime predators.

Two Caspian Terns napping in a place with few daytime predators.

Disclaimer

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After the second package

Friday, April 15, 2016

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

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Overcommitted

Thursday, March 31, 2016

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.

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.

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

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Slippery Hope

Friday, February 19, 2016

I’m about a week into using the Alfons Ven protocol. It has been a roller coaster in so many ways. Some days, I’m more symptomatic than I’ve been in months, days that feel like the worst of the autumn relapse. Other days, I wake up ready to get out of bed and do lots of things. It feels like I’m cycling through each of the symptoms I’ve ever had, in short, intense bursts, then moving on to the next symptom.

Tuesday was great. I went to Santa Cruz. I did a few errands. I met up with a friend for lunch. I worked on my writing class at the library. Wednesday, I started the day with a two-hour, ugly headache. I was sleepy and needed to rest and nap in the afternoon. In between, I was moody and worried, so I thought I might as well start my taxes. By the evening, my headache was back, though not as bad, and my abdomen was distended, stretched out and sore. Thursday, I spent the whole day in a daze. I felt like I never woke up because the brain fog was so bad. I found myself sitting on the couch listening to the radio, not knowing what the story was about. The fog didn’t lift until 9pm, giving me an hour to be awake before I got ready for bed.

Today, I feel less foggy, but my vision is off and I’ve been nauseated since I got up. I’m also having the kind of psychological herx that makes me think everything is hopeless. I’m fighting the feeling this time.

Hope and other slippery feelings

When I started using the coil machine, I was incredibly hopeful. Antibiotics and anti-malarials had gotten me past the worst part of the trifecta of tick-borne infections: Lyme, Bartonella, and Babesia. I was walking around without a cane. I had days when I wasn’t too tired and too foggy to do anything. But I was still a mess, in a lot of pain, and wondering if these drugs were going to help me get any better. I had “plateaued,” though I was still very low functioning.

Enter the coil machine. I spoke to someone who was having real success with it. Her life had changed dramatically by using a coil machine. When I was ready to give it a try, I did. My life has changed dramatically, no question about it. My daily level of functioning has fluctuated, with some really good weeks and months, some months of relapses and difficult herxes, and some in between times, when I was symptomatic but able to have several good hours most days.

I wouldn’t exactly say I’ve lost hope that the coil machine could get me back to a level where I could hold down a job. But there are some pieces I haven’t been able to figure out. I’ve worked on Bartonella for four of the five years I’ve had the machine, and I still haven’t had a remission. As I got further with Bartonella, the other infections would become active, over and over again. Then I’ve had a suspicion that I have some other infection or parasite that I’m not coiling for because I don’t know what it is. I assumed that when I got to a remission of Bartonella, I would move on to the next culprit. Yet, I have no plan to figure out what it is that I would need to eradicate.

The coil machine has gotten me very far, and it might have gotten me further still, but I was no longer convinced that it would get me to the end.

After I spoke to other people who have used the Alfons Ven remedies, I started to feel hopeful again. Beyond hopeful, I was eager to try them and was fantasizing about finally being free of these infections. I daydreamed about getting up in the morning and not immediately noticing something on my body that hurt to the point of distraction. I imagined not spending the morning writing and exercising instead of slogging through the fatigue that makes me want to get back in bed as I fight to stay upright and focus on something despite brain fog. I imagined having the energy to bike to the post office or the library. I imagined doing volunteer work for a bit until I could find a job, or better yet, finish editing my novel and work on getting published. It was fun to live with hope for the ten days between when I ordered the remedies and when they arrived.

As soon as I started taking the first remedy, FLUOX, I started to feel less symptomatic and more alive. The feelings of hope went into overdrive. I imagined contacting every person I know of who has a tick-borne illness and telling them to try the Alfons Ven remedies. I imagined contacting my former doctors and other health care practitioners and telling them to about it. I imagined that the other remedies that are available on the Alfons Ven websites would help my parents with the chronic problems of old age. I imagined getting the pet remedy for my cats who have a case of worms that won’t go away with the standard deworming drugs. I couldn’t stop thinking of how great it would be if this stuff worked.

When I added in the second remedy, CHIM, I came back to earth. I think I’m herxing from the way the symptoms cycle through. Having the opportunity to feel bad again reminds me that there is no quick fix to these infections. I’ve put my hope on hold for all the other people. Let me get through this first.

As hope slips away in the ugliness of brainfog, fear begins to take hold. The fear is not that I’ll waste six months on a treatment that doesn’t leave me any better than when I started. Somehow, I’ve made peace with the fact that this might help without actually getting me to the finish line. The real fear is that it will do nothing. Nothing is much worse than merely not working the way I hope it will. Nothing would mean giving the infections a free pass to proliferate and retrench for six months while I’m treating with sugar pills and energy medicine. That’s scary. That’s where the fear lands.

I’ve only signed on for two months, so far. And even in this first week of CHIM, I’ve been having a variety of shifting symptoms. The changeability of the symptoms helps to keep hope from completely slipping from my grasp. When I do little to nothing to treat the infections, the symptoms linger and slowly increase. Very little changes rapidly without some external stress to the infections. I haven’t given up, not yet, but I’m being honest about how I feel as I try something new and strange.

The Rest of the Treatments

When I started the Afons Ven remedies, I had a list of other pills and potions I planned to take. I’ve scaled back. For now, I’m not coiling at all, not even the few minutes on my pancreas. I decided that it was both too soon to work on it, if uric acid is the problem, and too complicated. I couldn’t start all the supplements and detoxing agents, not all at once, but I’ve been figuring out how to add them in, one at a time, without driving myself crazy.

The first thing to do was determine if uric acid is a measurable problem in my system. So I got a uric acid test (a simple blood draw), and I expect the results next week. Second, I started on the supplement to reduce uric acid, just in case, while I wait for the results. Third, though actually first chronologically, I started taking chanca piedra drops in warm water before breakfast (generally at least 30 minutes). This has helped my kidneys calm down.

Fourth, I started taking Aviva, which comes with the Alfons Ven remedies, 20 drops in water, twice a day. It is supposed to help with the type of detoxing one needs to do with the FLUOX and CHIM remedies. It tastes like reishi, which isn’t one of the ingredients.

The last thing on the list is to take a zeolite supplement to help the detox process. I haven’t quite worked it in, but I find it is on my mind today.

Beyond the remedies, I’ve been doing yoga some days. I’ve been doing my best to eat well, lots of fruit, vegetables and protein. I’m drinking more water than I had been for a while. I’m taking time to rest each afternoon, even if I don’t nap. It helps to respect that my body has a lot going on inside.

Ring necked dove

One of a pair of ring necked doves I saw when walking around the block.

I’m forcing myself to go for a walk whenever I’m not sleepy. In fact, I’m going for a walk right after I finish this post. Walking is good for a million reasons, which is why I persist despite my foot troubles. Sometimes I see something beautiful. There are buds on the trees, even flowers on some of them in my neighborhood. Earlier this week, I saw a pair of doves on my block. Hope or no hope, it is a pleasure to be alive.

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Pills and Potions

Sunday, February 14, 2016

The thing I loved most about coiling was that it got rid of most of the pills and potions I had to take to deal with being sick. Now that I’m on the Alfons Ven program, I’m back to timing what to take when and it drives me nuts.

In addition to the Alfons Ven Lyme Package, which involves three morning doses of FLUOX spaced 2 hours apart, a night dose of CHIM, and three doses of Aviva (a liquid dissolved in water), I consulted someone about my kidney pain.

Her hypothesis is that it is a build up of uric acid from reduced pancreatic enzymes. This has led to a whole other set of treatments. First, I’m coiling my pancreas at 465.6Hz to help fix the enzyme problem. Then I’m taking a supplement, Organika Goütrin, to reduce the uric acid build up. I’ll soon be switching to liquid chanca piedra extract to break up the uric acid crystals that cause my kidney pain, which I have to take on an empty stomach. Meanwhile, I’m looking at another detoxification support, a zeolite in solution, to reduce the buildup of excess elements that come from an overtaxed kidney. That will also have to be on an empty stomach. So these comprise a whole other set of pills and potions, beyond the supplements I take for my bones and detoxing my kidneys each morning.

At some point, the Alfons Ven products may have me herxing a lot, like I used to when I first started coiling. At that point, I’ll move on to other detox support, like castor oil packs. I heard about a detox frequency that I may also try, now that I’m not already coiling for 3 hours a day.

It all feels very slippery to me. Part of me resists all these different treatments for different problems. I like to have a unified theory that I can work with. What got me to try the extra supplements, however, is that I haven’t been able to get rid of the kidney pain for years, ever since I started coiling aggressively for Bartonella. If the problem isn’t actually the kidneys but the pancreas, I’m happy to try to fix it. If the problem is that Bartonella herxes cause uric acid build up, I’ll do whatever I can to remove the uric acid.

The way I’m able to juggle all this is that I’ve decided to do it for a finite period of time. If  this treatment required years, like antibiotics and coiling did, I wouldn’t even consider it. For now, I’m looking at six months. Then I’m done and moving on to something else.

Ven Lyme Package

I started the Lyme Package on Wednesday. I’m using the instructions from Lyme-Symptoms.com. The first day I took one FLUOX in the morning. The second day, I took two FLUOX, one at a time, spaced 2 hours apart. The third day, I took three FLUOX the same way. Yesterday I took three FLUOX again, and I took my first dose of CHIM.

On just the FLUOX, I felt a little better, a little clearer, a little more energetic. The only thing is that I’ve needed a two hour nap each day. I get so sleepy that I have no choice. I can’t tell if it’s because I spend less time lying down, which I used to do for three hours a day when I was coiling, or if this is part of the progress of the treatment.

I’m still symptomatic, with joint popping, kidney pain, altered vision, mild headaches, crunching and stiffness in my shoulder, bursitis in my left heel, urgent bowel movements and so on. But the symptoms don’t feel quite so bad.

I have nothing to compare this to. I don’t know what it’s like to take nothing for the tick-borne infections. In the past I’ve either been coiling or taking lots of antioxidants (or before that I was on antibiotics or herbs). I’m happy with the extra energy, even with its dips and plateaus. I have no way to tell if the remedies are “working” because I’m somewhat symptomatic: is it the infections or is it part of a die off?

After I took the first dose of CHIM last night, I got a sharp headaches that lasted about 20 minutes. Overnight I had a big night sweat on my head and neck (but not my back or chest). Maybe that was my reaction the die off. This morning, for the first time since October, my feet didn’t hurt when I got up. It was amazing. My left heel didn’t start to hurt until I’d been walking around the house for a half hour.

Today I woke up feeling clear and able to get up right away. That’s been happening for a few days, and frankly, it’s a refreshing change. I can deal with the headaches I’ve had today, the kidney pain and back pain. It’s nice to try something new.

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Flux and FLUOX

Wednesday, February 10, 2016

I’ve been feeling very urgent since the weekend. I’m so tired of coiling. I just wanted to stop. I forced myself to continue until today, when the Alfons Ven Lyme Package arrived.

Technically, this blog is going to switch to reporting on the Alfons Ven remedies for Lyme, but it turns out, I may need to do a little more coiling on the side to help with the detox process. I’ll get to that shortly. First a quick report on the regular coiling I’ve been doing.

Bartonella and the Flare Problem

For about two weeks, I’ve been coiling three times a day for Bartonella. The main coiling protocol was 8 minutes on my spine in three places (to cover the whole thing), the back of my head, and each shoulder knob, twice a day. Then the third coiling session, I coiled the rest of my head, 8 minutes each on each side and the top, plus five minutes on my left heel (which has been the source of a lot of pain and restricted walking).

I had some herxing signs, kidney pain, acne on my butt, urinary hesitation, tension headaches, and tingling in my arms. So I guess there was a good reason to add in the rest of my head to the treatment.

Still, I felt like something else was off.

The January Lyme flare is not receding, even with coiling every three days since it started around January 23. It gets so frustrating. Even though the symptoms are relatively mild, mostly in my joints, with periods of brain fog, I feel like I just can’t get to the end.

Then I started having the early symptoms of a Babesia flare (something which has repeatedly happened when Lyme stays active for too long despite coiling). These symptoms included: headaches with eye pain, tiredness with the need to lie down, night sweats, and insomnia of the type that I can’t fall asleep at bedtime.

I feel like I’m back at stage one, even though this is not nearly as bad as it’s been in the past. The problem is merely that it is recurring, again and again and again.

Thus, I couldn’t wait for the new treatment to come in because I want to try something that will get me to the endpoint.

The Coil Machine Problem

My coil machine is ready to die. Or more specifically, the amplifier is on the fritz. I’m hoping to eke out a few more months of coiling for 5-10 minutes a day, purely for detoxing (which I’ve never done before), until I get to the end of the Alfons Ven remedies.

That leaves me with a bigger question: what if the amplifier dies? My hope is that it won’t. Otherwise, I’ll have to get it fixed just to use it for a few months. If this new protocol doesn’t work out, or I want to sell the machine, I’ll have to get it fixed anyway.

Flux

I desperately want some magic. I want a guarantee that this next treatment will work, that I’ll finally be well. I’m tired of getting incrementally better.

Costume dress-up

If only I could cast a healing spell on myself. Here I’m dressed as Auror Nymphadora Tonks, from Harry Potter, at a local bookstore event.

I can tell how much I’ve felt like I’m in transition. The urgency to get started on something new has been driving me to distraction since I ordered the remedy. I started an online writing class this week, giving me something else to work on, with deadlines, no less. I want to be out and about, walking and doing yoga and moving all the little stuck things that happen when I’ve been sick or away for an extended time. I’m ready for something new!

FLUOX

I took my first pill this morning. Although the Alfons Ven instructions for their Lyme Package say to start with CHIM, I’m following the instructions at a different website that the Alfonse Ven company suggests. I started with one dose of FLUOX, which is a detoxifying agent.

Nothing happened for about two hours. Then I got a headache and pain in the tops of my forearms. Then I desperately needed a nap. I slept peacefully for two hours. Since I woke up, I’ve felt mentally energetic and physically okay until about 9pm. Then I started to get a moderate headache, kidney pain and some pain in my ribs.

If all goes well, I’ll take two doses of FLUOX tomorrow. If I can handle that, then I’ll proceed to the next step. If not, then I’ll take FLUOX for a while until I’m ready to start the other remedy, CHIM, which helps to eradicate the infections.

I can’t really tell if anything is going on from the FLUOX or if I’m just having symptoms of the infections. I’m going slowly, just in case. It helps that I’m not as afraid as I used to be when I’m not doing a strong treatment and the symptoms are creeping up.

It’s a strange new world, post coiling. I have a lot more time on my hands.

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