Archive for the ‘healing process’ Category

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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.

Disclaimer

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Alfons Ven Lyme Package Redux

Monday, September 12, 2016

After six months using the Alfons Ven Lyme Package, I’ve learned a lot about how it worked on me and what its limits were. The first four months, I saw big improvements. The last two months, I seemed to get worse, as if the formula wasn’t strong enough to combat the infections.

I am aware that some other people who have taken it decided it didn’t work at some point, but kept going an saw improvement again later. I decided not to continue with the Ven remedies for a variety of reasons, some related to the effectiveness, and some related to other plans I have.

The big question I get by email is whether other people should try it. I don’t have a definitive answer. As best as I can tell, it was helpful at first. I think it stimulates and heals the immune system. However, even with a strong immune system, I am unable to overcome the tick-borne illnesses I’ve had for fifteen years. An improved immune system gave me an initial boost against the infections, which, I believe, gave me herxes and reduced symptoms for several months. However, my immune system, no matter how strong, cannot make progress against these infections (as I know from various other immune system boosting supplements I’ve taken in the past) without an external microbicide (such as a coil machine, antibiotics, TCM herbal formulas, etc.). For people who have had a tick-bite more recently and have finished antibiotics, I can say only that CHIM won’t hurt. It might not change your chances of getting a chronic infection, but it might help your body address any other possible issues.

The Basics

The Alfons Ven Lyme Package has two required parts: CHIM and FLUOX. Both of these are generally in the category of homeopathic remedies, but they are not based in classical homeopathy. Alfons Ven developed a different approach to what goes into the pills. There is an additional, non-homeopathic remedy, that I purchased and that the website suggests: AVIVA. I used this intermittently the first month and found that it made no difference for me. I now have several bottles left. I don’t recommend purchasing AVIVA.

CHIM comes as a 28 doses taken in consecutive order, once per day (or less frequently if the die-off symptoms are overwhelming). They are pills made of lactose that dissolve under the tongue or can be swallowed. Whatever is active in them is not chemical. Generally it is recommended to take them at the same time every day, before bed. I support this suggestion, as I had an increase in symptoms, possibly from the die-off, after I took my nightly dose if I didn’t go right to sleep.

FLUOX comes in a 100-dose tube that dispenses one lactose pill at a time. It is taken in the morning, at least 6 hours after CHIM (and 6 hours before the next dose of CHIM). When more than one dose is needed or desired, a second pill can be taken at least 2 hours after the first. No more than three doses should be taken per day. I found that taking three doses a day for more than a few days released stored toxins and made my symptoms worse, rather than clearing them up.

I took FLUOX for about a week before I started CHIM to clear out whatever was already circulating in my body. I took 2 doses of FLUOX most days while I was taking CHIM. When I had heart symptoms, I sometimes went up to 3 doses of FLUOX a day for a few days.

I took six packages of CHIM. In between the last dose of one package and the first dose of the next, I waited 4 to 8 days. During that time, I continued to take FLUOX, 2 to 3 doses per day, to clear out toxins before I began the next series of die-off reactions.

According to the Alfon Ven website, nothing interferes with the remedies. Other medications, other supplements and a normal diet can be taken at the same time. According to the lyme-symptoms.com website (mostly offline at the time I’m writing this post), there are many things to avoid while taking CHIM and FLUOX. Primarily, other chemical agents that kill Lyme (like antibiotics and microbicidal herbs) also tend to put it into a dormant form, making it harder to eradicate. Avoiding such chemicals can allow the CHIM to work more fully. I agree with this idea and avoided other methods for killing infections. Having said that, I see no reason not to take CHIM while on antibiotics to help rebalance the body as long as the herx reactions aren’t too strong.

According to lyme-symptoms.com, using a Rife machine (such as the coil machine I use) will not interfere with CHIM. Rife machines kill the bacteria and other microbes that cause chronic infection without putting them into a dormant form. I did not use the coil machine because I thought the herxes might be overwhelming and because I wanted to see if the Ven remedies worked.

On the other hand, the CHIM gave me strong herx symptoms (kidney pain, diarrhea, heart palpitations, headaches, etc.). I needed assistance for my body to process the toxins. I chose to use herbs and supplements that help clear away toxins but do not have microbicidal properties.

  • Herbs: chanca piedra, milk thistle, dandelion root
  • Supplements: coenzyme Q-10, N-acetylcysteine, magnesium

Expectations

Before I tried the Alfons Ven remedies, I read about them and talked to a few people who have used them or are currently using them. I was simultaneously skeptical and hopeful. One person I corresponded with claimed to be completely cured, as did several testimonials on the Lyme Package website. Since I’ve done several years of antibiotics followed by several years of coiling, I was hoping that the Lyme Package would allow me to cross the finish line. The main problem I was still having before I ordered the remedies came from a Bartonella infection in my central nervous system. I thought, maybe, just maybe, that CHIM would complete the process of either getting rid of the infection or putting it into remission. At first, I guessed that I would need 4 months of the remedy. After consulting with the author of the lyme-symptoms.com website, I thought it would take 5 to 6 months. From the experience of others, I knew that there might be a rough month, but I was assured that the month after the bad one would make things much, much better. I was hopeful.

The skeptical part of me wondered: Are these just sugar pills? Will they do anything at all? The answer was pretty obvious, even after the first dose. I had a strong die-off reaction. So I knew it was doing something. The question then was whether it would be strong enough to get rid of the infections altogether.

Experience

I’ve documented the daily symptoms and experiences of Alfons Ven in the previous seven posts. To give an overview, I had herx reactions from the beginning. They continued throughout the time that I took CHIM. At first, I felt like I was getting better, and that the symptoms seemed mostly like the kind I get with herxes. However, by the time I got to the sixth package of CHIM, I had symptoms that seemed much more like a seasonal flare. Instead of getting better, I felt like I got worse in a short time and that all improvements were erased. It seemed like the seasonal flare, which happens when the infections go into overdrive twice a year, overpowered whatever headway the remedy had made. It was similar to coiling the right frequencies, but not enough: the herx appears but no progress is made.

The interesting aspect of the Ven remedy is that it seemed to treat different infections for a few days to a week at a time over the course of a month. For a while I would have Lyme herx symptoms, such as diarrhea and fatigue. Then I would have Babesia herx symptoms, such as headaches and drenching night sweats. Then I would switch to Bartonella herx symptoms, such as kidney pain and constipation. Then it would switch again, and again, and again. What I couldn’t tell after the first four months, was whether these herx reactions were leading to a whittling away of the infections, or whether the remedy was helping my body play whack-a-mole. By this, I mean that one infection would calm down, but not be reduced past the previous time it was treated. Then when my body was working on the next infection, the first one would get worse again. When I went back to the first, I was herxing, just to get back to where I was the last time I herxed.

It seemed to me that I was going in circles, rather than going forward, when it came to making progress on the infections. Furthermore, as the months went by, I experienced brain fog more often and more intensely.

Separately, however, I think CHIM helped to heal my hormonal and immune systems. My menstrual cycle went through two changes until I stopped needing the supplement that I took for years to keep it regular. My immune system seemed to respond to the external environment more appropriately, until the seasonal Lyme flare (which triggered flares of Babesia and Bartonella).

Comparison to other treatments

There are some benefits to taking the Alfons Ven treatments, compared to many of the other treatments out there.

  1. I didn’t have to know what infections I had for CHIM to work. Unlike a coil machine, which requires identifying the infections I want to treat, picking the appropriate frequencies, and irradiating the parts of the body where they grow, CHIM attacks everything. Antibiotics and many anti-microbial herbs also have effectiveness on some infections and not others or are effective on certain bodily systems (e.g., joints vs nervous system), so many agents need to be taken to cover multiple infections. Traditional Chinese Medicine herbal formulas must also change over time to cover the changes in symptoms as the infections or healing process progress.
  2. CHIM helps heal the body’s repair mechanisms and other systems. A coil machine kills of the infections but leaves the body to do the clean up and self-repair (notwithstanding some frequencies that purportedly assist the process but that I haven’t experienced firsthand). Antibiotics and some anti-microbial herbs can damage the body’s repair mechanisms and cause other damaging side effects to the gut and other systems. Traditional Chinese Medicine formulas tend to help with both the infections and rebalancing the body.
  3. CHIM has no side effects. The quantity of lactose is so small that it doesn’t actually need to be digested to pass through the body (less than 12 grams over 28 days). According to the Alfons Ven website, it is safe for people with lactose intolerance. The coil machine also has no side effects. Other chemically based treatments (antibiotics, anti-microbial herbs, TCM formulas) tend to have additional effects on the body besides the intended ones.
  4. CHIM and FLUOX are portable and easy to consume. The Ven remedies don’t require a change in diet, or a complicated schedule for taking them. The coil machine requires a lot of time on a daily basis and is to large to bring when I travel. Antibiotics do best when used with a low-carbohydrate diet to prevent candida infections. IV antibiotics require time to dispense them. Unlike some TCM and other herbal formulas, Ven remedies don’t taste bad.

Despite these benefits, there was a major drawback: the Ven remedies weren’t strong enough to tackle chronic infections. I can’t overstate the importance of this problem. Compared to coiling for the infections I’ve discussed, I felt that I lost ground, rather than gained ground, while taking CHIM. In many ways, the Ven remedies reminded me of oral antibiotics and some of the herbal combinations I’ve taken before. They work initially, providing a real benefit, but, over time, they lose potency compared to the infections. The only antibiotics that seemed stronger than CHIM in their ability to reduce symptoms and kill the infection longer term were intravenous antibiotics.

There is one additional aspect of the Ven remedies worth noting. CHIM does not suppress the infections. In this way, it is similar to using a coil machine and different from the various chemical methods of fighting chronic tick-borne infections. The advantage is that it doesn’t leave an unquantified reservoir of dormant bacteria that can come roaring back later. The disadvantage is that I stayed symptomatic even during the initial progress against the infections.

Would I use CHIM again?

Or maybe the question is: why did I stop? I stopped because I gave myself a timeline to see how it works. If I could do it all over again, I might have stopped after 4 months (now that I know that was the peak benefit) or I might have continued for the full six months while also using a coil machine.

I can say for sure that I would not take CHIM as my sole treatment for chronic tick-borne infections for any extended time in the future. If however, I needed to be away from the coil machine for a month, I would consider CHIM to be an acceptable short-term alternative, the way I have used Traditional Chinese Medicine formulas in the past two years.

On the other hand, given the benefits of CHIM in helping with other bodily systems, I would consider using it concomitantly with the coil machine, coiling for the infections that CHIM is not addressing at a given time or tackling one infection with the machine and using CHIM to cover the rest of the bases.

Disclaimer

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The Sixth Package & A Seasonal Lyme Flare

Monday, September 5, 2016

I finished my sixth and last package of CHIM, an Alfons Ven remedy. It was a complicated month because I had my seasonal Lyme flare early. I guess I expected it to be less intense than last year after 6 more months of coiling and six months of CHIM. But it was uglier than the past few years. I’ve spent the past week unpacking what happened (and unpacking my coil machine to start using it again).

As usual, I’ll start with an run-down of my symptoms during the treatment. The next topic is supplements, which I spent a lot of time tinkering with during the first two weeks of the package. From there, I’ll go on to explain why I think the seasonal flare was worse, though I can’t explain why it was early. (Climate change? The effects of the Ven remedy on my body? I don’t know. In fact, if you’re experiencing a seasonal Lyme flare now, or started to feel your symptoms get worse in the past 2-3 weeks, please comment below or send me a message telling me the date the flare started.)

The Sixth Package of CHIM

I started the sixth package of CHIM, 1 dose each nigh, along with two morning doses of FLUOX, spaced 2 hours apart, on July 31. That night I had insomnia and lots of twitching (which I wrote about in the previous post). Something about the experience made me realize that in addition to whatever else was going on, I might be inundated with unprocessed toxins from the previous five months. The next day I had a lot of rib pain (Lyme symptom) and kidney pain (Bartonella herx symptom) and I knew something had to change. I started by taking extra detox agents (an extra dose of chanca piedra and some dandelion root tea). It helped with those sympoms, but I still spent a big chunk of the day feeling unable to focus on anything and with a big headache. The next day, I added in N-acetylcysteine (1200mg in the morning). This helped, but not enough. I still had lots of  twitching, pain in my sacrum, muscle spasms, night sweats, insomnia, etc. The next day I doubled my NAC to twice a day, and increased the magnesium dose I was already taking to 1200mg per day. I stayed on this dosage for the rest of the package.

The supplements were helpful. Although I spent the day with aches and pains everywhere, the kidney pain calmed down. I was able to sleep at night and I had no night sweat. The kidney pain came back the next day, and I was able to work a little, but I got very tired very quickly. I was done for the day by 5pm, and just rested until bedtime. I had a light night sweat that night, as well as waking up overheated.

I moved into possible PMS with two days of fatigue, loose bowels, big night sweats, kidney pain, and back pain. Then my menstrual cycle started with mild to moderate cramps, no appetite, a severe headache, and more night sweats. This ended my first week of the CHIM package.

Although I have a note from day 14 of CHIM that says “feels like autumn Lyme flare is starting early,” the week leading up to that statement was very symptomatic. The daily issues included loose bowels, fatigue, slow thinking and difficulty getting started doing anything, twitching, insomnia and night sweats. Each day, I managed to do one thing, maybe a walk or some cooking or an hour on the computer. Mostly I sat, I knitted a bit, and the days marched on.

August 12 (that night I took CHIM dose 13) was a culmination. I woke up with itchy eyes, then I had a few things to do. At 4pm, I lay down for a moment which immediately turned into a three hour nap. When I woke up, my pain level was very, very high. Everything hurt: all muscles, all joints, head, neck, abdomen. I had a hard time going to sleep that night and woke up repeatedly. The next day, everything hurt all over my body, again, only now, my spine was terribly stiff. I had loose bowels and a bad mood.

By August 14, my heart was in on the action. I had palpitations and pain in my chest, climbing up into the left side of my neck and throat. When I listened to my heart (with a stethoscope), my heart was galloping on the second beat and very irregular. I had tingling in my arms when I lay down to rest. Some of the other aches and pains were less, but I still felt out of sorts.

For the next several days, I felt like I was slogging through my daily activities (and inactivities). The chest pain was persistent, though it varied in intensity. My bowels were loose and urgent, multiple times a day (even when I reduced the magnesium dose for a day or two). I had twitching intermittently. I woke up hot at night, sometimes sweaty, sometimes not. And I had very little appetite.

Doesn’t that sound like the perfect time to go camping? My husband, Joe, had arranged for us to go camping for our wedding anniversary. I decided that if I had to feel crappy, I’d rather do it in a beautiful natural environment than moping at home. On the trip, I was tired much of the time. The best part of it was sitting at the campsite, watching osprey and bald eagle pairs fish for trout in a lake.

On the trip, I continued to have loose stools, low appetite, heart pain, kidney pain, back pain, and rib pain. One of the driving days, I had a mild vagal response while in the car, waiting to get to a place where I could use a toilet. (Urgent bowel movements have previously triggered vagal responses, from mild to syncope.) My feet swelled up, and by day 19 of CHIM, I had “plum pit chi,” a feeling like there is something stuck in my throat when there is nothing there. On day 20 of CHIM, I took a nap and was overwhelmed when I woke up by how much pain I was in all over my body, just like had happened a week earlier. (Maybe the moral of the story is no more naps?)

Back home, the situation was the same: heart pain, loose stools, headaches, extreme fatigue, feeling achy all over, night heats or sweats. Now I had a new daily problems, air hunger (or shortness of breath) and tingling, buzzing feelings in my limbs, bronchial irritation, and stiffness in my back and hips. What had at first felt like a Lyme flare had blossomed into a Babesia flare and a Bartonella flare. At least, that’s how it felt. The twitching continued, usually at night, and for a few days, I had yellow mucus coming out of my sinuses.

By the time I got to day 27, Bartonella seemed to be ascending, with pain in my ear canals and a switch to difficult, hard bowel movements, and abdominal swelling. I felt too hot or too cold all the time. After the last dose, I woke up with pain on the right side of my body. It is a dull ache that hasn’t yet gone away (and is noticeably absent from the left side of my body, where the pain has focal points).

The entire month, I had abdominal swelling after almost every meal.

I’ve continued the FLUOX, three times a day for the three days following the end of the CHIM package, and 2 doses a day since then.

Combining Alfons Ven remedies with other supplements

One of the things I hoped was that the Alfons Ven remedies would provide a complete detox action, and that no other supplements would be necessary. This turned out not to be the case. A major issue I have with anything that attacks Bartonella is that I get severe pain in my kidneys. From the first package, I realized that I needed to continue to take herbs that help the kidneys and liver survive big detoxes. For me those include milk thistle, chanca piedra, and dandelion root. For most of the months those were sufficient. At the end of the fifth month, the kidney pain was getting worse again. I felt like the toxins from herxing both Bartonella and Lyme was accumulating faster than my body could flush. I wanted to be careful not to add lots of other supplements willy-nilly, so I went through my old list of what helps and read up on my options.

N-acetylcysteine (NAC) and coenzyme Q-10 were my choices. NAC helps the body produce more glutathione, a master antioxidant that protects the liver. Coenzyme Q-10 is also synthesized by the body. I chose it primarily because it helps with the heart, and I was having heart trouble.

My general understanding of the Alfons Ven remedies is that CHIM’s microbicidal action can be blocked by antibiotics as well as antimicrobial herbs and supplements. Thus, I avoided those kinds of supplements. FLUOX works to help the body move toxins through the detox channels, and at higher doses, to move stored toxins back into the blood stream to be processed and removed. However, it doesn’t make the detox process more efficient or protect the organs from an overload of toxins. Thus, it seemed okay to me to take some supplements in support of detoxing.

Also this month, I ended up increasing the dose of magnesium I was taking. Between the twitching (which I wrote about in the previous post) and the increasing heart pain, I knew my body was blowing through magnesium. Since this mineral doesn’t kill or stress any of the infections, I felt is was safe to take.

Seasonal Lyme Flare

I didn’t realize that the seasonal Lyme flare would be the big test for the Alfons Ven remedies. I had fantasized for five months that I would somehow miss the seasonal flare, and that’s how I would know I was at the end. Alas, that fantasy proved to be no more than wishful thinking.

This seasonal Lyme flare was much worse, MUCH WORSE, than other seasonal flares for the past few years. There are a few reason for the difference:

  1. Usually during a Lyme flare, I stop all treatment except for Lyme coiling. I coil a lot (like 3 hours a day) for Lyme for about 5 days. At the end of the five days, I’m usually down to barely noticeable symptoms. Then I can get back to whatever other infections I was coiling, while putting Lyme back into the rotation every other or every third day. Within a few weeks, the Lyme is usually back in remission or at least at very low levels.
  2. When I don’t get a Lyme flare under control right away, Babesia wakes up. This time, since I wanted to see how the Ven remedies handled the Lyme flare, I didn’t coil for Lyme. The CHIM did not get the Lyme under control. Soon I was dealing with a flare in symptoms from both Lyme and Babesia. (Nothing like light triggered headaches and an extreme desire to be horizontal to make a Lyme flare worse.)
  3. Once both the Lyme and Babesia were awake, Bartonella got worse. The CHIM did not get either of the first two infections to calm down. I was having Bartonella herxes, but I was also having more frequent Bartonella symptoms, including the pain on the right side of my body and tingling in my extremities.

By the time I finished the last package of CHIM, I was no longer impressed with the Ven remedies. At first I figured I hadn’t lost ground, even if they didn’t get me as far as I was hoping they would. Now I’m less certain that I haven’t gotten worse by taking them.

In the future, if I ever consider the Alfons Ven remedies again, I will coil while I’m taking them.

Disclaimer

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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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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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