Posts Tagged ‘menstruation’

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The Fifth Package: Renewed Challenges

Monday, August 1, 2016

Last Monday, I finished my fifth 28-day package of CHIM, part of the Alfons Ven remedies program I’m using. I had high hopes when I started the package because I fared reasonably well during the fourth package. Instead, I had a very difficult time. I felt like the CHIM was peeling back another layer of illness for me to grapple with. At times it was confusing, and I wondered if it made sense to keep taking the Ven remedies. At other times, I could see that unexpected things changed and not everything was worse.

As of last night (Sunday night), I started my sixth Ven package. This is going to be the last one for now as I have some other plans for the fall. My current feeling is that to get to the end of these tick-borne illnesses, I would need another year of the Ven remedies. Like so many other attempts to regain my health, this is not a quick fix. It is a way to tilt the long-running battle between my body and the infections in my favor. The movie The Imitation Game comes to mind. If I try to trick the infections, they find a way around my solution (e.g. antibiotics and antimicrobial herbal remedies leading to a store of dormant microbes waiting to reactivate). If I tilt the balance in my favor (e.g. coiling, Ven remedies), I will eventually win, but it may take a long time and involve many casualties on both sides.

The topics on my mind today are: a report of the symptoms over the course of the month, notes about weight gain and Bartonella, and a drastic change in my menstrual cycle.

CHIM Month 5

I started the fifth package of CHIM on June 28th. I took one dose each night for 28 consecutive nights, not waiting more than a day between doses. Each morning, I took 2 doses of FLUOX, one pill per dose, at least two hours apart from each other. I didn’t skip any days because most nights, by the time I was ready for the next CHIM dose, most of my major symptoms were minimal or temporarily gone.

This month was marked by daily kidney pain. Some days it was moderate, some days it was severe. Some days it lasted only 2 hours, some days it lasted upwards of 10 hours, but the trend across the month was increasing kidney pain. As a result of the kidney pain, I stopped taking daily Advil, which I had been doing for quite a while to deal with bursitis in my right heel (and higher doses when I was traveling for overall pain management). I thought the Advil was adding extra work for my liver and kidneys which were clearly overworked from Bartonella herxes. (In the past, when I coiled for Bartonella, that was coincident with kidney pain. More on that below.)

This month was also marked by fatigue, at a level that was much higher than the previous CHIM package. In the first week, I was able to work a little on the computer, go for a walk in the neighborhood, do some light housework, then crash for a nap in the afternoon, needing to rest during the evening. By Day 9, I got more tired. After that, I found it harder to concentrate or motivate myself. I fought with myself to continue personal projects with external deadlines, including the blog I posted on Day 15.  I made myself go outside whenever I had an ounce of energy. But frankly, I felt very stuck because battling the fatigue to try to live today feels just as bad as it did when I was disabled in other ways. In earlier years of this illness, the other disabilities gave me enough of an excuse that I could let myself rest. Eventually this month, I gave in to the fatigue and spent a lot of mornings and evening reading, while attempting to be active (computer work/light housework)  for 3-4 hours in the middle of the day with several 15 minute rest breaks.

There was a new symptom this month, one that I haven’t had since I got Lyme Disease. I had the feeling of electric shocks in my legs and arms, a feeling that would cause strong muscle contractions. These are called myoclonus (translation from Latin: muscle jerks). Most of the time, I could feel tension building in a spot on my thigh (or calf or upper arm or back or neck), then it would get really intense and cause a muscle convulsion (twitch doesn’t describe the severity of the action). The convulsions were painful. The first time was after I took my CHIM dose on Day 10. My legs twitched with increasing pain for 15-20 minutes. But then it stopped and I was able to sleep. This happened again on Days 15 and 22. Over the next few days, I noticed increased constipation and a series of muscle knots in my back and buttocks. Then I had 40 twitches in a row in the half hour after I took my CHIM dose on Day 25.

The next morning, I looked up twitching, found the name myoclonus, and researched possible causes for the symptom as well as treatments. Some causes include neurological diseases, seratonin imbalances, reactions to certain medications, exposure to neurotoxins, all of which relate to the neurological cause of contractions, and magnesium or other metabolic deficiencies, for the muscle half of the equation. There is a medical journal paper on the presence of myoclonus in a patient with Bartonella. That was a key clue for me. The treatments include many anti-convulsant drugs of the types used for epilepsy as well as psychiatric drugs that modulate seratonin. I wasn’t interested in these. But I was interested in magnesium since Bartonella often depletes my body’s magnesium, worsening constipation and causing muscle pain and stiffness, which I happened to notice at the same time.

The next night, when another long series of myoclonus kept me awake, I got up and took 250 mg of magnesium citrate and an Advil, since my muscles were in a lot of pain after all the convulsions. I fell asleep as soon as they kicked in. For the next several days, I took extra magnesium in the morning and that was enough to get rid of the muscle knots. However, I still needed nighttime magnesium to avoid twitches, even though they were milder and there were fewer of them after I finished the CHIM package.

On a side note, I have experienced similar convulsions in the past, whole body convulsions, when I stopped using Effexor, a SNRI anti-depressant, which was prescribed to me in my 20s. Those were at least as painful, but at the time, the internet did not contain the kind of information that would have helped me. And my psychiatrist’s solution was to increase the dose of Effexor, which I wanted to get off because I was no longer depressed by anything other than the side effects of the drug!

Beyond the three most prominent symptoms, I had the other usual symptoms of herxing:

  • Night sweats. I had no night sweats the first 4 nights. Days 5-9, I had night sweats, sometimes more than 1 per night. The next two nights, I woke up overheated but not wet. Then on Day 12, I had a supersoaker, followed by 3 more nights of sweats. Then 4 days of waking up overheated, followed by a light night sweat and 5 days of night heats without sweat. Day 26-28 and the first 3 days of taking a break from CHIM, I had more night sweats. The last two nights I had night heats. I see these as the battle against Babesia (4 days on, 4 days off), followed by a measure of overflow of Bartonella toxins that my kidneys couldn’t process. I can’t be sure, as both infections (and their herxes) cause night sweats, but this is my impression from past experience.
  • Insomnia. One of the good things is that insomnia is happening less frequently. Even when I get up to change into dry pajamas or cool off, I can usually go right back to sleep. I had insomnia on the following days: 1, 6, 7, 10, 16, and 21, when I couldn’t fall asleep then woke up over and over during the night.
  • Joint and muscle pain. Joint pain includes pain, stiffness, and popping in my spine, neck, ribs, and the joints in my arms and legs. It is a classic Lyme symptom, but also happens sometimes with Bartonella herxes. Muscle pain is usually in the shape of a knee high sock or an elbow length glove. It also includes several days of muscle spasms and knots in my back and buttocks. I had joint pain and muscle pain for the first 9 days of the treatment, then a short respite, which coincided with stopping the daily Advil. About 3 days later the pain returned and was worse through the end of the CHIM package.
  • Headaches. I had short (<3 hours), moderate headaches intermittently on approximately 10 days of the 28-day package.
  • Bronchial irritation. I had coughing fits and soreness in my airways for the first 4 days, then it disappeared.
  • Constipation and lower abdominal pain. This typical symptom of a Bartonella herx was a problem only during the second half of the package. Most days, I had close-enough-to-normal bowel movements, which was one of the things that made me notice that the CHIM was having a positive effect.

I had a new symptom part way through the package, but I’m not sure of the exact day. The soles of my feet started to peel. I’m not sure if this is a case of athletes foot or some other phenomenon, but it was notable. I’ve been using diluted essential oils to treat it (lavender at night, a citrus blend or lemongrass in the morning). It stopped spreading until I skipped a few morning doses then spread further along the balls and heels of my feet.

The biggest positive effect of the repeated packages of CHIM is that I had almost no PMS and mild cramping with the start of my menstrual cycle. I stopped taking DIM (which I’ve used for years to regulate my cycle) shortly after I got home from traveling (Day 3 of the package), and suffered no ill effects in not taking it. I was told that CHIM might rebalance my reproductive hormones, making DIM both ineffective and unnecessary. That has finally shown itself to be true.

After the CHIM package was finished, I took 5 days off. I took 2 doses of FLUOX for three days, then 3 doses of FLUOX for 2 days. The main issue was (and continues to be) kidney pain. I had some energy for the first three days, then I fell into pretty severe fatigue again. On days 4 and 5 of the break, I had tingling in my arms and legs as well as rib pain, and I knew it was time to start the next package.

During the last week of CHIM, I tried drinking juiced greens. They helped a little, but not as much as they have in the past. It seems that consuming large quantities of vegetables (such as cooked cabbage or raw salads and whole herbs) works better for me at this point. The fiber tends to absorb more of the toxins that make it into my digestive tract as well as providing chlorophyll to assist in cleansing my blood. In addition, I’ve been drinking kombucha and roasted dandelion root tea to supplement the morning doses of chanca piedra and milk thistle. Even with all of these, it doesn’t seem to be enough to support my detoxification pathways and get rid of the kidney pain.

Bartonella and Weight Gain

I have been treating Bartonella one way or another since 2010. Although I had previously used oral antibiotics that are meant to treat the infection, such as Levaquin, they didn’t have much of an effect. In autumn 2010, I used Rocephin for the first time. It gave me terrible kidney pain (and two kidney stones) but I didn’t know what the pain was from. I assumed it was from the drug.

Months later, I used 832Hz to coil for Bartonella. I didn’t experience kidney pain from treating Bartonella until the first time I coiled my spine. Then from 2011 until February 2016, I coiled for Bartonella on my central nervous system and in the areas where the nerves leave to become my peripheral nervous system. Coiling for Bartonella caused kidney pain proportional to how much I coiled the key areas. Over time, my symptoms shifted and many of the neurological symptoms diminished. Unfortunately, I never got to a point where coiling for Bartonella no longer gave me the particular herx symptom of kidney pain.

At the same time as the Bartonella herxes, I began to gain weight. During the most intense coiling with the most intense herx symptoms (which I’ve written about here), I started gaining weight at a rapid clip. From May 2013 to December 2013, I gained 25 pounds. At the time I attributed the weight gain to Vitex, a supplement I was using to deal with the irregularities of and problems with my menstrual cycle (including PCOS). I believe that Vitex contributed to the speed of the weight gain. However, I think that the Bartonella herxes played a role by poisoning my body faster than I could clear out the toxins.

In the intervening years, I’ve not been able to lose weight. I have several times dipped below 160 lbs, but never for long. This past year, as I have again been more focused in attacking Bartonella, my weight has reached past 175 lbs. The more my kidneys hurt, the faster I gain weight.

To give you a sense of how drastic this is, when I was at my low point, on antibiotics, allergic to lots of foods, and dealing with candida in addition to the tick-borne infections, I barely hit 120 lbs. I’ve gained a lot of weight as I’ve tried to get rid of the Bartonella infection.

To be clear, I’m no longer on a completely grain-free, sugar-free, fruit-free diet. However, despite occasional high carb meals (2-3 per month), I pack on weight very easily. I mostly eat vegetables, protein, fruit, and high quality fats (think avocados and olive oil). I also eat cheese and small quantities of grains 1-3 times per week. This is not a weight gaining diet.

I don’t know the mechanism for the weight gain. I’ve read things that give some possible clues. One theory is that the body creates fat tissue to store toxins that it can’t eliminate right away. Another theory is that the stress of the herxes after the years of chronic infections has damaged my HPA axis (Hypothalmus-Pituitary-Adrenal), causing my body to store fat and feel tire. Another theory is that my thyroid gland is no longer producing sufficient hormones (though when I tested it in 2014, the hormones were well within the normal range, not near the low end). Another theory is that the insulin resistance I developed in my late 20s, after I got infected, and which manifested as PCOS, is made worse by the Bartonella herxes. Or maybe some combination of all of the above and a few other problems that I don’t know about all contribute to my increased body mass.

I my 20s I gained lots of weight when I was on psychiatric drugs. I gained 55 lbs in 10 months. When I had weaned myself off all the drugs, I started spontaneously losing weight, like 5 lbs a month every other month, for quite a while. No change in diet. No increase in exercise. I stabilized at 135 lbs until I started to get sick. Then I rapidly gained a few pounds which I kept on for several months. Finally I became disabled by Lyme, allergic to everything, went on antibiotics and dropped too much weight.

If I’ve learned anything from my history, there are other factors, besides diet and exercise, which influence or even govern my weight. I am hoping that when I stop herxing from Bartonella (maybe by getting rid of the infection or making it dormant), that my weight will return to a more comfortable level.

CHIM and Menstrual Changes

It could be a question of timing. It could be that I’ve recovered enough of my body from the infections that this would happen anyway. It could be that CHIM made these changes. It could be that I’m getting older (now 41 years old). But my menstrual cycle is changing.

Two months ago, I had 2 weeks of miserable PMS. Last month I had only 3 days of mild PMS. In the years since I started coiling, I can tell when I ovulate because I get mild mittelschmerz, where I can feel pain from the fluid that is released when the egg leaves my ovary. Then I can smell the changes in my body (either because the smells change or my sense of smell changes). There are predictable amounts of swelling in my abdomen and breasts. There is a certain amount of discomfort and cognitive reduction that I’ve gotten used to. And I usually have 5 days of PMS symptoms.

Last month, after the previous strange cycle, I had PMS for only a short time. I could still tell when I ovulated, but it was less obvious than before because there was no mittleschmerz. This month, there are no clear signs of PMS or that I ovulated. It could be that I didn’t. (I’ll find out next week if my cycle doesn’t start on time.) Or it could be that I’m joining the many  women I know who don’t suffer from PMS…at least for a month. If it is the latter, I’m very grateful. If it is the former, I’ll just have to live with it.

Disclaimer

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Slippery Hope

Friday, February 19, 2016

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

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

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

Hope and other slippery feelings

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

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

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

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

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

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

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

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

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

The Rest of the Treatments

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

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

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

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

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

Ring necked dove

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

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

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Taming Vagus

Saturday, April 18, 2015

A while back, I figured out the connection between my vagus nerve and all of the worst symptoms of my menstrual cycle (see Surviving Vagus). I came up with an action plan that involved not triggering my vagus nerve at the onset of my cycle. The best plan, of course, is to get rid of the hair-trigger on the nerve, which will hopefully happen once the Bartonella infection is gone. But for now, I do my best to take ibuprofen the second I feel any cramps and to make sure not to bear down when I’m in the bathroom.

A quick recap of what I’ve learned so far. First, when I’m having a Bartonella flare or I’m in the midst of coiling aggressively for Bartonella, my menstrual cycle goes out of whack. It gets longer. I have more PMS. When it arrives, I get hit by a cyclone. I get lots of the symptoms of a vasovagal response. (More on that below.) Alternatively, in the months after I’ve been treating Bartonella aggressively, when I’m focusing on other infections and only coiling a minimum against Bartonella, my period comes regularly and without much fanfare. Every month, however, I take the two basic precautions: ibuprofen and no bearing down.

It’s been a long time since I had a really bad menstrual cycle. Medium bad, maybe. A long nap during the day. Some fatigue and moderate cramps once I’ve started the pain killers.

Last week was a doozy. I knew it was going to be a mess. I started having PMS (sore breasts) the day after I ovulated. Well, I guess I knew something was up because I got middleschmertz (pain with ovulation). I went for a few acupuncture treatments. These made the PMS fade to the background while I was having lots of other Bartonella symptoms, mostly neurological, that I’ve been writing about for the past few weeks. In the few days before my period started, I had insomnia, mild abdominal cramps, and a sense of impending doom.

When my period actually started, the cramps hit me like a ton of bricks. I woke up from my sleep in the morning from the pain. I ran (sort of) to the kitchen, made up some warm water, took two ibuprofen tablets, and ate a handful of nuts. (The nuts are to prevent the drugs from ripping up my stomach; warm water is less likely to trigger vomiting.) I went back to the bedroom, filled up a hot water bottle, then stopped in the bathroom. I had cramps and an urgent bowel movement. Then I had to force myself to get off the toilet. It is so automatic, bearing down in response to cramps.

I didn’t escape without some trauma. The drugs took about 20 minutes to ease the pain. In that time, I started to feel nauseated and weak. My hands and feet turned to ice. I felt exhausted. I spent most of the next ten hours in bed, with two bathroom breaks along the way. My blood pressure was low, making me feel lightheaded and tachycardic when I got up. My feet wouldn’t warm up even with five blankets (comforter, down-alternative comforter, polyester quilt, down throw, and cold weather sleeping bag) and flannel sheets. I was fine to read, but I couldn’t do much else besides that and nap. Even after I got up and made some warm food, I was tired and ready to lie down.

The worst part was that I woke up the next day feeling cold and tired all over again.

The good news is that I broke the cycle before I had a full fledged vasovagal response like I’ve had in the past: whiting out (on the verge of fainting), vomiting, diarrhea, chills and sweats, weakness in my legs leaving me stuck on the bathroom floor for hours.

This brings me back to the first thing I said. The best remedy is to kill the infection on my vagus nerve so that it doesn’t get tripped up by cramps. The second best remedy is to do my best to keep the triggers at bay.

Coiling Notes

In the meantime, I’m continuing to coil aggressively for Bartonella and sporadically for Lyme. I’m worried about Babesia because I find myself to be more tired than usual, even after the start of my menstrual cycle. I’m giving the fatigue two more days to see if it lets up a little, otherwise I’ll try coiling for Babesia and see if anything changes.

Disclaimer

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Afterthoughts

Tuesday, April 14, 2015

Last night, after writing out all my thoughts about my symptoms, I had insomnia. It gave me time to think things through in the quiet of my mind without any distractions.

I have two new ideas, somewhat related to each other, that will help me going forward.

Fanning the Flames

As I looked at all my symptoms, or the fact that I’m having a big symptom flare–especially in my joints and skin, I realized that it is all inflammation. It seems like my body is having an inflammatory response to something or to many things. My initial thought was about whether I should do something to bring down the inflammation: antioxidants, dietary restrictions, an extra acupuncture session.

When I thought about it more, I went back to my mantra, the only way out is through. With many of the symptoms I’ve dealt with, continuing to coil and not treating the symptoms has led to longer lasting relief without a rebound when I stopped treating the symptoms.

I don’t really want to go back to the hard core dietary restrictions, though I’m willing to be more strict about avoiding sugar. I learned my lesson pretty recently about adding and subtracting antioxidants when I stopped co-enzyme Q-10 while traveling. I had to take it again at a higher dose until I got back to coiling. Then I could deal with the rebound with two weeks of coiling. That leaves me with acupuncture.

As I thought about it more, I realized that acupuncture may have been one of the contributing factors in the increased inflammatory response. The protocol I requested may have corrected an underperforming immune system. Whenever my immune system comes online or increases, I get acne, joint pain and, more often than not, a cold. Although I forgot to mention it in my last post, I’ve been sneezing and coughing a little, like I’m about to get sick, but I haven’t gotten sick yet. (Stop typing. Knock on wood.)

This lead me to a few other thoughts. One of my symptoms of PMS is a flare of Lyme and Bartonella symptoms, which could be reworded as increased inflammation throughout my body. I don’t always have a flare anymore, just some months. I remember, however, that the flares have occurred more regularly when I’ve aggressively coiled for Bartonella in the past. My whole menstrual cycle gets messed up. This might be why metformin “stopped working” two years ago to control the PCOS symptoms and PMS symptoms, shortly after I first intensified my Bartonella coiling protocol.

The second thought was about which symptoms have gotten worse. They are mostly in my joints and skin. My internal organs don’t seem worse than usual, only mild to moderate kidney pain, digestion relatively normal by my lax standards (other than an unusual and wildly fluctuating appetite), no liver pain. Inflammation attacks the weak points that I haven’t been actively detoxing. It also may get at the places where blood flow isn’t as strong, places where toxins might build up locally, thus the joints or pores. Alternatively, an increased inflammatory response may be attacking places where dormant bacteria are hiding out. I’m not really certain, but any or all of these ideas may have an aspect of truth in them.

The final, more significant thought, is that doing full-body exercise is actually increasing blood flow to places and clearing out toxins and fighting bacteria that were safely stored in a dormant environment.

None of these things are bad. Although inflammation is unpleasant and at this point affecting my daily activities, I’m not sure it makes any sense to try to interrupt it. (That doesn’t rule out a dose of ibuprofen with lunch.)

Reclaiming Exercise

All of that came from the first half hour of insomnia, after my husband had fallen asleep and I couldn’t. Once I started thinking about exercise, something new fell into place.

Each time I’ve attempted to do an exercise plan of any type, even when I started trying to walk regularly after moving to California, I’ve had a hard time. I’ve found myself exhausted for days. I’ve been unable to move. I’ve triggered flares of the various infections. All this happens while I’m coiling daily.

It’s slightly different from when I travel to visit my family. In those settings, I usually end up triggering a flare by not sleeping enough and blowing through my reserves of energy. Several times I’ve managed to catch a respiratory infection along the way. And I’ve done it all for somewhere between 10 and 21 days without coiling. So I come home and do my best to recover to the point where I was before I left.

Exercise at home is a vastly different situation. What I could finally see last night is that when I’ve tried to exercise, I can’t do the thing I set out to do. The relapsing symptoms are overwhelming. But as I coil through them, and often give up on my exercise plan, I get stronger. I build up my stamina a little bit more. I build up my strength a little bit more. I don’t always get back to the thing I wanted to do, but life gets easier because with more stamina I can do more around the house, go for longer walks, do more things on the good days.

What it reminded me of was when I decided I wanted to expand my diet to include red fruits and vegetables, nightshade vegetables, dairy products, and wheat products, or when I decided I wanted to stop taking so many supplements. These changes triggered more symptoms, triggered flares in the infections. I did it intentionally, knowing this would happen, and facing it head on with a plan. I introduced foods or dropped supplements a little at a time, triggered the infections, then coiled until the symptoms were gone again. Since I knew what was happening, I planned on not being well enough to complete the daily activities I’d become used to doing. I knew I would have more pain and less energy. But I also knew, after the first successfully introduced food, that the increase in symptoms was temporary.

I might be able to do this with exercise. Instead of using exercise as a signpost of how well I already am, or more importantly, as an activity I have a right to engage in once I get healthy, I can change my perspective to see exercise as a trigger. Exercise may trigger the infections through increased blood flow to areas that were settled, where the infection could lie dormant because my immune system didn’t really reach that area effectively. Or, to go back to what Dr. Burrascano says about exercise in Advanced Topics in Lyme Disease,

There is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics…

As my immune system goes up and down, it may allow the dormant bacteria to wake up, then participate in killing it off.

I should note that Dr. Burrascano recommends against aerobic exercise. I would like, at some point, to build up to aerobic exercise, but at this point, the cardiac symptoms I get afterwards are frightening and overwhelming. For the foreseeable future, I’ll have to take his advice.

This leaves me thinking about how to reclaim exercise. If I decide that this is the next step, and that I want to take it while I’m also working on getting rid of the Bartonella infection, I have to deprioritize everything else. Everything else. I’ll have to put my writing on the back burner. I’ll have to plan on much simpler eating choices. I’ll have to reduce the activities I do outside the house.

I’m not ready to make that my plan. Or rather, I’m not ready to let go of everything else to exercise. Instead, I think I want to try exercising at a more minimal level, one where I’m not triggering big, debilitating symptom flares, but instead using the stamina I have built up already and go right up to the limit of what I can recover from right away but not far beyond it.

All this is subject to change as I test out my new theory.

Falling Asleep

Sometime shortly after I reached a conclusion about exercise, I was very tired and still awake. I decided to do a body scan to determine if there was anything preventing me from sleeping. I got up and emptied my bladder for the third time since the lights went out. I put on an extra sweatshirt once I determined that I wasn’t snuggly warm. Then I settled in bed again and decided it was time to clear my mind until morning. As thoughts came, I acknowledged them without pursuing them. Suddenly it was 6am and one of the cats woke me up for an emergency petting session. I had fallen asleep. And I went right back to sleep once she moved over to my husband for a more vigorous rub.

Disclaimer

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Red Onions

Monday, April 13, 2015

With the ups and downs of the past week and a half, and a very sleepy woman writing this post, I want to focus on one small but significant breakthrough: red onions.

Red onions aren’t something I eat everyday, nor were they high on the list of foods that I couldn’t eat but incessantly wished for. They are a pleasant treat, a crisp, biting, refreshing addition to a salad or a sandwich. They also triggered reflux when I tried them once last year, after I had reintroduced so many other foods into my diet. Last week, I had dinner on Friday night at a restaurant that makes incredibly scrumptious appetizer salads that come with each meal, salads made from organic vegetables from the farm owned by the people who own the restaurant. I usually take off the red onions. This time, I forgot and ate them. Delicious! But that’s not all: no reflux. The next day I decided to be bold and have some in a sandwich. Equally tasty, still no reflux. Pretty good.

The point of all this is that despite the fact that I’m struggling, and that things are still difficult in many ways, I can see that my body continues to heal and get stronger.

Shifting Focus

I spent much of January through March taking a writing class. My goal is to finish a young adult novel I started before I started using the coil machine. One of the reasons I stopped working on it four years ago was because I couldn’t handle both blogging and writing anything else. There were limitations on my arms and limitations on my concentration.

Much has progressed since then. On most days, I can use my arms at the computer for up to two hours and still use them for other things (cooking, knitting, handwriting something, etc.) on the same day. On most days, I can go for a walk and still do other things (go up and down the stairs, use the computer, etc.) on the same day. On most days, I can do a few different things without my internal battery being so overdrawn that I need to spend the following day in bed.

Some of the change has been getting Babesia into remission. Some of it has been reducing the symptoms and physical stress of the other two infections, Lyme and Bartonella. Some of it comes from increased strength and stamina from occasionally pushing my limits and giving myself recovery time.

So when I came back from my recent trip to see my family on the East Coast, I had lots of things I wanted to do. While I was with them, I was focused on the tasks at hand, overdrawing my reserve energy and wearing myself out. After recovering a little, I’ve wanted to do so much: coiling aggressively for Bartonella, starting exercise again, working on the novel, blogging regularly, cooking, knitting, being social with my friends, getting enough rest and doing basic housekeeping (maybe even cleaning out a cabinet or a closet).

I’m sad to say that the list is way too much for what I can actually handle. In particular, exercise still wears me out so much that I find myself needing to rest and unable to do much else. Cooking and cleaning up after myself becomes impossible. I find I’m too tired to write. Basically, I end up knitting and coiling and resting.

In comparison, when I was taking the writing class, I felt bad that I wasn’t getting out to go for walks frequently enough. But I was able to do more of everything else, and I had a little energy left to wish I could do more.

Last spring and summer I also struggled with exercise. I live in a place where it is so beautiful outside. I want to go out and run free every day. But I can’t. If I want to go out every day, either I have to limit my “exercise” to walking, or I need to find a way to not overdo the other types of exercise I like. I didn’t do that this time. So here are my adventures.

Yoga Breathing

Two Fridays ago, April 3, when I wrote my last post, I went to a yoga class that turned out to be cancelled. However, the room at the gym was available, so I decided to do my own routine for about 45 minutes.

Of course, I overdid the workout. I started out slowly, warming up, then continued with a series of poses that worked the various parts of my body that give me trouble: my shoulders, my hips, my ankles, my balance. I worked my core muscles. I stretched and toned. I felt tired, as expected, afterwards. I desperately wanted to go for a long walk because the weather was beautiful. But I dutifully napped and blogged when I got home.

The next day everything was sore. I woke up lots of muscles that have been out of use with walking as my primary form of exercise. I was cranky from being so sore. But it seemed worth it.

The following two days, I was fine. I went for my normal walks. Even though I had pushed my body, a nap that day followed by one day of rest was good enough.

Water Baby

On Tuesday, April 7, I went for a swim at the gym. It was my first time swimming since I floated around in Hawaii during my honeymoon. It was my first time swimming laps in over a decade. It was fabulous.

I was on the swim team in junior high school. I was never the fastest. I don’t think I ever did better than 3rd place at a meet the entire 3 years I was on the team. But I love the feel of swimming laps. I love going back and forth and listening to my breathing and feeling the water glide past my abdomen while my arms and legs propel me forward. Back in junior high, I swam on weekends. I loved the big pasta dinners my mother served before and after practice and meets. I loved the annual “swim-a-thon” where we asked people to sponsor us a nickle or a dime per lap to pay for the team’s equipment. Back then I could swim 60 to 70 laps in the olympic-sized pool and collect a few bucks from a sheet full of neighbors and relatives the following week.

When I got in and swam my first length of the 1/2 olympic-sized pool at the gym last week, I was transported back in time. I could hear my coach commenting on my strokes. I could hear my breathing that day like an echo of the hours swimming almost three decades ago. I was energized. I didn’t feel the debilitated, exhausted body I’m often trapped in.

So I swam. And swam. And swam.

I swam for way too many laps (16 to be precise), when I should have stopped after completing half of what I did. When I got out, my leg muscles felts like jello. I was in a zombie trance the rest of the night. I was lying down for the night by 8:30 pm.

When I woke up the next morning, a familiar thought popped into my head: enforced rest. This is an idea listed in Dr. Burrascano’s monograph, Advanced Topics in Lyme Disease. It says that exercise should be done every other day while a person is healing from Lyme, with a rest day in between, even if the person wants to do things other than rest. I briefly had the idea that I should make myself rest after such a big swim.

I discovered that I didn’t have to “make myself rest” as soon as I tried to move one of my arms. My muscles were so tired that I felt like there was a sofabed on top of each arm. They felt heavy and impossible to move. My legs were almost as bad. It took me an hour to get out of bed. I ate and showered and coiled and went back to sleep for a nap. I ate and forced myself to get vertical for an appointment with my acupuncturist. When I got home, I ate again and got horizontal until it was time to climb the stairs and coil and get in bed. I was a wreck.

I think the acupuncture gave me temporary pep. I was okay the next morning: no pain, no heaviness in my limbs. I went for my regular walk. But underneath, I think I hadn’t really recovered. I had no attention for writing my book, blogging, cooking or doing much of anything.

Yoga Friends

Friday rolled around again. I was determined to try this yoga class, since I’m a third of the way into my one-month gym membership. I ended up arriving late and hustling to the yoga room.

It was empty.

Hmmm.

I went to the front desk to inquire, thinking I might have gone to the wrong place since it’s my first time attending the class. Nope. Class cancelled. But since there wasn’t a sign in the front alerting gym members, the manager sent a boot camp instructor to lead me through some stretches. Then another member of the class showed up.

I didn’t really want to do boot camp stretches. I wanted to do yoga. I told them to go ahead while I did my own thing on the side. Somehow it got all turned around and I led the three of us through my series of yoga poses for the next 45 minutes. It was strange to lead. I couldn’t call out all the things a yoga teacher would to help people with the poses, I just did my best to give them a clue while doing my practice.

The good thing is that I found out that Friday is usually a restorative yoga class: lots of poses to release tension in the various muscles, tendons and joints. This might be exactly what I need, if the teacher shows up this week.

The bad thing is that I’ve been tired for three days.  Saturday and Sunday, I did moderate (for me) activity: walking around at the farmers’ market and doing some other errands on Saturday, attending a baby shower on Sunday. But I was tired by 6pm both days. I just felt worn out.

Today (Monday), I feel like all this exercise was too much. I feel overcome by fatigue. I spent a lot of the afternoon napping.

Acupuncture

I went for a special request session with my acupuncturist last Wednesday. There is a treatment which involves putting needles in all the back shu points to reset all the meridians at once. In New York, my acupuncturist would do this periodically when my body got very out of whack. I asked my current acupuncturist to try it on me.

The initial effects were usually subtle, with some light-headedness and a mild headache. Then the next day, I’ve often felt many of my symptoms get less intense, with the results lasting for up to a week. When the symptoms came back, they often seemed to be in a different configuration.

This time, I had the woozy feeling and a mild headache. The main difference was that I wasn’t so tired the next day. My nerve pain calmed down a lot until Sunday. That isn’t very long, so I wonder if something else is going on.

The other request I had was to complete the had treatment she started on me at the clinic a month ago. I had pain in all my fingers. The acupuncturist put a needle in the space between my left index and middle fingers. My index finger felt better. It has felt different than all of my other fingers for an entire month, specifically feeling less painful.

I stopped her after one needle the first time because it was so painful that I wanted to shout. I had to ask her to take it out. I didn’t want to scare the other patients, and frankly, I wanted to know if the initial intense pain would pay off enough to make it worth suffering through it for the other fingers. A month later I had my answer and was in a private treatment space.

She put needles between all my fingers and by my thumbs as well. Only the left hand hurt. By the time the treatment was over, the pain in my fingers, pain that I’ve been feeling for months, was gone. I’m almost completely certain that it was nerve pain. And I hope it was, because as of Sunday, I have pain in my hands again, along with slightly swollen knuckles and lots of popping in the joints.

Good treatment. Poor timing.

Symptomatic

For the past few days I’ve been feeling more symptomatic. When I put the symptoms together, they don’t form a picture with a clear source. It could be several different things contributing to me feeling bad. Or it could be one thing that is provoking me. I’m not sure.

First we’ll get a look at the symptoms. I’ve had nerve pain in my upper arms before the acupuncture treatment and returning a few days later, today the pain now extends to both hands. I’ve had tingling in my arms in the mornings and when I wake up at night, though that is diminishing. I’ve had dull aches in the muscles in my arms and legs, accompanied by a feeling of heaviness. As I mentioned above, I’ve been more tired than usual. At night, I had a night heat two nights ago and last night a mild sweat. I sleep a lot, but lightly, waking up two or three times during the night. I’ve been having nightmares, mostly toward the morning. My joints are popping and cracking, mostly in my shoulders and hands, and today also my hips and ankles. I’ve had intermittent headaches, mostly in the afternoon and evening, and occasional light sensitivity during the day. I’ve got a lot of floaters in my eyes; for the past week I see them so clearly that when I look at a light colored wall, they look like insects until I try to focus on them. When I look at other things, a blurry spot appears near each big floater. My skin and joints have been more inflamed, with acne on my face and back and butt, and my knuckles somewhat enlarged. (My wedding ring can get over my knuckle but hurts on the soft tissue when my hands are swollen. But it can’t get over my knuckle when my knuckle is swollen.)

Since I last wrote, I had nerve pain in my hips and going down the outside of my legs. But that has come and gone.

One last symptom, one I always forget to mention, and that leaves me for months at a time, is a hair follicle on one of my right eyelashes, that produces a hard, white secretion. I don’t know which infection it comes from, though these days, I suspect Babesia. It’s been gone for several months and reappeared in a milder form on Sunday morning.

Possible causes:

  • Too much exercise – I drain my reserves and my immune system is slightly suppressed allowing everything to get out of whack, and possibly triggering the chronic infections.
  • Aggressive Bartonella Coiling – I’ve been focusing very strongly on my central nervous system, which usually generates fatigue, nerve problems, floaters, light night sweats, night mares, and can mess up my menstrual cycle.
  • Impending start to next Menstrual Cycle – I have had only fleeting twinges of cramps, so it might be late. However, just prior to and up to a few days after my period, I often have a big flare of multiple symptoms of Lyme and Bartonella infections, and some months I get acne.
  • Babesia Flare Early Warning – Two things made me think of Babesia, the first of which was the day after swimming when could barely move and needed to sleep. One day of fatigue does not equal Babesia, but it happened again today. Having a light night sweat is sometimes an early warning sign, but can only be interpreted by several subsequent nights of increasing sweats. Then there is this eyelash secretion, which comes and goes, but which has been gone since at least November when I hit a turning point against Babesia. Still, I wasn’t paying attention to the eye thing closely enough in the past to be sure it has anything to do with Babesia.

Where do I go with all these symptoms? There’s no clear answer. I’m going to rest for a few days, at least until my next menstrual cycle starts. If that clears things up, then I’ll know what it was. I suspect I’ll have to go easier on the exercise, no matter what. Then I’ll also see if things keep changing as I move through the Bartonella coiling. But if the lie-down-all-day fatigue persists, I’ll have to try coiling for Babesia again.

Disclaimer

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After a Quiet Month

Wednesday, October 22, 2014
Baby Blanket

Baby Blanket: Crochet Therapy

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

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

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

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

Coiling Report

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

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

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

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

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

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

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

Babesia Protocol

570Hz followed by 753Hz at each session

Morning (19 minutes total)

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

Afternoon (19 minutes total)

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

Night (18 minutes total)

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

Backburner Infections

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

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

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

Planning Ahead

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

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

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

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

Disclaimer

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A Month in my Head

Saturday, June 21, 2014

I’ve been talking to myself a lot the past month. It’s been a physically challenging, emotional roller coaster of a month. The vaccine I took at the end of March continued to wreak havoc on my immune system. The Lyme infection got more active. The Babesia infection got more active. The Bartonella infection got more active. And the unidentified other infection I suspect I have also seemed more active. Even as I reduced their loads by coiling, it felt like more dormant microbes kept waking up.

I couldn’t write. I barely used my computer. (And when I did, it was a very specific, time sensitive task or two.) I learned during this time in a new way how important it is to keep records of how I treat my tick-borne infections and what effects the treatments have. I made mistakes that I wouldn’t have if I had written down my plans. I suffered for longer than I needed to, especially with Babesia. I forgot what I do that makes treatment work well.

All month, I thought about what I should have been writing down. At one point, I started a blog post in a notebook because the computer wasn’t nearby when I was finally ready to write. It helped me figure out the first thing I was doing “wrong” (though there is no single “right” way, there are many ways to coil that are less effective than the best I’ve come up with).

Beyond the headaches and wrist pain and shoulder and knuckle arthritis, each of which stymied my attempts to write, I was pretty depressed much of the time. I didn’t want to talk. I didn’t want to write. The vaccine triggered a full-on relapse. I felt like I’d made a big mistake. I felt like I was starting all over again. I needed this vaccine (TdaP) to be able to travel this summer, and the intensity of the Lyme relapse made me question whether I could travel at all. My grand plan of taking this vaccine, then trying a flu vaccine in autumn, both of which were supposed to trigger the Lyme cysts into waking up and hopefully reducing the amount of dormant Lyme in my system, seemed like a foolish venture. I started to question my judgement, and frankly my goal to fully rid myself of the Lyme infection.

In the aftermath of these past few months, I’m reconsidering. I thought a sterilization cure was possible (completely eradicating every trace of all the tick-borne infections in my body). It might be. But if I have to go through being disabled again, I’m not sure it’s worth the trouble. I’m now looking at a functional cure. Stress my body in the ways that I’m likely to run into in the future and coil until I have no more symptoms (and a little past that), knowing that my immune system can keep in check whatever dormant bacteria are left in my body. I’ll do that knowing that if I have a major stressing event, I’ll need to go back to coiling.

All this has also made me reconsider what it might mean to get pregnant. When I thought it was possible to achieve a sterilization cure, I planned to reach it before considering having a child. Now I think it isn’t possible, at least on a time frame of my own fertility and on a treatment plan I’m willing to go through, so it would mean being on long term antibiotics again. All this has my head spinning. I have no decisions made, about pregnancy or anything else. But I am still clawing my way out of a pit I threw myself into, not realizing how deep it was or how slippery the walls would be.

Meanwhile, I’ve learned a lot and relearned a lot. I’ll get to that in more detail in the rest of this post. Mostly, I’ve tried my best to get well using only the coil machine and not adding back in the supplements or using dietary restrictions that I know will boost my immune system and reduce my inflammatory response. These things definitely would have made me feel better really quickly, but they would send the active Lyme bacteria right back into cyst form and leave me no better than if I hadn’t triggered the dormant infections at all.

A Month of Coiling

Since my last post, I’ve been dreaming of a coil machine equivalent that could irradiate my whole body at once. That would be incredible. Instead, I’ve been using two coils, trying to cover my whole body multiple times a day and juggling which infections to treat most. The thing that bothered me was that the symptoms were much worse than the herxes. I felt like I could coil more and get better faster on any one of the infections, but that all three were kicking my butt so I couldn’t really focus on just one. If I had the mystical full-body machine, I would have used it for 10 minutes every day on the Lyme setting, 10 minutes 3 times a day on the Babesia setting, and 10 minutes 3 times a day on the Bartonella setting. If I could have been doing that, I imagine life would have been more about the herxes and less about the overactive infections.

Instead, I was stuck with problems with my machine. The needle on the ammeter was wavering instead of moving smoothly when I turned on the machine and instead of staying at the designated position once I set it. It made me really nervous. I called someone who has more expertise in understanding how the machine works. He suggested that if the problem occurred with both coils, it was more likely the connector on the machine or some other central problem. I was a bit paralyzed in how to proceed to test it. So I retrieved the extra coil machine I lent a friend to play with and tried my old, trusty, first coil. Same problem. It definitely wasn’t from the coils. Then the problems escalated. The amplifier started acting up, turning itself off as though it had flipped a circuit breaker. I wanted to cry or scream or throw my hands up and start taking antibiotics again. (Overly dramatic, but I felt so bad, physically and emotionally, that I had no bandwidth for problems with the machine.) I called a friend who knows almost nothing about Lyme or coiling and asked him to let me think out loud, with all the huffing and frustration coming out at the same time. As soon as I hung up, I knew the first thing to try was changing the power strip I use to plug the machine into the wall. Problem solved. Halleluiah!

A Month of Lyme Coiling

I’ve been doing the same Lyme protocol all month. Every three days I do a full body scan. I’ve modified it since the trip to Mount Shasta because I realized that doing extra time on my central nervous system yields big results. (Reminder to anyone reading this, this is not the protocol to start with. It can cause a herx that could send a person to the hospital. After coiling for Lyme for 3 years I can handle this much coiling.)

Lyme Coiling Protocol

432 Hz

Repeat every third day

  • Head: each side, top, back – 5 minutes per
  • Spine: upper, middle, lower – 5 minutes per
  • Liver, spleen, abodmen – 5 minutes per
  • Each shoulder blade, chest, each side of ribcage – 3 minutes per
  • Between legs: thighs, knees, calves – 3 minutes per
  • Feet through coil – 3 minutes
  • Each ilium front, each ilium back, each hip bursa,pubic bone, each upper butt cheek (to get iliac crest and femoral head), sitbones (bottom of butt) – 3 minutes per

The herxes have been present but not terrible: headaches, loose stools, extreme somnolence, long sleeps at night plus long naps, spine pain, cold hands and feet, and fatigue. These were less disabling than the Lyme symptoms themselves. I had joint pain, stiffness, cracking and reduced mobility in every joint. From my toes and knuckles to my knees, hips, shoulders and elbows, I was having a lot of problems. It hurt when I moved. It hurt when I stayed still. I couldn’t get restful. I couldn’t find relief. I tried some advil for my wrists, knees and neck when the pain got to the point when I couldn’t focus on anything else. I got mild relief, a slight reduction in pain, but it didn’t go away. In addition to the joint pain, I’ve had bone pain, especially in my ribs. In general, my pain level has been much higher. This contributed to a feeling that I’ve gone backwards and landed in a place I thought I’d never return to. The increased Lyme bacteria activity affected my moods, beyond what the pain caused. I was more depressed and defeatist than I’ve been in a long time. I couldn’t think straight, couldn’t concentrate on things I read or enjoy watching things on tv.

Slowly, coiling frequently, without all the usual detox activities, things lightened up. At this point, I have some shoulder and hand pain every day. I’m still pretty tired. But I can move around. I can knit again. I can type, at least today. However, I don’t feel like I’m through the woods yet. I get pain every afternoon in my ribcage. Before the vaccine, it only came when I ate wheat. Now it is every day. That pain signals to me that the Lyme continues to be active and I’m vulnerable to relapsing again.

A Month of Babesia Coiling

Since I’ve been coiling for all three infections, I’ve had to make do with coiling less than an optimal amount on each infection. I’ve been doing three coiling sessions each day, two coils available per session, split among three infections. At the beginning, I was coiling my whole body for Babesia, one minute on each location, 5 minutes each on my chest and liver, 10 minutes on my spleen.

About two weeks ago, I realized that coiling for Babesia twice a day, morning and evening worked better in the past to get rid of the active infection. At that point, I split up the coiling to use one coil on Babesia each morning and each night, doing the same protocol I’d been doing, only in two parts. It helped. I started to feel less tired. I had two days of crushing headaches (I wanted Athena to jump out of my skull already), then I felt like the Babesia symptoms were gone.

The symptoms at that point were fatigue and heart troubles (chest pain, extra click in my heart signaling that the tricuspid valve prolapse was triggered). The fatigue from Babesia coupled with what the Lyme and Bartonella kicked up made me want to spend a lot of time lying down. I couldn’t concentrate on anything, not even the radio. During this time, I went to do exercise a few times (stairs and walks at the beach) but that just knocked me out for three or four days afterwards. I felt pretty bad. But, once I changed the protocol to be split into two sessions per day, things started to get better.

I ended up having to skip a night of Babesia coiling. No problem, right? I thought I’d only need to coil for Babesia for three weeks after the symptoms were gone anyway. The next day I went back to my twice a day protocol. I had a big night sweat that night. What the heck? Why did it come back so fast? A few days later, I skipped again, and the following day after a regular Babesia coiling day, I had another big night sweat.

This is what I fear. Having to coil to keep the symptoms at bay but never getting rid of the infection. Then I remembered what I learned back in 2011. To get rid of the active Babesia, I have to coil my blood stream three times a day. It’s just a requirement. I relearned that twice before. Now on this 4th round of trying to get rid of an active Babesia infection, I forgot all over again.

I spent a morning trying to figure out what to cut out of Bartonella coiling to make room for the extra 10 minutes of Babesia coiling time I needed to do. I wished I had a third coil. Then it occurred to me that I have three coils at the moment. Bingo! Now I use the third coil in the middle of the day. I’m coiling at 570Hz, 1 minute on half my body (13 locations) in the morning plus 10 minutes on my spleen. In the afternoon I coil for 10 minutes on my chest. In the evening, I coil the other 13 locations on my body, 1 minute each, and 10 minutes on my liver.

Two days after I added in the 3rd coil, I got a migraine. These headaches are killer. Every day, I feel one coming on. Every day, I try to come up with a way to break it. Usually they start with light sensitivity (remember that? yet another gift of this relapse). Light gets it started and makes it worse. If it doesn’t start till late afternoon, I try to keep quiet and low light then sleep it off. If it starts earlier in the day, 8oz of cola do the trick. Since I have no other caffeine in my diet, taking caffeine at the beginning of a migraine cuts it short. I’ve done this twice, and not two days in a row. I’m afraid my magic bullet will lose its magic if I make it a regular habit. This post (which is becoming one of my longer ones) is fueled by a bottle of Coca-cola from Mexico. It goes down easier with sugar than with corn syrup.

With any luck, I’ll get through this in the next few days before I head to NYC for two weeks, followed by a camping trip when I get home. I didn’t plan for quite this big a relapse of so many infections when I decided on my summer schedule.

A Month of Bartonella Coiling

I’m always tempted to put Bartonella on the back burner, to do a minimum of coiling and deal with it later. But that doesn’t work this time. The days I spent in Mount Shasta let the Bartonella regrow and it was unpleasant when I got home. I had all sorts of trouble with my arms, poor coordination, tingling and numbness when I wake up from naps or in the morning. Tingling sometimes when I’m sitting still. Pain from my elbow to my fingertips, the entire part of my arm, not just the bones or muscles or joints. I’ve been tired a lot, though that’s from all three infections. I’ve had bowel problems and abdominal pain. My food sensitivities have all come back (though I’m not sure if they’re from Bartonella or Lyme or a combination of the two infections), leading to a swollen abdomen on many occasions, tooth pain, acne outbreaks and more bowel troubles. I’ve been terribly moody. It gets worse when I’m herxing, but I’ve been more than a little bit moody all the time. I’ve had brain fog to go with my short fuse and a series of crying sessions. It’s been bad.

I’ve been coiling for Bartonella two days out of three (the third being reserved for Lyme). Yet again, I feel like I’d have made more progress if I could coil daily with more coiling time each day the way I was before the Babesia woke up. I’ve changed my protocol to be 1 minute on each part of my body except for a few key areas that need extra treatment: back of head – 8 minutes, each shoulder knob – 5 minutes, upper and middle spine – 2 minutes each, sacrum – 4 minutes, liver, spleen, abdomen and chest – 5 minutes each. That’s all I can fit in a day, if I’m also coiling for Babesia.

At the beginning of the month that started May 25, I herxed a bit from coiling like this. There were tension headaches, kidney pain, and constipation, followed by hand and foot pain upon waking, urinary hesitation, and lower abdominal pain. The kidney pain and tension headaches are gone. I still have tension in my neck and shoulders, but they don’t seem to be triggering headaches. I still get a lot of lower abdominal pain and constipation. I’m also still having symptoms in my arms and hair-trigger emotional outbursts. Bartonella makes me feel crazy.

The Chocolate Experiment

When I last wrote, I was taking chocolate, 87% cacao, in the morning in an attempt to bolster my cortisol levels. I did this for a little more than 3 weeks. I didn’t notice any difference, except that it made it harder to nap. I think the caffeine overpowered any other benefits the chocolate might have offered. I didn’t really like the flavor unless I ate it with something sweet (like a dried mejool date). And I couldn’t tell that it was helping at all. So I stopped. Napping is easier but nothing else has changed.

I’m not sure what to do about my cortisol, if anything. I haven’t tested the levels in several years, but symptomatically, I seem to have a lot of traits associated with adrenal fatigue. I get tired late morning for awhile, then bounce back in the afternoon or evening, depending on if I get tired enough to nap. I’m losing more hair than I’d been doing before the relapse. I’ve started putting on pounds again, after stabilizing a few months ago. I haven’t been eating extra food, carbs or sweets. I just seem to put on weight by doing the same old thing. The only thing I think I can easily change in the near future is to begin exercising again as the fatigue has started to let up.

Meanwhile, my period was on time (28 days), with one day in bed, mostly sleeping, and cramps the next day that went away with one dose of advil. So something is still working right.

The sinus infection I caught in March is still dogging me. Only in the morning and before bed do I notice it, but it hasn’t cleared up.

I know that to deal with all of these random extra problems, I have to get the infections back under control. I suspect that I can do it with coiling alone, it just takes time.

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