Archive for the ‘iatrogenic complications’ Category

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2015: The Year of Bartonella

Wednesday, January 7, 2015

I’ve recently returned from a Christmas trip to visit my sister’s family. As usual, the visits are markers of how much I’ve healed. This time, I carried my almost 40 lb. nephew up and down the stairs. I remember when he was an infant, 3 1/2 years ago, I struggled to climb the stairs on my own. I was so unstable on my feet, I was afraid to carry him around the house. Now we play and rough house, I pick up both him and his younger sister. It was a beautiful moment, when I had carried him to the top of the stairs, to stop for a moment and realize how much I’ve ascended in this time.

I'm in the back, with my sister and her children. My nephew is wearing a sweater I made for him, my neice, a hat.

I’m in the back, with my sister and her children. My nephew is wearing a sweater I made for him, my neice, a hat I made for her.

I have a few ideas for today. First, I want to share what I’ve been up to for the past month, since I haven’t posted an update for way too long. (I feel “blog-stipated”!) Then I’ll do a review of what I thought I was going to do in 2014 and compare it to what actually happened. Finally, I’ll share my plan for 2015.

December

The first week in December was towards the end of my concentrated Babesia protocol (which I’ve written about in the past few posts). I had a few last, mild symptoms: a visual aura that lasted about a minute, one last day of total exhaustion. By the second week, I didn’t have any more Babesia symptoms that don’t also overlap with the other infections. My energy was really good. In fact, the reason I didn’t blog was because I was so focused on doing things in preparation for Christmas. For the first time ever, I sent out cards before Christmas. I made gifts for my niece and nephew, as well as my husband. I had a big list of things I wanted to finish before I left for Virginia. I accomplished almost all of them.

What I realized, however, was that even with the Babesia, and, actually the Lyme, infections both becoming asymptomatic, Bartonella was still giving me problems. I coiled for Bartonella a few times in December before I left on my trip. I herxed a little with each coiling session, with the usual symptoms: hot night sweats, night heats, constipation, acne, tingling in my extremities, and, worst of all, kidney pain. On the days I coiled, I also got tension headaches that started in the back of my neck and grew in intensity until they reached the top of my head. Massaging the muscles in my neck and scalp helped relieve the pain part way.

The thing I was still worried about was the funny sensation in the left side of my neck and light heart palpitations. Between my heart and my kidneys, I had an idea about protecting my organs from further damage and healing whatever damage they may have suffered. I let it percolate.

There was something else that I learned which sent me into a tail spin. A friend from my Lyme support group mentioned that she had been “floxed” by Levaquin. She explained it to me four or five times between September and December. She talked about the FDA warnings on Cipro, Avelox, and Levaquin, that include tendon rupture and sensory-motor neuropathy in the arms and legs. I finally decided to look it up. It’s right there on the FDA website and on the current Cipro package insert.

When I read the description, I was yanked back in time to April 2007, when I started having extreme sensitivity in my legs, followed by an inability to move my legs without external assistance (like using my arms to move my legs). I was having problems before the course of Cipro, but things got much worse afterwards.

I began to read more and more about flouroquinolone toxicity. It was even more depressing than when I began researching Lyme Disease years ago. The short answer is that there is no known way to reverse the symptoms, but a few people have recovered by doing many of the things that we do as complementary treatments for Lyme Disease. These included high protein diets, other dietary restrictions to foods that become symptom triggers, saunas, supplements, etc. I realized I had done all these things.

And yet I’ve had a nagging feeling throughout 2014, that there was something left that I hadn’t resolved, something beyond the three tick-borne infections I’m aware I have. I thought it might be another infection. Now I’m wondering if it is flouroquinolone toxicity from the Cipro and later courses of Levaquin. I won’t be taking either one of those again. But how do I get well, assuming that these are the cause?

As I kept myself up at night pondering this new-to-me information, I realized that I didn’t know for sure what happened in 2007. I do know that a lot of my neurological symptoms didn’t respond to the Lyme-appropriate antibiotics I took for three years starting in 2008. I also remembered that the only thing that made a difference the first year, before I knew about the tick-borne infections, was Chinese herbs. I hated taking them. I didn’t know what a herx was, but I had a big one with the herbs. I felt like I was being poisoned. I guess I was, only not by the herbs but by the dying bacteria.

The Chinese herbs I use, and would recommend to a friend, are offered by practitioners of Traditional Chinese Medicine and are targeted to the the person. I don’t recommend Lyme formulas of Chinese herbs. I respect that the herbs are used in a way that is independent of the Western diagnosis and more targeted to the patterns of dysfunction in the person’s body. I learned that many different herbs have overlapping functions. There is more than one herb or one formula of herbs that can address tick-borne infections and help rebuild a sick body.

But this is a blog about coiling. So I’ll get back to that. I decided to do a course of Chinese herbs, for somewhere between a week and a month, to try to give a boost to my liver, kidneys, bladder, intestines and heart, all of which are strained by the years of illness, and all of which are going to be further taxed as I once again coil aggressively for Bartonella.

I went to Virginia on December 16. I had a fabulous time. I caught a terrible cold, from which I am not quite recovered. Even with no coiling and a bad cold, I had a more than reasonable amount of energy (until I had two nights when I didn’t sleep because I was coughing every 20 minutes). I had some neuropathy, especially in my left foot. I was more okay than I’ve been in years.

The herbs arrived by mail on December 22. I took them for 4 days, until I reached my practitioner, who said to wait until the cold was gone, since I would need a modified formula. I restarted them on January 5, since I’m just dealing with the remnants of the cold.

Here’s the deal with the herbs: they make me herx for Bartonella.

I have such mixed feelings. I don’t want to do anything that is going to generate more dormant Bartonella microbes that I will have to trigger later in order to kill them with the coil machine. At the same time, I feel like my body is telling me that I need to do something to strengthen my insides to prepare for the big Bartonella herxes I expect to experience once I start coiling again. It isn’t very scientific, but the Chinese herbs feel like the right thing to do at this moment.

I’ll start coiling again before I finish the herbs. However, I’m only taking the herbs right now so that I can understand what they are doing (which turns out to be the same kind of Bartonella herx I experienced from coiling at the beginning of December, only worse), and not confuse it with what the coiling does.

All that being said, the days seem so long. When I’m not coiling three hours a day, I feel like the days are more than three hours longer! It’s amazing how much a person can do with three more hours in a day.

2014: Triggers, Tribulations and Triumphs

Last year was supposed to be the year that I overcame Bartonella. I made progress. I coiled for Bartonella pretty aggressively for the first half of the year. The biggest difference I felt after that was fewer tension headaches (and fewer headaches generally) less tingling and static in my limbs and nervous system. Neither is completely gone, but both are less frequent, less intense, and shorter duration than they were in January 2014. I expect them to come back with the Bartonella herxes, but hopefully, they’ll still be smaller than before.

Things got side-tracked, however, by some competing goals. In autumn 2013, I was asymptomatic for Lyme and Babesia, so I began reducing my supplement program down to the bare minimum. I was on several different antioxidants and lots of vitamins. As I stopped each supplement (in a process that took more than two months), I had a short flare of symptoms. By coiling aggressively for Lyme and Bartonella, the flares ended and I could try stopping the next supplement. At the end of the process, I was no more symptomatic than when I was on all the supplements. I wasn’t asymptomatic, but I wasn’t any worse. Plus, I think the process allowed some amount of Lyme cysts to wake up, allowing me to kill them off and reduce the dormant load in my body.

Later that autumn, I began a program of reintroducing foods to which I had developed sensitivities back in 2007 and 2008. It was a useful series of actions. Each new food triggered symptom flares, mostly Lyme and some Bartonella. As long as I kept coiling aggressively for both infections, I made progress. I still know that the Lyme infection is active when I get pain in my ribs from eating wheat. However, even that has gone away since November. Now, most of the time I can eat any food I choose. The exception is still eggs.

In January and February 2014, I tried tiny amounts of baked eggs in cookies. I ate the cookies no more often than every 1-2 weeks. I triggered flares of Lyme, Bartonella, and though I didn’t initially recognize it, Babesia. I was okay, no auto-immune attack of my peripheral nervous system, as long as I was coiling for Bartonella and consuming boatloads of probiotic pills and foods (including unpasteurized milk which I consumed with each cookie). I stopped at some point, however, because I had other things to try and I didn’t want to push my luck.

At the end of February, I had my first of a series of vaccinations that I needed for a trip to Mongolia over the summer. The idea was to get the vaccines early enough that I could recover (using the coil machine) from whatever symptoms they caused by the time the trip came around. The vaccines triggered all three infections and caused some symptom flares. However, until I got a Tdap, the flares were minimal and easily treated by coiling for Lyme and Bartonella. The Tdap triggered the Babesia infection in a much bigger way. It took me a while to realize that Babesia had also been triggered.

Once I identified the Babesia flare, I was resistant to doing a full Babesia protocol. It was time consuming and competed with my plan to eradicate Bartonella. Hmmm. Not the wisest choice. The result was that I prolonged my own agony. I lost 6 weeks in the spring, laid out in bed because the Babesia was so bad. I was so tired that I felt like I needed to lie down, even when I was already lying down. Even worse, the Babesia was still slightly active when I went on my big vacation. By the time I got back, I had another flare (which coincided with a respiratory infection), and lost another 5 weeks of my life.

Having learned from that mistake, I spent several months in autumn focused almost exclusively on Babesia, coiling two different frequencies, three times a day. The Bartonella infection had to go on the back burner and wait. Babesia is easily the biggest drain on my energy and increases my perception of the symptoms of the other infections.

I feel like I won against Babesia. I’m not sure it’s gone forever. But using two frequencies and changing the protocol somewhat, I had a different outcome when I stopped coiling. In the past, when I coiled for 3 weeks past the last symptom, I would have a week of sheet-drenching night sweats after I stopped coiling. Then the symptoms would be gone for 8-12 months. This time I didn’t have any night sweats after I stopped coiling. The first light night sweat started with the Chinese herbs, over a week after I stopped coiling for Babesia, and is likely from a Bartonella herx.

I’m not quite ready to announce that the Babesia is in remission. For now, I’d say that I’m asymptomatic. If it doesn’t come back for a few months, I’ll consider that remission.

I’m also asymptomatic for Lyme. This has often happened in the winter. I expect at least a minor flare (and hopefully not more than that) at the end of January.

2015: The Year of Bartonella

Unlike this time last year, I don’t want to trigger the dormant Lyme and Babesia. Instead, my goal is to get to the point that I become asymptomatic for Bartonella. The goal this year is to cease being disabled by these infections.

The plan, so far, is to take Chinese herbs for a few more weeks. Then I’ll coil for three hours a day on Bartonella for as long as I need to. I have the protocol I used last January, though I expect to make a few changes (like adding in my neglected right kidney). I’ll do it for as long as I can. I’ll do whatever I can to support my body’s detox process. And then we’ll see how long it takes.

In the process, I suspect I’ll have to do some Lyme coiling. The plan there is to take it down to zero symptoms as quickly as possible, once the symptoms start again, so that I can get back to my Bartonella focus. The same is true if the Babesia symptoms return.

If it makes sense given the state my body is in this year, I’d like to start an exercise program. Short of that, I’ll settle for daily walks and occasional yoga. When the Bartonella is gone, I may revisit Chinese medicine to see if there is anything I can do to rebuild or repair my organs after the stress that the Bartonella herxes will put them under.

I’m focused and ready. My 4th anniversary of coiling in on February 4th. When I started with the coil machine, someone told me that it is possible to completely cure oneself of tick-borne illnesses with 5 years of coiling. I intend to make this next year my last.

Disclaimer

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(Un)Happy Hormones

Monday, December 9, 2013

Gaining Weight

I went for a run and walk last Sunday (12/1). I had a much harder time than I’d been having on previous runs. Usually, the thing that limits how far I run before I slow to a walk is my breathing. It gets difficult, so I slow down and walk. Not this time. My lungs and bronchi were fine. My knees began to hurt early on. I felt like I had passed a point in all this weight gain where now it bothers my knees to hold up the extra body mass. For the first time, I could feel my thighs and butt jiggling. It was unexpected and disconcerting.

I spent the next few days thinking through what is going on with my weight. I weighed less than 130 pounds when I got married in August 2012. I felt like I was too thin, even though I kind of liked the way I looked and even though my abdomen was frequently swelling up.

As I coiled more for Bartonella and as the Lyme seemed to get less intense, I put on some weight. By spring, I weighed 135 pounds, which in the past has been my sweet spot. At that weight, I feel like I’ve got meat on my bones, my skin doesn’t seem so thin, and my body is comfortable.

In May, I started taking Vitex, an herb that helps regulate progesterone. A month later, I stopped taking Metformin, which increases insulin sensitivity, and as a result helps balance sex hormones. Since then, my weight has climbed slowly and steadily to 160 pounds.

I expected to gain some weight during the transition off Metformin. Many people lose weight when they start it. I was one of them, but everything back then made me lose another pound or two. Some people gain weight when they stop taking it. I figured I’d add another 5 pounds or so, temporarily, as my metabolism adjusted. Instead, I’ve been gaining 4-5 pounds a month, every month.

Body Positive

After so many years of being sick, I have a different relationship to my body than many women do. As a white woman in the US, I have all the cultural recordings about how being thin is more attractive. In fact, I used to console myself, back when I was underweight and frail, that at least I looked pretty good naked. For the first few years after I got sick, I didn’t purchase new clothes to fit my shrunken size, partly because I was too tired, but mostly because I assumed I would go back up to 135 pounds as soon as I started feeling well again. Wearing oversized clothes works because I could add a belt to pants that were too big. It isn’t so easy now that I’m bigger than my clothes because I can’t even get my pants on.

Gaining weight pushed my buttons at first, feeling like that skinny beauty was slipping away. In reality, when I looked in the mirror, I saw I had become stronger and sturdier. My skin wasn’t so thin. I didn’t feel like every bump and bruise hit my bones and nerves. I had a more normal amount of natural padding. Over the course of last winter, I felt like I had rounded out to a nice level, and that I would be happy at that weight.

Since June, I’ve been a little concerned. Sometimes I had to talk to myself, reminding myself that I am beautiful at any weight. I see this is true about the women I’ve known throughout my life. I was distressed by the new wardrobe restrictions, but otherwise, I could see my body was doing okay. Most of the weight was around my butt, hips and thighs, though in September, it started to become more noticeable on my abdomen as well. Each month I would tell myself, as soon as my weight levels out, I’ll get a pair of jeans that fit. Only, the number on the scale kept climbing.

Despite the weight gain, I’ve gotten stronger and had periods of higher endurance. I was able to carry my niece around and play with my nephew when I visited them. I was able to take long, slow hikes. I went for a few run/walks. So I was proud that my body had made it through so many years of chronic debilitating infection, and it was finally starting to work normally again.

The emotional give and take ended when I saw 160 pounds on the scale. I haven’t weighed this much since I was on a psychiatric drug for depression in my early 20s, one that can cause significant weight gain. For me it meant that I gain 50% of my starting weight, topping out at 165 pounds. Sometime after I stopped the drug, the weight came off effortlessly, as though my body found a new equilibrium in the absence of the drug. My recent weight stopped me in my tracks and made me think about how quickly and steadily I was gaining weight, and I started to wonder if something was wrong that I needed to address.

Hormonal Questions

Once I began to mull over the rapid and steady weight gain, my first thought was hormonal. My first question was: did my thyroid stop functioning properly? I’ve read a ton about how chronic illness can lead to hypothyroidism, which makes it a good place to investigate. But even more salient for my life, several women in my extended family have hypothyroidism usually starting in their late 40s, as they become pre-menopausal. I’m a decade early for that, but given my medical history it’s on my list.

But once I thought about hormones, I made the connection between starting Vitex to reduce PMS and help regulate my period, and beginning to gain weight rapidly. As I mentioned above, I had gained some weight after I got married, mostly because I started eating grains after 5 years not eating any. I put on 7 pounds and landed at the weight my body usually functions best at. Then I stayed at that weight until June, a few weeks into starting Vitex.

First, it is worth noting that Vitex helped at the beginning. I was just starting to show signs of low progesterone, with prolonged PMS, including cramping, fatigue and sore, swollen breasts, most of which started a day or two after I ovulated. It wasn’t fun. The month I started Vitex, it all went away. In fact, I didn’t have PMS lasting more than a day until my current menstrual cycle. A few days after I ovulated this month, breast pain and tenderness started. It hasn’t stopped yet.

Just as I hit the high weight mark, the Vitex seemed to stop working. So I did some research. First I looked at what excess progesterone can do, excess weight was definitely on the list. Then I read about other forms of increased progesterone, including birth control pills and patches, and progesterone creams. It seems that too much progesterone can cause similar problems to not enough progesterone. Then I remembered a recent news story that said that the low-dose progesterone only birth control pill becomes much less effective for women weighing more that 155 pounds. Maybe at this weight, the Vitex stopped working. Although none of these pieces of information was definitive, all signs were pointing to stopping Vitex.

I also thought about my history. I took birth control pills for two months about 10 years ago, after I had an enlarged ovarian cyst, in the hopes of preventing another one by preventing normal functional cysts that are formed prior to ovulation. At least I was willing to try this after my gynecologist insisted I “needed” to do something to prevent future cysts. (The cyst I had back then was big enough to cause pain but not big enough to remove surgically. It resolved on its own after a few months. Right after that I tried the pill.) I took a progesterone only pill that did not agree with my body at all. I think that it interacted with the tick-borne infections in a bad way. So I stopped taking it after abdominal cramps and loose stools for 6 out of the 8 weeks I was on it.

Finally, although an obvious place to have started my research, I looked up Vitex again. I had read a lot about it before taking it, but I never looked at the common side effects. That was an oversight I’d prefer not to repeat. Anyway, weight gain was listed in the side effects on Web-MD and other similar websites.

At the end of the day on December 3, I decided I was finished with Vitex. On the morning of December 4, I put the bottle away for good.

Alternate Explanations

Even though I thought I’d learned enough before taking Vitex, I don’t think I understood how it works. I’m not sure that would have changed my course of action over the past several months. But I did find an interesting summary of all the ways that Vitex modifies the hormonal balance in female users. One of the key things it mentions is that Vitex affects the pituitary gland and stimulates dopamine production.

I’ve been coiling the back of my head for Bartonella, since that is the part of my body that gives me the strongest herxes. I’ve been steadily increasing how much I coil back there. It is possible that after reducing the infection, my pituitary gland had to rebalance itself, and suddenly the Vitex became a physical stressor rather than relieving an existing problem caused by the infection. In other words, as I get rid of the infection, I no longer need the help that this supplement was providing.

Another possibility is that my body got used to the increased dopamine and I was heading towards a spiral of requiring more and more Vitex to have the same effect. That is a situation I’d prefer to cut short.

Another possibility, the one I had been considering all this time, was that my metabolism was changing as the Bartonella infection got knocked out and my food intake had become more varied.

Only time will tell whether ceasing Vitex will reverse the weight gain I experienced when I took it. At the very least, I’m hoping that I’ll stop adding a pound a week. If I don’t there are other avenues to consider.

Finding Balance

I’m sitting out this menstrual cycle, not using anything else that might affect my dopamine levels or my progesterone levels. I’ll deal with the PMS the best I can. In the future, I’ll go back to using the Shen Men points in my ears if I get PMS. They seem like a milder way to interfere with my body’s processes, and have a shorter effect.

Heading forward, I’m still taking DIM (diindolylmethane) to help balance the different forms of estrogen in my body. It should have a similar effect to Metformin, but is much milder. It has no known side effects (I hope I’m not the one to discover them). Hopefully the dose I’m taking (150mg daily) will be enough to keep my menstrual cycle from incapacitating me every month.

Disclaimer

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Itchy and Scratchy

Tuesday, August 27, 2013

Back in 2011, I got my first case of Tinea versicolor. It itched like crazy. It is a small, mottled red rash on my sternum. I had it for weeks. I got the Tinea rash when I had been on florinef, to raise my blood pressure to at least 90/60mmHg, for about a year. At that point, I discovered that long term use can reduce resistance to fungal infections, and voilà, my rash.

Anyway, Tinea versicolor, in people who get it, tends to recur each time the person is exposed to hot, humid weather. The rash came back in 2012, when I was on my honeymoon in Hawaii, no less. It itched and itched, and I tried really hard not to scratch it. (Translation: I scratched it and made it more inflamed.)

This summer was pleasantly cool. Only over the past week has the weather consistently hovered around 80° F. For some reason, this has been enough to trigger the rash again. Bummer. Even worse news, from the itchiness perspective, is that I’m headed to the warm, soupy weather of early September North Carolina. I anticipate it getting a lot worse.

Tinea is hard to get rid of. I have tried to kill Tinea with the regular topical antifungals drugs. Two problems: 1. They didn’t work. 2. I’m allergic to the two that are supposedly most effective. I’ve also tried to kill Tinea with topical lavender oil. It does reduce the inflammation and itchiness. The first year, it got rid of the rash. The second year, not so much. Selsun blue was the third try. Once I got rid of most of the rash, Selsun blue in the shower kept it away. It doesn’t work that well because I don’t take long enough showers. Supposedly if a person keeps in on the affected skin for 10 minutes every day for a week before washing it off, it goes away. Then there is a maintenance program of 10 minutes once a week. That might work. But I never managed to keep it on long enough. And, it doesn’t go away forever. It lives there waiting for its chance to wake up again.

I even tried coiling for Tinea versicolor. I don’t think I had the right frequency, because the frequency I tried made no difference at all. I might do that again when I get back, but I won’t have time to try before I leave for North Carolina.

So I have a crazy idea that I think I will try. It seems Tinea versicolor is essentially an opportunistic infection. Possibly it grew out of control enough to cause a rash because I am lacking some probiotic skin microbes on my sternum. I read about transplanting microbes from one person to another (fecal transplants-which I don’t intend to try at this point in my life), and I read about all the microbes that grow on different areas of the skin. Since my skin is okay on other parts of my body, I’m considering doing a self transplant. I’ll wait until I’m nice and sweaty, then I’ll use a cotton swab to wipe the sweat from one area of my body where the skin is healthy (maybe my armpits, which tend to have lots of bacteria) and put it on my sternum. With any luck, something will colonize and crowd out the Tinea. I don’t have high expectations for my experiment, but it seems worth a try. Even a little relief will go a long way.

Never Say Never

What a fool I was to think that just because the joint pain from food sensitivities didn’t arrive with the swollen belly that I might not get it this time. Yesterday, as my belly went down most of the way, but not completely, I started having joint pain in my hands, wrists, knuckles and elbows. My belly is swollen again today, and the joint pain is worse. I guess I need to stop malvin and red foods for real.

Lyme Coiling

After I coiled for Lyme last Tuesday, I had a pretty noticeable herx, with fatigue and sleepiness and brainfog. I coiled for Lyme again yesterday. I didn’t have much of a response. I’m not sure what to make of it.

Coiling Break

For the next two weeks, I’ll be away from my coil machine. I’m going to visit my sister and her family for ten days. Yay!!! Then I’ll spend a few days with my parents in NYC. Yay!!! Then I’m back home and back to making progress with my coil machine.

Bartonella, your days are numbered.

Disclaimer

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Bartonella brain-dump

Wednesday, June 27, 2012

I’ve been treating Bartonella without blogging. In theory this should be no problem, but it turns out that to think things through, I need to write them down.

First the history: I was fairly successful with Babesia. Someone gave me an idea of what to try, how to build up my coiling program so that I could eventually knock out the infection without harming myself with herxes. The plan worked, only I did it much sooner than expected because I was keeping track of my symptoms. Now I don’t have Babesia symptoms. The infection is either gone or dormant, possibly because the load is low enough to be deactivated by the Lyme or Bartonella infections.

History part 2: I was really scared of doing a full body scan of Lyme. I slowly built up a program based on conversations with several other coilers. At some point, one of them suggested I increase it significantly. I had reduced the infection load enough at that point to build up fast to a more extensive coiling protocol with longer times. By January, I was able to take a short break. Once I started up again, I noticed that the severity of the herxes diminished from week to week to the point that I couldn’t really be sure I was having them. That’s when I stopped for a few weeks and discovered symptom creep and began coiling again. Last time I wrote, I thought I wasn’t having noticeable herxes anymore. Ha! Then I had a herx from coiling my whole body in one day. Headache the next day. Loose stools. Joint pain in my neck and limbs. Fatigue. I felt wiped out, but it only lasted 3 days and diminished each day. So I know the infection is still active, but I’m confident that I’ve got the treatment plan under control.

Bartonella is not so easy. Originally I thought it would be more like Babesia. It supposedly grows much faster than Lyme and has milder herxes. Over the past year, I went from coiling my chest and abdomen every other day to every day in order to keep the symptoms at bay. So the idea that it grows quickly seemed validated. This spring, once I stopped Babesia and the Lyme herxes were less menacing, I started increasing my Bartonella coiling until it covered my full body. This was okay as long as I was going to a sauna at least 4 times a week. Once I couldn’t go to the sauna, the herxes caught up to me. But first things first, this is the treatment

Bartonella Full Body Scan

Coiling Frequency: 832 Hz

Total coiling time: 30 minutes

  • Top of head, 1 minute
  • Each side of head, 1 minute
  • Back of head, 2 minutes
  • Each shoulder (with the coil sitting on the nub of my shoulder), 1 minute
  • Chest, 2 minutes
  • Each side of ribcage + each arm, 1 minute
  • Abdomen, 5 minutes
  • Upper spine/back, 2 minutes
  • Central spine/back, 1 minute
  • Sacrum/lower back, 1 minute
  • Each ilium front, 1 minute
  • Each ilium back, 1 minute
  • Each hip/outer thigh, 1 minute
  • Between my legs in 3 places: thighs, knees, shins, 1 minute each
  • Feet through coil, 1 minute

My rationale for this protocol is that I’m convinced that a big part of the infection, the actual bacterial colony, is located somewhere either in my head, my neck or my upper spine. I think this because my hormones (as in the pituitary-thyroid-adrenal axis and my insulin regulation) have gotten all screwed up in the time leading up to my getting disablingly sick and got much worse since then. My other inkling is that my vagus nerve is very sensitive and gets stimulated into making me feel very unwell (hand/foot pain, nausea, digestive issues, blood pressure drop, heart palpitations) when I coil or at various other times, like when my period comes. Coiling for Bartonella also makes my arms and legs tingle a lot. Working on Lyme didn’t get rid of these problems. Some things have diminished with Lyme, but get worse again with Bartonella herxes. Some of the cardiac and blood pressure issues were ameliorated as a chronic problem once I got through the Babesia infection, but they get worse again with Bartonella herxes.

Swinging back around to why I coil more than a minute in various locations, I focus extra time around my neck/chest/upper back and head to get at the pituitary gland, the thyroid gland and the vagus nerve. I do extra time on my abodmen partly for the digestive symptoms and partly to take care of my pancreas (insulin) and adrenal gland. I’m not sure this is perfectly reasoned, but it’s what I’ve come up with, and it gives me bigger herxes than I expected when I started out.

Bartonella Herxes

I spent a year doing my abdomen and chest. Then I added in other parts of my body a little at a time. As I mentioned, I was sweating it out in a sauna at the time. When I added in all the extra stuff on my upper body, the herxes got much worse than they did for any other body part. And I had no clue how bad these herxes could get.

For me, Bartonella herxes consist of: kidney pain, dark and strong-smelling urine (different from the Lyme smell), low back pain (around my sacrum), constipation or at least very dry stools, nausea, pain and tingling and a feeling of heaviness in my arms and legs, tension in my shoulders and upper back, severe fatigue, thirst, headaches with light sensitivity, crankiness and irritability, a feeling of hopelessness (usually focused on whether I’ll ever get better), restlessness (feeling like I never get anything done), and changes in my menstrual cycle (as in making it much longer that it ought to arrive and making pms and the first few days have more severe symptoms).

Bartonella has the most obvious psychological aspects to the herxes. I’ve heard other people talk about feeling severe anger or rage when they coil for Bartonella. I’m lucky, I guess, that I feel hopeless instead and that I’ve set up my life with lots of reminders of what to be hopeful about.

When I look back at the months I was using IV Rocephin to treat Lyme, I remember severe kidney pain. I initially thought the kidney pain was a prelude to the kidney stones I got after 13 weeks on Rocephin.  But, I’ve read that Rocephin is used for intractable cases of Bartonella. Now that I’ve experienced the kidney pain again, I think the Rocephin was attacking my Bartonella but I didn’t recognize the die-off symptoms.

Let me clarify a little further. It seemed to me that most of the Lyme toxins exited through my intestines, with diarrhea as one piece of evidence, and the use of bile binders and colonics producing significant reduction in symptoms as another. These haven’t been the case with Bartonella die-offs. Those seem to be processed in the kidneys, and through sweat, so that my kidneys are stressed and painful in the presence of big Bartonella die-offs (unless I sweat it out).

What to do next?

For the past few days, I’ve been wondering if Bartonella reproduces so quickly that I need to be coiling every day as I had concluded earlier…or if I was attacking the wrong area of my body so that the infection wasn’t really diminished from coiling my abdomen and chest and would thus be back to a symptom generating level within a day or two. Since I started the full body coiling program, I’ve had to scale back to twice a week because the herxes were too intense. This has kept me at a level where I don’t get Bartonella symptoms, yet I’m having a hard time with the herxes.

I guess the most obvious thing is to sign up for the gym and start going to the sauna again. I’m planning to do that next week. The second most obvious thing is to reduce how much I’m coiling so that I’m not incapacitated, but I’m attacking the source of the problem.

For now, the new plan is to continue at twice a week, to coil my head, chest, upper back, shoulders and abdomen (16 minutes) and see if that makes a difference. Then I can add in more time as soon as the sauna starts cleaning me out and taking the pressure off my kidneys.

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Spitting out Mercury

Friday, February 17, 2012

Over the past five years, I’ve read lots about mercury toxicity and dental amalgams. A few years ago, I got tested for heavy metals. I had a not-alarmingly-high amount of mercury in my urine, but enough that I could see how it might add to my existing Lyme-generated problems. I decided I should get my two mercury amalgam fillings out sooner rather than later.

Fast forward two years. Sooner has come and gone. I finally went to the dentist, now that I have most of my other medical problems under control. I read up on how to detox from mercury. I’m doing enough other detox activities, especially with all the antioxidants and the diatomaceous earth that I’m in good shape to have my fillings removed.

I went to see my dentist yesterday. He thought I had a few more years worth of use from the big filling in one of my bottom molars. It was already over 25 years old. I thought it should be replaced soon anyway because the edges were starting to discolor and change shape. My dentist let me know that he didn’t believe all the hype about mercury toxicity from dental amalgam, but that he understood where I’m coming from with all the other health problems…that in certain cases he could understand the idea of a toxic load. To his credit, he didn’t charge me too much (as I have no insurance or job) and did his best to make sure I wouldn’t inhale or swallow the old filling.

I was pretty amazed at the whole procedure. I learned last year that I’m allergic to novocaine, so we did the procedure with no local anesthesia. I was terrified. It hurt a little. It hurt less than much of the pain I’ve experienced over the past 5 years. But my heart was racing with each little pain in anticipation of something much worse. The “much worse” never came. This was the third procedure he did with me that involved no anesthesia. The other two times he told me the cavity wasn’t deep enough for me to feel pain. He was right both times.

I’ve read about people doing dental work without painkillers. I thought they were nuts. Now I’ve become a convert for small procedures. (I wouldn’t want my wisdom teeth removed that way.) I always think that if pain is bearable that the painkillers just cause more trouble, but even I have my limits. I didn’t fight about taking something when I had a kidney stone.

I’ve not learned much more about mercury this time around. I guess I’m not so worried because I didn’t have a mouthful, just two fillings. Still, as I clean up my exposure to toxins and aim for complete health, this was another part of the process.

Thursday

Coiling

This was the second day of the 2 day Lyme protocol.

  • Candida, chest, 2 minutes; abdomen, 10 minutes
  • Bartonella, chest, 2 minutes; abdomen, 5 minutes
  • Lyme, chest, 3 minutes; sides of ribcage + arms, 3 minutes each; shoulder fronts, 2 minutes each; shoulder blades, 2 minutes each; bladder/lower abdomen, 3 minutes; upper abdomen, 3 minutes; upper back, 3 minutes; central back, 3 minutes; lower back/sacrum, 5 minutes; crown of head, 3 minutes; back of head, 3 minutes; sides of head, 3 minutes each

Detox

I added NAC back into my repertoire because it helps the body generate extra glutathione, the best of the antioxidants, and a key aid in cleaning up mercury.

  • skin brushing
  • diatomaceous earth (2x 1tsp)
  • water with lemon juice
  • lots more water
  • rest

Body

I was pretty tired after the first day of coiling for Lyme this week. I spent time reading up on mercury but not deciding much other than I should take NAC as I got my fillings replaced.

My joints were loud, popping as I changed position. Mild headache. Mild nausea. Mild moodiness. Loose bowels in the morning.

Friday (today)

Coiling

I decided not to start the new Candida treatment today once I took into the account that I had both the mercury clean-up and the Lyme herx to deal with. I didn’t think my body should have to deal with at third toxin load in one day, and I wasn’t sure I would know which symptoms came from the Candida die-off.

  • Candida, chest, 2 minutes; abdomen, 10 minutes
  • Bartonella, chest, 2 minutes; abdomen, 5 minutes

Detox

The Renavive arrived today. I started off with 2 pills at dinner time. I’ll be taking 2 a day for the next week because mercury gets processed for disposal as well as stored in the kidneys. I wanted to give them extra support. Plus, I had kidney pain again today, just like I did after my other day of coiling my head and trunk for Lyme.

  • yoga
  • juiced greens
  • kombucha
  • nap (1.5 hours)
  • biomat (2 hours)
  • diatomaceous earth

Body

I woke up with kidney pain. I had awakened a few times last night. My urine at first was copious, then later very concentrated, then copious again in the morning. I’m not sure what was going on.

The kidney pain slowed me down; in fact, it was the signal that I shouldn’t add more toxins to the daily routine by doing my first full body Candida coiling treatment.

I had a good yoga class. I’m glad to be going twice a week. It knocked me out. I think I have to give up on doing much on the days I do yoga. My body just poops out as soon as the class is over. Long nap. Major muscle fatigue afterwards.

The popping joints continue. I’ve got pain in both hips again. My shoulders are pretty tight tonight. My jaw is popping, too.

I have loose bowels again today (3 times). I guess that’s good, since it’s one of the major detoxification routes both for mercury and for Lyme endotoxins.

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Bone Density Rx

Tuesday, January 10, 2012

I went to see a rheumatologist this afternoon about my recent diagnosis of osteoporosis. I was pretty nervous, ready to do battle about whether I have Lyme Disease, given my previous experiences with rheumatologists. I looked up lots of information about premenopausal osteoporosis, so I could keep the conversation focused on the current problem and also because I like to learn enough in advance to understand what a doctor is talking to me about.

Premenopausal Osteoporosis

First, a little more background on premenopausal osteoporosis. Usually it is a secondary problem that affects mostly women who have a different primary complaint. It seems that the most common scenarios are women who have taken a lot of steroids (like for asthma, not just athletes), who have malnutrition (from anorexia or inflammatory bowels), or who have experienced endocrine disruption (like missing 12 months worth of menstrual cycles).

According to an article in Endocrinology Today, the treatment of the underlying cause is more important than using osteoclast inhibitor drugs, which have only been approved for premenopausal women who must continue steroids for their primary health problem. Otherwise, dealing with estrogen deficiencies and improving nutrition are the key to halting and reversing bone density loss. The other, equally important factor for all women with bone density loss is exercise of a type that strengthens muscles and builds bones. One final note is that people with bone density loss should avoid smoking and alcohol.

Osteoporosis and Chronic Lyme Disease

As I read through several articles, I thought about what risks for osteoporosis a person with Lyme Disease might face as a result of untreated chronic illness or from the treatments. I found a list of risk factors for osteoporosis, published by the NYS Dept of Health, that has several factors useful to consider:

  • Low weight for height. I lost a lot of weight when I first became debilitatingly ill. Then I lost more weight on all the antibiotics which destroyed my intestinal flora. Several other people I’ve met who have chronic Lyme Disease are on the overly-thin side.
  • Temporary loss of periods for more than 12 months or infrequent periods for several years. Many women with LD whom I’ve met have had menstrual problems, either temporary cessation, PCOS or other problem indicating hormone imbalance. I had my own such problems starting in 2002 that I didn’t get treatment for until 2008.
  • Chronic diseases including: eating disorders, inflammatory bowel disease, malabsorption, neurological diseases, lupus, and rheumatoid arthritis. Anyone on long term antibiotics falls in the category of malabsorption. Then a repeated symptom I had was bowel inflammation (though it was never diagnosed as a separate disease). The last 3 diseases share a lot of similarities with Lyme Disease.
  • History of bed rest or immobility for more than 6 months. For many chronic LD patients with neurological problems, joint pain/swelling or severe fatigue, even the mildest forms of exercise may be beyond reach for extended periods of time. My history of bed rest was over 2 years that I couldn’t walk. Then my immobility that lasted even longer, only starting to improve after a series of colonics. Only in the past few months since I started coiling have I had the strength, stamina and neuromuscular control to be able to really walk around.
  • Certain medications, including: immunosuppressants, steroids and thyroid medications. Immunosuppressants are sometimes used in LD misdiagnosed as autoimmune disorders. Steroids are used in LD patients who have joint inflammation (not advisable). And many people with chronic illness develop thyroid problems as their bodies go into endocrine overdrive to compensate for the long term dysfunctions, resulting in taking thyroid medications.

There are other risk factors that may apply to some people with LD, but these seemed the most specifically associated with the illness itself.

Osteoporosis Treatment Plan

Back to my appointment with the rheumatologist. He was very friendly and talkative. We discussed my clinical history. He was appalled that it took me more than a year to be diagnosed with Lyme Disease . (What a relief.) Then he said the key issues for me are

  1. making sure that I get enough calcium and vitamin D in food form (rather than only as supplements) and to keep working on improving the condition of my intestines to increase the amount of nutrients I absorb.
  2. working up to doing regular exercise, particularly developing a toning program using weight machines.

He suggested finding a gym that I like and a qualified trainer in addition to continuing yoga. He said I could begin cardio exercise if I wanted, but that muscle building was more important. He didn’t think I need drugs or physical therapy. (Another relief.)

He asked me to come back again in a few months to make sure I’ve made the changes in my lifestyle and see if I had further questions after trying all this. And in a year, I should have another bone density scan to make sure the bone loss process has begun reversing itself.

I very much appreciate  the conservative approach he took. He seemed to understand that the osteoporosis was from a long term nutritional deficiency, and hormone imbalance. He thought that correcting these problems (including staying on metformin for as long as necessary to keep my menstrual cycle regular) and rebuilding my body as I get rid of the Lyme Disease would be all that is needed. He seemed to trust that at my age, my body still has the capacity to regenerate itself. His attitude was very reassuring.

On a side note, he wanted to know how I’m keeping the Lyme infection in check and asked about the coil machine…

Coiling

  • Babesia, back of legs, 3 positions: butt+heels, calves+thighs, back of knees, 1 minute each location; back of ilium, 1 minute each side; 3 sections of spine, 1 minute each; shoulder blades, 1 minute each side; back of head, 1minute; top of head, 1 minute; liver, 10 minutes
  • Babesia, spleen, 10 minutes
  • Babesia, top of feet & ankle, 1 minute; shins together, 1 minute; knees together, 1 minute; front of thighs together, 1 minute; front of ilium, 1 minute each side; sides of ribs, 1 minute each side; front of shoulders, 1 minute each; sides of head, 1 minute each; chest, 10 minutes
  • Candida, abdomen, 10 minutes; chest, 2 minutes
  • Bartonella, abdomen, 5 minutes; chest 2 minutes

Detox

  • skin brushing
  • foot soak in epsom salt
  • several hours of rest (but not sleep)
  • lots of water (extra compared to my usual grand amount)

Body

Yesterday’s yoga class knocked me out big time. I’ve had muscle pain all day, in my arms, legs and lower back. The fatigue that has accompanied it has me a little worried about how I’ll fare when I go on a trip with no coiling for 2 weeks starting Thursday. I fear that the Bartonella is more active — hand and foot pain this morning, floaters in my vision tonight, extreme fatigue — now that the Lyme and Babesia are more under control. I heard that Lyme bacteria emit a chemical that keeps the other diseases dormant or less active, and that their symptoms become more noticeable when the Lyme load is reduced. Now I’m experiencing it for myself.

I thought I would do something when I got home from the doctor’s office, but I couldn’t. I had to sit with my eyes closed for a long time. I napped a little, drank water, listened to old episodes of wait, wait… don’t tell me!, and rested from 3pm till I started typing this blog. Now I’m off to bed.

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Long Term Consequences: Bone Loss

Wednesday, November 23, 2011

Buried in yesterday’s post was the news that I’ve been diagnosed with osteoporosis. Yup, just when things are starting to look up, I discover a new problem that will take a long time to heal from. The good news is that at my age it is possible to reverse bone loss and rebuild my skeletal structure. The bad news is that it’s going to take a long time to get healthy enough to do the amount of exercise I’ll need to do to get started.

(Quick shout out to my acupuncturist, Teresa Kresse, who knew my bones were weak and pushed me for a few years to get a bone density test. She was right.)

The specifics of my diagnosis are that my lumbar spine is osteoporotic. My hips and femur are osteopenic, which is to say that there is significant bone loss but not as extreme as my spine. The gynecologist was unintentionall funny when she told me that I should not fall down because something might break and that it would be bad. Thanks.

I haven’t had time yet to really delve into what I need to do to rebuild my bones. The short version from what I’ve read so far and what I’ve talked to people about is: find a good rheumatologist and a good sports medicine specialist. Apparently female long distance runners sometimes lose too much weight and become amenorrhic, resulting in serious bone loss. Thus the sports medicine doctor.

I read a tiny bit about the four causes of bone loss: malnutrition, lack of movement (as in bed rest for extended periods of time), steroids, and in women, hormonal imbalances. I’ve got the whole package. It’s a miracle that I’m not any worse off than I am.

Malnutrition: I had diarrhea for a year and a half when I came back from China. I lost a lot of weight and became extremely weak. I can only imagine what that did to my bones. Then when I started being able to eat again, who knows if I was absorbing much because my intestines were inflamed during almost three years of antibiotics. Then there were the colonics which are known for causing mineral loss. I ended up doing 10 or 11 over the course of a few months, then one more a year later. I’m glad I did them because the detoxing got my nervous system working better. But it wasn’t good for my bones. No regrets, just 20/20 hindsight.

Lack of movement: From February 2007 to August 2010, I could barely walk. I tried. I was pretty insistent about not using a wheel chair and trying to be mobile when I could. I used the cane when I could, but I didn’t move much until October 2009, ironically regaining my walking ability after a few colonics. Still, it has been a slow improvement and I don’t yet walk that much. I have so many days when I’m exhausted from the little bit I do that I can’t go for walks outside, or do light housecleaning or some other activity that requires standing and walking. I’m trying to rebuild my stamina; it’s a work in progress. It helps that my blood pressure has normalized because I spend less time light-headed and horizontal. However, it’s close to 5 years since I’ve done any significant regular movement. (Thank goodness I used to walk up 6 flights of stairs to my apartment everyday!)

Steroids: I took a florinef for over a year. One of the long term side effects is osteoporosis. I wasn’t on a high dose and a year isn’t that long compared to many patients. But given all the other bone loss factors I’ve been dealing with, I’m sure this didn’t help.

Hormones: My best guess is that I started having PCOS in January 2002 when my periods started getting debilitating. Maybe it was the beginning of the syndrome. From what I’ve heard, the correlation for hormone influenced bone loss is 6 months without menstruating (or menopause). I never went that long. I did have extremely late periods over and over and maybe skipped a few (when it’s 50+ days, is it late or was it skipped?). I had all sorts of problems with my ovaries (including 2 oversized cysts, one of which ruptured and landed me in the ER to figure out what was causing the excruciating pain). Alone, this was probably not enough to cause the level of bone loss I’ve experienced, but I’m sure it was a contributing factor. The other piece to consider is that my vitamin D levels were extremely low (and stayed low even with supplements until I started taking quite a bit) and that my cholesterol often hovers just below the low end of normal, also contributing to hormonal malfunctions.

To reverse the process, first I’ve got to reverse all these bone loss causes. I’ve already stopped florinef. My menstrual cycle is back on track after two years on metformin. I’m eating better and have less intestinal inflammation between stopping antibiotics and avoiding foods that I have sensitivities to. I’m sure I’ll have to change my diet more, but I’ll need help with that. Then there’s exercise. I can move more now. Maybe enough to slow the bone loss, but certainly not enough to reverse it. I’ll need help with this from a professional. Who knows, maybe I’ll start training for a marathon in 2012.

Coiling

  • Candida, chest, 2 minutes; abdomen, 10 minutes
  • Bartonella, chest, 2 minutes; abdomen, 5 minutes
  • Babesia, back of legs, 3 positions: butt+heels, calves+thighs, back of knees, 1 minute each location; back of ilium, 1 minute each side; 3 sections of spine, 1 minute each; shoulder blades, 1 minute each side; back of head, 1minute; top of head, 1 minute; liver, 10 minutes
  • Babesia, top of feet & ankle, 1 minute; shins together, 1 minute; knees/elbows together, 1 minute; front of thighs together, 1 minute; front of ilium, 1 minute each side; sides of ribs, 1 minute each side; front of shoulders, 1 minute each; sides of head, 1 minute each; chest, 10 minutes
  • Lyme, chest, 3 minutes; side of ribcage + arms, 3 minutes each; front of shoulders, 2 minutes each; shoulder blades, 2 minutes each; sacrum, 2 minutes

Detox

  • skin brushing
  • kombucha
  • diatomaceous earth

Body

I’m suffering from fatigue. By 7pm, I was exhausted and pushing past the tiredness to hang out with my sister and brother-in-law. That’s the most significant of my current body issues. I’ve got lots of the usual aches and pains, mostly in (all) my joints and my lower back. My left shoulder is especially cranky. Light headache on and off during the day.

As a result of being tired all day, I move in slow motion and don’t get done what I’d like to do. But to have less pain and be able to move around is more than I thought I’d experience this soon in the coiling cycle (and before that I was very hopeless). So tomorrow is a good day to give thanks for the improvements I’ve had so far.

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