Archive for the ‘using the coil machine’ Category

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Transition Zone

Thursday, October 13, 2016

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

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

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

Doctor Search

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

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

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

Restarting with an LLMD

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

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

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

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

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

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

Disclaimer

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Lyme Ideology

Saturday, January 30, 2016

I am in a moment of transition. I promised myself that I would only use the coil machine for five years. It wasn’t a random number. Someone told me that I’d be “better,” as in “free of tick-borne infections” if I coiled for five years. The end of the fifth year is right around the corner.

Five years also seemed like a long time (though I’d been out of work for 4 years and on antibiotics for three of them) when I started out. I thought that I might never get well enough to to be free of daily pain with relentless fatigue, digestive problems and sleep difficulties. Five years was a reasonable number, shorter than forever, as long as things improved along the way.

At the beginning of coiling, I was only committed to three months. If I didn’t see any difference in that time, I was going to sell the machine. Three months came and went, and I was seeing big changes (though not exactly big improvements).

After a year I had my first Babesia remission. I felt like a new woman: still sick and disabled, but no longer an afgan permanently draped on the couch. Next I got the candida out of the places where it shouldn’t grow. That helped reduce other symptoms. Eventually, I had short Lyme remissions. Those were great. Otherwise, I’ve been able to keep the symptoms mostly minimal by coiling 1-2 times a week for Lyme. The symptoms of Bartonella have lessened. The herxes from Bartonella are less intense. But the Bartonella herxes kick up Lyme symptoms, so I’ve been stuck in a slow improvement cycle with no end in sight.

Five years is almost up. I keep coming up with reasons to coil only twice a day, when I know perfectly well that to get to the end of Bartonella I need to do three sessions a day. I feel like it’s the last semester of high school or college. I can’t believe I still have a few more finals and papers to write. I just want to be done already.

I also recognize that Bartonella herxes convince me, time and again, to do something else, to get distracted on another treatment, to coil less. So I’m trying to give myself a new narrative: a long race in which I need to sprint at the end. Coiling three times a day for one more month might make all the difference in the world, or at least, it won’t be worse than it was in previous months and years.

Five years also has a different significance. I knew that if I ever got to the point that tick-borne diseases no longer monopolized my life, I wanted to find a partner and have a child. I fell in love with Joe, who is a most fabulous partner and husband. I can’t imagine my life any other way. And now that I’m 41, there are non-Lyme biological factors pressing against my desire for a child. So I’m going to coil for one more month and move on.

Auto-Immune Mental Gymnastics

Occam’s Razor states that among competing hypotheses, the one with the fewest assumptions should be selected. This idea came to mind when I went to see a naturopath that I’d previously worked with to talk about what I can do to ensure that if I get pregnant, the child will be healthy, specifically that I won’t transfer the tick-borne infections. I also had questions about what to do to keep myself healthy during and after pregnancy, including about the osteopenia/osteoporosis I have in different bones of my body.

While we had a productive conversation about supplements (he recommended OsteoPrime and gave me some other suggestions of varying usefulness), he said he didn’t think I have Lyme anymore because I’ve done so much treatment. He went on to explain that after years of Lyme treatment for himself and his patients, he has come to the conclusion that Chronic Lyme Disease is an autoimmune disorder. (He said he knew his idea “isn’t popular with the ILADS crowd.”) His main reason for this conclusion is that he’s had success in reducing symptoms with low dose immunotherapy, or LDI, as pioneered by Ty Vincent, a physician in Alaska. I pressed him on it. I wanted to know if this was merely a way to shut down an appropriate response to a persistent infection. He claimed first that the infection was no longer there, that the immune system was attacking itself like it does with rheumatic fever (where one particular strain of strep infection causes the body to make an antigen that cross-reacts with heart valves). Then he said that if the infection was present (which it might be because he can’t prove either way with current tests) that at least the symptoms will go away because the symptoms come from the immune system’s response to the infection, not from the infection itself.

My first question was: if the infection is gone and LDI “resets” the immune system, why do you have to “reset” it again every 2 months? (No good answer, but the treatment seems to work for only 7 to 8 weeks at a time.)

Then I told him that my experience with the coil machine, which does not suppress the infections, is that they remain active, that I’ve been able to reduce the level of symptoms and herxes, yet there are still flares, either seasonally or with certain food triggers. I thought it was a bad idea, if there is even a possibility that I still have the infections, that I would do anything to weaken my immune system or prevent it from fighting them off. He reiterated that he thought all the people with CLD don’t have infections anymore. No evidence, just his “belief.”

He asked me how I thought the microbes could possibly survive in the body for so long. I mentioned the immune protected places (which he listed as CSF, joints and eyes) where dormant forms or intracellular forms can survive, unaffected by either the host immune system or antibiotics delivered by the blood stream. He then told me that I shouldn’t worry about infections in those places because they couldn’t affect a baby. I said that I thought flares happen when these microbes become active, and in that case, they may temporarily be in the blood stream, giving them access to infect a fetus. His response was two-fold: first, if antibiotics, which are smaller than bacteria, can’t get into these tissues, that the bacteria can’t get out. (I listened at this point because he no longer could hear what I was saying, but I thought, if they can get in, they can get out, usually by a process other than diffusion.) He said he was a microbiologist, so he knew better than me. (I checked his reasoning with an immunologist friend who couldn’t stop laughing at his faulty “logic.”)

His second rationale was that there is “no proof of mother to child transmission of Lyme.” I just stopped talking at that point. Then he went on to explain that blood tests will give false positives while the mother’s antibodies are circulating in the blood stream and false negatives after because the child was supposedly exposed to the bacteria before birth. Besides that, antibiotics will permanently damage the microbiome of the infant. Then, he further explained that it is really obvious when a child is born with Lyme because they have almost immediate neurological problems. (You can see how I stopped trusting him as he contradicted himself.)

When I was in high school, I was on the debate team. There are four necessary elements to a debate: a question (or resolution), an affirmative side, a negative (or opposing) side, and a judge. We had the question. We had opposing arguments. But there was no judge. I knew that I wasn’t being heard because his mind was made up. So I had to stop, not even responding when he said: “You know, people with Lyme just get so scared so they’ll believe anything.”

Needless to say, I won’t be going back.

But I haven’t been able to let this go, six days later. I reflected on the conversation and noticed that as I accused him of being ideological, from his perspective, I was being ideological. We were both speaking from personal experience. We were both having some success with treatments that accomplish opposite ends.

I looked up LDI, as I had done when I heard about it over the summer and again before seeing the naturopath. As best I can tell, people herx when they take it. Then their symptoms go away for a while. Maybe the enzyme additive has a bactericidal property as well as an immune suppressing property. I can’t be sure. I can say that anything gets better but keeps coming back and causing symptoms is a foreign agent and probably not purely the body attacking itself. (I think this is true of rheumatoid arthritis and multiple sclerosis, rather than seeing those diseases as proof that CLD is autoimmune.) But I recognize that mine is an opinion and that others look at the same patterns and come to an opposite conclusion.

All this pondering and self-questioning about my conclusions bring me back to Occam’s Razor: among competing hypotheses, the one with the fewest assumptions should be selected.

My hypothesis is that persistent Lyme and tick-borne infection symptoms are caused by persistent infections. The assumptions:

  1. There has been an acute infection that generated symptoms.
  2. Some of the microbes are not killed by antibiotics.
  3. Surviving microbes live on in tissue that is not affected by the immune system or antibiotics.

The autoimmune hypothesis states that persistent Lyme and tick-borne infection symptoms are caused by an autoimmune dysfunction. The assumptions:

  1. There has been an acute infection that generated symptoms.
  2. Antibiotics can penetrate all tissue that the microbes are known to infect.
  3. All microbes have been killed by antibiotics. (Or any remaining microbes cease to cause symptoms.)
  4. The microbes cause the body to generate antigens that cross react with host tissue (though this has never been shown in a lab).
  5. The body never ceases to produce these autoimmune antigens (or other autoimmune agents).

Just based on numbers, my hypothesis has fewer assumptions. The assumptions themselves also seem less suspect, given that in autopsies, bacteria from Lyme and other tick-borne infections have been cultured from the tissue of symptomatic patients who have been extensively treated with antibiotics.

So my working hypothesis may be ideological, but it is also logical. And from the perspective of someone who could transmit the disease (if might still be in the body) to a fetus, it is the more conservative hypothesis.

Snowshoeing

As I wrote almost 2 weeks ago, I’ve started physical therapy for the litany of problems and persistent pain in my left foot. After the third session, during which the therapist massaged up a tight section of my left calf, my ankle was released. The pain was reduced by an order of magnitude. I could walk a lot better.

Two days later, to celebrate my birthday, Joe and I took a friend up to Badger Pass in Yosemite to enjoy the snow. While they spent the day skiing, I spent an hour and a half snowshoeing. (Or 45 minutes snowshoeing and 45 minutes listening to a ranger talk about what we were looking at.) And the rest of the day in a tired, happy stupor.

Walking in a path behind 10 people makes snowshoeing a lot easier.

Walking in a path behind 10 people makes snowshoeing a lot easier.

It was exhilarating and exhausting. I did my prescribed stretches that night. Then I got up and walked around the valley the next morning before the rain came. My friend and I found a flock of Clark’s Nutcrackers. Their black and grey were striking to see against the cloudy white sky and the snow that covered everything.

This bird was part of a flock that pecked at the ground under the trees where the snow was melted and hopped around from branch to branch.

This Clark’s Nutcracker was part of a flock that pecked at the ground under the trees where the snow was melted and hopped around from branch to branch.

I overdid it, and every step in the beauty and nature was worth it.

Symptoms, Flares, Coiling and other treatments

I came back and my foot is bothering me again. The physical therapist wasn’t able to recreate her miracle. But she made the pain calm down with an ultrasound treatment. I also went to an acupuncturist. She was able to get rid of a crazy neck-shoulder-upper back spasm on the left side that I had been treating (to partial relief) with a heating pad. The acupuncturist recommended Topricin for my foot. It hasn’t worked all that well on my foot, but I left in on my hands and my knuckles feel better. (As long as I reapply it twice a day.)

The January Lyme flare has begun. All my joints are popping. Eating wheat makes my ribs hurt. I’m tired in the afternoons. I had a few days of loose bowels when the flare began. I’ve had a few shock sensations go down my legs and uncontrollable twitches in them. And for a day I had acute nerve pain on the top side of my forearms, extending down into my middle and ring fingers. I feel Lyme-y but it isn’t that bad. I’m coiling every third day and letting myself stay symptomatic in between.

I’ve been coiling for Bartonella twice a day (once on Lyme days), and my kidneys barely ache. I’ve had some tingling in my arms and legs, but nothing that lasts very long.

The persistent problems are the bursitis and nerve pain in my left foot and the brainfog that comes without warning. I can’t believe that I didn’t realize I had it before. If anything, it is a testament to how much better my baseline brain function has become.

Since I can’t go for walks, I’ve been doing 10 minutes of yoga in the morning. I’m hoping that as my foot gets better, I can exercise again.

I’ve been playing around a little with essential oils in an attempt to calm my left foot. Nothing has worked well, yet. (Some things, like peppermint oil, made it worse.)

And I’ve decided to order the Alfons Ven Lyme package, despite my reservations, as something to try when I stop coiling.

Disclaimer

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Long Term Consequences

Wednesday, January 13, 2016

Last week, I donated blood to a research study. Despite all my frustrations with antibiotics and traditional medicine, I want to participate in finding a cure for chronic Lyme Disease and other tick-borne infections. The study is at Stanford University, part of a group that looks at chronic illness. I’m not sure what they expect to find, but I know that part of what I agreed to is to use my tissue in a tissue bank for future research in Lyme Disease, Chronic Fatigue Syndrome, and other related conditions.

If you live within driving distance of Stanford and have been diagnosed with Lyme Disease, I encourage you to participate in the study. It is the first in the list on their Current Research page.

There is another opportunity to participate in Lyme Disease research. It is a databank hosted by LymeDisease.org called My Lyme Data. I’ve signed up for this one as well. I encourage everyone who reads this to consider participating. My goals in participating are to help find better diagnostic tools and to help find a cure.

I’m choosing to participate in research for one more reason. These diseases have had profound long term consequences on my health, my body, and my life. I haven’t been working for almost 9 years. I continue to struggle with relapses, never mind the fact that I’ve never had a remission from Bartonella. And, as I learned again in December, my body has been marked by these chronic tick-borne infections.

Osteoporosis

Back in October, I developed a pain in my left heel. My reaction was to coil it, stretch it, and be kind to my feet for a few weeks. It almost seemed to be getting better, or at least not getting worse. I didn’t want to go to a doctor because many of my joint problems resolve with a few weeks of coiling.

Nothing really worked. Then I walked a little more than usual one day, and I could barely stand on my foot by the time I got home. I finally went to an orthopedist shortly before I left to visit my family in Virginia. I convinced myself to get checked out to make sure I knew what to do to prevent further damage while I was traveling.

The orthopedist started with an x-ray, which is understandable, since heel pain can be from spurs. This particular doctor sees a lot of people for sports injuries, and he’s good at diagnosing chronic problems. When he looked at my x-rays, he was shocked.

Doctor: Are you aware that you have severe osteoporosis? I’ve never seen it this bad in someone your age.

Me: Yes, I know. I couldn’t walk for a while because of the Lyme Disease.

Doctor: How long?

Me: Three years.

Doctor: Three years? Three years! That’s a long time.

Me: I know.

Doctor: You have to be very careful. If you land the wrong way on your heel, it will crack.

Me: (suddenly aware of how fragile my bones are) Wow. Thanks for the warning.

Doctor: (deep breath) Fortunately there’s good news. I’ve seen this before in studies, but never in my practice. (points to a portion of the x-ray) You have extensive remineralization. Whatever you’re doing keep doing it.

Me: I will.

Doctor: How did you build up your bones so much?

Me: I started walking again as much as possible, until a few months ago.

Doctor: What else?

Me: Vitamin D, Vitamin K2, Magnesium and Calcium.

Doctor: I read that Calcium is not the cure we once thought it was. Magnesium is good. Now let me show you the x-ray.

Left Foot X-Ray

My left foot with signs of osteoporosis and remineralization.

The x-ray above shows several things. First, my bones are very thin. The white parts should be much whiter for someone my age. The osteoporosis is throughout my ankle and heel, at the base of my tibia and fibula, and on the ends of the metatarsal bones. The remineralization is visible as the “spiderweb” or white crosshatching lines at the ends of my bones. The solid white lines are where the minerals (calcium, magnesium, etc.) are redepositing.

The doctor talked fast and wasn’t really ready to listen to my program for rebuilding my bones. It is a little more than walking and taking 4 pills, even though those are the basis of my progress. When I was really sick, I thought it was more worthwhile to take 20 minutes to walk a short distance (from my door to the car waiting for me outside) than to use a wheel chair and do it in three minutes. As I reduced the nervous system infection load and my overall toxicity level, I could do more, so I did. I walked whenever I could. I did yoga whenever I could. I stood whenever I could. It clearly wasn’t enough, given how thin my bones still are, but I did everything I could manage to use my body.

I read a lot about feet and walking and running (I still dream of running, having been able to do it so few times) and decided that as I began to walk again, I wanted to use barefoot style shoes. The main reason for this choice is to build the muscles in my feet. I read that walking barefoot (which I do in the house) rather than in shoes, engages the foot muscles and builds them faster and stronger than walking in shoes. It also helps adjust the rest of the body to its optimum posture, engaging the leg muscles in a different way.

More than that, it has been an attitude. I need rest. Whenever I need to rest, I do. But whenever I can be active, I’m active…even when active means standing in the kitchen washing dishes. Anything that keeps me upright and weightbearing is good by me. And whenever I can, I push things a little. I’d rather find my limit and hover just inside it than stay comfortable, allowing the healing process to stall.

There are many symptoms and problems that many doctors will say are permanent damage. I remember a neurologist who intentionally scared me to get me to try neurontin for the nerve pain I was experiencing in the months leading to a Lyme Disease diagnosis. He talked about nerve damage and chronic nerve pain.  I believe, based on my experiences with antibiotic treatment and using the coil machine that the nerve pain and damage that the neurologist claimed would become permanent is a sign of continuing infection. As the infection and related toxins clear, the neuropathy goes away.

Nobody back then talked to me about osteoporosis (though a year later my acupuncturist was the first to mention it). That has been the actual long term consequence of being unable to move because of nerve dysfunction (i.e., being unable to control my legs to walk) from the infections. This is the problem I’ll still be cleaning up, even after I put the infections into remission or get rid of them altogether.

Problems Walking

Osteoporosis is only one of the many problems that I discovered when I went to see the orthopedist. The other five are:

  • Bursitis in my heel, likely from Lyme Disease or Bartonella
  • Nerve inflammation on the medial side of my ankle and foot, likely from Lyme Disease or Bartonella
  • Plantar fasciitis, mild but likely from not walking much then going on a trip where walking was required (the funeral in October)
  • Deconditioning of the ankle, or loss of muscle strength from lack of use, from not walking on it because of pain
  • Thinning of the fat pad in the heel.

I’ve been feeling urgent about fixing these problems, except for the last one, which can’t be fixed. For the bursitis and nerve inflammation, I continue to coil. I’ve been putting anti-inflammatory essential oils on my foot at night. I’ve been taking ibuprofen in the morning for the bursitis. Nothing yet has really helped.

I’ve had bursitis twice before, once in my shoulder and once in my wrist. Both times it was before I got diagnosed with tick-borne infections. For my shoulder, I had a steroid injection. I’m not likely to repeat that, now that I know steroids allow the infections to get stronger. For my wrist, I did physical therapy to improve the musculature in my arm and hand and protect the joint better. In addition I took ibuprofen and it cleared up after about a month. I hope this works the same way.

For the plantar fasciitis and deconditioning, I started doing physical therapy. It’s painful, but it helps a little. I’m being fastidious about doing the home exercises between sessions, trying my best to rebuild my feet. I stopped wearing padded shoes, which I’d been doing until I saw the orthopedist, to try to give my heel a rest. Now I’m back to the barefoot shoes, since the plantar fasciitis is so mild, and it helps me avoid putting pressure on my heel when I walk. When I wore cushioned sneakers, I walked with an obvious pronounced heel-strike.

I have a certain amount of urgency about walking again. I feel better, physically, psychologically, emotionally, when I can go for a 30 minute walk every day or two. Now, I’m stuck with shorter walks, maybe 10 minutes at a time, and then I’m in a lot of pain. So I’m trying to solve this problem and get back to walking (and bone building) and making progress against the tick-borne illnesses.

Coiling Update

When I got back from the Christmas trip to Virginia, I focused my daily coiling on Lyme Disease because I had a lot of arthritis. The herxes were making me sleepy all the time. I was starting to think I had a Babesia flare. I think I’ve got it enough under control that I can coil for Lyme every three or four days, while working on Bartonella in between. After a day of not coiling for Lyme, I was able to confirm the sleepiness was from the Lyme herx because it went away when I didn’t coil.

I’ve changed my Bartonella coiling routine (again) to focus on my central and radial nerves and maximize coiling time. It’s taken me until yesterday to coil for Bartonella twice a day. I felt resistant as the Bartonella herx (headaches, kidney pain, urinary hesitation, constipation, peripheral nerve pain and tingling in my arms) crept up rapidly. But I know that unless I do it twice a day, fatigue starts putting me in a holding pattern. I’ve added a few minutes of both Bartonella and Lyme coiling to my feet to see if I can finally get the bursitis and nerve inflammation to resolve.

Bartonella Coiling Protocol

832Hz (48 minutes total, twice per day)

  • Back of head – 8 minutes
  • Each shoulder knob – 8 minutes
  • Spine: upper, middle, lower – 8 minutes each

Since I can only coil for 16 minutes with each coil before it gets too hot, I have to use three coils to do this protocol.

To keep up with all this, I’m taking my usual detox herbs (milk thistle and chanca piedra) as well as NAC (n-Acetyl cysteine), an antioxidant that helps with Bartonella herxes and with inflammation (bursitis and nerve). Most nights I’m also drinking tea that contains dandelion root. And I’m drinking kombucha some days. As the herxes get more intense, I’ll get more consistent about drinking the teas. (For completeness of the record, I’m also taking the 4 supplements for bone building.)

My goal continues to be to get rid of Bartonella as soon as possible. I remind myself of this every day. This is the key, hopefully to reaching the end, but if not, then to whatever remains.

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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