Posts Tagged ‘lyme’

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Fragile

Wednesday, February 15, 2017

I’m in a mood today. I’m trying to close a real estate deal. I can’t tell if my agent is fighting as hard for me as I expect him to, and I’m trying not to get angry at myself for not realizing a mistake yesterday that has impacted the deal.

Real estate transactions, just like so many other things in life are fragile.

My personal plans for the future have also felt fragile for the last several months. I decided to go back on antibiotics after years of having complete control over my Lyme treatment (through the coil machine) for over 5 years. The drugs zapped me of my energy, my desire to get out of bed, my ability to imagine a future, even my ability to think. So for 6 weeks of iv doxycycline, my future seemed fragile. It seemed that the reason for taking the drugs, to quiet down the infections and give myself a chance to try to get pregnant, was foolish. I could barely stand, walk, talk, eat, sleep, knit, read, watch tv, by the end of the third week. Adding a child to the mix seemed like the worst idea possible. I couldn’t remember a time when I felt any better than I did in the moment, and I couldn’t imagine a time when I would stop feeling so bad.

Then the PICC (peripherally inserted central catheter) stopped working. I used the PICC, a tube that went from a hole in my arm to a vein near my heart, to deliver doxycycline and other drugs. When it stopped allowing fluid to enter, I discovered that PICCs are also fragile. I had to have it removed because the end in my chest was no longer near my heart. Within days, my mind cleared up.

I had a chance to decide whether I wanted to continue with antibiotics. At first, I was ready to give it all up and go back to my trusty coil machine. My husband gave me plenty of space to talk through my options without putting any pressure on me to decide. It was exactly the right kind of support for him to give me.  Then I called my sister. She gave me the kind of perspective I cherish. She reminded me that this time last year, I thought I was near the end of these illnesses. I felt quite well. All I wanted was to have a baby and begin working. After a hard year, those dreams seemed out of reach, but my sister said that if I got myself well again using the coil machine, I’d be six months or two years older and kicking myself for not seeing things through with the antibiotics, because my dreams and goals would be just out of reach again.

So I pulled myself together, got another PICC and suffered through some more doxycycline. Then my digestive tract stopped working altogether. I could barely eat and what I did get in came out within the hour. I had to stop the drug. It turns out my digestive tract is fragile, too.

I called my doctor, took another week off all drugs, and this time came up with a new combination that I tolerate better. The first week on it was hard. I’m now a few days into the second week. The herx is the same as it was when I was coiling this time last year (kidneys, insomnia, night sweats, headaches). More importantly, I’ve been able to think and feel and not spend all my time on the couch in a daze. Thus, I’m finally able to write a blog and get back to living.

This is not to say that I’m as well as I was last February, I’m still struggling on all the drugs and have infection symptoms on top of the herxes. However, when I was well last May, and I was sure I’d be well this February, I signed up for a writers conference. The day after I stopped the doxycycline for the last time, I discovered that the conference was in three weeks (tomorrow compared to the day I’m writing this post).

That’s when I discovered how fragile my ego is. I had plans, last May, plans that didn’t include two relapses in the summer and autumn, plans to type up and revise a science fiction novel I’d completed using pen and paper. I expected to have a draft in case I connected with an agent or editor at the conference. I almost signed up for the opportunity to pitch my book to several agents and editors at the conference. But I decided against it, hoping I might have a deal already.

It’s humorous now, looking back three weeks when I felt like a fraud for thinking I could ever get anything finished, never mind published. In the intervening time, I’ve gotten well enough to attend at least part of the conference, assuming I sleep in and leave early each day. I’ll have to do the iv infusions in the morning and evening while I’m enjoying some quiet time. I’m planning my food and supplements carefully.

Yesterday, I spent several hours designing business cards to print at home. To say I’m satisfied with how they came out would be missing the point. As I wrote the cards, I kept changing the content, wanting to include something beyond my contact information. I decided to write down the type of literature of which I have drafts on my computer (or have printed limited runs for my family). I was able to see that despite my difficulties, I have composed several short stories, kids stories, a sci-fi novel, part of a memoir, part of a how-to book (about coil machines, of course), and this blog. The process helped me to rebuild my fragile ego in preparation for my first professional activity since I was felled by Lyme Disease in February 2007.

There’s always more, of course. Although I’ve primarily focused this blog on the coil machine, I have two things I’m working on. One is a resource on the practicalities of PICC lines and long-term antibiotics. The other is about environmental training, a piece of the puzzle that is overlooked for chronic infections and autoimmune disorders.

For now, I’m headed to a conference, planning out the next part of my treatment, and coming up with new ideas for how to live better with Lyme Disease.

Disclaimer

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The Sixth Package & A Seasonal Lyme Flare

Monday, September 5, 2016

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

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

The Sixth Package of CHIM

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

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

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

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

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

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

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

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

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

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

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

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

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

Combining Alfons Ven remedies with other supplements

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

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

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

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

Seasonal Lyme Flare

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

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

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

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

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

Disclaimer

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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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Pills and Potions

Sunday, February 14, 2016

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

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

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

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

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

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

Ven Lyme Package

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

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

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

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

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

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

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Flux and FLUOX

Wednesday, February 10, 2016

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

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

Bartonella and the Flare Problem

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

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

Still, I felt like something else was off.

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

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

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

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

The Coil Machine Problem

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

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

Flux

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

Costume dress-up

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

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

FLUOX

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

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

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

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

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

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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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