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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.

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