Posts Tagged ‘babesia’


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.



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


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


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


  • 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.



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.


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.



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


(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 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.



Vacation Notes

Wednesday, July 29, 2015

Over the last two weeks, I’ve gone camping in Yosemite and had a friend visiting my home. It’s been busy, busy, busy. Later this week, I head to NYC then onto Virginia, rounding out a month of activity. I’m mostly holding up okay. I haven’t tried to do activities for this long without taking a serious rest break, at least not in the past eight years. I can tell I’m tired and running on my reserves. I’m hoping that I’ll somehow make it through.


When I last blogged, I had just realized that my fatigue was a Babesia flare. Unfortunately, I didn’t have three open weeks to coil three times a day with two different frequencies. I did something else instead. I coiled three times a day at 753Hz for a few days. Then I coiled the whole body protocol (requiring the use of three coils) once a day, while also coiling for Bartonella once a day. I mixed it up and did part of the Babesia protocol in the morning and part in the evening, splitting the Bartonella protocol in half as well.

I can’t say I’m for sure in remission. The symptoms disappeared. The fatigue hasn’t come back yet. On the hiking trip, my energy was pretty good. We did low-key activities for the first four days and went on hikes the last two days. I was able to keep up with the other folks on the trip. The hiking wore me out, but it did that to everyone. I had night sweats, but so did my companions because it was cold when we went to sleep in super warm sleeping bags, then warmed up overnight. So I’m not counting those night sweats as caused by Babesia.

After the camping trip, I coiled for Babesia two days, then missed four days, then I’ll get to do it two more times before I leave for the trip east. I’ve had no herx at all, no headaches, no night sweats. I believe this will be enough as long as I don’t overdo my activities or provoke the infection with too much sugar.


Getting enough restful sleep has been the biggest issue I’ve been facing. I wake up often at night. I sleep lightly. In order to stop this pattern, I need to have big naps for a few days in a row, and I need to coil for Bartonella aggressively for at least a week. Since that can’t happen, I’m doing my best to rest in bed and sleep as much as I can.

I got into this mess when we were camping. I hate getting up to pee in the middle of the night when I’m camping. I have to find my headlamp, get dressed, leave the tent, walk across the campground, use the pit toilet, walk back (and stare at the millions of beautiful stars), find the hand sanitizer, get back in the tent, get undressed, and get back in my sleeping bag. By the time I’ve done all this, I’m wide awake and a little cold. Yet for the first three nights of camping, this is exactly what I did. It took me at least an hour to fall asleep again each night.

My best shot at sleeping through the night was to stop drinking three hours before bed, stay up till 10:30, and go to the pit toilet right before I went to sleep. It helped if I lay down for awhile, maybe at 10, to trick my kidneys into thinking it was time to go crazy, which is what they usually do when I go to bed for the night. It worked. I was able to hold it until 5:45am. I woke up during the night, but I was able to put off getting up. The only problem with this scenario is that I couldn’t go back to sleep at 6am. However, it was fun to watch the early birds eating worms and other insects in the grass. I got to watch the sun come up over the mountains and the shadow of the mountains recede.

The biggest problem was that my body went into overdrive. I couldn’t nap. I couldn’t settle down and be still, not even sitting. I felt like I needed something to do at all times because my mind was so restless. I reached a point of tired overdrive where I kept apologizing for everything (to the point that my companions were confused about what I was apologizing for). My brain had short-circuited.

I managed to rest some when I got home. It wasn’t quite enough before another friend came to visit. We had lots of activities planned, all starting early in the morning. I feel the sleep deficit. I’m not sure if I can do anything about it.


Sugar activates Lyme. There’s no way around it. Eating two bags of M&Ms is one way to get lots of sugar. That’s what I did on the drive back from Yosemite. The next morning I woke up with knee pain. It was excruciating. I got really worried. That day I did a full-body Lyme coiling session. Overnight, with 11 hours sleep, the pain was gone.

I had some knee pain yesterday morning (over a week later) the day after a Lyme coiling session. I don’t know if it is a herx or if it is the kind of knee pain I get with Bartonella. I coiled for Bartonella yesterday. This morning, the pain was gone.

Fun Stuff

Camping in Yosemite is fantastic. We actually stayed at Tioga Lake, near the park, and did day trips from there. I have a new camera from this past Christmas. I had a fabulous time taking photos of birds and flowers and scenery. The photos are posted here.

Setting up the tent at Tioga Lake with Joe.

Setting up the tent at Tioga Lake with Joe.

On the Friday of the trip, we hiked up to May Lake. I was tired from a shorter hike on flat land earlier in the day. I took my time, took pictures, and slowly made my way up the mountain. At the top, May Lake was beautiful. I was hot. The lake looked so tempting. As happened last year, I had no bathing suit with me. This time, my husband and I walked to the far side of the lake, away from where we were visible. He was hiking in his bathing suit. But I decided to go skinny dipping. It was a short refreshing dip in the freezing cold lake, followed by a few minutes drying off in the sun on some rocks. Fabulous. For quite a while afterwards, I couldn’t believe that I became that girl, the one who goes skinny dipping in broad daylight. It was fun to see myself that way, instead of the images of a woman struggling with her health that I’ve had for the past eight years.

I took lots of photos, including some at Bodie, the abandoned mining town.

I took lots of photos, including some at Bodie, the abandoned mining town.

The other excitement when I came back was the Gilroy Garlic Festival. I wouldn’t even consider it when I moved to California. Now, after lots of coiling, and more coiling as I reintroduced various foods that used to trigger massive inflammation, I can eat garlic. That’s exactly what I did. Lots of it.

At the Gilroy Garlic Festival with Mr. Garlic

At the Gilroy Garlic Festival with Mr. Garlic

After I was garlic saturated, my friend and I went to the arena where several celebrity and professional chefs were doing demonstrations. We watched a few chefs. In between each chef, while the stage was cleaned and prepped for the next one, an MC brought people up from the audience to show off their “talents” and win garlic and other food gifts. I sat through the jugglers, the Elmo impersonator, the teenager who did a split, the thumb-wrestler and a few others. Then I got it in my head to get on stage. I offered to recite a poem about a duck. This let the MC make a lot of comments about what rhymes with duck and what could be said at a family-friendly event. I recited Ogden Nash’s The Duck. It was silly. I got some applause and some pickled garlic. Mostly, though, I was that girl, the one who does embarrassing things and can laugh at herself. I feel like I’m starting to re-enter the world.

Looking Ahead

In just over two weeks, I’ll return to California. I’m looking forward to coiling and making major progress. I really, really, really want to be well. It’s so close I can almost taste it (if I could get the taste of garlic out of my mouth…).



Stealth Symptoms

Sunday, July 12, 2015

As soon as I finished writing last week’s blog post, I knew I had to coil for Babesia. It’s funny how writing about my experience, as this blog is literally my journal of coiling, clarifies my thinking about what to do next. (This is why I tell everyone who asks me for advice that the most important thing is to keep records of whatever treatments they decide to use.)

This is not the first time I’ve resisted coiling for Babesia. I think that my early experience with Babesia and coiling was that once I got the infection into remission, it stayed in remission for eight months. The second time, it stayed in remission for 11 months. As a result, I’m reluctant to admit that it might flare up after recently treating it.

There is a big difference between the more recent, more frequent flares and the long periods of remission. I stayed in remission previously by keeping to a very strict diet, taking supplements, not pushing my body with exercise, and getting tons of rest, while I attempted to get the other infections under control. That was fine for where I was in my healing process. Now, as I get stronger, I intentionally push boundaries and trigger symptom flares from the Bartonella and Lyme infections, allowing me to dig deeper into their reserves and more fully rid myself of the infections.

Yet I maintain a blind spot for Babesia. To my thinking over the past year, Babesia, which requires a lot of daily coiling to get rid of the active infection, is a distraction from the coiling I need to do to get the Bartonella infection into its first remission. Thus, I procrastinate and postpone. I try to convince myself that the fatigue and brain fog is anything else, preferably Bartonella, and definitely not Babesia.

I’ve observed, time and again, that my weak link is eating eggs. That invariable triggers all three illnesses, yet each time, Babesia is slower to emerge and the symptoms are weakening. Thus, each time I trigger the infections with eggs, I try again to pretend that Babesia wasn’t triggered. And again, I discover that it was.

So, for the past six days, I’ve been treating Babesia, again.

Stealth Symptoms

I used to have a simple list of symptoms that were my clue that I was having a Babesia flare:

  • light sensitivity which provoked
  • daily blinding headaches in my eyes and forehead and migraines,
  • a drop in blood pressure which led to
  • cardiac symptoms, including palpitations, a strange sensation in my neck and mild chest pain
  • as well as feeling out of breath
  • and sometimes nausea from the low blood pressure.

The big clue was

  • massive night sweats from which I woke up drenched and cold.

Even without these symptoms, I always do a coiling test-run for Babesia if I find myself

  • tired enough to spend three days on the couch or in bed.

So to summarize: light sensitivity, headaches, cardiac symptoms, big night sweats, and bed-bound fatigue. The symptoms usually came together over the course of a week. I might resist coiling for a few days beyond that week, but I would come around and start to feel better after a day or two of coiling.

The symptoms have changed. I attribute this to either a lower load of Babesia microbes in my body, or a stronger body from having reduced the loads of Lyme and Bartonella bacteria. Or both. No matter what the reason, the symptoms are harder to recognize. Gone are the extreme headaches, light sensitivity, blood pressure changes, and cardiac symptoms. Instead, I’m left with fatigue that comes and goes, and light night sweats that are just like Bartonella night sweats. So how do I know when to coil for Babesia?

The clue this time was that I couldn’t stop thinking about how tired I felt. I could get up and do things, but all I could think about was how tired I felt. Constantly.

In the shower: “Wow, I feel tired. I wonder if I have time for a nap.”

While driving: “Boy, am I tired. How soon can I go home and rest?”

While coiling: “A series of 5 minute naps in between changing the position of the coil sounds like a great idea!”

While talking on the phone: “This conversation would be a lot more interesting if I were lying on the couch.”

While eating: “I’d better not eat too much. It’s hard to take a nap on a full stomach.”

While blogging: “Why did I write down so many notes? I want to be done already so I can rest.”

You get the point. I was too tired to go for walks or do yoga. I was getting noticeably sedentary, even for me. This was a big change from the progress I’d been making as I coiled the Bartonella infection, even after the sugar binge and egg trigger. I knew something was up.

When I talked to a fellow user of a coil machine, he offered me some other possible frequencies. When I thought about them, I knew that I should try coiling for Babesia before I start chasing other phantom infections. But it took writing about the fatigue last Monday to put the thought into action.

Overnight Breakthrough

Last Monday night, I coiled my entire body for Babesia using 753Hz. I’ve finally come around to that frequency because I feel better with less herxing. In fact, there was no herx that night, but the next morning, I went for several hours without thinking about how tired I was.

Since it was a test run, I spent Tuesday coiling for Bartonella, my main project. When the fatigue returned, it was already 6pm, even though my energy had waned a little starting several hours earlier. At that point, I knew that I needed to incorporate Babesia coiling back into the week’s schedule.

On Wednesday, I split the full body Babesia protocol into the usual three sessions, giving me several shots to clean up my blood supply. I coiled at both 570Hz and 753Hz.  I also split the CNS coiling protocol for Bartonella into three parts to allow me to finish it over the course of the day. After the first coiling session in the morning, I was downright energetic. After the second one, I had a typical, extreme, Babesia headache. It started in the front and triggered its own migraine. I decided some caffeine was in order, trying to prevent this headache from stretching on for days. An hour later the headache was gone. After the third coiling session in the evening, I had another one of these headaches. I went straight to bed and had a night sweat. But in the morning, I felt like I was back to normal.

On Thursday, I did the same routine: three sessions, both Babesia frequencies plus Bartonella. This time, no headache. Yay! Mild night sweat. No more fatigue thoughts or fatigue, until I wore myself out with too much activity.

The only problem on Thursday was that I woke up achy all over. So Friday, I switched up the coiling and just focused on Lyme. Now the aches and pains have died down.

Meanwhile, I’m having only very mild Bartonella herx symptoms: mild kidney pain, knee pain, neuropathy in my arms and hands when I wake up in the morning.

Summer Activities

On Friday night, my first summer visitor arrived. We’re going camping tomorrow for a week. Then when she leaves, another guest arrives for a local festival. After that, I head to NYC to help my parents move to my sister’s neighborhood. It will be more than a month before I’m back home and resuming my full coiling program.

Yesterday (Saturday) and today, I’m coiling for Bartonella in the morning, spending the day with my friend, and coiling for Babesia (753Hz) in the evening. With any luck, this flare was so mild that I won’t have repercussions while I’m camping.

In some ways, it’s surprising that I’ve gotten this well that I can do so many things in a row. And in other ways, it’s frustrating that I haven’t gotten to the end of any of the infections. This is my life, with its limitations and its adventures. I’m glad to be living it.

Endnote: On Punctuation

As I reread this post, I discovered a lot of colons, many more than I usually employ. I attribute this phenomenon to reading Gulp by Mary Roach while coiling. It’s a great book for learning odd and wonderful and terrible bits and pieces of information about the human digestive tract. It also spends a lot of time on intestines, including, of course, the colon. Thus, the colon is on my mind and has found a creative means of expression.



Sugar Binge Aftermath

Monday, June 29, 2015

I have to laugh at myself. I enjoyed the week of cake and sugar a little too much. The ten days since I started coiling again have been like going to the dentist as a ten-year-old and discovering a cavity.

Before I get into the details, I want to mention the idea of stressing the body. For much of the time I’ve been healing, as well as the first year when I was mostly searching for a diagnosis and hoping I wouldn’t die, my primary goal was to not stress my body too much. The infections had already stressed me to my breaking point. I diligently learned what foods to avoid. I added in a variety of medications and supplements. I went to a physical therapist for a while. I slept an incredible amount of time. I rested. I hydrated. I ate tons of protein. It was the only way I knew to survive.

One of the reasons I was interested in the coil machine was that I didn’t want to live that way forever. I wanted to get well enough to live normally, to do exercise, to be able to handle regular stresses again. I wanted to someday stop taking all the pills, fretting over my foods and going to bed early every single day. In many ways, I’ve done that. I’m not symptom free, for sure, but I’m not incapacitated as often or as profoundly. Now I look at the stressors, like a week-long sugar binge, as a way to test how active the infections still are. What can my body withstand before it succumbs to the infections all over again?

So, listed below is what I learned about the state each infection, how I learned it, and what I’ve been doing as far as coiling again to get the active infections back under control.

Out of Control Symptoms

First things first. Monday morning (6/15/15), the binge was over. By then, my body had gone crazy. Everything hurt. Muscle pain. Joint pain. Headaches. Chest pain. Abdominal pain. Neurological pain in my extremities. All day fatigue. Nausea. Irritability.

I felt like my body was out of control.

Lesson 1: Some infections are still active in my body.

On Monday, I coiled my central nervous system for Bartonella and for Lyme. On Tuesday, I coiled the rest of my body for Lyme as well as my whole body for Bartonella.

By Tuesday night, the joint pain had disappeared. So far, the Lyme coiling had gotten rid of the most obvious Lyme symptoms.

This left me with a whole host of symptoms. In addition to the ones mentioned above, I had bladder hesitation, kidney malfunction (no urine produced for a while, then when I lie down, my bladder fills rapidly over and over), reflux, gas, loose and urgent stools alternating with dry and reluctant ones, heart palpitations, tachycardia, migraines, and fatigue in the middle of the day for a few hours and again at around 7pm till bedtime. The only consolation was that most of this qualifies under the heading dysautonomia. All I need to do is reduce the infection’s actions on my autonomic nervous system and most of this should disappear.

Even though it wasn’t all dysautonomia, the rest of the symptoms were neurological in nature: tingling in my arms when I woke up on Tuesday, and foot pain in the mornings Monday-Thursday.

I continued to coil my entire body for Bartonella. Even though I think most of the infection is in and near my central nervous system, the goal of all the sugar was to get the bacteria into my blood. So I’ve been coiling my whole body every day to kill off the bacteria wherever they landed.

On Friday, I had a new problem in my left shoulder. All the muscles seized up and every movement in my shoulder was popping and cracking against my ribcage and clavicle. It was immensely painful. I went to an acupuncturist at a clinic on Saturday. The treatment didn’t seem to help much, but the suggestion to put heat on the affected area worked like a charm. My shoulder is still popping and cracking, but less often and without so much pain. I tend to have this problem to a smaller degree with Bartonella and a greater degree with Lyme.

It became more obvious on Sunday(6/21/15) through Tuesday that the Lyme is still active. Many of my joints started popping and aching again. My knees hurt a lot. Wednesday I coiled for Lyme and things started calming down within an hour of coiling. The only thing left still popping is (you guessed it) my left shoulder.

Lesson 2: One coiling session does not get rid of a Lyme flare.

More Lyme coiling to come.

I already knew that Bartonella coiling was going to take a while. Friday, I switched back to coiling only my central nervous system, and doing it three times a day. Since the sugar binge, I’d been doing it twice a day while I used the third session to coil the rest of my body.

Many of the Bartonella symptoms are still lingering, but have diminished in strength since I started coiling for it again. The worst one is the fatigue. That seems to get worse with coiling. It comes in waves: I have energy in the morning, but I feel like I can’t move by 4 in the afternoon and I need to rest until bedtime. The migraines stopped for a week once I started coiling, but today I got smacked with another one.

Even with the fatigue and migraines, I’ve managed to go for a bike ride, do some cooking, and do some morning yoga, not all on the same day. But I have been a little bit active each day before the fatigue sets in. Today, the fatigue is a little less, but I don’t necessarily expect it to stay that way.

Lesson 3: Bartonella is less debilitating than it used to be.

Something Missing

There’s one symptom that has me flummoxed. My eyes are itchy. I don’t know if it is a reaction to something in the environment or something internal (shifts in my immune system functioning). It keeps reminding me of a feeling I sometimes get in my eyes when I have a Babesia flare.

Babesia flare? Well, last year when I tried having eggs, I gave myself a flare. Then I tried to cheat by coiling less than necessary to get rid of it, so the flare dragged on and on. This year, no flare so far. It’s bizarre. I’ve been expecting it. I was almost hoping to have a symptomatic, obvious flare right away, which would have allowed me to do a PCR test for Babesia as well. No symptoms means there probably aren’t any (or at least not in sufficient number) microbes in my blood to make it worth testing for it.

On the other hand, it’s very exciting to have provoked flares of the other two infections and not heard a peep from Babesia. I’ve had little symptoms that are shared by Bartonella: night sweats and fatigue. But the night sweats woke me up hot, like Bartonella, not cold like Babesia. The fatigue has not been an all-day every-day fatigue. I’ve been up and around and somewhat active, even if I’m done for the day pretty early.

I’m not ruling out a Babesia flare. Last time it took a while for the symptoms to be severe enough for me to recognize them. So if, in the next few weeks, they crop up, I’ll be ready to start coiling for them.

Lesson 4: (As I learned in spring 2014) Babesia can have a delay between a trigger and a flare.

Non-Lyme Medical Care

It is often just about all I’ve had attention for to deal with the problems that come from tick-borne illnesses. For years, all my medical interactions were in some way related to these infections. Rarely, I remember that I should take care of other things, mostly preventive or screening, like a PAP smear or, in this case, a colonoscopy.

Colon cancer runs early and often on one side of my family. So I had a screening 10 years before the recommendation for the general population, but more importantly when I am 15 years younger than when someone in my family died of colon cancer. One of my parents started getting screened in their 40s and had pre-cancerous polyps. I think the only responsible thing to do, since I have so many other medical problems, is to head this one off at the pass.

Friday  (6/26/15) was the big day. I opted to have the procedure with out anesthesia, or as the anesthetist kept correcting me, deep sedation. The last two procedures I had that called for deep sedation had me out of commission for 3-4 days, with nausea, weakness, and a feeling like I was interacting with the world through thick plexiglass. Everything was muffled and I couldn’t quite connect my senses to my surroundings. I think this comes from whatever neurological problems the tick-borne infections have caused. Whatever the cause, I’d rather be very uncomfortable for 20 minutes than messed up for 4 days.

The doctor and his staff dealt with it well. Apparently about a patient a month (or maybe fewer) request to have the procedure done without anesthesia. They knew what to do. I was fine.

My intestines took a few days to recover. I ate probiotic foods and natural fiber to get things back on track. Today (Monday, 6/29/15) I’m closer to my version of normal.

Essential Oils

I’ve read several times about essential oils as a part of rebalancing and healing the body. I’m not sure how strong they are, though, knowing me, I react strongly to every treatment. Despite being unsure about whether they might give my immune system too much of a boost and thus prolonging the amount of months I have to coil, I decided to go for a consultation.

I ended up with a mix that is primarily black pepper oil with a few tiny quantities of other oils mixed in. Hypothetically, it should help heal my intestines and nervous system, which in turn, should make me not so tired. We’ll see what happens. So far, I couldn’t sleep all night after applying a small amount to my feet. And I’ve otherwise been tired. I don’t know what to make of it.

This might be a short lived experiment, if the oils just make things worse. Or, if they seems to do something positive, I might stop to see if I get a rebound of symptoms, in which case I’ll coil until the symptoms are gone before using the oils again.

I think my desire to try oils is born out of impatience. I want to feel WELL again. I’m definitely better than before, even with the rocky setbacks and rebounds, but I’m not WELL. I want to be WELL and I’m so tired of slogging through slow (if consistent) progress.

In the meantime, I’m coiling away on Bartonella. I’m hoping for a breakthrough sometime in the next few months.



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