Posts Tagged ‘bartonella’

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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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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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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.

Disclaimer

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Flux and FLUOX

Wednesday, February 10, 2016

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

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

Bartonella and the Flare Problem

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

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

Still, I felt like something else was off.

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

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

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

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

The Coil Machine Problem

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

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

Flux

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

Costume dress-up

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

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

FLUOX

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

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

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

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

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

Disclaimer

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Lyme Ideology

Saturday, January 30, 2016

I am in a moment of transition. I promised myself that I would only use the coil machine for five years. It wasn’t a random number. Someone told me that I’d be “better,” as in “free of tick-borne infections” if I coiled for five years. The end of the fifth year is right around the corner.

Five years also seemed like a long time (though I’d been out of work for 4 years and on antibiotics for three of them) when I started out. I thought that I might never get well enough to to be free of daily pain with relentless fatigue, digestive problems and sleep difficulties. Five years was a reasonable number, shorter than forever, as long as things improved along the way.

At the beginning of coiling, I was only committed to three months. If I didn’t see any difference in that time, I was going to sell the machine. Three months came and went, and I was seeing big changes (though not exactly big improvements).

After a year I had my first Babesia remission. I felt like a new woman: still sick and disabled, but no longer an afgan permanently draped on the couch. Next I got the candida out of the places where it shouldn’t grow. That helped reduce other symptoms. Eventually, I had short Lyme remissions. Those were great. Otherwise, I’ve been able to keep the symptoms mostly minimal by coiling 1-2 times a week for Lyme. The symptoms of Bartonella have lessened. The herxes from Bartonella are less intense. But the Bartonella herxes kick up Lyme symptoms, so I’ve been stuck in a slow improvement cycle with no end in sight.

Five years is almost up. I keep coming up with reasons to coil only twice a day, when I know perfectly well that to get to the end of Bartonella I need to do three sessions a day. I feel like it’s the last semester of high school or college. I can’t believe I still have a few more finals and papers to write. I just want to be done already.

I also recognize that Bartonella herxes convince me, time and again, to do something else, to get distracted on another treatment, to coil less. So I’m trying to give myself a new narrative: a long race in which I need to sprint at the end. Coiling three times a day for one more month might make all the difference in the world, or at least, it won’t be worse than it was in previous months and years.

Five years also has a different significance. I knew that if I ever got to the point that tick-borne diseases no longer monopolized my life, I wanted to find a partner and have a child. I fell in love with Joe, who is a most fabulous partner and husband. I can’t imagine my life any other way. And now that I’m 41, there are non-Lyme biological factors pressing against my desire for a child. So I’m going to coil for one more month and move on.

Auto-Immune Mental Gymnastics

Occam’s Razor states that among competing hypotheses, the one with the fewest assumptions should be selected. This idea came to mind when I went to see a naturopath that I’d previously worked with to talk about what I can do to ensure that if I get pregnant, the child will be healthy, specifically that I won’t transfer the tick-borne infections. I also had questions about what to do to keep myself healthy during and after pregnancy, including about the osteopenia/osteoporosis I have in different bones of my body.

While we had a productive conversation about supplements (he recommended OsteoPrime and gave me some other suggestions of varying usefulness), he said he didn’t think I have Lyme anymore because I’ve done so much treatment. He went on to explain that after years of Lyme treatment for himself and his patients, he has come to the conclusion that Chronic Lyme Disease is an autoimmune disorder. (He said he knew his idea “isn’t popular with the ILADS crowd.”) His main reason for this conclusion is that he’s had success in reducing symptoms with low dose immunotherapy, or LDI, as pioneered by Ty Vincent, a physician in Alaska. I pressed him on it. I wanted to know if this was merely a way to shut down an appropriate response to a persistent infection. He claimed first that the infection was no longer there, that the immune system was attacking itself like it does with rheumatic fever (where one particular strain of strep infection causes the body to make an antigen that cross-reacts with heart valves). Then he said that if the infection was present (which it might be because he can’t prove either way with current tests) that at least the symptoms will go away because the symptoms come from the immune system’s response to the infection, not from the infection itself.

My first question was: if the infection is gone and LDI “resets” the immune system, why do you have to “reset” it again every 2 months? (No good answer, but the treatment seems to work for only 7 to 8 weeks at a time.)

Then I told him that my experience with the coil machine, which does not suppress the infections, is that they remain active, that I’ve been able to reduce the level of symptoms and herxes, yet there are still flares, either seasonally or with certain food triggers. I thought it was a bad idea, if there is even a possibility that I still have the infections, that I would do anything to weaken my immune system or prevent it from fighting them off. He reiterated that he thought all the people with CLD don’t have infections anymore. No evidence, just his “belief.”

He asked me how I thought the microbes could possibly survive in the body for so long. I mentioned the immune protected places (which he listed as CSF, joints and eyes) where dormant forms or intracellular forms can survive, unaffected by either the host immune system or antibiotics delivered by the blood stream. He then told me that I shouldn’t worry about infections in those places because they couldn’t affect a baby. I said that I thought flares happen when these microbes become active, and in that case, they may temporarily be in the blood stream, giving them access to infect a fetus. His response was two-fold: first, if antibiotics, which are smaller than bacteria, can’t get into these tissues, that the bacteria can’t get out. (I listened at this point because he no longer could hear what I was saying, but I thought, if they can get in, they can get out, usually by a process other than diffusion.) He said he was a microbiologist, so he knew better than me. (I checked his reasoning with an immunologist friend who couldn’t stop laughing at his faulty “logic.”)

His second rationale was that there is “no proof of mother to child transmission of Lyme.” I just stopped talking at that point. Then he went on to explain that blood tests will give false positives while the mother’s antibodies are circulating in the blood stream and false negatives after because the child was supposedly exposed to the bacteria before birth. Besides that, antibiotics will permanently damage the microbiome of the infant. Then, he further explained that it is really obvious when a child is born with Lyme because they have almost immediate neurological problems. (You can see how I stopped trusting him as he contradicted himself.)

When I was in high school, I was on the debate team. There are four necessary elements to a debate: a question (or resolution), an affirmative side, a negative (or opposing) side, and a judge. We had the question. We had opposing arguments. But there was no judge. I knew that I wasn’t being heard because his mind was made up. So I had to stop, not even responding when he said: “You know, people with Lyme just get so scared so they’ll believe anything.”

Needless to say, I won’t be going back.

But I haven’t been able to let this go, six days later. I reflected on the conversation and noticed that as I accused him of being ideological, from his perspective, I was being ideological. We were both speaking from personal experience. We were both having some success with treatments that accomplish opposite ends.

I looked up LDI, as I had done when I heard about it over the summer and again before seeing the naturopath. As best I can tell, people herx when they take it. Then their symptoms go away for a while. Maybe the enzyme additive has a bactericidal property as well as an immune suppressing property. I can’t be sure. I can say that anything gets better but keeps coming back and causing symptoms is a foreign agent and probably not purely the body attacking itself. (I think this is true of rheumatoid arthritis and multiple sclerosis, rather than seeing those diseases as proof that CLD is autoimmune.) But I recognize that mine is an opinion and that others look at the same patterns and come to an opposite conclusion.

All this pondering and self-questioning about my conclusions bring me back to Occam’s Razor: among competing hypotheses, the one with the fewest assumptions should be selected.

My hypothesis is that persistent Lyme and tick-borne infection symptoms are caused by persistent infections. The assumptions:

  1. There has been an acute infection that generated symptoms.
  2. Some of the microbes are not killed by antibiotics.
  3. Surviving microbes live on in tissue that is not affected by the immune system or antibiotics.

The autoimmune hypothesis states that persistent Lyme and tick-borne infection symptoms are caused by an autoimmune dysfunction. The assumptions:

  1. There has been an acute infection that generated symptoms.
  2. Antibiotics can penetrate all tissue that the microbes are known to infect.
  3. All microbes have been killed by antibiotics. (Or any remaining microbes cease to cause symptoms.)
  4. The microbes cause the body to generate antigens that cross react with host tissue (though this has never been shown in a lab).
  5. The body never ceases to produce these autoimmune antigens (or other autoimmune agents).

Just based on numbers, my hypothesis has fewer assumptions. The assumptions themselves also seem less suspect, given that in autopsies, bacteria from Lyme and other tick-borne infections have been cultured from the tissue of symptomatic patients who have been extensively treated with antibiotics.

So my working hypothesis may be ideological, but it is also logical. And from the perspective of someone who could transmit the disease (if might still be in the body) to a fetus, it is the more conservative hypothesis.

Snowshoeing

As I wrote almost 2 weeks ago, I’ve started physical therapy for the litany of problems and persistent pain in my left foot. After the third session, during which the therapist massaged up a tight section of my left calf, my ankle was released. The pain was reduced by an order of magnitude. I could walk a lot better.

Two days later, to celebrate my birthday, Joe and I took a friend up to Badger Pass in Yosemite to enjoy the snow. While they spent the day skiing, I spent an hour and a half snowshoeing. (Or 45 minutes snowshoeing and 45 minutes listening to a ranger talk about what we were looking at.) And the rest of the day in a tired, happy stupor.

Walking in a path behind 10 people makes snowshoeing a lot easier.

Walking in a path behind 10 people makes snowshoeing a lot easier.

It was exhilarating and exhausting. I did my prescribed stretches that night. Then I got up and walked around the valley the next morning before the rain came. My friend and I found a flock of Clark’s Nutcrackers. Their black and grey were striking to see against the cloudy white sky and the snow that covered everything.

This bird was part of a flock that pecked at the ground under the trees where the snow was melted and hopped around from branch to branch.

This Clark’s Nutcracker was part of a flock that pecked at the ground under the trees where the snow was melted and hopped around from branch to branch.

I overdid it, and every step in the beauty and nature was worth it.

Symptoms, Flares, Coiling and other treatments

I came back and my foot is bothering me again. The physical therapist wasn’t able to recreate her miracle. But she made the pain calm down with an ultrasound treatment. I also went to an acupuncturist. She was able to get rid of a crazy neck-shoulder-upper back spasm on the left side that I had been treating (to partial relief) with a heating pad. The acupuncturist recommended Topricin for my foot. It hasn’t worked all that well on my foot, but I left in on my hands and my knuckles feel better. (As long as I reapply it twice a day.)

The January Lyme flare has begun. All my joints are popping. Eating wheat makes my ribs hurt. I’m tired in the afternoons. I had a few days of loose bowels when the flare began. I’ve had a few shock sensations go down my legs and uncontrollable twitches in them. And for a day I had acute nerve pain on the top side of my forearms, extending down into my middle and ring fingers. I feel Lyme-y but it isn’t that bad. I’m coiling every third day and letting myself stay symptomatic in between.

I’ve been coiling for Bartonella twice a day (once on Lyme days), and my kidneys barely ache. I’ve had some tingling in my arms and legs, but nothing that lasts very long.

The persistent problems are the bursitis and nerve pain in my left foot and the brainfog that comes without warning. I can’t believe that I didn’t realize I had it before. If anything, it is a testament to how much better my baseline brain function has become.

Since I can’t go for walks, I’ve been doing 10 minutes of yoga in the morning. I’m hoping that as my foot gets better, I can exercise again.

I’ve been playing around a little with essential oils in an attempt to calm my left foot. Nothing has worked well, yet. (Some things, like peppermint oil, made it worse.)

And I’ve decided to order the Alfons Ven Lyme package, despite my reservations, as something to try when I stop coiling.

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