Posts Tagged ‘detox’

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Kidney Conundrum

Friday, May 2, 2014

The truth is that I’ve been feeling worse lately. It’s a hard truth. For most of the past 6 years, I’ve been getting better, in fits and starts. I haven’t regressed significantly at any point in time since I stopped antibiotics and started using the coil machine. So it shouldn’t surprise me that I’m having a hard time with the increase in symptoms and the reduction in my daily capacity. I remember lots of days, even years, when I got absolutely nothing done.  I watched movies, listened to the radio, crocheted, talked on the phone and had an occasional visitor. Things aren’t that bad right now. I can manage to do one thing each day. But I find myself needing a lot more naps and slow time, in which I’m not creative or productive. I still prioritize the non-activities to things that I’d like to do, like working on a baby blanket. But even then, I’m pretty wiped out.

There are several contributing factors, each one of which is a necessary step in progressing towards getting the tick-borne infections completely out of my system. The first and least controversial is the change in my coiling location for Bartonella. It’s been shocking to have the Bartonella herx symptoms ramp up so much.

The next factor is the vaccinations I’ve taken so I can travel this summer to a place that doesn’t have Western hospital facilities. I’ve been questioned about this choice. If you’d asked me about it two years ago or even 8 months ago, I’d have thought it was a bad idea. After my Lyme symptoms completely disappeared, I realized that I only had dormant Lyme in my body and it needed to be activated. I would have found other ways to activate it, but the vaccinations were something I’d been wrestling with. One option was to cancel the trip. This option seems better.

The last factor is that I’m eating everything again. I know I could “feel” better, with less symptoms, if I went back on a strict diet and took lots of supplements (the ones that are still sitting in my cabinet). But that option wouldn’t help with my ultimate goal. I’m letting the symptoms and the underlying infections stay active, not targeting them with a boost to my immune system or loads of antioxidants or by getting rid of all dietary sources of inflammation. I’d like them to stay as activated as possible so that they are fully susceptible to being killed by the coil machine. Otherwise, I’m just building up stores of dormant Lyme cells to deal with in the future.

Bartonella & Kidneys

I’ve struggled with Bartonella herxes from the time I started to tackle Bartonella in 2012. Any time I increased my coiling protocol to include a new body part or increase the time on a body part I’d already started coiling, my kidneys hurt. It is a dull, cold ache that bothered me relentlessly. The constant pain made me feel even more exhausted than I was already. The persistent symptom reduced the speed with which I ramped up my coiling protocol, possibly because it was an indication that my body couldn’t detox any faster than it already was.

Until last month, when I changed the location I coiled my shoulders, I hadn’t had kidney pain as long as I took Renavive, which is marketed to dissolve kidney stone and is a good detoxifying combination pill. In fact, I was decreasing the daily dose of Renavive at that time.

All that has changed. I’ve hit upon an area where there is clearly a large load of Bartonella bacteria, which I suspect is in some kind of biofilm, one that wasn’t diminished by antibiotics or coiling nearby locations. I’m coiling the area for six minutes daily at 832 Hz on each shoulder. By the time I reached 6 minutes on each side, the kidney pain had returned full force.

My imperfect solution has been to increase the daily dose of Renavive to 2 pills, twice per day, plus dandelion root tea, lots of water, lemon juice and rest. I still have pretty bad kidney pain every day. The only effective solution I know of is going to a dry sauna and sweating for 15-20 minutes several times a week. The problem is that spending that much time in a sauna and increasing my body temperature enough to make me sweat profusely will put the Lyme right back into its dormant state. If I hadn’t already intentionally triggered the Lyme with vaccinations, I would consider going back to the sauna. However, I don’t want to go through another round of Lyme flares unnecessarily. So I’m stuck out in the cold, or at least, out of the detoxifying heat of the sauna.

The other possible solution is to reduce the amount I’m coiling my shoulders. Now that I’m writing it down, it seems like a good idea. I’d been thinking that I would be taking a step backwards by doing that. Of course, I’m anxious to get to a point where I’ve vanquished Bartonella, but that isn’t today. The day will come faster if I keep going hard, as in coiling a lot, on my shoulders. So I’ll need to consider that option if the kidney pain doesn’t subside in the near future.

I tell people who ask how to start coiling that they should go easy. We only get one body. No need to damage it more than the infections already have. If I can’t get the kidney pain under control, it looks like I need to listen to my own advice.

Meanwhile, I have other symptoms of Bartonella herxes, including all the ones listed on the previous post and tingling in my arms and legs when I wake up or when I walk any distance. I have mild headaches. I have a lot more urinary tract issues, including bladder hesitancy and abdominal pain. I’m itchy a lot and the acne on my bottom has blossomed out of control. Overall, I’m feeling worse from the Bartonella herx.

Lyme Resurgence

After the first few vaccines, I had a return of the heart problems I get from the Lyme infection. This time is a little different. I took a different vaccine (TdaP). I’m having a return of the joint aches, pops and pain, from my knuckles to my knees to my spine (and everything in between, including my ribs). My shoulders all the way to my jaw, especially the left side, are the worst. The pain and stiffness go away for about 24 hours after I coil, but then they reappear pretty quickly. It seems that the vaccination has diverted the resources of my immune system, leaving the Lyme to reactivate slowly and consistently.

Beyond the pain, I’ve become really tired. Tired enough that I’ll need to check for a recurrence of Babesia. Mostly, though, I’m tired from noon to 5 pm. In the morning, once I wake up, I’m okay for a few hours. In the evening, I can manage to make dinner and clean up. In the middle of the day, my best bet is to nap early, like noon or 1pm and sleep for an hour. After that I function a lot better. Nighttime has gotten longer. I’m usually in bed between 10 and 10:30pm and asleep within 20 minutes. I have somewhat interrupted sleep: more nightmares (probably Bartonella), light night sweats (also Bartonella) and full bladder (also Bartonella–oh those kidneys!). In the morning, I sleep until 8:30 or 9:30. It’s a lot of sleep. If I don’t get enough sleep, I stay groggy until I go back to sleep.

Just the sleep and fatigue is enough to make my life seem smaller. I have fewer hours a day in which to do anything at all. Then having pain on top of it just makes things worse. Besides the joint pain, I’ve got a tingling, dull ache on the entire right side of my body. Talk about distracting. My mind seems more muddled. I have a harder time making decisions. I’m more prone to saying the wrong thing (both irritating the people around me and confusing me as to why I said something I didn’t mean). I have more difficulty concentrating.

The herxes are a little stronger, generating additional spine pain and loose bowels (which are a bit of a relief from the Bartonella herx inspired constipation!).

I feel more disabled overall.

Inflammatory Ingestion

Despite the pull to avoid all inflammatory foods just to get through the next month or so, by which time I hope I’ll be past the worst of the Lyme flare and the Bartonella herx, I’m continuing to use the same dietary principles I came up with before things got worse.

I can feel the extra level of inflammation. Each day, my abdomen swells up big and hard…like it used to before I figured out my food sensitivities. My wedding ring feels tight, as do my sandals. At first, I thought my weight was catching up to me, but my weight stabilized in January without these problems. My ring and sandals fit in the morning, but both my hands and feet swell a little after breakfast. I’m sure it’s from my ultra healthy breakfast (green smoothie) which happens to contain berries, to which I am sensitive.

I think sometimes that I’m a little bit crazy, pushing the envelope enough to let myself feel worse for so much of the day these past days. I’m still eating corn and wheat, nightshade vegetables, berries and all of the things that have given me problems. I’m allowing my body to have more stress in the hopes that these things encourage the infections to come out of dormancy and stay out until I kill them off.

Some mornings, I get depressed by the increased symptoms. I feel like I’m back sliding. The thing is, I know that I had achieved a precarious balance to make the Lyme dormant. I knew the infection was still in there, just waiting for an opportunity to strike again. So I gave it that opportunity on purpose in the hopes of weakening it further. I’d rather do it on purpose on my timeline than to be expecting things to go well and be blindsided by the infections…again.

I’m trying to be zen about my reduced capacity and increased disability. I recognize that my body is stronger than it has been at any time in the past 7 years, despite my lingering cold (from March 21), and that even though I feel bad, I’m better off. In moments of weakness, I want to call it a day and sign up for the antibiotics that didn’t work before, just to have the immediate relief for a few days. That idea makes me realize what it would really mean to go backwards. Despite feeling worse, I’m continuing to make progress. And that’s what really counts.

Disclaimer

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Missing Pieces

Tuesday, April 8, 2014

It’s been a while since I sat down in front of my computer. A lot has happened, mostly good, even the yucky stuff. First, I went to visit my sister’s family for 10 days. It was a fabulous vacation from coiling, especially the part where I got to play with my nephew and niece every day. Before I left, I did a little more Bartonella coiling and discovered that doing my whole body gets a lot bigger reaction than coiling my core. That has changed my approach to my daily coiling sessions. And finally, I came back and got a raging upper respiratory infection. Even though it has been miserable, and I’ve spent lots of time on the couch napping or watching movies, it has been fascinating to see that my body can adequately fend off an ugly infection without any antibiotics or other drugs.

The past few days, as the respiratory infection has been receding, I’ve had food on my mind. I realized that I don’t know how to eat well anymore. I got so used to living on a severely restricted diet, one that I knew how to navigate, and which was full of foods that I could eat without limit (a whole head of broccoli, for example), that I don’t know what to do now that the rest of the foods I’ve been wishing for are no longer off-limits.

Family Time

It’s a typical American story. My parents were the children of immigrants. Along with some of their siblings, they were the first generation to go to college. The leap in education from their parents’ generation to them was 3rd grade to a masters degree. But they made their lives in NYC, just like their parents did. In my generation, my sister and I both have graduate degrees. We’ve lived in a variety of places as a result of our career choices. I’m now living far from NYC because my choice in whom I married. We don’t see each other as much as we saw our extended family when we were growing up.

For me it is a huge treat to spend a week or two with my sister’s family. I know my nephew loves it (because he tells me so and tells me he doesn’t want me to leave and asks why I live far away), and I suspect my niece loves it, too, but she can’t talk yet.

When we had two weeks of Christmas time all together, the kids were delighted. So were the adults. Even with the inconveniences of not enough bedrooms or audio privacy (everyone could hear the baby cry at night), we had a great time together. We are a family that gets along well, enjoys outings and meals together, and can play with trains and toys and whatever the youngest ones are interested in, while still having time and interests to share with the grandparents.

On this trip, we celebrated my nephew’s 3rd birthday. The party was fun and so was the rest of the week. We played together a lot, especially when the kids in his class came down with a stomach bug the week before the party. He stayed home from school and played with me to avoid being sick for his party. My niece got some quality time with me one afternoon, skipping out on school early to play together. We also spent early mornings together to let my sister get some extra sleep (in the 5:30-7 am range).

I came back feeling terribly jealous of my sister–that she figured out how to have a career and to have a family. I don’t suggest that everything is perfect, she still has to make hard choices about her limited time each day, but I was jealous of what she’s been able to accomplish. Mostly, my jealousy stems from being sick for so many years that I had to give up my career and had to postpone having a family, if I’ll get to have children at all.

The jealousy was really an acknowledgement of the cost of chronic Lyme disease. I still want what I wanted when I was 30. But I’m less sure of what my life will be or when I’ll be well enough to pursue my dreams again.

Coiling Lessons

Before I left, I was coiling for Babesia, doing my best to make sure that there was no active infection left, so I could have a good trip…and so that I could redouble my efforts on Bartonella. The last two days before I left, I did a Lyme day and a full-body Bartonella day. I could feel the Lyme herx pretty clearly, but that was expected as I’ve been feeling them more since I took the vaccine doses. The Bartonella herx was more than I expected.

I had been coiling my central nervous system and key organs for Bartonella all along. I thought I’d be covering all the parts that really needed coiling. I suspect that I continued to make progress where I coiled, but that in the rest of my body, the Bartonella infection flourished. After I coiled my whole body, I started having all sorts of neurological static. Sometimes it was the all-too-familiar tingling and numbness in my arms and legs when I wake up in the morning. Sometimes it was feeling oversensitive to stimuli. Some of it was increased low-level headaches or insomnia. I felt twitchy and achy and out of sorts.

When I returned to Watsonville after my trip and started coiling again, these symptoms returned, along with shooting pains in my legs, itchiness, hot sensations in my limbs, disturbing dreams, pain in my calves and feet upon waking, and some sensitivity to light. Then I had the usual bowel troubles (IBS symptoms, tending towards constipation) and acne (on my butt and face).  It was all pretty typical Bartonella herx/flare symptoms.

I’ve rededicated my energies towards getting rid of Bartonella. Every day (except Lyme coiling days) I coil my entire body for Bartonella. I no longer feel any resistance to it, despite dreading Bartonella coiling sessions for over a year. I’ve cut down slightly on my detoxing (going from 3 pills to 2 pills of Renavive daily), just in case the detoxing agents were in any way suppressing the Bartonella (or the Lyme for that matter). I’ve also stopped taking milk thistle. If the herx symptoms start piling up too much, or if I start getting kidney pain again, I’ll go back on these supplements. But for now, I’m seeing the Bartonella symptoms slowly diminish.

The Lyme herxes are the same as before I went on the trip. I feel like I’ve got the Lyme aches and pains and low energy and occasional heart symptoms, as if coiling isn’t helping. I have to remind myself that I didn’t coil for Lyme for two weeks, and I need a few sessions to catch up. The other piece to this is that I may have succeeded in convincing the cysts to start waking up. If they continue to wake up, a bit at a time, I may continue to have relatively low level (not completely incapacitating but somewhat debilitating) symptoms for a while to come.

When I’m fully recovered from the respiratory infection, I have one more vaccine to take. I expect to get more Lyme symptoms again. That would be a welcome, if unpleasant, result, and would keep me going on my use of triggers to get rid of the dormant Lyme cysts in my body.

What’s still missing is what to do about other possible infections. I don’t yet have a plan. I don’t really know what to do when I try coiling for other infections and get herxes. For now, my primary goal remains to get rid of Lyme and Bartonella. Once those are gone, I’ll move on.

Triumphant Cough

In my Lyme support group, one of the members mentioned that a Lyme pediatrician she knew said that a key marker that a child no longer has chronic Lyme is that the child catches a cold, gets sick and gets better without antibiotics. I’m not sure that one cold is sufficient evidence that the chronic infection is gone, but it is evidence that the Lyme infection no longer controls the host immune system.

I caught an upper respiratory infection during my travels. Back before Lyme took over, I used to get pretty serious URIs. In high school, bronchitis lasted several months every winter. I had a respite in college (yay for Los Angeles!). Then my second year in grad school I had walking pneumonia. That wasn’t the best way to spend New Year’s Eve 1999.

Back then, I always turned to antibiotics after two weeks of the URI not going away. After the pneumonia, I stopped taking antibiotics for 7 years. It was interesting to get a cold, have that progress to a cough, then watch it disappear on its own, as long as I rested and drank plenty of fluids. Sometimes I would get help from an acupuncturist. Those times seem long gone.

Now, already 2 weeks into this URI, I haven’t taken antibiotics. I can’t quite seem to shake the sinus infection, but I have gone through the descent into my trachea and bronchii, followed by my body kicking the infection back out. I’ve been more than tired these past two weeks. My baseline, with the chronic infections, tends towards low energy. With an extra infection, I’ve been wiped out. I truly did nothing. I watched movies. I slept. I read a bit. Not much. I even stopped coiling for a few days, when the chest cold was really bad, because I couldn’t take the aches and pains of a herx.

Now I’m coughing a bit, but I see that my immune system is functioning reasonably well again. That’s pretty great.

Blind Eating

While I was extra sick, I had no appetite. None at all. I ate clementines and toast. I drank a lot of tea. I lost 4 lbs in the first week. When I started eating again, I felt pretty nauseated after each meal. But my stomach eventually got past the infection and I’m back to food.

I’ve been thinking a lot about food, even when I wasn’t eating it. I thought about excess calories and excess carbohydrates and all the weight I gained between last June and December. I thought about insulin resistance and its association with chronic stresses, including chronic infections. I thought about the strict anti-inflammatory diet I was on for over 6 years. I thought about all the foods I’ve wanted to eat and have added back into my diet. I thought about the inflammation that has returned with the new foods and the Lyme flares. I thought about what my body might need now that I stopped taking supplements. I thought about the IBS symptoms and what might relieve them. And I thought about what to eat to help detox the Bartonella herxes.

When I was taking antibiotics, low carbohydrate meals and snacks were a necessity to minimize the systemic growth of yeast and other fungi. Now that I’m coiling, I don’t want a totally carb-free, anti-inflammatory diet that artificially keeps the Lyme in cyst form. I want some inflammation and some temporary increases in blood sugar after I eat, in the hopes that this activates the Lyme bacteria. The question is how to balance this goal with my desire to loose some of the weight I gained and not end up being crippled by renewed Lyme symptoms. I think that increased fruit will help with the IBS and that some extra antioxidants will help with the Bartonella symptoms. I just don’t want to take so many that it puts the Lyme back into a dormant state.

Balancing these competing goals seems tricky. I don’t have any firm conclusions yet. But for the next few weeks, I plan to keep a food journal. I’ll be trying some different types of meals. I’ll note my cravings and anything that changes in my digestive tract.

For now, I’m planning on eating more fruits, and continuing to eat a lot of vegetables. I’ll try more beans and lentils. I’ll keep eating grains and nuts and soy. I’ll see how things go.

Maybe I’ll be able to come up with a good coiling diet, one that responds to my needs as I get towards the end of coiling (or what I hope is the final stretch), in the way that the more restricted diet allowed me to begin the healing process when I was taking antibiotics.

Disclaimer

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Talking Turkey

Thursday, December 5, 2013

This past week, I’ve been thinking a lot about how to go from where I am, which is better than I’ve been since I got sick, to healthy and capable of daily activity. In a lot of ways, I think I’m on the right track. I’ve made adjustments to the Bartonella protocol. I’m trying new foods and doing my best to get the dormant Lyme bacteria back into their active state.

Talking Turkey

I had turkey last week for the first time since 1998. It was a tasty organic turkey, roasted and stuffed. I enjoyed it quite a bit and seemed able to digest it. I’ve been branching out with food this year, not avoiding all the foods that cause immediate inflammation. But this was different. I was a vegetarian for a long time. I started eating seafood in 2010. I’m considering some organic poultry and meat, but I’m ambivalent. It helps if it tastes good.

Thanksgiving was a relaxed affair. Joe and I had three guests, all of whom are family. They got here on Wednesday night to help prep the food Thursday morning. But before cooking, we headed down to the beach for an hour. It was beautiful and sunny. It felt like the right place to thank the planet for it’s bounty, not just what we humans consume but all the rest of the living organisms who share the world with us.

We all cooked together. We ate in courses over several hours, with breaks in between for hanging out, naps, coiling (for me) and cooking more. It was fun to be with people. It was a big deal for me to participate so much in the kitchen. I haven’t previously had enough energy to do much in the way of cooking at holidays. All the energy expenditure meant that I was pretty tired the next day and unable to do very much. Still, we all enjoyed each others’ company, and that was what was most important.

Lyme & Wheat

Meanwhile, I’ve added wheat back into my diet more and more. I can tell the Lyme bacteria are waking up because I’ve got more rib pain and my herxes are getting a little more intense, particularly having loose stools on the day after Lyme coiling and aching all over my body in the morning. I’m doing my best to balance between feeling awful and letting the Lyme loose. I’m trying to pull out as much as I can before the next Lyme season (end of January), when I’m planning to try to force it out of hiding. (I’m still working out how to do that…)

Bartonella Iterations

I definitely learn when I make mistakes. On Thanksgiving day, I lost my second dose of pills for the day, which included the ones I take to detox my kidneys from Bartonella herxes. I woke up that night with a night sweat, even though I had only coiled once that day. It made me realize, yet again, how important getting the right detoxing combination is to be able to coil as aggressively as I do. It also taught me that I’m killing more Bartonella than I realized because Renavive is such an effective detox agent for me.

When I think about how I’ll know that I’m finally done with Bartonella, it will mean I can coil the back of my head for a long time and get no reaction, even without taking Renavive. I’ll also stop having headaches, constipation, and other bowel difficulties (including abdominal swelling, and constipation alternating with urgent bowels). Since many of the neurological Bartonella symptoms have begun to wane as I’ve coiled more aggressively, those are not a sufficient marker for clearing the infection.

I had another little discovery the night before Thanksgiving. I had a really bad headache all afternoon. When I coiled the back of my head for Bartonella, it went away completely. That’s the opposite of what I expected, since coiling for Bartonella usually leads to headaches. I don’t know what to make of this switch, but I thought it was worth noting.

As a result of putting so much attention on Bartonella over the weekend, I decided to try to focus even more on coiling the back of my head and trying to get rid of this infection once and for all. I started coiling the back of my head twice a day on Monday, adding in 8 minutes on the back of my head in the morning. Then today, I changed it to ten minutes on the back of my head twice a day. In order to do this, I had to reduce the amount I’m coiling on the sides of my head, but I think that the back of my head gives me the most effective infection exposure point. (The new protocol is listed below.)

Already I’ve given myself another bad headache, Monday night and Tuesday during the day. My kidneys ache. I have urinary hesitation. The constipation has gotten worse (until today after coiling for Lyme yesterday). My abdomen is sore and swollen. Coiling the back of my head more is definitely having an effect.

Bartonella Coiling Protocol

(Draft 8)

Frequency: 832 Hz

Morning (total 40 minutes)

  • Each side of head, 5 minutes
  • Back of head, 10 minutes
  • Spine: upper, middle, 5 minutes per
  • Spleen, 5 minutes
  • Liver, 5 minutes

Midday (total 36 minutes)

  • Between legs: thighs, knees, calves, 2 minute each
  • Feet through coil, 2 minutes
  • Each ilium front, 2 minutes
  • Each hip bursa, 2 minutes
  • Lower abdomen/pubic bone, 2 minutes
  • Each side of ribcage plus the adjacent arm, 2 minutes
  • Shoulder front and neck, 1 minute on each side
  • Shoulder blades, 1 minute on each side
  • Each ilium back, 2 minutes
  • Butt (underside), 2 minutes
  • Each butt cheek (up towards the iliac crest, for the joint and muscles), 2 minutes

Night (total 36 minutes)

  • Top of head, 8 minutes
  • Back of head, 10 minutes
  • Sacrum, 8 minutes
  • Chest including heart, 5 minutes
  • Abdomen, 5 minutes

Disclaimer

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Supplemental Information

Thursday, September 19, 2013

After the last post, when I was writing about reducing the amount of supplements I take, I started to get excited about the possibility of not having to take pills with every meal. What a difference that would be. With that in mind, I’m reviewing the supplements I’m currently taking and considering what to stop and when.

The current list is much smaller than the one I was taking last year, and that one smaller than the year before. As I’ve coiled, I’ve found that I don’t need as many supplements to be able to function on most days. As the herxes get less, I reduce the supplements more and more. This allows the bacteria to come out of hiding and get killed, with the idea that either I’ll get rid of the entire infection, or I’ll reach a point that my body can keep the last few dormant cells in check on its own.

Current Supplement Schedule

I take supplements for a variety of reasons. The key ones are: increased nutrition because I had such poor intestinal absorption for so many years, detoxifying agents to clear out herxes and toxic by-products of active bacterial infection, bone building supplements for osteopenia and sex hormone regulators to prevent illness during my menstrual cycles.

Nutritional Supplements

These are pills I take to make sure I’m getting the minimum I need in my body to allow for healing and daily activity. Included with the nutritional supplements are digestive enzymes to increase the likelihood that the food I eat gets digested and absorbed.

Another way that I’m improving my digestion is with probiotics. I used to take probiotic supplements, but now I prefer probiotic foods. I’m including them with the supplements because I am rigorous about taking them daily, and when they aren’t available, I take probiotic pills.

  • Mulitvitamin (Thorne V, 1 pill twice a day, which is 1/3 of the recommended dose on the bottle)
  • Digestive Enzymes (Jarrow, 1 pill with each meal, which is half the recommended dose)
  • Probiotic foods (cultured cabbage daily, kombucha most days, sheep milk yogurt most days, miso occasionally)

Detoxifying Agents

I take pills to keep my kidneys and liver clear and functioning. Daily consumption helps me keep the herx symptoms from getting worse by preventing the toxins emitted by the bacteria as they die from building up in my body.

I also take quite a lot of antioxidants to keep my blood clear of toxins. Antioxidants, like vitamin C, taken in sufficient quantities, can suppress Lyme and other bacteria. So the trick is to balance how much I take to assist in detoxing without preventing the bacteria from staying dormant and in my body, unaffected by the coil machine.

Note: I use VitaCost for most basic supplements, so if no brand is listed, it is VitaCost.

  • Milk Thistle (cleans the liver, 150mg, 2 pills once a day)
  • Renavive (an herbal formula for dissolving kidney stones, also a kidney cleanse,1 pill three times a day)
  • N-acteyl Cysteine or NAC (an amino acid that is transformed into glutathione -a powerful antioxidant- by the liver, protecting the liver and cleansing the blood, 600mg, 1 pill twice a day)
  • Vitamin E (an antioxidant, 400iu, one per day, plus whatever is in the mulitvitamin)
  • Vitamin C (an antioxidant, 1000mg, 1 pill per day, plus whatever is in the multivitamin)
  • Alpha Lipoic Acid (an antioxidant, 100mg, 1 pill per day)
  • Sulforaphane Glucosinolate (a derivative of broccoli, an antioxidant, NuMedica BrocColinate, 60mg, 1 pill per day)

These antioxidants are what I’m weaning myself off of. Sunday, I reduced the alpha lipoic acid to its current level and went down to 2000 mg of vitamin C per day. I’ve already started to feel the Lyme get more active, with joint pain and popping noises. Today I went down to the current 1000mg of vitamin C. Over the next weeks, I’ll be removing additional antioxidants. It is both liberating and frightening to do so.

(Note: On Sept. 20, I decided to stop the alpha lipoic acid for now, with some extra on hand in case I want to take an antioxidant after the others run out. By Sept.21, the Lyme symptoms included increased fatigue, needing extra sleep, loose stools and all over body aches.)

I just wish I thought of this before I went and reordered the vitamins I’ve been taking. It gets pretty expensive to take so many. I could have saved some money if I’d made the plan to reduce my consumption of them last week. For the ones I haven’t reordered, I plan to stop them as I run out. This means that by the time the next flare starts at the end of January, I may no longer be taking the last five supplements on the list above.

Bone Builders

As I’ve discussed several times on the blog, I ended up with osteoporosis as a result of Lyme Disease and the other tick-borne infections I have. Part of it was the very poor digestion. Part of it was my sex hormones tanking. Part of it was being on a steroid to raise my blood pressure. But the biggest issue was several years of being unable to walk or move around. Bed rest tells the body to stop building bones and instead mine them for their minerals.

So these days, as I’ve become more active, improved my digestion, stopped taking the steroid, and regulated my sex hormones, I’m doing my best to encourage my body to build up my bones again. I’ve consulted with several doctors about what supplements to take for this purpose and done a fair amount of reading on the subject. This is the regimen I’ve come up with. I take all the pills at one meal.

  • Calcium (250mg, once per day plus whatever is in the multivitamin)
  • Magnesium (200mg, once per day plus whatever is in the multivitamin)
  • Krill Oil (Twinlab cardio version, 625mg, once per day)
  • Vitamin D3 (4000iu, once per day)
  • Vitamin K2 (100mcg, once per day)

Sex Hormone Regulators

When I finally decided to address problems with my menstrual cycle, I discovered I had PCOS. I used metformin (a drug for insulin regulation, since insulin regulates sex hormones) for several years to treat it. Things got a lot better, with less illness during each menstrual cycle. I’m pretty sure the infections flared as my hormones fluctuated wildly, so regulating the hormones with metformin reduced the extent of the flare each month.

I started having new problems with my cycle earlier this year. I looked into alternative approaches to support my sex hormone system and cycles. I ended up with two herbs. The first one, Vitex, helps with progesterone regulation. It has already resolved the new problems I was having earlier this year, particularly with severe PMS. The other supplement, DIM, is a broccoli extract that regulates estrogen and seems like it might replace the metformin. I’ve been on it for about a month and a half. If it doesn’t work sufficiently after 4 months, I’ll consider other alternatives.

  • Vitex (PhysioLogics, 400mg, 1 pill once per day)
  • DIM (IndoleGard, 75mg per pill, 2 pills once per day)

Coiling and Supplements

I’ve read differing opinions on the internet about the use of supplements, herbs and antibiotics while also using a coil machine. I think that, in the end, if the goal is to get completely well and not need the supplements to function, eventually, one has to stop taking them before one stops coiling.

That said, I’ve been very considerate of my body’s needs. I didn’t stop taking the supplements for an ideological reason, because it reduces the amount of active bacteria in my blood, just to make the coil work better or faster. As my health has improved, I’ve stopped taking quite a few supplements, most recently Co-enzyme Q-10 earlier this summer. I took it when I had a lot of heart symptoms, as a way to protect my heart from damage caused by the infections and the toxins the bacteria produce. However, as my heart symptoms diminished, I stopped taking it. I have some on hand, in case the heart symptoms come back in the absence of all the antioxidants.

For now, I’m doing my best to eat well and ride the waves of symptomatic days and low-symptom days. The latter have increased in frequency over the years. Even as I provoke the Lyme to come forward by getting rid of the suppressing supplements, I feel confident that I’m on the right track…and that I can handle the next round of symptoms and herxes.

Disclaimer

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Somethings old, somethings new

Wednesday, March 20, 2013

I went on a trip at the beginning of March to the deserts of southern California with my husband. I took about 8 days off from coiling to go on the trip. It gave me time to think about lots of things while we drove down and back, as well as while we enjoyed the natural environment. Since then, I’ve been really tired. REALLY TIRED. It took about 10 days after we got back for me to have enough energy to write or do much of anything besides sit or rest. In fact, everything I did for those 10 days back required so much effort that I kept wishing I was lying down on the Biomat reading or listening to the radio.

The time when I came back also gave me lots of time to think. I have a sense of how sick I used to be, how much I’ve improved, and how much healing I have left to do. I have new perspectives on some of the detox methods I was using, on the role of probiotics and on the concept of chronic infections. I have a continued desire to coil until I get to the end of these infections, and a wariness that I may have more infections to deal with than the ones I’ve already tackled. I’ve had time to consider my future goals, activities and dreams, and experience the disappointment that I can’t just jump up and do them while I’m lying in the living room, too tired to move and too achy to concentrate.

Walking

While we were on our trip, we did a few hikes. Most of them were on flat surfaces, some sandy or rocky, some pretty well groomed trails. There were two, however, that posed major challenges. Both of these were near the visitor’s center in Anza-Borrego Desert State Park. Much of the park and the town, Borrego Springs, contained within it, are a flat desert area surrounded by small mountains. The space felt wide open, the opposite of the 5 years I spent in my small NYC apartment.

The first of the hikes was long and on uneven terrain. There were several other groups and pairs we met along the way. All of them passed us by. I started to feel like I was forcing us to move at a glacial pace. Joe didn’t seem to mind. As we meandered, rather than hiked, we had time to look at the flowering bushes with bees buzzing in them and spot birds that we heard. We stopped often for me to take photographs. It took us much longer than most people who were out that day.

Big Horned Sheep at Anza-Borrego

Big Horned Sheep at Anza-Borrego

There were benefits to going slowly and affording me time to stop and rest. We saw a desert iguana and a lizard. We paused for at least a half hour to look at big horned sheep. The longer we stayed still, the closer the animals came to us. I was pleased that I was well enough to take photos along the way. In the past, such as when I went to Italy, my energy was so stretched that I couldn’t even think about taking pictures, even when I was in a wheelchair. When I was walking with a cane, it was completely impossible. Even this past summer during my honeymoon, I couldn’t take pictures. It was beyond my capacity.

I was exhausted after the hike, but it was well worth it.

The second hike involved going up and down a hill. It was rocky. Going up hill was tiring, but relatively easy on my legs.  When I got to the point that I was winded, we turned around. I looked out at the huge expanse of desert and thought it was beautiful. And that it would be a really long walk from one end to the other.

That thought led to a memory of trying to walk down the hallway in the basement of my apartment. I used to take the elevator to the basement and walk out through the service entrance because I was too disabled to go up or down stairs. I had to walk about 60 feet to get out of the building. I remember stepping out of the elevator and getting discouraged because the distance I had to walk would take me 15 minutes and use up all my energy before I got in the car to head to the doctor’s office. Or in the reverse, when I got home, I felt like the walk to the elevator was so long I might pass out before I could get to my apartment. I used to get winded doing that walk.

Yet here I was, on the side of a hill, feeling triumphant.

Rose Hiking at Anza-Borrego

Rose Hiking at Anza-Borrego

Then I had to get back down. It was tremendously hard. My balance is totally fine on level surfaces and going up. Going down is very difficult, making me feel like I might tip over at any moment. Though I was scared, I slowly made my way down. I felt a sense of accomplishment at the bottom.

Needless to say, these hikes and the other walks I was on contributed to my requiring 10 days of recovery and rest. But the moments were more than worth it.

Resting

During the trip, I didn’t do any driving. I was too tired by the end of the first day, and I never recovered my energy. The rest of the trip, I was pushing through the fatigue to enjoy myself. It was worth pushing, but each day got a little tougher.

I often explain to people that I am like a cell phone with an old battery. It takes a long time to recharge. Then the charge wears out before the phone can do much. It is the fatigue that bothers me most. I keep believing that as I get better, the fatigue will diminish until I become like a regular person. If I get tired out one day, I want to sleep it off and wake up refreshed the next day.

Stamina is the predicate for all my other dreams.

Detoxing Foibles

Since I came back, I’ve been thinking about heading to the gym and hanging out for a while in the sauna. I’ve decided not to do it again for the time being. It was important to use the sauna when I first started coiling extensively for Bartonella. The pain in my kidneys was unbearable. I kept having visions of new kidney stones forming. (As far as I know, none have.)

Regularly heating my body enough to have big sweats removed some of the toxin load from my kidneys. I can’t imagine I would have been able to coil as much as I did and knock down the infection as much as I did without using the sauna.

But there was a downside. I’m pretty sure I suppressed the Lyme infection for much of the season. I didn’t intend to do that. In the moment, it felt so nice not to be saddled with fatigue for the rest of the day after going to the sauna. I remember thinking that if I just went, I wouldn’t feel so tired. The sauna gave me the expected result consistently.

As I’ve wallowed in the fatigue of the Lyme infection this spring, I’ve been a little angry at myself. I feel like I lost the fall season and not knocked down the Lyme infection as much as I could have. I’ve come to accept the trade-off (Bartonella reduction vs Lyme reduction). But now I’m very wary of heating my body too much. I’d rather suffer through the fatigue, even when it makes me feel depressed dealing with it for too many days in a row, and leave the Lyme bacteria in their active, susceptible form.

This is also the reason I’ve been reluctant to find an acupuncturist. I think that acupuncture has, in the past, boosted my immune system, and for several years kept all the tick-borne infections under control and significantly dormant. I don’t want to do that now. I’m trying to get the infections to activate and be killed off.

Probiotics

During the trip as well as when I came back, I couldn’t stop thinking about intestinal bacteria. As the Human Microbiome Project starts to release information from the studies it supports, it is becoming clearer that intestinal bacteria are a major component of and the first line of defense in the human immune system.

The first thing on my mind is that it is time to take some heavy-duty probiotics again. On Monday, I started taking VSL#3 again. I took it in March last year. Last time, it led to so much gas and bloating that I was doubled over in pain the first few days. The intended result was that the beneficial bacteria would populate my gut in sustainable colonies.

I knew it was time to do it again because I was having gut problems with the Bartonella die-offs and possible increase in their activity in response to the die-offs. I’m taking two capsules a day, so far, with the possibility of increasing to three after a week. The gas and bloating isn’t nearly as bad this time. I find this encouraging. I’ve also been looking at some other strong probiotic formulas with different species of bacteria in them. I’m planning on trying a few different ones over the next few months to get my digestive tract into the best shape I can.

That’s about correcting any intestinal microbial deficiencies I’m currently experiencing. I imagine that doing so will prevent the rest of my immune system from having to fight so hard against any new intruders. It will probably also help my body get the most nutrients out of whatever foods I eat.

There is a second piece to this puzzle. I have been wondering what I can do about other infections that have permeated my gut and gotten lodged in other areas of my body. For the most part, I think I will just keep coiling away at everything I know I have and try coiling infections I might have.

But for other people with chronic illnesses, ranging from autoimmune disorders to diabetes, I wonder if these are symptoms of infections that we don’t yet know how to detect. I’ve considered the possibility that our diets, our mercury fillings, our exposure to pesticides, chlorinated water and other pollutants, has imbalanced our intestinal flora enough that bacteria which are benign in our intestines end up permeating it and infecting our other cells and causing illness. The tools developed through the Human Microbiome Project may allow medical researchers to hunt for non-human DNA in fat tissue of diabetics, for example, to possibly discover a microbe that causes cells to become insulin resistant.

Those are my musings. I have no evidence that any of this is true, but these ideas lead to testable hypotheses for the medical research community.

Lyme Goals

Before I left, I started putting together what I hope will become a book about how to coil for Lyme Disease and other tick-borne illnesses. When I started this blog, my intentions were to keep a record for myself and to share my experience in a usable way with other people who are using coil machines. In the past two years, I’ve written over 350 posts, some with very useful observations and some that are about my day to day experience. Even I’m having a hard time finding old posts I know I wrote about a given topic or experience. I suspect it is much harder for someone who runs into my blog for the first time today!

I came up with two solutions to deal with the information I’ve gathered. One is to organize a few pages with links to posts about topics that are important to me. I imagine I might do this over the next month or two (or hopefully by the end of July!) The other is to write a book with a straightforward narrative of my experiences with the coil machine and sections about each of the illnesses I’ve worked on as well as the other things I’ve been doing to support my health. By the time I finish this post, I’ll have dumped out all the stuff in my head from the past few weeks and be able to focus on the book for a few days.

Long-Term Future

Right before I went on vacation, I went to my second Lyme Disease support group. It was so useful to be in contact with other people fighting the illness. First, it made me more convinced that I need to write my coiling book because there are other people who could learn from it, and it helps me clarify my thinking and explain better what I’ve learned. Second, the group got me thinking about babies, again.

My current plan is to keep coiling until I stop having flares. If this happens by the time I turn 40 (two years away), then great. I’ll consider having children. If I’m still regularly sick and regularly fatigued, then raising a child or children seems like a pretty bad idea. But if I’m relatively healthy when I’m not having flares, but still getting seasonal flares, then things get tricky. One of the women I spoke to reminded me of two things I’ve read in a few different places, and heard from women who had Lyme when they were pregnant. First is that while pregnant, they felt fully healthy again. Second, there are antibiotics that are safe during pregnancy that prevent the child from contracting any tick-borne illnesses.

It left open a possibility I hadn’t considered. I thought I left antibiotics behind forever (at least as a treatment for these chronic illnesses). Now the door is open again. My hope is that I can stop thinking about it for the next year or two. Then when I need to make a decision, I’ll consider it with fresh eyes.

Erlichia and Beyond

I have a list of tick-borne illnesses and other chronic infections associated with Chronic Fatigue Syndrome and Fibromyalgia. Of the tick-borne illnesses, I tested positive for Lyme, Bartonella and Babesia. Among the other illnesses, I’ve tested very positive for Epstein-Barr and HHV-6; I even took antiviral drugs before I found out I had Lyme Disease.

Mostly, though, I thought I would coil until I got rid of my three main infections and then go through the other ones to see if I felt even better by reducing the loads of any I might have until my immune system could take over.

Now I’m in a mild panic over the possibility that I might actually have a chronic Erlichia or Mycoplasma fermentans infection. The idea hit me when I was in the support group and someone started talking about bone pain. Not joint pain, but bone pain, as a symptom of Erlichia. When I looked it up in the differential diagnosis section of Burrascano’s Advanced Topics in Lyme pamphlet, I saw that muscle pain, as opposed to joint pain, was one of the key symptoms. Oh no. Bone pain comes and goes. But it has been getting worse as I’ve reduced the Bartonella and Lyme loads. For the past several days, my heels, shins and knees have been excruciating. Muscle pain has been worse as well. I’m afraid that a possible case of Erlichia is becoming active.

It scares me to think I’m going to have to start up on these other infections and go at them hard like I’m doing with Bartonella. I know less about them generally and even less about using the coil machine on them. I feel daunted by the task ahead of me.

Back to Bartonella

My best guess is that coiling twice a day will get rid of Bartonella. I don’t actually have to do the midday coiling to eradicate this disease. Amazingly, the herxes are getting less debilitating (though that could be as a result of Lyme activity and herxes counteracting some of the symptoms). I’m not awake all night anymore. That by itself makes everything better. I’m still getting light nightsweats most nights. I’m still having bowel troubles. I feel pretty sure I’m over the hump. I’m still coiling a third time per day most days. I think that the third coiling session is getting me to a better place much faster than just the two sessions a day.

I’m hopeful that I’ll get through this soon. Especially now that I’m worried about what else I may have to coil for.

Lyme Echoes

I’m regularly tired. My joints ache and pop all the time again. That much is clearly from Lyme. My last menstrual cycle was bad again. It seems that as the Lyme gets more  active, my hormones get all screwed up again. I’ve got high hopes that as I coil the infection down to inactivity again, my period will get close to normal again.

Some day soon, I hope to be close to normal again…

Disclaimer

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Diversions

Friday, February 15, 2013

Every now and then I remind myself that the reason for time is so everything doesn’t have to happen all at once.

I need this reminder because when I feel bad, I don’t want to do anything. Then when I am a little bit well, I run off and do too much. Then I crash.

In the days after my last post, I was pretty obsessed with insomnia. I had it really badly. I was restless all day. Restless, exhausted and unable to concentrate. Then I was restless all night, attempting to relax my body while unable to let go of full consciousness.

Magically, I started sleeping again. Well, not by magic. Two things helped out immensely. First, I started coiling for Lyme more frequently. Lyme herxes make me sleep a lot. Lots of hours. Very deeply. These are a great antidote to Bartonella herxes which make me restless and sleepless.

The other big helper was naps. I’d been trying to nap unsuccessfully. Then my husband lay down with me one day and rested his hand on my forehead. I’m not sure why this worked, but I fell into the first deep sleep I’d had in several days. Now we joke about the Vulcan death grip he uses to knock me out.

Having rested up, I then planned way too many things in a row. Mostly these were activities of half a day or less, but I could have used a rest day (or three) between each activity. I spent the rest of each day in bed before or after our activity. It started last Friday when we bought me a bicycle and went to dinner and a movie. (Warm Bodies was hilarious!)

Saturday we went whale watching in the morning. It was wonderful. I was able to stand for a long time, much longer than usual. Plus we saw a pod of Risso’s dolphins, a pod of common dolphins, two grey whales, a family of sea otters, and several pods of California sea lions. I think it is very healing to be around marine mammals. But I was sea sick enough in the winter swells that I don’t need to do it again. I’m happy to see the occasional dolphin pods from the beach.

Sunday we had a fun lunch and long walk on the beach with friends in Carmel. The beach was farther from the restaurant than I realized. I was sleepwalking by the time I got back to the car.

Monday was pretty disastrous. The seasonal Lyme flare made my menstrual cycle ugly: diarrhea, nausea, light-headedness, somnolence, overall weakness, cramps, and an emotional meltdown. I was glad that I had a good weekend behind me.

Tuesday, I was still recovering from the weekend and Monday’s mess. But I wanted to join my husband for a trip to the mountains. He was planning to ski. I was planning to people-watch, crochet, read, and enjoy the clear mountain air. We left in the evening. Wednesday, Joe skied. I hung out but was so overtired I couldn’t concentrate on anything. I enjoyed being up there, but not as much as I have in the past because I was exhausted before the day even began. (It didn’t help that as I was eating lunch outside the ski lodge, a chunk of snow fell off the roof and crashed onto my head, generating a headache I’ve had on and off since then.)

Yesterday I was still recovering from too much activity. Plus it was time to coil my body for Lyme. That mean two Lyme sessions in addition to the two daily Bartonella sessions. A lot going on, but mostly lying down.

It’s important for me to be outside. I think that I get stronger as I push my limits. I have yet to learn how to pace the activities so that I can enjoy them and recuperate in between. So this weekend, I’ll rest some more. If I’m up to it Sunday, I’d like to try out my bicycle, but no promises…

Lyme Flare

I can tell the Lyme flare is increasing. My joints are popping and cracking and aching every day. My menstrual cycle has gotten worse again. My muscles are sore for no reason, and more sore when I use them. I’m getting headaches, the dull kind that is slightly distracting. I’m sleeping more for a day or two after I coil. And my stools are loose, especially after I coil for Lyme.

I’m committed to coiling my full body every five days. This seems to be the sweet spot between letting the flare symptoms pile up and coiling too often.

Bartonella Herxes

As I continue to coil for Bartonella, I’m having more of the symptoms I had in autumn. The insomnia was getting intolerable until I started coiling for Lyme again. But even with a better night sleep, I feel tired a lot and restless. Strange dreams wake me often. I continue to have mild sweats most nights.

Bartonella has me dealing with irritated bowels. Before the Lyme coiling, which cleans me out, I was constipated and crampy. Now I’m going back and forth between the two extremes.

My urinary tract is also inflamed. I’ve had some mild pain in my back around my kidneys. It isn’t nearly as bad as it was before, both over the summer and during the fall. This time it comes and goes and isn’t too intense. My bladder is pretty irritated. I find I have to urinate frequently, and my bladder hurts when it is partially full. I have pain in my lower abdomen that could be from any of the organs down there, but I think it is referred pain from my bladder.

I’ve got a lot of tingling and roving nerve pain, mostly in my extremities (hands and feet). Then there’s the new acne outbreak, on my butt, of all places! I’ll be glad when I don’t have Bartonella anymore.

I’ve been doing two coiling sessions, morning and evening, almost every day. I actually missed one on Saturday to go whale watching. I missed another when we went to the mountains. When I can’t do the full coiling, I make sure to do 10 minutes over a blood rich organ to keep the infection load from increasing too much.

I’m nervous about adding the third session, but I know it must be done. I keep thinking that I need my detox plan better executed to do it. But I also know that the best motivation to prioritize detoxing is to suffer from a day of herxing. Maybe this weekend…

Detox Tribulations

I’ve managed to juice 3 times in the past two weeks, meaning I had 6 days of juiced greens. It was too hard to do things outside the house and still have enough energy to spend an hour on my feet to do the juicing. When I did drink juiced greens, I felt better. This weekend, it is on the agenda again.

Meanwhile, I’m thinking about the sauna and the gym again. I’m sure the sauna would help with the kidney pain, as it has in the past. It has also been good for the tired, restless feeling that I have with Bartonella herxes. I went once two weeks ago. I’m trying to make a point to go back.

For heat, I’ve instead been using the Biomat, which helps me relax in addition to working up a sweat. When I recently convinced myself to do a half hour of yoga, I felt it in my arms and chest for days. Finally it occurred to me to take an epsom salt & dead sea salt bath. Wow, I could feel the difference within 10 minutes. It was great for detoxing. My muscles felt better. So did my joints and my kidneys.

I’ve heard from people less sick than I’ve been that they coiled and suffered and got well without detoxing. I suppose it’s possible, but not the best idea. I’d rather use my energy to go out and play, but since my goal is to get rid of these infections, I keep coming back to detoxing. When I detox, I can coil more aggressively and see more obvious results. (There, I hope I’ve convinced myself to juice and head to the sauna this weekend!)

Disclaimer

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Return to Juicing

Friday, February 1, 2013

I write about juicing from time to time because it is both the best way I’ve found to detox and the hardest to do regularly. Somehow I managed to make a big batch yesterday, enough for today as well. So why juice?

Benefits of Juicing to Detox

I say that juiced greens are the best way to detox because they are filled with nutrients that build up the human body while also containing elements that clean out the blood, liver and intestines. Who could ask for more? Unlike other detox options, like colonics, it doesn’t deplete minerals or upset the digestive tract flora. Unlike diatomaceous earth, clay or Welchol, it doesn’t cause constipation and gas. So I’m a big fan.

I’ve even learned to enjoy the taste. Back when I started drinking juiced greens, I added apple or carrot to sweeten it. Then I discovered I was having a reaction to each of those ingredients. For a time, I added stevia to sweeten up the concoction of lettuce, kale, parsley, celery and cucumbers (and dill or cilantro or arugula), with some lemon squeezed in right before I drank it. Then one day I forgot to add the stevia. Surprisingly, I enjoyed the flavors. I discovered that I didn’t need sweetness to make it okay. Now I’m fine without it.

There is a particular kind of thirst I get that seems unquenchable. Only juiced greens can satisfy my thirst.

Why I have a hard time juicing

Juiced greens are difficult for me to work into a regular routine. I go to the store with the best intentions, purchasing enough for 2-3 double batches. Then I get home and don’t want to spend close to an hour prepping the vegetables, doing the juicing, and cleaning the machine before I have the green gold in hand. I assume it will be easier now that I have more energy than before…even though I want to use my energy for other more interesting activities.

The other downside to juiced greens is the expense. A 12 ounce glass of juice comes to almost $4, even when I make it at home. It makes all the other pills and things I take seem rather inexpensive. I hate taking pills, but they are easier and cheaper than juiced greens. Yet the greens call me back over and over because they work.

Juicing Regularly

When I lived near my mother, she got into juicing, too. She often made enough for both of us. When I was drinking juiced greens several times a week, I felt better. My symptoms lessened in intensity. I felt more clarity of mind. My intestines were happier than I’ve come to expect. I want that again as I tackle Bartonella. So I’m trying.

Lyme Activism

Although I’ve chosen not to use antibiotics anymore, for most people with chronic Lyme, antibiotics are a lifeline. More importantly, as I’ve read the medical literature (what gets sent to physicians in their professional journals), I’ve discovered that they know that they will miss at least 40% of the positive acute cases using the IDSA guidelines, yet the publications offer no other ways to diagnose this debilitating illness. The IDSA guidelines prevent people from being diagnosed and prevent them from receiving adequate treatment even if they meet the diagnostic criteria.

Right now, and until February 10, there is a petition to President Obama asking him to take action to reform the IDSA guidelines. I’ve signed it. If you have Lyme, or know someone who has or might have Lyme, or just care about the issue, I encourage you to sign the petition.

Coiling Update

I’ve continued to coil my entire body for Bartonella the last two days. New symptoms include cold hands and feet (which I didn’t realize had diminished when I returned from NYC in January) all the time, changes in my vision (not being able to focus both eyes at the same time, more prominent floaters), restlessness and increased energy (good for juicing!), tingling in my arms, pain in my elbows and wrists, swollen glands in my neck, and irritability. Sleep is good one night , then not so good the next.

The thing is, I don’t look well. I look tired, with dark bags under my eyes. I feel achy and it shows on my face. I’m tired but I can’t settle down. I feel motivated, and I was able to concentrate yesterday, but today I’m having a harder time of it.

Meanwhile, the Lyme bacteria continue to wake up. Two days ago, I coiled my whole body for Lyme. Then last night, I started to feel pain in my hip bursae again. This morning, I had pain in my sacrum in addition to the bursae. As the day progressed, my knees & ankles started to ache, too. So I’m coil my sacrum, bursae and knees today to kill the Lyme as it comes out of the cyst form. No need to suffer when I can take care of it with the coil.

Disclaimer

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Climbing Slowly and Carefully

Wednesday, January 23, 2013

I started this round of Bartonella slowly. I learned in the autumn that the infection seems to be primarily in my central nervous system, i.e. my brain, and that coiling my head leads to herxes. The herxes are different from the ones with Lyme. I’m pacing myself this time, not rushing into it to get it done with sooner, but respecting that my body is stronger and my desire to do things every day is actually part of the healing process.

Bartonella Coiling Record

I started coiling for Bartonella on January 11, while I was still doing a full Babesia session three times a day. So I started slowly, not wanting to suddenly suffer from both. When it was clear, by January 14, that I wasn’t having a reaction to the Babesia coiling, and I had no kidney pain, I began to increase. My last day of coiling for Babesia was January 17. I’ve been focused exclusively on Bartonella ever since then.

The way I’ve been deciding when and how to increase the coiling routine is straightforward. I see how much pain I’m in each morning. If it is a moderate level, I increase by two minutes that day. If I feel a lot of pain, grogginess, fatigue, malaise, constipation, etc., I stick to what I did the previous day. Once I’ve reached the point where my entire head and abdomen are being coiled every day, I’ll add in my legs and hips in short order.

Bartonella coiling, 832 Hz

  • January 11: abdomen 5 mins, chest 2 mins
  • January 12: abdomen 5 mins, chest 2 mins
  • January 13: abdomen 5 mins, chest 2 mins
  • January 14: abdomen 5 mins, chest 2 mins, back of head 2 mins
  • January 15: abdomen 5 mins, chest 2 mins, back of head 2 mins
  • January 16: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min
  • January 17: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min
  • January 18: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min
  • January 19: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min
  • January 20: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min, upper spine 2 mins
  • January 21: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min, upper spine 2 mins, each shoulder knob 1 min
  • January 22: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min, upper spine 2 mins, each shoulder knob 1 min
  • January 23: abdomen 5 mins, chest 2 mins, back of head 2 mins, each side of head 1 min, top of head 1 min, upper spine 2 mins, each shoulder knob 1 min, middle spine 2 mins

Physical Reactions

The main reactions I’ve had to coiling for Bartonella so far are:

  • insomnia: hard time falling asleep, frequently waking, unpleasant dreams
  • fatigue all day, reaching the point sometime after lunch when I need to lie down (and hope to nap)
  • hand and foot pain upon waking, covering the whole extremity
  • back pain in the morning that lasts for several hours, mostly in the muscles adjacent to my spine, pain of higher intensity lower in my back
  • headaches in the afternoon or evening, so far moderate intensity
  • pain in my spine (the actual bones) in my upper back
  • pain in my knuckles
  • bowel irritation – some loose, some hard, some mucus, some cramps, some gas, not yet as bad as it was in autumn
  • restlessness, i.e., wanting to get things done around the house even when I’m tired
  • heat at night; two nights ago I had a very light night sweat that I didn’t realize was a sweat until I got up to go to the bathroom and cooled off
  • bladder irritation

Although the list is long, the symptoms are not yet causing extreme distress. In fact, I’m still doing something every day. Today required a long nap which recharged me and got me thinking about how to tackle these symptoms as they increase.

Managing Symptoms

I’ve said before on this blog, but must remind myself over and over, that the best way to reduce symptoms (of flares and herxes) is to detox sufficiently. To that end, I’m back to drinking kombucha daily and spending at least an hour on the biomat each day. I’ve increased Renavive (kidney detox) to 1 pill twice a day, and milk thistle (liver detox) to 300 mg daily. Tomorrow, I’m headed to the sauna, because I remembered that I had more energy after a good sweat and slept better that night, on sauna days this past autumn. Then I’m pulling out the juicer again. I may not start until the weekend, but I’m hoping that with some extra energy and determination, I’ll be drinking juiced greens several times a week starting next week.

The other piece I’m trying to figure out is some kind of exercise at least twice a week, and building up as I can handle it. I’m thinking that the night sweats I’ve had in January have occurred on days when I did some extended physical activity. For example, the big night sweat in Yosemite was on the day that I walked around in snowshoes for an hour. I sweated a lot during the hour (even though I was going slowly), then I sweated again at night. Monday night I had the light sweat at night following a walk on the warm, sunny beach, where I sweated as well.

It might be that increasing my body temperature and circulation through exercise will help clear out the Bartonella toxins. The only thing is that exercise during the day when I’m already overtired makes it hard to fall asleep at night. So I’m going to try to do this in different ways and figure out how to make exercise work for me.

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Bartonella Round 2

Monday, January 14, 2013

I’m gearing up to use the coil machine to obliterate my Bartonella infection. I’m not sure what will be different than when I started up in the fall, but my intention is to coil more frequently over my whole body until it is gone, gone, GONE!

The first difference between now and autumn is that the Babesia infection seems to be dormant. This is important because to get rid of the active Babesia, I had to coil twice a day for at least 23 minutes each time plus 10 minutes in the middle of the day. That cut into my ability to use the coils for doing Bartonella.

Bartonella Plan

I’m starting by adding in a kidney cleanser, Renavive, even before I reach the full coiling program. Last time, my kidneys hurt a lot as I got into the swing of killing Bartonella, so I’m doing my best to support them. Sometime next week, when my chest cold is completely gone, I’ll start going to the sauna a few times a week, since that reduced my kidney pain during the last Bartonella coiling cycle.

Meanwhile, I’ve decided to keep taking a liver detoxifier, milk thistle, at half the dose I was taking during the coiling break, to support my liver during the Bartonella die-offs. Since my first attempts at coiling for Bartonella, I’ve struggled with constipation. From talking to other people who have coiled for Bartonella, it seems that constipation is part of the Bartonella herx.

In addition to the milk thistle extract, I’m trying to figure out what to do to keep my intestines in good shape. The most important things seem to be lots of fluids, a fair amount of fiber such as psyllium husks (as well as salads or maybe fruit), and some exercise. The first two just require me to pay attention to what I eat. That’s easy. The exercise is good for lots of reasons, like rebuilding my osteoporotic bones and sleeping well. But in the past it’s been really difficult to exercise because I tire out so easily…and for days at a time after I exercise. I’ll take it slowly to start out with. And with any luck, the lack of active Babesia infection, which caused pretty severe fatigue, will allow me to exercise more regularly than I have before.

To keep my blood clean, which allows the rest of the systems to work, I plan to begin juicing again. I’m hoping that with the energy I get from not dealing with Babesia, I’ll be able to juice several times a week.

In terms of coiling, the plan is to build up one day at a time. I’ve done my abdomen for 5 minutes and my chest for 2 minutes for the past few days. Today I added in the back of my head for 2 minutes. So far, so good. Over the next week to 10 days, I plan to increase the amount I’m coiling until I cover my entire body once a day. I’ll stay at that pace until my body can tolerate the herxes. Then I’ll build up to full body coiling twice a day. I’ll do that until a few weeks after the herxes stop altogether and my various symptoms (including the food sensitvities) go away.

Tolerating the herxes means that the kidney pain goes away and that I have a system in place to keep my bowels moving. I’m not sure what else I’ll have to deal with as I increase the Bartonella coiling, but I’ll want to figure out how to keep detoxing enough to prevent the symptoms from coiling enough to get rid of the infection. Other symptoms I anticipate are extreme emotions, tingling and neurological pain, pain in my hands and feet, vagus nerve agitation (mostly seen during my menstrual cycle), tension headaches, muscle cramps in my back/shoulders/neck and changes in sleep. We’ll soon find out if my previous experiences correctly predict what comes next or if I’m stepping into uncharted territory.

Babesia Update

I haven’t really had Babesia symptoms at all since I got back to California. Even the light sensitivity went away. This puts me in a funny spot because I want to stop coiling for Babesia as of today. But I promised myself I would do a few weeks after the symptoms went away.

Since I’ve had no herx at all, no night sweats or anything, even as my menstrual cycle started (which is usually when the night sweats are the worst), I’ve struck an internal compromise. I’m doing 7  days of the full Babesia coiling protocol, then if nothing changes, I stop. Then, at the first sign of light sensitivity, night sweats, multi-day fatigue or recurrent nightmares, I’ll start up again.

If something changes after I stop coiling, I’ll go back to coiling full throttle for a few weeks. But I’m hopeful that I’ll have a few months to focus on Bartonella.

A Quick Run

I didn’t run fast, but I did run for about 90 seconds today. It isn’t much, but when I run, even for a few seconds, I feel like I’m flying. It’s a good feeling to have.

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Coiling Break

Tuesday, December 18, 2012

It’s official. I’m taking a vacation from coiling for just over three weeks. I’ve got a few other plans, things to try in the meantime, but no coiling while I’m on the East Coast visiting my family and friends.

Before I Stopped

Since I knew I was going to stop, I did some extra coiling. I coiled for Lyme every 5 days for the last two weeks before I stopped. I was coiling three times a day for Babesia. And I continued the daily full body scan for Bartonella.

But I was still a bit nervous about stopping. I got in touch with someone who has been coiling for longer than me to see if she had any advice. She took a one month break last year and said it turned out okay. The symptoms do come back. There is more herxing than there otherwise would have been when starting up again. And it postpones the day on which one is finally DONE (as in healed of the infections and finished coiling forever). But life happens and it’s okay to take a break when needed.

I sucked up my courage and left the coil machine behind when I left for my winter vacation. There will be other times that I have to take a break because of travel or other life events. I’m committed to limiting them so the coiling process doesn’t go on and on forever without me getting fully well. And there will be times when I don’t need to coil because the infections are dormant. That’s a different situation, and one that I hope to be able to take advantage of.

My last day of coiling was December 12. I’ll start up again January 5.

Infection Status

Lyme

When I left, I was having lots of residual detoxing, sort of a clean up after the herxes of the previous weeks. Mostly it was the Lyme-smelling urine that made me realize I was still getting rid of Lyme toxins. What I learned earlier in the process of coiling for Lyme is that it can take up to 2 weeks for my body to get the last bit out through my kidneys. Otherwise, I was doing okay on the Lyme symptoms. The only thing is that I’m still having a reaction to changes in the weather, with changes in the air pressure and humidity making my joints hurt. (Eating bread, which I couldn’t resist one night, also gave me several days of aching joints.)  All in all, I think the Lyme is pretty close to dormant, as I expect at this time of the year after a full coiling season.

Babesia

The Babesia infection is definitely NOT dormant. When I did my little test by not coiling for a day, I had a return of nightsweats and bad dreams. Those have both returned since I stopped coiling a few days ago. I’ve also noticed a slight increase in light sensitivity. I haven’t begun to suffer from serious headaches or extreme fatigue yet. I’m hoping they don’t start until January.

Bartonella

The biggest change is with the Bartonella infection. I’m pretty sure it isn’t over yet, in part because my intestines have been perpetually irritated (gas, constipation) and my lower abdomen hurts regularly. I was still getting a buzzing feeling in my feet and lower calves, sometimes even in my hands. But I’ve been able to eat small quantities of previously forbidden foods with less reaction than any time since before 2007. That is a huge deal for me. The other big improvement is in my menstrual cycle. I had cramps and fatigue, but the other symptoms (vomiting, diarrhea, muscle weakness, chills, sweats, shakes and low blood pressure) were non-existant this month and last month.

Unfortunately, I can feel some things sliding back pretty rapidly. First, my intestinal problems have swung in the other direction, and I have loose stools again. Second, my bladder is irritated, making me feel like I have to urinate all the time, and has been cloudy for no obvious reason. If these are the only symptoms that returns in the next few weeks, I can live with that.

While I’m not coiling…

I decided to try two things while I’m not coiling. First, I’m doing a gentle liver cleanse (300 mg of silymarin or milk thistle per day). I’m hoping to clean out more toxins that have built up during the autumn Lyme coiling season and the first real attempt at killing the Bartonella infection.

Second I’m taking enzymes (Serrazimes, 2 pills) in the morning on an empty stomach. The enzymes are supposed to break through any biofilms in my body, exposing the Lyme and Bartonella bacteria to the blood stream. I’m not sure if this will make the coiling more effective when I start it up again, but I don’t think it will have a negative effect. The one question is whether they make me start herxing and might put some of the Lyme bacteria into a cyst form. If I do start herxing, or maybe milder than herxing but having any localized reactions, I’ll know where to coil extra when I start up again in January.

Meanwhile I’m taking a break from Renavive, since I’ve been on it for almost a year. I worry sometimes that it will lose its efficacy if I take it all the time. So I’ve stopped it until I begin coiling for Bartonella again, because Bartonella seems to be the biggest strain on my kidneys.

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