Posts Tagged ‘babesia’

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The Sixth Package & A Seasonal Lyme Flare

Monday, September 5, 2016

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

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

The Sixth Package of CHIM

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

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

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

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

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

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

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

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

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

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

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

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

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

Combining Alfons Ven remedies with other supplements

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

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

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

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

Seasonal Lyme Flare

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

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

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

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

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

Disclaimer

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Slippery Hope

Friday, February 19, 2016

I’m about a week into using the Alfons Ven protocol. It has been a roller coaster in so many ways. Some days, I’m more symptomatic than I’ve been in months, days that feel like the worst of the autumn relapse. Other days, I wake up ready to get out of bed and do lots of things. It feels like I’m cycling through each of the symptoms I’ve ever had, in short, intense bursts, then moving on to the next symptom.

Tuesday was great. I went to Santa Cruz. I did a few errands. I met up with a friend for lunch. I worked on my writing class at the library. Wednesday, I started the day with a two-hour, ugly headache. I was sleepy and needed to rest and nap in the afternoon. In between, I was moody and worried, so I thought I might as well start my taxes. By the evening, my headache was back, though not as bad, and my abdomen was distended, stretched out and sore. Thursday, I spent the whole day in a daze. I felt like I never woke up because the brain fog was so bad. I found myself sitting on the couch listening to the radio, not knowing what the story was about. The fog didn’t lift until 9pm, giving me an hour to be awake before I got ready for bed.

Today, I feel less foggy, but my vision is off and I’ve been nauseated since I got up. I’m also having the kind of psychological herx that makes me think everything is hopeless. I’m fighting the feeling this time.

Hope and other slippery feelings

When I started using the coil machine, I was incredibly hopeful. Antibiotics and anti-malarials had gotten me past the worst part of the trifecta of tick-borne infections: Lyme, Bartonella, and Babesia. I was walking around without a cane. I had days when I wasn’t too tired and too foggy to do anything. But I was still a mess, in a lot of pain, and wondering if these drugs were going to help me get any better. I had “plateaued,” though I was still very low functioning.

Enter the coil machine. I spoke to someone who was having real success with it. Her life had changed dramatically by using a coil machine. When I was ready to give it a try, I did. My life has changed dramatically, no question about it. My daily level of functioning has fluctuated, with some really good weeks and months, some months of relapses and difficult herxes, and some in between times, when I was symptomatic but able to have several good hours most days.

I wouldn’t exactly say I’ve lost hope that the coil machine could get me back to a level where I could hold down a job. But there are some pieces I haven’t been able to figure out. I’ve worked on Bartonella for four of the five years I’ve had the machine, and I still haven’t had a remission. As I got further with Bartonella, the other infections would become active, over and over again. Then I’ve had a suspicion that I have some other infection or parasite that I’m not coiling for because I don’t know what it is. I assumed that when I got to a remission of Bartonella, I would move on to the next culprit. Yet, I have no plan to figure out what it is that I would need to eradicate.

The coil machine has gotten me very far, and it might have gotten me further still, but I was no longer convinced that it would get me to the end.

After I spoke to other people who have used the Alfons Ven remedies, I started to feel hopeful again. Beyond hopeful, I was eager to try them and was fantasizing about finally being free of these infections. I daydreamed about getting up in the morning and not immediately noticing something on my body that hurt to the point of distraction. I imagined not spending the morning writing and exercising instead of slogging through the fatigue that makes me want to get back in bed as I fight to stay upright and focus on something despite brain fog. I imagined having the energy to bike to the post office or the library. I imagined doing volunteer work for a bit until I could find a job, or better yet, finish editing my novel and work on getting published. It was fun to live with hope for the ten days between when I ordered the remedies and when they arrived.

As soon as I started taking the first remedy, FLUOX, I started to feel less symptomatic and more alive. The feelings of hope went into overdrive. I imagined contacting every person I know of who has a tick-borne illness and telling them to try the Alfons Ven remedies. I imagined contacting my former doctors and other health care practitioners and telling them to about it. I imagined that the other remedies that are available on the Alfons Ven websites would help my parents with the chronic problems of old age. I imagined getting the pet remedy for my cats who have a case of worms that won’t go away with the standard deworming drugs. I couldn’t stop thinking of how great it would be if this stuff worked.

When I added in the second remedy, CHIM, I came back to earth. I think I’m herxing from the way the symptoms cycle through. Having the opportunity to feel bad again reminds me that there is no quick fix to these infections. I’ve put my hope on hold for all the other people. Let me get through this first.

As hope slips away in the ugliness of brainfog, fear begins to take hold. The fear is not that I’ll waste six months on a treatment that doesn’t leave me any better than when I started. Somehow, I’ve made peace with the fact that this might help without actually getting me to the finish line. The real fear is that it will do nothing. Nothing is much worse than merely not working the way I hope it will. Nothing would mean giving the infections a free pass to proliferate and retrench for six months while I’m treating with sugar pills and energy medicine. That’s scary. That’s where the fear lands.

I’ve only signed on for two months, so far. And even in this first week of CHIM, I’ve been having a variety of shifting symptoms. The changeability of the symptoms helps to keep hope from completely slipping from my grasp. When I do little to nothing to treat the infections, the symptoms linger and slowly increase. Very little changes rapidly without some external stress to the infections. I haven’t given up, not yet, but I’m being honest about how I feel as I try something new and strange.

The Rest of the Treatments

When I started the Afons Ven remedies, I had a list of other pills and potions I planned to take. I’ve scaled back. For now, I’m not coiling at all, not even the few minutes on my pancreas. I decided that it was both too soon to work on it, if uric acid is the problem, and too complicated. I couldn’t start all the supplements and detoxing agents, not all at once, but I’ve been figuring out how to add them in, one at a time, without driving myself crazy.

The first thing to do was determine if uric acid is a measurable problem in my system. So I got a uric acid test (a simple blood draw), and I expect the results next week. Second, I started on the supplement to reduce uric acid, just in case, while I wait for the results. Third, though actually first chronologically, I started taking chanca piedra drops in warm water before breakfast (generally at least 30 minutes). This has helped my kidneys calm down.

Fourth, I started taking Aviva, which comes with the Alfons Ven remedies, 20 drops in water, twice a day. It is supposed to help with the type of detoxing one needs to do with the FLUOX and CHIM remedies. It tastes like reishi, which isn’t one of the ingredients.

The last thing on the list is to take a zeolite supplement to help the detox process. I haven’t quite worked it in, but I find it is on my mind today.

Beyond the remedies, I’ve been doing yoga some days. I’ve been doing my best to eat well, lots of fruit, vegetables and protein. I’m drinking more water than I had been for a while. I’m taking time to rest each afternoon, even if I don’t nap. It helps to respect that my body has a lot going on inside.

Ring necked dove

One of a pair of ring necked doves I saw when walking around the block.

I’m forcing myself to go for a walk whenever I’m not sleepy. In fact, I’m going for a walk right after I finish this post. Walking is good for a million reasons, which is why I persist despite my foot troubles. Sometimes I see something beautiful. There are buds on the trees, even flowers on some of them in my neighborhood. Earlier this week, I saw a pair of doves on my block. Hope or no hope, it is a pleasure to be alive.

Disclaimer

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Flux and FLUOX

Wednesday, February 10, 2016

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

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

Bartonella and the Flare Problem

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

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

Still, I felt like something else was off.

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

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

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

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

The Coil Machine Problem

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

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

Flux

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

Costume dress-up

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

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

FLUOX

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

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

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

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

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

Disclaimer

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Back to Basics

Wednesday, November 11, 2015

In my last blog, I talked about viruses. It was part of a side trip I took on my journey towards wellness. Although I sometimes think I have another infection, or several, that contributes to my symptoms, I learned once again that until I get rid of the three basic infections, nothing else will get me well.

The first clue is that when I stopped coiling for all the viral infections (Epstein-Barr, HHV-6, Cytomegalovirus, & XMRV) and for Mycoplasma fermentans, nothing got worse. No symptoms crept back up. Either they were not the main issue or I got rid of a viral flare very quickly. But my main symptoms are still waiting.

The second clue is that when I increased the coiling for Bartonella, I herxed more (mostly kidney pain, abdominal pain, urinary hesitation and increased neuropathic sensations in my arms). Bartonella is the culprit behind many of my strange symptoms. The biggest reminder is that I think I had Bartonella during childhood. When I go back to the strange symptoms I had back then, I can see the possibility that Bartonella might be a cause of the recent symptoms: the cough and bronchial inflammation (similar to every year of high school), the heel pain in my left foot (now moving around and similar to other neurological foot pain caused by Bartonella), and the unrelenting fatigue (which I’ve overcome several times over the past few years by coiling simultaneously for Babesia and Bartonella). No definite conclusion, but I’m coiling more for Bartonella. The foot pain comes and goes. The cough disappeared until I had two nights of inadequate sleep. (I found something else to help me with the fatigue for now. That work-in-progress is explained under the section on maca.)

The third clue is that coiling for Lyme more frequently has gotten rid of the joint pain I thought might come from Mycoplasma fermentans. Coiling for M. fermentans did not alleviate the joint pain. Coiling for Lyme more frequently (every 3-4 days instead of weekly) did the trick. Speaking of tricks (and treats), I think I had just gotten through the autumn Lyme flare when I triggered another one with Chinese herbs and a Halloween candy binge. The Chinese herbs upregulated my immune system, then when I stopped them, the Lyme woke up. Having awakened the Lyme beast, I then ate leftover candy that the local Trick-or-Treaters didn’t scoop up on Halloween (a larger quantity than I care to admit). Needless to say, I triggered a nice flare of Lyme symptoms. After coiling my full body three times, the symptoms have receded into the background. They aren’t completely gone, so I’m still coiling every 3-4 days.

The fourth clue is that my night sweats are gone and my headaches less frequent. It took two weeks of coiling for Babesia to get rid of the night sweats. Now I only have Bartonella headaches and not Babesia headaches. I’m going to coil for a few more days for good measure, then I’m done (hopefully until at least the end of the year).

These four clues have me back on track. It seems silly to go chase after all the viruses and other infections when I still have Bartonella raging in my nervous system, wreaking havoc throughout my body. There may be a time, when Bartonella is a memory rather than a current experience, a time when I can successfully hunt down the viruses and climb several steps closer to health.

Maca and the Energy Conundrum

I couldn’t deal with the unrelenting fatigue. I was casting about for something to give me enough energy to figure out what to do next. Then I stumbled upon maca in a book of juicing and smoothy recipes (Crazy Sexy Juice, by Kris Carr). I dug into my cabinet, found an enormous quantity of maca, and began using it right away.

Originally, a doctor told me to take maca, a Peruvian root from high in the Andes. It disrupted my sleeping patterns at first, but succeeded in improving my daytime energy. I took it for over two years. I stopped taking it when I ceased taking almost all of my supplements. Actually, going back to my old blog posts helped me figure out that the sleep problems from maca worked themselves out as I continued taking it.

This time, however, I had no patience for not sleeping. For the first ten days of taking less than 1/2 tsp of raw maca powder in my breakfast (either a smoothie or a chia-seed-based warm custard), I slept less and less each night. When I was below 8 hours, I was tired during the day again. No more daytime energy. “What’s the point of this supplement?” I thought. I stopped taking it for two days. The first day I was a bit tired in the afternoon, napped and slept better that night. The second day I was tired all day, again, but not quite as tired as before I started the maca. I had enough energy to bake, which is what I did.

I read up on maca while I was taking it. In the US, people consume raw maca powder or gelatinized maca powder, a cooked version that is stripped of its carbohydrates. People in Peru consumed cooked maca. They even bake with maca powder (flour). The potential downside is that it reduces the potency of the maca. I saw reduced potency as an upside. I’d like some of the effects of maca without the full punch it delivers.

Thus I baked a flax and garbanzo bean flour bread, substituting a small amount of garbanzo bean flour for maca flour. It worked out okay. I’ve been eating a portion of the bread every day for breakfast. My energy is better. My sleep is better. I may need to nap some days, but when I’m awake, I’m alert and able to work on anything I want. I’ve been doing some cooking and working on making a few Christmas gifts.

It took a few days for the sleep to even out. But it takes less time to fall asleep (much less than the two hours it took my last night of raw maca!), I wake up less often, and I can sleep for about 9 hours. The confounding part is that my menstrual cycle should be starting any day now. PMS often gives me insomnia, which I’m starting to experience again.

A last random note about maca. I read someone in an online review say that it gave her swollen lymph nodes in her neck. In a separate online forum, people cautioned against maca for people who have chronic fatigue syndrome because it may activate some of the viruses in the herpes family. When I took the raw maca, my lymph nodes (which are prone to swell pretty often, especially when I have Bartonella flares) swelled up. The second day that I didn’t take it, my Lymph nodes went down. Now that I’m eating baked maca, my lymph nodes are swollen again. This symptom isn’t a sufficient deterrent. I like having a baseline of energy to use during the day.

Smart Coiling

I need to take a moment here to acknowledge that I always find a way to get sidetracked from coiling for Bartonella. Sometimes it’s a Lyme flare. Or a Babesia flare that requires daily coiling. Sometimes it’s my fear that there is some other infection taking over.

Right now, I’m reminding myself that until the Bartonella is gone, it has to remain the top priority. Bartonella comes back when I don’t coil enough or when I take coiling breaks to visit my family. Bartonella gets triggered when I catch a cold or don’t sleep enough or overexert myself. Bartonella is the infection that is not only active right now, but has the ability to make things much worse very quickly. If I’m not coiling for Bartonella, I’m wasting my time.

Having said that, Bartonella is the infection that makes me feel most hopeless. The herxes make me feel like there is no point in trying to get well, gives me an unshakable feeling of despair about my life, and makes me want to stop coiling altogether. I don’t imagine that the infection has intelligence and is able to fight a psychological war to prevent me from eradicating it, but that’s how I feel sometimes.

As of today, I’m rededicating myself to getting rid of the Bartonella infection as soon as possible.

Odds and Ends

I recently read a science fiction novel by Janet Edwards, called Earth Girl. The heroine is a young woman with a condition that renders her handicapped in relation to her peers. It is a chronic, incurable condition. Yet she is strong, smart, tenacious, and effective in accomplishing her heart’s desires. As a woman with a chronic, incurable condition that renders me handicapped in relation to my peers, I fell in love with the book. I recommend it to other readers with tick-borne illnesses.

The most recent issue of Lyme Times arrived. The big news is a database called MyLymeData which allows people with chronic Lyme Disease to share their experiences with people doing research on Lyme Disease. I haven’t yet had time participate, but I read about the project and got really excited. There are finally researchers who are trying to find a cure and using our experiences as Lyme patients to guide them.

Disclaimer

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Virus Hunter

Wednesday, November 4, 2015

I’ve learned a lot over the past two weeks. I started with the kind of despair that I often get with a Bartonella herx (though I didn’t realize what it was until it was over), which led me to reconsider the way that I’ve been trying to get through the extreme fatigue I’d been dealing with since August. (No wonder the despair didn’t need to be triggered by an infection.) Beyond the fatigue and the recurrent pain, I was trying to get rid of a cough, also from August, and pain in my heels that impedes my ability to walk–pain that I’ve had since mid-October.

The quick rundown is that I tried another round of Chinese herbs, a different formula that tackles viruses. It came on the heel of a friend mentioning that HHV-6 flares are sometimes linked to respiratory inflammation. So I turned my attention to viruses. As I mentioned last time, I started with Epstien-Barr virus because it is on a list I have of the order in which the chronic infections usually activate. But as the two weeks progressed, I tried coiling for HHV-6, XMRV, and Cytomegalovirus (CMV). I had some interesting results, but none of the coiling got me through the fatigue or the pain in my heels and feet that I’ve had since mid-October. The coughing stopped between the herbs and the HHV-6 coiling.

After all of this, I had a moment when I decided to go back to basics. I started by going back to coiling for Bartonella more, since previous problems with pain on the soles of my feet were resolved with Bartonella coiling. Then I pulled out some maca I have in my cabinet and started with a small dose. That night, I slept more soundly (if a bit less), and had energy during the day the next day. I’ve continued with the maca and I feel like I’m getting back on track.

Bartonella Despair

It comes on so suddenly. I start out with the usual fatigue and then I get overwhelmed with the number of years of my life these infections have cost me. It is almost nine years since I had to stop working. It is almost eight years since I got diagnosed with Lyme Disease. It is seven years since I realized the disability wasn’t going to go away “soon.” It has been almost five years since I stopped antibiotics and started using the coil machine. It is two years since I started eating food again (and got rid of all the food sensitivities) and have begun triggering the infections to try to dig out what is left dormant. It was three months that I found myself mostly at rest again, unable to do the things I thought were part of my life again (like cooking and going for walks). The feelings came on so strongly and I was ready to call it quits.

I’m not sure what call it quits meant. I wasn’t suicidal. I was just ready to give up hope that I could have my life back in any way on an even semi-permanent basis. I was looking straight at the ugly possibility that I will be stuck in this significantly incapacitated state forever. It was rough.

I cried during my acupuncture session. I moped for a few days. I got obsessed with trivial things that “felt wrong” in my life. I wished for a different life for myself and my future.

Then the despair lifted.

It was just as sudden. It disappeared after some Chinese herbs and some detoxing smoothies and lots of sleep. In the hours after it cleared, my mind calmed. I rested even more the next day. Then it hit me. I still haven’t gotten to the end of Bartonella yet. And this kind of despair always comes with Bartonella herxes and flares.

Reconsidering what to do

With a clearer head, I took stock. I’d been coiling for Mycoplasma fermentans three times a day for about two weeks. I couldn’t find any obvious changes that weren’t directly attributable to something else. The cough, fatigue, and heel pain weren’t changing. Even the aches in my joints and my ribs were consistently intermittent. I felt I had done enough with Mycoplasma fermentans (for now at least).

Babesia coiling was progressing. I was having some night sweats and some short migraines. (Short migraine being defined as going from aura to the headache relenting over the course of 12 hours.) The fatigue wasn’t abating, but I thought the Babesia treatment was worthwhile.

I was also coiling for Bartonella. I had modified my program to the one listed below because I had so much other coiling to do. I was having night heats (hot but no sweat, need to get up and cool off before going back to sleep) on the nights when I didn’t have night sweats. I had some, mild neuropathic tingling in my arms and legs, but nothing near as bad as August and September.

Bartonella (in a pinch) Coiling Protocol

832 Hz

Morning

  • back of head – 6 minutes
  • sacrum – 10 minutes

Afternoon

  • head: each side, top – 2 minutes per location
  • each shoulder knob – 2 minutes
  • spine: upper, middle – 2 minutes per location

Evening

  • back of head – 6 minutes
  • sacrum – 10 minutes

I was not really progressing. But, the idea of tackling viral infections made me take note.  In the past, I’ve had high antibody titers (thought to be indications of active viral infection) for Epstein-Barr and HHV-6. I’ve never been tested for XMRV or CMV. These were the viral infections I had on my mind.

 

Chronic Illness and Viral Infection

I spent a bunch of time on the internet looking up viral infections and their posited role in Chronic Fatigue Syndrome. I go back, over and over, to the research in CFS because I think Lyme Disease is one of the etiologies that triggers the CFS cascade of symptoms.

A story on NPR about how depression might be triggered by infections (including viral infections) gave me a place to start my research. (The story itself was disturbing on a variety of fronts, but it still gives me hope that people with chronic illnesses will have a better shot at being treated for the underlying causes of their illness rather than being bombarded with SSRIs.) One comment in response to the story mentioned the ME/CFS clinic at Stanford University. On that site, I found a list of infections (including Lyme!) that are associated with CFS. I was very appreciative that someone is finally doing this kind of research.

As I read through the information, I became more convinced that I needed to see if coiling for the different viruses made any difference, especially in the fatigue I was experiencing. I discovered that one of the treatments that the clinicians at Stanford are using is antiviral drugs. I used one in the months before I was diagnosed with Lyme Disease. It made me feel a little less tired for about two weeks, then ceased to provide any benefit. Even though I may have had active viral infections, I had other undiagnosed infections that were causing my symptoms. But who knows today what the biggest culprits are and which to treat?

Coiling for Viruses

I started out coiling for Epstein Barr Virus. I focused on my head and spine, the immune privileged areas where the virus is likely to hide out (or live inside nerve tissue). I also coiled my spleen, liver, abdomen and chest, in case the infection was in my blood stream or internal organs. I was also coiling my chest to see if I could somehow influence the direction of the three-month cough.

Coiling for EBV was pretty unremarkable. I used 880Hz. I think it triggered a few headaches. The pain in my heel lessened temporarily, but came right back. I used the frequency for a week but saw no big swings of improvement or herxing.

I had a much bigger reaction the first time I coiled for HHV-6 at 228Hz. When I put the coil on my sacrum, waves of vibration went down my legs. It was freaky to say the least. It is not an unknown sensation (at this point I’ve had so many strange and difficult to describe neurological sensations that I can’t even catalogue them), but one I’ve never experienced for five consecutive minutes. Very odd.

I used the HHV-6 frequency for about a week. I coiled a lot because of my body’s initial reaction to the frequency. I coiled the back of my head and my sacrum twice a day. Then I covered the rest of my head and spine, my spleen, liver, abdomen and chest. I even coiled my shoulder knobs, as I do for Bartonella. I had some neurological sensations the first time I did my shoulders. But after the first coiling session on each body part, nothing else happened as an immediate reaction to coiling. I got brief, high intensity headaches. My chest cold seemed to depart (finally!). The only caveat to the chest cold clearing up was that it happened at the same time I was using a very strong Chinese herb formula that might have cleared up the cough.

On a lark, I tried coiling my sacrum for XMRV (448Hz) and CMV(597Hz) in the same coiling session. By the time I was finished, I had a new headache and my ribcage hurt. I’m not sure if either symptom was related to either frequency. But it left me with the idea that I should come back to these frequencies.

After all these frequencies, I felt overwhelmed. What should I be coiling for? Which treatment do I prioritize? Are these working at all? What about continuing Babesia until this flare is gone? What about getting to the end of Bartonella? (And what if I need to coil for Lyme more than once every 7 days to keep the symptoms at bay?) And most importantly, why am I still tired all the time?

Maca and Bartonella Reboot

Things got back on track in the random and usual way. I read something that reminded me of something and I decided to try something I’ve done before (or always planned to do).

This time, I read Crazy Sexy Juice, by Kris Carr. I follow her blog and have enjoyed her movie. Anyway, I splurged on the book, hoping to find more interesting (or more potent) options for my not-so-smoothies. (I make smoothies somewhat regularly, but I don’t blend them to full smoothness because I like to chew to get my salivary enzymes involved in digestion.) The books has a partial list of superfoods that included maca. I have two bags of maca in my cabinet. I used to use maca for a long time, but I stopped it when I was dumping all my superfluous supplements. There is quite a lot left.

So I started putting maca in my morning smoothie (or hot chia “cereal”). The first day, I used 1/2 teaspoon. I slept really well that night. I continued to used 1/2 tsp or less for several days. I’m more awake, alert, and have some energy since the second day of using maca. I’m sleeping more soundly and fewer hours. This is the downside of maca. I think it regulates my hormones to stop me from sleeping more than eight hours, even if my immune system is crying out for extra sleep. Now, a week after starting maca, I feel the irritation in my bronchial tubes starting again. (Lack of sleep was where the three-month cough began.)

Despite the possible downside, I am so relieved to be able to cook and walk and hang out with friends and type and do all the other low-key things I like to do. Three months of blah was really horrible.

My mind feels more clear and less groggy-alternating-with-unsettled. I decided that I could try to pursue more coiling for viruses, but that it would be wasted coiling time. These viruses are going to keep coming back until my immune system reaches a homeostasis. For that to happen, I have to get to the bottom of the Bartonella infection.

I put more coiling time into the Bartonella infection for the past three days. I can feel the difference already. My kidneys are killing me. That is my most characteristic sign of a Bartonella herx. What I think I need to do is focus on Bartonella, especially after I’ve completed a few weeks of Babesia treatment after all the night sweats are gone. Then it is all Bart all the time.

If I reach a point where the Bartonella herxes calm down, even at full coiling time (three times a day coiling my entire central nervous system), I have some serrizimes on hand. These are supposed to help break up biofilms, which is where I think the reservoir of Bartonella and Lyme bacteria live. I have a new plan. And new hope.

Disclaimer

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Immune Privileged

Wednesday, October 21, 2015

I’ve had two weeks of lots to do and lots to think about. I went to the East Coast for a funeral and for my mother’s 80th birthday. The original plan was to visit my mother, but the trip started sooner than planned when there was a death in the family. By some magic, I pulled myself together and was able to function for the duration of the trip.

Since I’ve been back, things are rocky again. I’ve been overtired and having a variety of symptoms, mostly in my chest (the cough that won’t go away) and my digestive tract. I have some pain and other neurological symptoms (especially today, with the right half of my body hurting and oversensitive), but the key thing is the unrelenting fatigue. Before I left, I started to try out a frequency for Mycoplasma fermentans, acknowledging, after all this time, that other infections might be active in my body. I have new insight on that, after trying out the M. fermentans frequency, and the results are below. The time on the couch and in bed, listening to the radio, surfing the web, as well as a trip to the acupuncturist have me thinking differently about what I should try next.

The Magic of Stress Hormones

I knew my cousin Tommy was sick. Many of us knew that he was having abdominal pain for about a year. Eighteen months before that, he became diabetic, but was able to control it by losing weight way faster than his modified diet could have dropped the pounds. In August, he was diagnosed with pancreatic cancer. From there, it was a battle that lasted a very short time. Only two months. Now he’s dead.

The scary thing, his age, only 49 years old, weighs on me. The other scary thing, the time from his first  symptoms to his diagnosis, over 2 years, meant that he lost 2 years of opportunity to fight the cancer before it reached the point of no return. As a person with chronic Lyme Disease, these events tend to upset me: time lost when the illness gains ground, being struck down so early with lots of good years expected. But he’s dead. I’m still fighting. I’m at a loss. When I think my fate is unfair, this puts back in perspective how much worse things could be.

Not that I need to compare. But this kind of stress weighs on me, weighed on me as I was hurriedly looking for a motel and figuring out logistics to leave the day after I got the news. My husband, Joe, did the hardest part, spending an hour on the phone so the change in plane tickets wouldn’t cost as much as two months of mortgage payments. Then we packed, arranged cat care, said a quick good-bye to Joe’s son who was visiting and suddenly we were on the plane.

The cough, which had been coming and going and coming and going, was on a two day hiatus, as I tried coiling for Mycoplasma fermentans. I wasn’t sure if the absence of the cough was just part of its cycle or if the frequency was responsible. Either way, I was grateful not to be coughing as we left early the next morning for our flight.

Although I was exhausted before we started, I was pumped up on all my stress hormones. These got me through the plane ride to DC, the 5 hour drive to Long Island, the days at the funeral home seeing relatives, the grief of the experience, the time with family in between events, the funeral itself, and a quick stop to visit the graves of my dad’s parents and sister and her family.

I managed to keep the energy going by taking a side trip one morning to the Atlantic Ocean, Jones Beach to be precise. Joe needed a break from the stress and proposed dipping our toes in the water. It was just what I needed, too. We sat on the beach for an hour before heading back to the grieving and consoling.

Dipping our toes in the water at Jones Beach.

Dipping our toes in the water at Jones Beach.

The stress hormones didn’t die down at that point. We still had a 9 hour drive after the funeral to Williamsburg where my parents and my sister’s family live. Then I had three days with my niece and nephew who are of the opinion that I should play with them every moment they’re awake, nap with them, and sleep with them at night. If only. I need a few minutes after they go to bed. And of course, there are things to do with the adults. It was a full trip to say the least.

My nephew and I played tag in Colonial Williamsburg. He can run as fast as I can. I was a bit concerned. As he gets older (than his current age of 4) he’s going to get faster. As I get older (from my current age of 40) I’m going to get slower. Hmmm. The main consolation is that I can run at all.

When we got back from the trip, I spent a day horizontal, first in bed, then on the couch. I really couldn’t do anything else. I had one somewhat busy day, then I really crashed. As the stress hormones finally cleared out of my body, it was time to pay the piper. I’ve been doing a lot of resting at home. I’m back to coiling and back to traditional Chinese medicine.

Mycoplasma Fermentans

When I got back in town, I started with a day of coiling for Lyme, then moved on to figuring out whether Mycoplasma fermentans was something I should be coiling for. To review, I’ve been wondering whether the ongoing fatigue and other symptoms, including coughing and bowel troubles, were from an untreated infection, or whether the real issue was the need to detoxify my system from the die-offs from the coiling I’ve been doing.

On the side of an untreated infection, I have a new symptom pattern, particularly, coughing to go with the fatigue, pain on both sides of my ribcage (as opposed to only the right side which I get with Lyme), pain in my heels-especially on the left foot, some other joint pain, and irritated bowels that tend toward constipation but alternate with urgent stools. Other considerations include commonly undiagnosed and difficult to diagnose infections that other people with Lyme report. Other coil machine users report that there are infections that don’t activate until the big 3, Lyme, Bartonella, and Babesia, are more or less gone or deactivated. Then it is time to work on the previously dormant infections. Also, when I took the last round of Chinese herbs, I had a herx reaction (headache, loose stools, sweats, more pain than usual, itchiness, low blood pressure, insomnia). That points to an active infection other than the Big 3 infections which no longer give me noticeable herxes.

What got me thinking about detox was a video I saw on Lyme Less, Live More, a reminder that detoxing will often reduce symptom severity. The only thing is that detoxing, while being a necessary step, is not actually a solution. I had increased my detoxing activities (mostly with teas and supplements, greens and fiber) but the symptoms were staying put.

Right before I left, I coiled a few times for Mycoplasma fermentans at 690Hz. I coiled my whole body, including all my extremities for a minute, plus extra time on my central nervous system, my abdomen, chest, liver, spleen and kidneys. It seemed that the coiling got rid of the cough. I was pleased but not convinced.

When I came back from the trip, I was overwhelmed with 4 infections that I thought needed to be treated with the coil machine: Lyme, Babesia, Bartonella, and Mycoplasma fermentans. It’s too much. I only need to coil for Lyme once a week (I think), since it is not symptomatic right now. Of the other three, I thought I would give Babesia a one-day coil to coincide with the nightsweat that comes at the beginning of my menstrual cycle. The same day, I coiled for Bartonella and M. fermantans.

I got a whopping headache that day. I rejoiced in my pain, thinking that I had hit upon something with the M. fermentans. Only one problem. I woke up the next day, coiled again for Bartonella and M. fermentans, and no more headache. It seemed to disappear too quickly. I held back my judgement, but made note of the oddness.

The rest of the week, I coiled for Bartonella and M. fermentans. This had no effect on the cough which came back when I got home. This had no effect on my fatigue. In fact, the fatigue was slowly getting worse and worse. I was mildly dismayed. Maybe I don’t have M. fermentans. I’m just not sure.

Yesterday, the fatigue had reached a point where I thought that I might still have an active case of Babesia. I added 753Hz as the Babesia frequency back into the daily rotation. BAM! The same headache as last week, turned down ever so slightly on the intensity. This answers the question about what is causing the herx headache: Babesia, not Mycoplasma fermentans. Today, I coiled again for Babesia. The headache is back, but at a lower intensity.

Just for the record, after coiling my whole body for Mycoplasma fermentans twice, I changed up the coiling plan. I focused on my chest, abdomen and central nervous system, since those were the areas that symptoms came from. I’m writing out my daily coiling plan even though I can’t really recommend it because it had no discernible effect on me.

Mycoplasma fermentans

690 Hz

  • Head: each side, top – 1 minute per
  • Back of Head – 4 minutes
  • Spine: upper, middle lower – 4 minutes per
  • Chest – 10 minutes
  • Abdomen – 5 minutes

The whole episode of coiling for Mycoplasma fermentans reminds me of how I approach coiling and healing more generally. First, I never believe what I read on the internet or what someone tells me until I confirm it for myself. I use the internet and fellow Lyme patients and health care professions as sources of clues as to what I might do to take the next step in getting well. From the information, I formulate a plan or a hypothesis, which, as I test out, I can learn whether the information I uncovered applies to me. It may well be that I don’t have a Mycoplasma fermentans infection, or that the one I may have doesn’t respond to 690Hz, or that it isn’t active right now. However, I did learn that coiling for Mycoplasma fermentans at 690Hz doesn’t seem to affect my constellation of symptoms, for better or for worse, so it is not what I need to devote time to during the current period of time.

Immune Privileged Tissue

During my week of couch-bound fatigue, I happened upon a few pieces of information that have changed my perspective on these chronic infections. First and foremost, two people talked to me about viral infections. A friend reminded me that sometimes chronic HHV-6 infections in people with Lyme Disease (or fibromyalgia or chronic fatigue syndrome) are associated with respiratory inflammation. That was one clue. Then when I spoke to my acupuncturist, she said that a lot of my symptoms are associated with high viral loads. She’s taking this into account as she prescribes an herbal formula.

The next clue was an article on NPR about the limits of what is known about Ebola. The article was refreshing in so many ways, particularly the open-minded attitudes of medical researchers to acknowledging that they don’t have all the answers. It had its frightening aspects, as do all articles about Ebola. In the article, there is a discussion on where different virus species hide out in the body and persist, long after being cleared from the blood stream and the areas that are easily reached by the human immune system. Places the immune system doesn’t reach, such as eyes, joints, nerve tissue, and, in men, testes, can harbor a virus for a long time after the host is “cured.” Thus, common virus species, in addition to Ebola, can cause blindness, long term joint problems, and relapses in the nervous system. The common examples of the nervous system relapse is shingles occurring decades after a person has recovered from chicken pox.

These areas are not accessible to the immune system, possibly because the immune system can potentially damage or destroy these tissues, even as it does its job normally. They are called immune privileged tissue.

All this got me thinking about how the infections I have could be storing themselves in my body. At this point, almost all my symptoms have a neurological component, fatigue, cognitive problems, tingling, dysautonomia, today’s strange pain on the entire right side of my body, etc. In some ways, it doesn’t matter which infection I’m working on: the flares and the herxes are primarily neurological. The only infection this isn’t true of is Babesia. That infection is stored in a different immune privileged  space: bone marrow.

Back to the neurological mess. I have often believed, as a result of my symptoms and a feeling that pervades my mind, that much of the infected areas of my body are my sacrum as well as my cervical spine. Maybe this is where all the biofilm colonies live. Or maybe I have a reservoir of bacteria (Lyme, Bartonella) and viruses (HHV-6 and Epstein-Barr Virus) that have taken root in these locations, only activating when my immune system is otherwise overtaxed.

I mention HHV-6 and EBV because I’ve previously, during the years of disability, had off-the-charts antibody titers for both of them. I even took Valtrex, which was supposed to help with the viral infections. I didn’t notice a benefit that lasted beyond the first few weeks, but this drug might not be able to get into nervous tissue any better than my immune system can.

In the present, infections in immune privileged places may mean that while I’m so busy trying to figure out which infection causes which neurological symptom, I’m really on a wild goose chase. The symptoms may be a result of any active infection in the neurological system. This would explain why coiling at frequencies for the infections that previously got rid of symptoms doesn’t work anymore. The symptoms are similar but a different infection is active.

Today, I stopped coiling for Mycoplasma fermentans. I started working on Epstein Barr, 880Hz. In the past, 880Hz has done very little, possibly because I only coiled my abdomen. By the time I go to bed tonight, I will have coiled my spine and my head, three or four minutes on each location, as well as my liver, spleen, abdomen and chest for 5 minutes each. Having already done my spine and most of my head, I’m already feeling the neurological pain spreading through both arm and my neck, getting worse as I type.

Maybe I have made enough of a dent in the bacterial infections. Maybe it is finally time for me to start dealing with the viral infections. It’s time to test out this new possibility.

Bartonella

With all this excitement, let me not forget to mention Bartonella. I am still a little bit symptomatic. I still herx from it, with constipation, acne, some insomnia, some kidney pain. That infection isn’t gone. But, it might possibly be the reason I am now tackling other infections. As the Bartonella slowly goes away, I think it is having an impact on the functioning of my immune system. And as the immune system changes and responds, I think it gives the other infections an opportunity to reactivate.

Disclaimer

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Recharging an old battery

Saturday, October 3, 2015

I can’t figure out how to get my energy back. It’s been seven and a half weeks since I returned from Williamsburg and New York and helping my parents move. It has been a rough go. I’ve been trying desperately to kick a chest cold I caught while I was there. I can manage to get rid of it for a day or three, but it keeps coming back. Or rather, the cough keeps coming back.

So where does this fit in to my healing process? That’s the big question. The cough seems to be part of a massive drain on my internal batteries. There are times in the past that I’ve thought I’m missing something, that there is another chronic infection I haven’t yet identified or treated. Most of the time, though, the missing piece was Babesia. It would drain me of my energy, have me flat on the couch, or walking around playing a recording of how exhausted I felt.This time is a little bit different. I treated for Babesia without much improvement (more on that later), and I haven’t been consistently tired.

It’s more like I came back from my trip having expended my daily energy quota, plus the back up energy reserve, plus the emergency energy supply, and I was all tapped out. So I did the things that help me feel better. I rested. I coiled. I ate well. I started to feel a little better for a day, did something more (and there have been a lot of things to do, more on that later), crashed, and started over again. I keep crashing. I keep getting right back up after a day or two of rest, doing something minor, and crashing all over again.

It feels like I can’t get access to my back up energy reserve or my emergency energy supply to fill them up again. Or really, that I can’t even recharge my daily battery to give me a shot at having a few reasonable days in a row.

This energy thing, coupled with being in bed 11 hours a day (plus naps, some days), and doing everything in slow motion, is why I haven’t been blogging. I had too many other things with deadlines. All of them were good things, not inherently stressful. But if I could, I would have just rested and rested and rested until I was bored, then rested some more…even on the days when I felt like I had energy to burn.

Snowball Effect

When I was having my summer adventure and expending my meager energy as though it was a renewable resource, I wasn’t sleeping enough. The lack of sleep helped me catch a cold. The cold taxed my immune system, so I had a Bartonella flare. The Bartonella flare taxed my immune system even more, so I had a Lyme flare. The Lyme flare knocked me out, so I had a Babesia flare. Yikes!

When I got home, I was so hyped up, I needed to do something at all moments. So I did a few things. I finished two yarn projects, a knitted sweater and a felted hat, in time for the county fair. I enjoyed those immensely.

I won a blue ribbon and a green "best in section" ribbon for the felted objects section.

I won a blue ribbon and a green “best in section” ribbon for the felted objects section.

I won a blue ribbon for a sweater I made for myself!

I won a blue ribbon for a sweater I made for myself!

Then I finally calmed down and slept a bunch. I got myself back onto a reasonable coiling schedule. First I started up with Lyme to get the symptoms under control. I coiled for Lyme, which I’ve continued to do every 3 or 4 days. I coiled for Babesia at 753Hz, 3 times a day using Babesia protocol, for two weeks. At that point, I was done with the night sweats, headaches and heart issues. In the midst of it all, I was also coiling for Bartonella, using a new protocol.

While I was thinking about the idea of a snowball effect, I watched the free-for-a-limited-time series on Lyme Less, Live More. It is a series of conversations between two people who have Lyme Disease and several different experts. I wasn’t thrilled with it. Mostly it seemed like a way to help people feel okay about having a chronic infection, but it had some good reminders about how useful detoxing is, how to find a diet that works for you, etc. Anyway, one of the detox experts claims that bacterial infections thrive in areas of inflammation. Basically, what he said was that if we kill part of the Lyme infection (or other chronic infection), our bodies become inflamed and the bacteria grows back more easily. The way to short circuit the process is to detox which reduces the amount of inflammation.

I thought about this a lot. I’m not sure there is evidence for his position. Inflammation is one of the human body’s mechanisms for targeting an infected area to kill bacteria and other microbial invaders. The problem with a chronic disease is that our inflammatory response gets stuck in the “on” position, and we experience the chronic inflammation as symptoms. Chronic inflammation also wears out our immune system. Detoxing does help reduce symptoms and get rid of the toxins that trigger further inflammation. Sometimes it also helps reset our immune system response in a good way, allowing our bodies to respond to the infection and not its toxic byproducts.

So while I don’t agree with the explanation of why we don’t get better if we don’t do enough detoxing, I still think detoxing helps us see improvements much faster.

Holding Pattern

Even though I wasn’t feeling well with the cough, I still had other things going on. I took a writing class that started before my trip. Most of my computer time for several weeks was related to the class or a photo book I was making for my mother’s birthday. It was a difficult month and a half because I couldn’t get better. Each day was one foot in front of the other, do the next thing that needs to be done (especially when there was a deadline), do as much as I can, then crash for the day.

The cough was accompanied by fatigue after only moderate activity, fatigue that didn’t clear up with Babesia coiling. That meant that if I had computer work, I wasn’t cooking. Or if I had housework or errands, no cooking, no computer work. I have been somewhat unhappy. I remember how long the days seemed earlier this year. I had energy to get out of bed after 9 hours sleep, then energy to prepare food 2-3 times a day, go for a walk, do some writing, knit in the evenings while watching tv. So I’ve been disappointed that I am stuck feeling ill, moving slowly, crashing after any activity or after an almost-good day.

On a good day, we went to a state park to look at sea otters, then sit on the beach and relax for an hour.

On a good day, we went to a state park to look at sea otters, sit on the beach, and relax for an hour.

I could tell things were off because I couldn’t decide what I wanted to knit next. I have a nice long list of things I’d like to make for myself and several other people, but nothing struck my fancy. I was making myself nuts.

In the midst of this nonsense, I started to panic about whether I’ll ever get well enough to be a parent. I don’t think I could handle caring for a child while having 4, then 5, then 6, then 7 weeks of being debilitatingly tired 5 days out of 7. Adding that emotional stress to the mix was less than helpful.

When everything else feels wrong. I knit something pretty. This time, I made a hat for myself. I did it without a pattern, and ran out of yarn, so it is my "acceptance of how things are in life" hat.

When everything else feels wrong. I knit something pretty. This time, I made a hat for myself. I did it without a pattern and ran out of yarn before where I thought I should finish, so it is my “acceptance of how things are in life” hat.

The good thing to come out of my baby panic was that I revamped my Bartonella coiling protocol. I felt like I wasn’t making much progress. I started to wonder if I would ever reach the end. Then I remembered that sometime this past year, I changed around the Bartonella coiling protocol to one that was more symmetric, 5 minutes on each of the parts of my central nervous system and my shoulders. I thought I should, maybe, get back to focusing on the places that pack the biggest punch: my sacrum and the back of my head. So I remade the coiling protocol, and that’s what I’ve been using for over a month. I was hoping that this change might get me through the chest cold and the low energy. It didn’t work, but I had some herxing when I started it. And my nervous system is finally starting to be less symptomatic.

Bartonella Coiling Protocol

832Hz

(done 1 to 3 times per day, depending on what other coiling is scheduled)

  • Head: each side, top – 3 minutes per location
  • Back of head – 6 minutes
  • Upper spine (plus side of coil on back of head) – 6 minutes
  • Middle spine – 5 minutes
  • Sacrum – 10 minutes
  • Each shoulder knob – 5 minutes per

I tried a few other things during this time, including acupuncture and Chinese herbs. They helped a little, but didn’t really give me leverage on the cough and fatigue. At best, they did two things: gave me a few days of feeling better and showed me that I may have another infection lurking. One course of herbs gave me a serious herx reaction. For a while, I started thinking of coiling as an 80% solution, one that would get me to a certain point, killing off the infections, then I would need to do something else altogether to heal my body.

I’ve come back around as the Chinese herbs haven’t cleared up the cough for more than a few days at a time. Now I’m going back to a question I’ve faced before: is there another infection?

Looking for a Breakthrough

I’ve finally come to the conclusion that I may have additional, previously unidentified chronic infections. These may be pathogenic infections (like the tick-borne infections) or opportunistic infections (like the candida infection I had after three years of antibiotics). I’ve been piecing together clues as to whether there is at least one more infection:

  1. When I have physical stress, like travel, I come home with a chest cold every time, which takes weeks or months to resolve, and is accompanied by severe fatigue.
  2. Treating the other three known infections does not resolve the chest cold symptoms.
  3. When I started coiling, a person who was near the end of his process told me that new symptoms appear when a person gets rid of (or nearly rid of) the symptomatic infections. The new symptoms are from infections that are no longer suppressed by the more aggressive infections (like Lyme, Babesia, and Bartonella).

Having established that there is a possible, third, “sleeper” infection, I called around to see what the most likely species could be. I narrowed it down to Mycoplasma fermentans. Once someone mentioned it, I got out my “Coiling 101” notes from that initial conversation and Mycoplasma fermentans was the next infection to look out for as the Bartonella starts to resolve.

To further bolster my hypothesis, I found a few things online about Mycoplasma. The one worth reading is on LymeDiseaseResource.com. When I delved further into information about Mycoplasma, I discovered it has the usual multi-system symptomology: respiratory inflammation, neurological problems, digestive problems, joint pain and severe fatigue. Mycoplasma lives inside the cells of the host (i.e., it lives in our nervous tissue or digestive tract tissue or red blood cells). The only thing I found hard to believe is that Mycoplasma is easily cured.

When I looked at the symptom list, it kind of matched what I’ve been going through. Respiratory inflammation: check. Severe fatigue: check. Digestive problems: check. Even a resurgence of joint pain (including ribs) not resolved by Lyme coiling: check.

However, as I suggest to everyone, we have to be skeptical about what we find on the internet. So I decided to try out the frequency I’ve been given as the best one for Mycoplasma, 690Hz. I’ve tried this frequency before. I didn’t see much of a difference. However, one thing I’ve learned by coiling for Babesia last autumn is that now that I’m not totally toxic and overloaded, it may take several days of serious coiling for me to notice any change.

I coiled for Mycoplasma last night, 5 minutes on each of my chest, abdomen and liver (respiratory, digestive, blood stream). My cough was worse before I went to bed, but it was gone when I woke up. Or rather, it didn’t start up again until I was out of bed for an hour. (By contrast, the previous 2 mornings, I was coughing as soon as I sat up.)

I’m trying it again today, following a similar pattern to what I usually do for Babesia. I’ve got my fingers crossed that I’ll finally get over this hump. After almost 8 weeks, I’m eager for a breakthrough.

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