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The Fifth Package: Renewed Challenges

Monday, August 1, 2016

Last Monday, I finished my fifth 28-day package of CHIM, part of the Alfons Ven remedies program I’m using. I had high hopes when I started the package because I fared reasonably well during the fourth package. Instead, I had a very difficult time. I felt like the CHIM was peeling back another layer of illness for me to grapple with. At times it was confusing, and I wondered if it made sense to keep taking the Ven remedies. At other times, I could see that unexpected things changed and not everything was worse.

As of last night (Sunday night), I started my sixth Ven package. This is going to be the last one for now as I have some other plans for the fall. My current feeling is that to get to the end of these tick-borne illnesses, I would need another year of the Ven remedies. Like so many other attempts to regain my health, this is not a quick fix. It is a way to tilt the long-running battle between my body and the infections in my favor. The movie The Imitation Game comes to mind. If I try to trick the infections, they find a way around my solution (e.g. antibiotics and antimicrobial herbal remedies leading to a store of dormant microbes waiting to reactivate). If I tilt the balance in my favor (e.g. coiling, Ven remedies), I will eventually win, but it may take a long time and involve many casualties on both sides.

The topics on my mind today are: a report of the symptoms over the course of the month, notes about weight gain and Bartonella, and a drastic change in my menstrual cycle.

CHIM Month 5

I started the fifth package of CHIM on June 28th. I took one dose each night for 28 consecutive nights, not waiting more than a day between doses. Each morning, I took 2 doses of FLUOX, one pill per dose, at least two hours apart from each other. I didn’t skip any days because most nights, by the time I was ready for the next CHIM dose, most of my major symptoms were minimal or temporarily gone.

This month was marked by daily kidney pain. Some days it was moderate, some days it was severe. Some days it lasted only 2 hours, some days it lasted upwards of 10 hours, but the trend across the month was increasing kidney pain. As a result of the kidney pain, I stopped taking daily Advil, which I had been doing for quite a while to deal with bursitis in my right heel (and higher doses when I was traveling for overall pain management). I thought the Advil was adding extra work for my liver and kidneys which were clearly overworked from Bartonella herxes. (In the past, when I coiled for Bartonella, that was coincident with kidney pain. More on that below.)

This month was also marked by fatigue, at a level that was much higher than the previous CHIM package. In the first week, I was able to work a little on the computer, go for a walk in the neighborhood, do some light housework, then crash for a nap in the afternoon, needing to rest during the evening. By Day 9, I got more tired. After that, I found it harder to concentrate or motivate myself. I fought with myself to continue personal projects with external deadlines, including the blog I posted on Day 15.  I made myself go outside whenever I had an ounce of energy. But frankly, I felt very stuck because battling the fatigue to try to live today feels just as bad as it did when I was disabled in other ways. In earlier years of this illness, the other disabilities gave me enough of an excuse that I could let myself rest. Eventually this month, I gave in to the fatigue and spent a lot of mornings and evening reading, while attempting to be active (computer work/light housework)  for 3-4 hours in the middle of the day with several 15 minute rest breaks.

There was a new symptom this month, one that I haven’t had since I got Lyme Disease. I had the feeling of electric shocks in my legs and arms, a feeling that would cause strong muscle contractions. These are called myoclonus (translation from Latin: muscle jerks). Most of the time, I could feel tension building in a spot on my thigh (or calf or upper arm or back or neck), then it would get really intense and cause a muscle convulsion (twitch doesn’t describe the severity of the action). The convulsions were painful. The first time was after I took my CHIM dose on Day 10. My legs twitched with increasing pain for 15-20 minutes. But then it stopped and I was able to sleep. This happened again on Days 15 and 22. Over the next few days, I noticed increased constipation and a series of muscle knots in my back and buttocks. Then I had 40 twitches in a row in the half hour after I took my CHIM dose on Day 25.

The next morning, I looked up twitching, found the name myoclonus, and researched possible causes for the symptom as well as treatments. Some causes include neurological diseases, seratonin imbalances, reactions to certain medications, exposure to neurotoxins, all of which relate to the neurological cause of contractions, and magnesium or other metabolic deficiencies, for the muscle half of the equation. There is a medical journal paper on the presence of myoclonus in a patient with Bartonella. That was a key clue for me. The treatments include many anti-convulsant drugs of the types used for epilepsy as well as psychiatric drugs that modulate seratonin. I wasn’t interested in these. But I was interested in magnesium since Bartonella often depletes my body’s magnesium, worsening constipation and causing muscle pain and stiffness, which I happened to notice at the same time.

The next night, when another long series of myoclonus kept me awake, I got up and took 250 mg of magnesium citrate and an Advil, since my muscles were in a lot of pain after all the convulsions. I fell asleep as soon as they kicked in. For the next several days, I took extra magnesium in the morning and that was enough to get rid of the muscle knots. However, I still needed nighttime magnesium to avoid twitches, even though they were milder and there were fewer of them after I finished the CHIM package.

On a side note, I have experienced similar convulsions in the past, whole body convulsions, when I stopped using Effexor, a SNRI anti-depressant, which was prescribed to me in my 20s. Those were at least as painful, but at the time, the internet did not contain the kind of information that would have helped me. And my psychiatrist’s solution was to increase the dose of Effexor, which I wanted to get off because I was no longer depressed by anything other than the side effects of the drug!

Beyond the three most prominent symptoms, I had the other usual symptoms of herxing:

  • Night sweats. I had no night sweats the first 4 nights. Days 5-9, I had night sweats, sometimes more than 1 per night. The next two nights, I woke up overheated but not wet. Then on Day 12, I had a supersoaker, followed by 3 more nights of sweats. Then 4 days of waking up overheated, followed by a light night sweat and 5 days of night heats without sweat. Day 26-28 and the first 3 days of taking a break from CHIM, I had more night sweats. The last two nights I had night heats. I see these as the battle against Babesia (4 days on, 4 days off), followed by a measure of overflow of Bartonella toxins that my kidneys couldn’t process. I can’t be sure, as both infections (and their herxes) cause night sweats, but this is my impression from past experience.
  • Insomnia. One of the good things is that insomnia is happening less frequently. Even when I get up to change into dry pajamas or cool off, I can usually go right back to sleep. I had insomnia on the following days: 1, 6, 7, 10, 16, and 21, when I couldn’t fall asleep then woke up over and over during the night.
  • Joint and muscle pain. Joint pain includes pain, stiffness, and popping in my spine, neck, ribs, and the joints in my arms and legs. It is a classic Lyme symptom, but also happens sometimes with Bartonella herxes. Muscle pain is usually in the shape of a knee high sock or an elbow length glove. It also includes several days of muscle spasms and knots in my back and buttocks. I had joint pain and muscle pain for the first 9 days of the treatment, then a short respite, which coincided with stopping the daily Advil. About 3 days later the pain returned and was worse through the end of the CHIM package.
  • Headaches. I had short (<3 hours), moderate headaches intermittently on approximately 10 days of the 28-day package.
  • Bronchial irritation. I had coughing fits and soreness in my airways for the first 4 days, then it disappeared.
  • Constipation and lower abdominal pain. This typical symptom of a Bartonella herx was a problem only during the second half of the package. Most days, I had close-enough-to-normal bowel movements, which was one of the things that made me notice that the CHIM was having a positive effect.

I had a new symptom part way through the package, but I’m not sure of the exact day. The soles of my feet started to peel. I’m not sure if this is a case of athletes foot or some other phenomenon, but it was notable. I’ve been using diluted essential oils to treat it (lavender at night, a citrus blend or lemongrass in the morning). It stopped spreading until I skipped a few morning doses then spread further along the balls and heels of my feet.

The biggest positive effect of the repeated packages of CHIM is that I had almost no PMS and mild cramping with the start of my menstrual cycle. I stopped taking DIM (which I’ve used for years to regulate my cycle) shortly after I got home from traveling (Day 3 of the package), and suffered no ill effects in not taking it. I was told that CHIM might rebalance my reproductive hormones, making DIM both ineffective and unnecessary. That has finally shown itself to be true.

After the CHIM package was finished, I took 5 days off. I took 2 doses of FLUOX for three days, then 3 doses of FLUOX for 2 days. The main issue was (and continues to be) kidney pain. I had some energy for the first three days, then I fell into pretty severe fatigue again. On days 4 and 5 of the break, I had tingling in my arms and legs as well as rib pain, and I knew it was time to start the next package.

During the last week of CHIM, I tried drinking juiced greens. They helped a little, but not as much as they have in the past. It seems that consuming large quantities of vegetables (such as cooked cabbage or raw salads and whole herbs) works better for me at this point. The fiber tends to absorb more of the toxins that make it into my digestive tract as well as providing chlorophyll to assist in cleansing my blood. In addition, I’ve been drinking kombucha and roasted dandelion root tea to supplement the morning doses of chanca piedra and milk thistle. Even with all of these, it doesn’t seem to be enough to support my detoxification pathways and get rid of the kidney pain.

Bartonella and Weight Gain

I have been treating Bartonella one way or another since 2010. Although I had previously used oral antibiotics that are meant to treat the infection, such as Levaquin, they didn’t have much of an effect. In autumn 2010, I used Rocephin for the first time. It gave me terrible kidney pain (and two kidney stones) but I didn’t know what the pain was from. I assumed it was from the drug.

Months later, I used 832Hz to coil for Bartonella. I didn’t experience kidney pain from treating Bartonella until the first time I coiled my spine. Then from 2011 until February 2016, I coiled for Bartonella on my central nervous system and in the areas where the nerves leave to become my peripheral nervous system. Coiling for Bartonella caused kidney pain proportional to how much I coiled the key areas. Over time, my symptoms shifted and many of the neurological symptoms diminished. Unfortunately, I never got to a point where coiling for Bartonella no longer gave me the particular herx symptom of kidney pain.

At the same time as the Bartonella herxes, I began to gain weight. During the most intense coiling with the most intense herx symptoms (which I’ve written about here), I started gaining weight at a rapid clip. From May 2013 to December 2013, I gained 25 pounds. At the time I attributed the weight gain to Vitex, a supplement I was using to deal with the irregularities of and problems with my menstrual cycle (including PCOS). I believe that Vitex contributed to the speed of the weight gain. However, I think that the Bartonella herxes played a role by poisoning my body faster than I could clear out the toxins.

In the intervening years, I’ve not been able to lose weight. I have several times dipped below 160 lbs, but never for long. This past year, as I have again been more focused in attacking Bartonella, my weight has reached past 175 lbs. The more my kidneys hurt, the faster I gain weight.

To give you a sense of how drastic this is, when I was at my low point, on antibiotics, allergic to lots of foods, and dealing with candida in addition to the tick-borne infections, I barely hit 120 lbs. I’ve gained a lot of weight as I’ve tried to get rid of the Bartonella infection.

To be clear, I’m no longer on a completely grain-free, sugar-free, fruit-free diet. However, despite occasional high carb meals (2-3 per month), I pack on weight very easily. I mostly eat vegetables, protein, fruit, and high quality fats (think avocados and olive oil). I also eat cheese and small quantities of grains 1-3 times per week. This is not a weight gaining diet.

I don’t know the mechanism for the weight gain. I’ve read things that give some possible clues. One theory is that the body creates fat tissue to store toxins that it can’t eliminate right away. Another theory is that the stress of the herxes after the years of chronic infections has damaged my HPA axis (Hypothalmus-Pituitary-Adrenal), causing my body to store fat and feel tire. Another theory is that my thyroid gland is no longer producing sufficient hormones (though when I tested it in 2014, the hormones were well within the normal range, not near the low end). Another theory is that the insulin resistance I developed in my late 20s, after I got infected, and which manifested as PCOS, is made worse by the Bartonella herxes. Or maybe some combination of all of the above and a few other problems that I don’t know about all contribute to my increased body mass.

I my 20s I gained lots of weight when I was on psychiatric drugs. I gained 55 lbs in 10 months. When I had weaned myself off all the drugs, I started spontaneously losing weight, like 5 lbs a month every other month, for quite a while. No change in diet. No increase in exercise. I stabilized at 135 lbs until I started to get sick. Then I rapidly gained a few pounds which I kept on for several months. Finally I became disabled by Lyme, allergic to everything, went on antibiotics and dropped too much weight.

If I’ve learned anything from my history, there are other factors, besides diet and exercise, which influence or even govern my weight. I am hoping that when I stop herxing from Bartonella (maybe by getting rid of the infection or making it dormant), that my weight will return to a more comfortable level.

CHIM and Menstrual Changes

It could be a question of timing. It could be that I’ve recovered enough of my body from the infections that this would happen anyway. It could be that CHIM made these changes. It could be that I’m getting older (now 41 years old). But my menstrual cycle is changing.

Two months ago, I had 2 weeks of miserable PMS. Last month I had only 3 days of mild PMS. In the years since I started coiling, I can tell when I ovulate because I get mild mittelschmerz, where I can feel pain from the fluid that is released when the egg leaves my ovary. Then I can smell the changes in my body (either because the smells change or my sense of smell changes). There are predictable amounts of swelling in my abdomen and breasts. There is a certain amount of discomfort and cognitive reduction that I’ve gotten used to. And I usually have 5 days of PMS symptoms.

Last month, after the previous strange cycle, I had PMS for only a short time. I could still tell when I ovulated, but it was less obvious than before because there was no mittleschmerz. This month, there are no clear signs of PMS or that I ovulated. It could be that I didn’t. (I’ll find out next week if my cycle doesn’t start on time.) Or it could be that I’m joining the many  women I know who don’t suffer from PMS…at least for a month. If it is the latter, I’m very grateful. If it is the former, I’ll just have to live with it.

Disclaimer

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The Fourth Package: Temporary Relief

Tuesday, July 12, 2016

Thank you to all of the people who have written to me over the seven weeks since my last post. Your words encourage me to keep writing about my experience with the Alfons Ven Lyme Package.

I started the fourth package of CHIM on May 25. I was nervous about this package because two of the people I spoke to about Alfons Ven remedies told me that the 4th package was the worst. They had psychiatric and neurological symptoms that were out of proportion to how they felt before they started the Ven remedies. (Both of them had previously used a coil machine to treat Lyme and other chronic tick-borne infections). I had a secondary concern. I started CHIM while I was away from home, providing child care to my nephew and niece for two weeks. I was concerned that I would be unable to care for them.

Since I have not yet relied exclusively on Alfons Ven products, I had several supplements and a pain killer with me. I took my usual supplements: milk thistle, chanca piedra, DIM, magnesium, calcium, vitamin D, and vitamin K. In addition, I took Advil (ibuprofen) every morning to help minimize the inflammation in my left foot that has been plaguing me for months. Two Advil in the morning also helped reduce my overall perception of pain. I wasn’t shy about taking a second dose during the day. I also had with me NAC (n-acetyl cysteine) in case my symptoms got to be debilitating. Beyond CHIM, I was taking 1-2 daily doses of FLUOX.

The First Two Weeks of CHIM

Since I had to travel by air to see my sister’s children, I ended up with hugely swollen ankles. This doesn’t happen every time I travel, but it has happened before. Unfortunately, I had to do quite a bit of walking in the first few days after I arrived, which is right when I started the CHIM package. My feet and ankles were in tremendous pain. I ended up needing foot/ankle support braces because my ankles were giving out on me. I had to keep my feet elevated (my back on the bed, my legs straight up the wall) for 30 minutes to an hour each night for four nights, to get the swelling down by 80%. It was pretty bad. I wore the ankle braces for a full month.

In the first two weeks on CHIM, I had a swollen abdomen, bronchial irritation, and insomnia. The first ten days, I had daily night sweats or waking up at odd hours completely overheated. Many days, my joints were popping and cracking every morning and got stiff by the evening.

The further complication was that I had crazy PMS that started two days before I began the CHIM package. I was warned that CHIM can “override” the DIM I’ve been taking for years. DIM, or diindolylmethane, affects the balance of estrogen-related hormones. I’ve used it successfully to regulate my menstrual cycle and minimize PMS. This time however, I had swollen, tender breasts for 2 weeks! I had mild abdominal cramping on and off during those weeks. I think the insomnia may also have been related to PMS. I suspect that the CHIM was doing something that helped kick out the infections from my endocrine glands or that it was rebooting them. Fortunately, I had a day off from child care when my menstrual cycle started. I stayed in bed until about 1pm, then I was able to go for a walk and do a few things. It could easily have been much worse.

I knitted the legs and claws in the evenings after the kids went to bed. Now my niece has a fiddler crab to play with.

I knitted the legs and claws in the evenings after the kids went to bed. Now my niece has a fiddler crab to play with.

On the positive side, despite my symptoms, I had more energy than usual. I was able to get up with the children in the morning. I took them somewhere to play until lunchtime. I rested or napped when they napped for two hours in the afternoon. Then I kept them occupied until dinnertime with something at home or by taking them out for another adventure. By dinner, I was done for the night. I didn’t have the attention to read, watch, or listen to anything. Instead, I put my feet up (literally) and knitted, my form of relaxation.

All that worked pretty well.

The Last Two Weeks of CHIM

After the time with my sister’s family, I went with my husband on vacation in Ireland. It was fabulous to have down time. I rested some, but I had energy. We took advantage of my energy to go for long walks and even a bicycle ride.

We went to the Cliffs of Moher and walked around.

We walked around the Cliffs of Moher.

My symptoms started to change around Day 12 of the CHIM package. The night sweats stopped for about 10 days. Then after two nights of mild sweats, the night sweats disappeared until after the month was over. Also at night, starting on Day 15 and for the rest of the package, I slept well. No insomnia for two weeks.

The bronchial irritation calmed down for a week, until I started to catch a cold. The abdominal swelling went down from Day 12 to Day 16. For three days, I was bloated for a few hours after I ate, but it went away until the next meal. Then on Day 20, I had loose bowels. That continued for several days. At the same time, butt acne reappeared, which is one of my usual signs of a Bartonella herx. That’s also what I attributed the loose stools to.

The new symptom, one that started on Day 19, was a neurological feeling of being shocked. I would feel a spot get hot and painful on one of my legs or feet. As it became unbearable, my leg would twitch uncontrollably. It happened on all but four nights until the end of the package. On days I wasn’t dealing with twitching and electric shocks, I had tingling, numbness, and a buzzing sensation in my arms and legs. My nervous system was definitely a focal point of the treatment and the die-off symptoms.

I walked a lot despite continued foot pain. I continued to wear foot supports and consume a lot of Advil. Most days, my feet swelled up by evening. Usually the swelling was minimal by the time I got up the next morning.

On Days 22, 23, 26 & 27, I needed a rest. I spent the days either in the car or in my cousins’ house (in Scotland), puttering around and resting. I couldn’t move. I couldn’t go for a walk or engage in activities that required standing. I pushed myself on Days 24 & 25, but I reached my limit. It was on Day 22 that I started the NAC. I felt a cold coming on and I knew that I had pushed my body too far. Even though the cold never fully blossomed, I continued the NAC until the entire trip was over.

At the end of the CHIM, actually on the last day that I took it, I started having pain in the lower half of each leg when I went to bed at night. It was bad enough that it prevented me from sleeping. I started taking Advil at night to give me enough relief to go to sleep.

After the Fourth Package

After my husband went home from our vacation together, I stayed in Scotland for a few days to visit with my extended family, then headed to New York for my aunt’s 100th birthday party. I knew I had reached my limit by the time my husband left, but I had a few last things to do.

The amazing thing was that I still had energy. I still had attention to do things. The twitching in my legs and the pain in my lower legs at night was pretty bad. But during the day, I was mostly okay. My abdomen swelled up every morning and stayed that way for much of the day, but it went away overnight. I slept reasonably well with a painkiller, awakened each night only for a night sweat (and change of shirt). I was able to do a lot of walking, but I could tell that the energy expenditure from walking reduced my cognitive abilities. Fatigue made it difficult for me to participate in conversations. I couldn’t even knit in the evenings because I was so tired.

Over the Hump?

When I came home, I started on the fifth package of CHIM. After the fourth package, I felt assured that I was over the hump—the place in my treatment where Bartonella seems to drain my energy and never budge. Now, two weeks into it, I’ve changed my mind. But that story is for another day.

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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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.

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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.

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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.

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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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