Archive for the ‘pharmaceutical treatments’ Category

h1

Fragile

Wednesday, February 15, 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

Disclaimer

h1

Overcoming Obstacles

Thursday, December 8, 2016

I got a PICC this week. The process of working with an LLMD and transitioning back to antibiotics has been fraught with logistical obstacles and strong emotions. But before I get to those, I once again learned the lesson that I can get well enough to function for a short time (2-3 weeks) but that it takes a long time to recover after I’ve been active.

A bit of travel

My mother wanted to go to Italy for a canonization ceremony, basically endowing sainthood on a catholic who has died and generated verified miracles, and it worked out that I would accompany her. In theory, this was a good idea. But I wasn’t well in the weeks before the trip. I’d had a bad reaction to some antibiotics I’d taken and was off all treatments for a few weeks. I had barely enough time to use the coil machine to get my symptoms down to a level where I could do something for part of each day. I made a plan for the trip: a TCM herbal formula, a bunch of antioxidants, some pain killers, and artemisia.

When we arrived, I started the TCM herbs (some pills, some powders). I rested and felt grateful that at 81 my mother can travel and that she prefers a slower paced itinerary. I herxed for a few days, especially with pain in my kidneys and trouble with my bowels, but I had energy thanks to the artemisia. We participated in some group activities with nuns who were celebrating that the founder of their order had become a saint. But we also took time to head back to our lodgings and rest.

I had some troubles in Italy, particularly with my feel swelling up, fatigue returning after the first week, and an increasing pain level. But I hung in there. The combination of supplements I took wasn’t designed to keep me well long term or to help me make another strike against the infections. It was just to keep me going for a few weeks.

Before returning home, I stayed with my mother and the rest of my family for a week. Daily naps were a necessity to participate in the Halloween festivities with my nephew and niece. But by the time I left, I was about to crash.

Test Results

When I returned home, I went back to the coil machine for a week. I had finished the TCM formulas, and the artemisia had stopped working. I was a little surprised that I herxed right away as I coiled for all three infections: Lyme, Bartonella, and Babesia. I had headaches, joint pain, bowel problems, sleep problems, night sweats, kidney pain, etc. I felt strongly that the months I’d spent on Alfons Ven remedies had allowed the infections to make progress against my body.

After a week, I had an appointment with my LLMD. The results included some surprises and some confirmations of things I’d believed all along. I had positive tests for Lyme (as expected), my first positive test for Bartonella, my first positive test for Babesia (direct test, not antibody). The Bartonella test was confirmation of what I’d believed all along after a series of ambiguous results and had seen evidence of through herxing after coiling with the appropriate frequency. The Babesia test was not exactly a surprise, but it was unpleasant to acknowledge what I already knew from the migraines, fatigue, and nightsweats: the Babesia infection is active.

Then there was news that was helpful. I had positive tests for Chlamydia pneumonia and Mycoplasma pneumonia. (I had weak positive tests back in 2008.) These two infections would explain why I’d been having recurring bronchial inflammation as I whittled down the Bartonella infection. I have experienced what another user of a coil machine told me early on–as each infection gets weak, another infection it was suppressing gets more active. If I were still using the coil machine, I’d begin working on these infections, even if I didn’t herx from them.

I’m still positive for Epstein Barr (high enough titers to consider an active infection). It is at the bottom of the list to treat because when the other infections are in check, the immune system can deal with EBV without assistance.

The biggest surprise was that I tested positive for relapsing fever caused by a borrelia genus bacterium. In my mind, this was the missing infection that I couldn’t treat because I didn’t know it was there.

The good news is that many of these infections can be treated with the same antibiotics as I would take for Lyme and Bartonella. The bad news is that I have a lot of infections to deal with.

Treatment Plan

When my LLMD and I went through the list, she told me I had two options. I could continue to self-treat. She could in no way advise me there, but she was happy to have helped me fill in the missing diagnostic information. If I were to self-treat, she would advise against pregnancy.

The second alternative was to go down the allopathic route, again. It would entail oral treatments for Babesia and intravenous treatments for all the other infections (except EBV). She told me that Babesia causes miscarriages, and that we should try to get rid of it, if possible, before I try to get pregnant. She thinks it is possible to get rid of it, beyond the kinds of remissions I’ve had with the coil machine and others have had with drugs. But she cautioned that there is no way to guarantee that it is gone rather than in remission. I asked why the drugs would work this time, since they clearly hadn’t when I treated Babesia for 2 years. She said that compared to my last LLMD and the information he had available 6 years ago, she will be much more aggressive in the treatment. I decided to get started.

I had imagined I would need intravenous antibiotics. I was hoping to use butterfly needles rather than a PICC, like I did in 2010. My LLMD was very clear with me that I needed higher doses of ceftriaxone than before, as well as other drugs that cannot be delivered through a butterfly needle. She explained how to get well enough, and to knock down the infections enough, to be able to have a healthy pregnancy. At the same time, she told me up front that I would still need to take oral antibiotics during the pregnancy because it is almost impossible to be sure that the infections will not reactivate. She gave me statistics from Lyme pregnancy registries that helped me realize she was right.

I couldn’t agree to the PICC when I was sitting in her office. She gave me some written information and told me to call in a week with questions and/or my decision about whether or not to go forward.

On the way home in the car, I cried. I cried for the years of my life that I’ve lost to this illness. I cried for the money spent on treatments that barely made a dent and for the lost earnings. I cried because it is scary to go back on all the drugs that made me feel even sicker before. I cried because I don’t want to be sick for the rest of my life. I cried because it seemed so easy to give up, right there in that moment, on having a child. I cried and freaked out. And when I was done, I listened to my husband’s reaction to the doctor visit. He told me that I was under no obligation to go forward with the treatment or anything else. He knew that even with all the treatment in the world, there was no guarantee that I can get pregnant at my age (and we’ve already decided not to use assisted reproduction because my body has been through too much already). But he also said that if there was a real possibility that I could get well, he would consider the treatments to be worth it.

He settled my emotions for the night. I needed another day and a few conversations with my family and friends to realize that I’m ready to take another swing at these infections. I’m stronger than I was when I stopped taking antibiotics. My body will be able to do much of the work, rather than relying completely on the antibiotics to get rid of the infections. Even if things get worse for a while, I have a real chance at pursuing my many dreams and goals.

Side Note on Antibiotics

I pondered for a long time on why antibiotics work for some people and not for others. I have multiple theories. When it comes to the few NIH studies, the fact that co-infections were not considered might explain why people felt better on antibiotics, though not fully improved, and that in the absence of antibiotics, there bodies were overwhelmed by the multiple infections again.

Then there is some of the reading I’ve done on the internet by LLMDs who have had the guts to put out their thinking and educate patients and families for free. It looks like some of the treatments being used for quite a while weren’t strong enough to overcome the fact that the patients had poorly functioning immune systems. Stronger doses. Multi-pronged attacks. Longer protocols. Maybe, all together, these things can compensate for faulty immune function.

I knew, at some point, that my immune system came back online, during the second or third year of coiling. I got a cold. A bona fide cold. One that came, knocked me out, gave me a fever, then left without additional assistance from drugs (or coiling). I celebrated it, not because I wanted to feel sick, but because it was an important step in reclaiming by my body from the tick-borne infections.

I read, long ago, that antibiotics increase the body’s ability to resist infection by 30%. Although I can’t find a source for this, the idea was one that an immunologist friend of mine agreed with. If one side of a centuries long fight increases its strength by 30%, the war changes. Fewer people die from previously fatal bacterial illnesses. Some still do, especially people with weakened immune systems. The microbial community continues to find ways around our new weapon (think antibiotic resistance), but understanding the principal behind the contribution of antibiotics might help us understand why they take so long to work in patients with chronic infections.

What we know about chronic Lyme Disease and several of the other tick-borne infections is that over time, they hi-jack our immune systems to prevent our immune systems from attacking or eliminating them. In a patient who has been infected for 7 years, like I was when I got diagnosed, the antibiotics are the only line of defense. That isn’t how antibiotics have been used effectively. They work when they provide a boost to an already functioning immune system.

What this means for many patients is that boosting their immune system (or redirecting its functions to include fighting chronic tick-borne infections) might be required as part of antibiotic therapy. It’s nice to take reishi or other immune system modulators, but those are not strong enough to reboot a person’s immune system.

When I wondered what was different now, as I try many of the same antibiotics as before, the answer I came up with is that I am different. The coil machine reduced my infection load (without the assistance of my immune system) enough to allow my immune system to function again. This time, the antibiotics are there in conjunction with a functioning immune system, rather than doing the work alone.

Obstacles

Once I got on board with doing the full treatment plan, I started looking at the cost. In the crazy way that healthcare operates, almost nothing I will use is covered, and certainly not without months of appeals. Instead I’m hunting on GoodRx.com for the best deal for the oral and injectable drugs, and using a mail order pharmacy for the iv drugs. I paid for the PICC insertion out of pocket.

Nothing is cheap. As my LLMD lamented with me on the cost of a PICC or using an infusion center, I had to try not to laugh because she’s incredibly expensive, too. But once my husband and I figured out how to pay for it all, I had other things to work out.

Like what? Drug allergies. I had a list that was way too long. There was a member of the 4-drug combo that sent me to the ER in September. Only, I didn’t know which one it was. I also had reactions to several drugs, including ceftriaxone that needed to be evaluated before I got started with a PICC line.

The main thing I learned from the allergist is that I have vasovagal reactions to needles and pain. I already knew that menstrual cramps could trigger a vasovagal reponse (Surviving Vagus), so could urgent bowel movements. What I didn’t realize is that the tired, woozy feeling I sometimes get from blood draws, or the massive drop in blood pressure I used to have with iv ceftriaxone through a butterfly needle were also vasovagal responses. I got to cross off several drugs from the list (some that we actually tested and the rest as a result of this finding). Then we tested two of the drugs I’m going to use and I was good to go. (The drugs that cause rashes are still on the list but not retested at this time.)

The next problem was that once I had the PICC line in, it didn’t work quite right, right away. The nurse fixed it, but then the same problem occurred at home. This led to a round of phone calls to my doctor, the PICC insertion company, and the local infusion center. It also led to a day of near panic (probably unwarranted, but I’m not used to having a one end of a catheter sticking out of an open wound in my arm and the other end right near my heart). Once that was resolved, I could pay attention to the fact that I had a dermal reaction to the antiseptic solution the nurse used on my arm when he inserted the catheter and applied the dressing. Topical cortisone worked for the skin not under the dressing. Changing the dressing using a different antiseptic generated some relief. But this morning, I’d had enough. It was time for some oral antihistamines to calm the inflammation.

I’ve finally started the intravenous antibiotics. I’m less stressed by anticipation and all the challenges I’ve already faced. My mind is clearer. I’m ready to get back into the swing of things and handle the pile on my desk, my email inbox, my Christmas list, and the rest of my life.

Disclaimer

h1

Transition Zone

Thursday, October 13, 2016

It’s been over a month since I stopped the Alfons Ven remedies. I had a plan, once I stopped, to see a doctor and go on antibiotics for a while. I had a plan, you see, because I’m as well as I expect to get before my ovaries stop producing eggs. So I’d like to try to get pregnant, but I’d like to do so without infecting my husband or a baby with tick-borne diseases.

There are grim statistics about being pregnant with tick-borne infections. Without antibiotics, the transmission rate is estimated at 50%. With a two-antibiotic combination, the rate goes down to less than 1%. Meanwhile, there are a few studies that suggest that Lyme and the other tick-borne infections can be sexually transmitted. I’d rather be safe than sorry.

Now, back to my plan. The plan was to get as well as possible on the Alfons Ven remedies, in the hopes that I could minimize the amount of antibiotics I needed to take to keep the infections in check. Instead, I had a Lyme flare which the Ven remedies did nothing to reduce, which triggered Babesia and Bartonella flares, so I began my doctor search with more symptoms than I’ve had in the past three years. At the same time, my coil machine broke (specifically the amplifier, which can be fixed by any appropriate audio equipment dealer), meaning that I couldn’t coil to get everything under control. Before it broke, I got to coil for about a week, just enough time to reduce my pain level and the Babesia fatigue–temporarily. Enter traditional chinese medicine. I took a formula to keep me going while I searched for a doctor.

Doctor Search

I started with the recommendations from the local Lyme Disease support group. That didn’t work out quite as well as I hoped. The first doctor (an internist who takes insurance) looked at my history, said I needed iv antibiotics for 3-4 months followed by hyperbaric oxygen, then I could skip antibiotics for the pregnancy. As soon as he finished his pronouncement, he said that he couldn’t treat Lyme patients for a few years because the insurance company of a patient who went into remission on iv antibiotics brought him before the state medical board. Now he cannot prescribe antibiotics for Lyme patients. He can only refer them to other doctors. I was a little relieved because his plan for me didn’t seem quite right.

The doctor he referred me to was also on the list from the Lyme Disease support group. He is an infectious disease doctor who also likes to give iv antibiotics, though never for longer than 28 days. His office was a nightmare. The medical assistant made one sexist comment after another. (Before I left I told him that he was a lawsuit waiting to happen.) The doctor insisted on looking at all my labs from the past ten years…and fell asleep doing so. He nodded off five or six times and I had to keep waking him up. He was less interested in my infections and more interested in my hormone levels, just to make sure I could get pregnant after a diagnosis of PCOS several years back. I’m no longer symptomatic of PCOS, but that didn’t reduce his interest in the topic.

After these two appointments, I contacted the Lyme Global Alliance for a list of ILADS doctors within driving distance of where I live. The downside to these doctors is that they don’t take insurance and are extremely expensive. I called around and talked to the staff while checking on my notes about what the people I’ve met at my support group have said about the various doctors in the South Bay (south of San Francisco). I picked one. She’s knowledgeable, competent, a good listener, and not freaked out that I’ve been using a coil machine. We came up with a diagnosis and treatment plan and have started moving forward.

Restarting with an LLMD

I’ve been able to control my own symptoms and control my own treatment for five and a half years. It’s hard to give up control. It’s hard to go back to antibiotics, tests not covered by insurance, side effects, and other tribulations.

Understandably, the doctor wants to retest me and see what I’ve got growing in my body right now. She wants to take a fresh look, checking for things that no one bothered to look for the first time around. She thinks we missed something. Frankly, I’ve been wondering for two years if I had an undiagnosed infection, one that prevents me from getting to the end of Bartonella with the coil machine. It was comforting that she came to the same conclusion I’ve come to without me bringing it up.

Not so comforting is taking a short course of a combination of antibiotics, just to kick up my immune response, before taking the blood tests. I saw five years of rebuilding my gut flora go down the toilet in less than a week. Oh well. I didn’t end up taking the full course of antibiotics because I discovered that I was allergic to one of them. After a trip to the emergency room and several days on benedryl, I eventually started to notice the Lyme symptoms coming back.

Now the tests are over. But I won’t start the longer term, pregnancy-safe antibiotics until the doctor gets the test results. We may even do a course or two of iv antibiotics to get rid of most of the neurological symptoms (and quiet the active infections) before starting the pregnancy-safe antibiotics. In the meantime, my coil machine is fixed. I got to coil for a week before I go on a trip to visit my family. So I’m back to TCM herbs, with the addition of artemesinin for a Babesia flare.

I’m still pretty symptomatic. This transition plan is not going quite as well as I’d like, but I’m able to get up, most days, and do at least one thing. On good days, I can do more.

In a few weeks, when I’m back home, I’ll go back to coiling and see how many of the symptoms I can clear up before beginning antibiotics.

Disclaimer

h1

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

h1

After a Quiet Month

Wednesday, October 22, 2014
Baby Blanket

Baby Blanket: Crochet Therapy

I’ve spent a lot of the past five weeks in bed or, more precisely, lying down in various places around the house. I was too sick with bronchitis to coil for the tick-borne infections, which meant I had a lot more time on my hands then I’m used to. I did my best to entertain myself watching episodes of Star Trek: Deep Space Nine and reading Conn Iggulden’s Conqueror series about Genghis Khan and his descendants. When the cough was gone and I was weak from Babesia but no longer contagious, I moved on to crocheting a baby blanket for a friend’s infant. Yet I still had more than enough time on my hands to think and think and think.

I had dark thoughts about giving up and never getting better. I thought about the effects that the antibiotics had on my body, on the infection they were intended to fight, and on the chronic infections. I mulled over traditional Chinese medicine (TCM), both acupuncture, which I ended up getting, and herbs. I thought about what my life might be like if I decide to give up on having a child or what it might be like if I changed everything around to be able to produce one ASAP. I thought about why I coil, the mistakes I made this year, what I learned from them, and what I might have done differently. I thought about how I might coil in the year coming up and what it will take to get to a point where I don’t need to coil and the infections are all dormant or gone. I thought about how much my body has been through and what I need to do to finally be healthy and able to exercise and be active again.

Five weeks is a long time. I wasn’t coiling. I also wasn’t eating very much. As a result, I stopped taking DIM for several weeks. Between not coiling (and letting the infections proliferate unchecked) and not taking DIM, my menstrual cycle took 5 weeks to arrive, making it officially late. The last several days before it came were torture. I was tired in a different way. I had slight night sweats and insomnia. It was akin to a Bartonella flare (which it might have been).

Now I’m coiling again. I’ve got my protocols for the next few weeks. I’m on a mission to get the Babesia out of circulation, knowing that it doesn’t solve all my problems, but it does give me the energy to tackle the rest of them. I might even have some energy left over to do fun things.

Coiling Report

Starting on October 13, I’ve been coiling for Babesia using a new protocol. It followed a week of coiling using the protocol that has worked in the past to get the Babesia under control: 570Hz, 10 minutes on each of my liver, spleen and heart/chest, plus 1 minute on each part of my skeleton, over the course of three sessions in a day.

After reviewing my notes from conversations with other people who coil, I decided I needed to try something different. I’ve known about two other frequencies for Babesia: 753Hz and 1583Hz. In the past I tried 753Hz for a few minutes and nothing happened: no herx reaction, no improvement. I’ve never done anything with 1583Hz because when I learned of it, the person said it was for people who got nothing out of the other two frequencies, who might have a different species of Babesia. However, I’ve had two conversations over the past 4 years that made me decide to revisit 753Hz. One person said that they had essentially gotten rid of Babesia with 570Hz, but when it came back, they couldn’t get rid of it the second time. So they used 753Hz and had a much better response for that relapse and the subsequent relapse before it went away for long enough that they thought it was gone. Another person said that they always felt better with 570Hz, but that it took 753Hz to get them into remission allowing them to finally stop coiling without the symptoms coming back.

I’ve previously been able to get the Babesia into remission with 570Hz. However, this year I could never quite shake it. Partly I wasn’t doing the full protocol with the level of consistency I needed to. There is now an open question about whether 570Hz is enough.

As a result, I’m on a one month plan, to be extended to 3 weeks past the last Babesia symptom, of coiling for both 570Hz and 753Hz, three times daily. I’m now 10 days into the protocol. A lot has already changed. I was feeling much better on just 570Hz, and the night sweats were gone. I was still tired every day, but by the end of a week, I no longer needed to spend a good part of each day lying down. Two days after I added in 753Hz, I had a night sweat, enough to change my shirt, but not enough to feel like I was drowning in my sleep. I had night sweats that got progressively lighter over the next several days. On the fourth day after I started, I had a massive headache with light sensitivity that lasted about 8 hours (bad enough that I wore sunglasses in the house) and heart palpitations. Since then, things have been looking up. Each day I have a little more energy than the previous day. I get tired in the afternoon, but I rest for 30-60 minutes, rather than napping for 2-4 hours. I’m still having a slight sensation in my chest that goes up to the left side of my neck, but it is minor.

A wild, male house finch I saw on my walk yesterday.

A wild, male house finch I saw on my walk yesterday.

I interpreted the temporary increase in symptoms to an additional die-off from the second frequency. Beyond that, I’m hoping to be at the three-weeks past the last symptom by Thanksgiving. Having more energy has been fantastic. I’ve started to use it doing light housework, which I know I can stop doing anytime and rest as needed. I’ve also gone for walks outside. It’s nice to be able to go for a walk at all, and even better that I don’t have to lie down for hours when I return. I’ve been enjoying cooking and eating my own delicious, fresh food. I’ve finally gotten through the emails I’ve wanted to answer and I’m considering a new blog to post photos from my recent trip. My quality of life has improved tremendously. Babesia really is the key to getting my life back.

Babesia Protocol

570Hz followed by 753Hz at each session

Morning (19 minutes total)

  • each shoulder blade – 1 minute
  • spine: upper, middle, lower – 1 minute each
  • each ilium back/side – 1 minute
  • each ilium back/central/upper buttock – 1 minute
  • spleen – 10 minutes

Afternoon (19 minutes total)

  • between legs: thighs, knees, calves – 1 minute each
  • feet through coil – 1 minute
  • each ilium front – 1 minute
  • each hip bursa – 1 minute
  • lower abdomen/pubic bone – 1 minute
  • heart/chest – 10 minutes

Night (18 minutes total)

  • head: each side, top, back – 1 minute each
  • each shoulder knob – 1 minute
  • each ribcage side/arm – 1 minute
  • liver – 10 minutes

Backburner Infections

Unfortunately, the other two infections, Lyme and Bartonella, have not stayed quiet in the weeks after I took antibiotics for the respiratory infection. As I notice symptoms coming on, I have done some coiling for them.

For Lyme, the symptoms started with the sensation that an insect is crawling around a small area of my skin. The the area changes to a different part of my body, far from the previous sensation. The first night this happened, I had a fit. I was lying in bed, the sensations made me worry that the recent flea infestation was back and worse. But there was no way a flea could jump from my ankle to my shoulder in a split second while I was in bed under the covers. I kept checking my skin and the bed, but the only small things I could find were lint. I coiled my head, my chest and my spine the following day (and for the 3 subsequent days, until yesterday), at three minutes on each location. The tingling was gone by the morning after the first coil. I have had some other Lyme symptoms, including a headache in the back of my head, shoulder and neck pain, a dull ache on the right side of my body, sleeping 10+ hours a night and some chest aches. Mostly it seems neurological, and the chest ache could be from Babesia, but I’m hedging my bets a little. They are going away, a little more each day. After today, I’m hoping to take a few days off from Lyme and use the coiling time to get to Bartonella.

For Bartonella, the symptoms are also neurological but different. I get tingling in my arms from shoulder to fingers and nerve pain in my arms. My intestines are some days okay and some days irritated. I wake up at night, hot but not sweaty, with crazy dreams. I have intermittent ringing in my right ear. My kidneys hurt and I have mild pain in my lower abdomen. I had an ugly vagal response with my very late menstrual cycle (my vision whited out but I remained conscious, and I had sweats and chills and weakness for hours after a bowel movement). My response is to coil for Bartonella when I can, hopefully more often in the next few days. The protocol for now is 6 minutes on the back of my head, 4 minutes on my sacrum, and 2 minutes on each shoulder knob as well as on my upper and central spine.

Planning Ahead

I spent that month on the couch in despair. I thought through a lot of things while feeling hopeless. Rather than recount all the fine details of my distressed thinking, I’ll end with what I decided for the next phase of coiling.

Last year, when the Lyme symptoms went away, I did a bunch of things that triggered Lyme flares, including adding in new foods and reducing supplements. I’m now able to function as well as I did before I made the changes. I also triggered the Lyme (and made the other infections active/more active) when I took necessary vaccinations for my trip to Mongolia. It ended up making me more disabled for weeks and months at a time. Looking back, I think the first actions to increase my dietary variety and reduce my dependence on supplements to feel okay were a good idea. The rest was a learning experience.

What I’m hoping to do in the next several months is to first get the Babesia into remission (or gone would be even better). Then I’ll get the Lyme to the point of no symptoms again. Once those are done, I’ll take another crack at Bartonella and see if I can get myself to be symptom-free for an extended period of time, something I can’t remember experiencing. At that point, I’ll evaluate whether I have any other active infections to treat.

I would like to be not-disabled by these illnesses for a period of time before I consider trying to trigger them again (eggs anyone?). If I’m healthier when I start out, maybe it won’t be as bad. Alternatively, at that point, I may decide that I don’t want to go through all the disability and psychological torture again, and that I can live with the infections as long as they remain dormant. Only time (and success with the coil machine) will tell.

Disclaimer

h1

Clarity

Wednesday, October 15, 2014

It’s been a whole month since I’ve been at the computer and able to write. Sometimes I wonder how I blogged the first year that I was coiling. I was definitely as tired as I have been this month. I was certainly sicker. I was also alone way more of the time. My only responsibilities were to take care of my cats. Back then I ordered out food or my mother did the cooking and brought it over.

My life is way better now. I spend time with my husband, even when I feel my worst, and I have to travel up and down the stairs multiple times a day. When I was too sick to cook, my husband brought in food. But as soon as I felt well enough to stand for a while, I was cooking, which used up all my energy. So no blog, but a little bit of life.

That first year, my biggest success was tackling Babesia. The amazing thing was that I started to have days when I wasn’t dead-tired. They weren’t frequent at first.  I was still pretty tired most of the time. But I could peel myself off of a horizontal surface and do something.

Twice this year, I was back in the dead-tired zone. The first time was from the end of March through the beginning of June. Most of those days, I was dead tired. Occasionally, I had days when I could do something, but I paid a steep price each time. Active days were followed by at least a week of being too tired to move. I was sure that it was the vaccinations I took making all the infections come out full-blast. I certainly had a multitude of symptoms from all the infections I’m aware I have. However, the key infection that made a difference was Babesia. Once I started the full Babesia coiling protocol, I was significantly better in a week. One week. If circumstances had been different, I would have coiled the full Babesia protocol for 3 weeks past the last trace of symptoms, but I couldn’t. I had too many things going on all summer, each punctuated by heavy fatigue. I kept trying to convince myself the Babesia was dormant again, which led me to wonder whether there is an active 4th infection.

Bronchitis

Where I was when the cough started

Where I was when the cough started: Ongiin Khiid, Mongolia

The second time I became dead-tired was this past month. I came back from my trip to Mongolia with a cough. The cough came and went and I was sort of okay.

Then September 14, my cousins came to visit. I pushed too hard to do things with them and ended up with a fever. I wrote my last blog post with the last bit of my energy before I headed to bed for a few weeks.

The cough turned out to be a very bad case of bronchitis. I had fevers every morning and every night. I was achy all over. My neck muscles were strained. I had no appetite, and when I did eat, I would feel nauseated after a small portion. I ended up losing 14 pounds in three weeks. I was dead-tired all the time. I slept a large portion of the day. I was up at night coughing to the point of gagging. When I took Advil for the fevers, I would sweat for two hours, feeling hot and cold until the fever broke. Then twelve hours later, I’d have a raging fever again (usually around 101.4 degrees F), and start the process over. When I took Advil at night, I couldn’t sleep because I was so uncomfortable, sweating and freezing and hot, repeat.

I tried coiling a few frequencies that I’ve heard might help. They did nothing. I ended up taking two courses of antibiotics in the fear that this infection might turn into pneumonia. The fear was in part because I was having night sweats every night, even before I started Advil.

The first antibiotic was azithromycin (Z-pack) for 5 days. I’ve taken it for Lyme before. I’ve also taken it as part of a combination to treat Babesia. It didn’t help much with the bronchitis, though I stopped having night sweats, except when I took Advil. The second antibiotic was levofloxacin (Levaquin) 500mg for 10 days. With the first dose, the coughing got much worse. I thought, just maybe, this might be finally expelling the infection. But it didn’t. I still had the cough and all the other attendant problems of this infection.

One night, I decided it was time to stop taking Advil. Whatever my body was trying to do with the fever, I needed to let it do. Nothing else was working. That night, I went to bed with a fever and coughed for a half hour. I felt like I was freezing. But when I slept, it was a sound sleep, rather than staying awake through hot and cold the way I did with Advil. I woke up once, drenched in sweat, but a comfortable temperature. A good night’s sleep gave me some clarity. A side benefit was no fever in the morning (even though it returned at night).

Acupuncture

The first clear thought I had was to find an acupuncturist. As I’ve written about in the past, acupuncture has played a key role in my health. When I first had the tick-bite (that I didn’t recognize as such), an acupuncturist reversed the worst of the joint problems and kept me healthy enough to work. When I became disabled by the tick-borne infection trio (Lyme, Babesia & Bartonella), but didn’t know what was wrong, an acupuncturist treated me for the immense pain, and got me well enough to look for other doctors who might know what was wrong.

I stopped using acupuncture after I’d been coiling for a while because acupuncture stimulates the immune system, especially if the imbalance I have is a depleted immune system. I wanted to let the infections stay active and kill them, so no more acupuncture. Then I moved to California and didn’t know any acupuncturists.

Somewhere in my recent fever-ridden haze, I realized that an acupuncturist might help me get rid of the bronchitis. I went to a clinic in town, Watsonville Community Acupuncture. The women who work there are competent and gentle. The place is rather inexpensive, and the treatments are in a room with other patients, all of us in recliner chairs. They suggested I come several days in a row.

After the first treatment, my nightly fever was only 99.5 degrees F. After the second treatment, which was the next day, my fever was gone for good. After the third treatment, one more day later, my cough was only in the morning when I got up and at night near bedtime. My appetite started to increase. I was starting to get my strength back, enough to do a little something. But I had no stamina. After 15 minutes of sitting, standing or walking, I was done for several hours, ready to lie down again.

I got two more treatments the following week. I was feeling different. The cough isn’t totally gone. It almost was, until I aspirated a tiny morsel of food last night. Now I’m all full of phlegm again. But I don’t feel sick the way I did.

Back on track

After the first three acupuncture treatments, I went back to coiling. I did full protocols for Lyme and Bartonella. I didn’t notice any kind of herx for Bartonella. The only symptom from the Lyme herx was moderately smelly urine about 48 hours later (which happened a second time when I coiled for Lyme again several days later). In any case, it’s no surprise that the two bacterial infections are mostly dormant after all the antibiotics.

I ended up with one other strange problem. The front of my right leg went into a painful spasm making it very difficult to walk. My gut told me to try coiling at 690 Hz for Mycoplasma fermentans (also an alternate frequency for Lyme). I did it three times in one day on my sacrum, 5 minutes each time. The next morning, I woke up feeling better, until I went down the stairs for breakfast. The stairs did me in. Not only did the front of one leg hurt, but my hips, on both sides, were stiff, tense and painful. It was bad enough that I wanted to shout, so I did. Then I tried yoga. I know enough poses to get myself loose. Forty minutes of yoga essentially fixed the problems.

Babesia Revisited

As things started to look up, I had a huge night sweat. No fever. Just a classic Babesia sweat. The next day I felt dead-tired. Again.

That’s when it hit me. I finally had some clarity about how difficult things have been since January. In January, I tried something with eggs in it. My intestines were in better shape than they’ve been in in years. Partly I wanted to see if I still had the neurological reaction to eggs. Partly I was seeing if I could trigger the Lyme to become active because I no longer had symptoms or herxes. I successfully triggered the Lyme, made the Bartonella worse and wrote all about it. What I didn’t realize is that I also triggered the Babesia and that it has been at least somewhat active all year. I was not so sure it was active because I didn’t get migraines or light-induced headaches. I never got the Babesia infection under control again, even after I realized it was active. I kept wanting to cheat, coiling less than I need to to beat it back.

This time, I’m not playing games. I’m doing the full Babesia coiling protocol, three sessions a day, at 570 Hz. I coiled for a week and I was much improved. The night sweats stopped. I’m not dead-tired. For good measure, based on a piece of advice someone gave me 3 years ago, I’m also doing the same protocol at 753 Hz. It is another Babesia frequency for when 570Hz doesn’t work. I had a night sweat the first night I coiled at 753Hz. So I assume it’s doing something.

The plan is to knock Babesia back to dormant or gone. Either would be fine, although gone would be preferable. For the next month, I’ll be doing the full protocol for each frequency every day. Or for at least 3 weeks past the last symptom. To accomplish this, I’m doing the bare minimum on Bartonella and Lyme, for both I’m only coiling my central nervous system. The goal isn’t try to vanquish all three infections at once, but to get rid of one, and prevent the others from getting too active. I wasn’t going to coil for them at all, but I can feel a few symptoms of each (tiredness in late afternoon–Lyme, tingling in arms-Bartonella).

Here’s hoping the next month takes me back to feeling normal, or at least as well as I did last autumn.

Disclaimer

h1

The Lure of Antibiotics

Tuesday, September 16, 2014

It’s been two weeks since I returned from vacation. I’ve been having a hard time since I left Mongolia.

Flaming Cliffs, Mongolia

Flaming Cliffs, Mongolia

That’s right. Mongolia.

It was a fabulous trip. We stayed in Ulaanbaatar for a few days, then took an overland journey through the Gobi Desert, the steppes and the grasslands, and a little bit into the mountains. Most days involved a lot of riding in the back of a Russian military-surplus van, seeing beautiful, wide open spaces. Each day we got to do some walking or exploring in a valley or by a river or near a sand dune. The driving time gave my body time to rest, making it easier to participate in the activities.

Of course there is more to the story than that.

The Lure of Antibiotics

Two days before the trip, a hard lump that I’d felt in my left eyelid for over a month became red and swollen. I made an emergency appointment with an ophthalmologist and walked out with 10 days of cephalexin (500mg, 4x daily). I didn’t really want to take an antibiotic, but my vision was at stake.

The ophthalmologist said that under normal circumstances, he’d want to see me again in two or three days, to make sure it wasn’t an infection that was spreading. I decided to take the antibiotic and hope for the best.

My eyelid got worse before it got better. It was pretty nasty for several days. Holding my head upside down got it to drain and reduce the swelling, but the strange red lump kept my eyebrow arched for over two weeks. Swollen Eyelid

Of course antibiotics don’t only target the acute issue for which they’ve been prescribed. Cephalexin isn’t usually used to treat Lyme because it is barely bacteriostatic against the spirochetes. However, it is used to treat dogs that have Bartonella visonii.

All I can say is that after an initial herx of the kind I get with Bartonella (night sweats, headaches, constipation, tingling in my arms, foot pain in the morning), I felt like a million bucks for the next week or so. It was fabulous. I felt completely normal. No Lyme symptoms. No Bartonella symptoms. No Babesia symptoms (which had gone away before the trip). I kept thinking that if antibiotics make me feel so good, why have I been coiling and suffering?

The short answer is that antibiotics weren’t working when I stopped taking them and started coiling. I think I’ve knocked down the infections to a much lower load in my body, and, quite frankly, my body has healed itself in the absence of overwhelming chronic infections.

Still, it seemed like a possibility to consider: going on low dose antibiotics indefinitely.

I’ve not really made any moves in that direction. I’d prefer to live without them and the side effects that come with them.

There is also the problem that comes attached to most lures: a hook. With antibiotics, the hook is the rebound that came after I finished the antibiotics and the infections woke back up.

But let me take a step back. I brought a heavy duty antioxidant with me (Sulforaphane Glucosinolate), just in case my symptoms got crazy while I was away. As soon as I finished the antibiotics, I started on the antioxidants right away. I didn’t want to deal with the rebound while I was on vacation and 6000 miles away from my coil machine.

The antioxidants helped keep things more or less under control for a week. By that time, I was getting more tired (but not the crazy exhaustion I’ve had to deal with in the past), more cranky, and noticing more pain. It was almost time to leave Mongolia.

We went to Beijing on the way back. That part of our trip was like National Lampoon’s Chinese Vacation. Oh so many things went wrong, but it was funny even as it was happening. We cut our trip short because we both had diarrhea, and I was starting to feel the antibiotic rebound.

The past two weeks that I’ve been back, I’ve been coiling for Lyme and Bartonella. I’ve had a crazy cough that started in Mongolia, got worse in Beijing (pollution!) and won’t give up since I came back. I’ve been feeling pretty much under the weather. Even with coiling, I’m having more problems, mostly respiratory, but yesterday, it turned into all over body aches and massive swings in my internal thermostat (freezing, overheated, repeat).  I decided to suck it up and take a short course of azithromycin to get the infection under control.

I expect that to kick up the Lyme after I stop it. In the meantime, I’m focusing on Bartonella, which should be less affected by this antibiotic.

One final note, yesterday, along with the body aches, I woke up with intense pain in the front of my neck. I convinced myself it was my thyroid. Turns out it is likely the muscles in the front of my neck. I had to take Advil this morning because the pain was so intense and only getting worse after 24 hours. I don’t know if it’s from the coughing or some other strange symptom of these diseases.

I’m so ready for these illnesses to be over. I want to feel normal at home, not just on vacation.

Disclaimer