It’s been a long time since I’ve been able to record what’s going on, two weeks already. I’ve had a lot on my mind. The good stuff has included some celebrating of my husband’s birthday, which was a great excuse to have fun and eat yummy food, and flying to North Carolina to spend time with my sister and her family, which is where I am now.
The harder stuff has had to do with the Bartonella symptoms. The headaches started getting a little more frequent. But worse than that, after waking up one day with no pain anywhere or grogginess or constipation, everything got worse, most especially my arms. My wrists, elbows and forearms were in a tremendous amount of pain. I couldn’t do much. I didn’t even want to hold a book while I was coiling. I didn’t want to make my breakfast. I didn’t want to wash my hair in the shower. I was in that much pain. Again. It’s been a long time since I was in that kind of shape. So typing was far beyond my capacity for several days.
I’ve got a lot on my mind. I’ve been learning new things and coming up with more hypotheses about what these tick-borne illnesses do to a body and what it takes to recover. I also have some thoughts on Bartonella coiling and some symptom changes to record.
Bartonella & Lyme Coiling
First things first, since this is a blog about coiling for Lyme and tick borne illnesses, there are the herxes from the recent coiling protocols. I continued to do Bartonella three times a day two days in a row, and on the third day to do Bartonella twice and a full body scan for Lyme.
Bartonella has been hard. Some things got better. The insomnia that keeps me waking up over and over all night is gone. Just gone. However, I’m having a hard time falling asleep at night. So I’ve been more tired during the day. When I’m tired during the day, I’m less active, even doing things like going for a walk, tend not to happen. Then at night, I can’t fall asleep again. I’ve been trying to break this cycle with naps early in the day to give me enough energy to do things during the day and tire myself out. At least that was what I was doing while I was still coiling every day. Since I started my coiling break on Wednesday (5/22/13) I’ve been more active while hanging out with my sister and her family. I find myself plenty tired, but I still can’t fall asleep at a reasonable hour. I’m sure the time change isn’t helping. The early naps get me through the day.
Along with fatigue, I am getting knee pain when I haven’t slept enough. This dates back to my life as a teenager. I’m hoping it is part of the Bartonella herx.
The last week and a half of coiling, my arms and legs started hurting more and more. It was strongest during the first part of the day. Then on Friday (5/17/13) I woke up with no pain. I didn’t get nauseated after eating. I just felt okay. I felt as close to well as I had in a long time, at least for the first part of the day. I was tired. I’ve been tired, maybe from the Lyme coiling as well as the insomnia. After Lyme coiling, I sleep a lot. I tend to sleep at least ten hours, even if it takes a while to fall asleep at night.
Friday I was fine, then by Sunday (5/19/13) I was in tremendous pain. My arms were in really bad shape, as I described above. It was in my joints and also my nerves, with pain in paths down my arms. It was uncomfortable and distracting from the things I wanted to do. This pain was very familiar. It happened a few times in my life before I became disabled by Lyme and again several times since. I suspect that as I start to get rid of the Bartonella infection, I will go through many, if not all, of the symptoms it has caused in the past. The pain continued through Wednesday (5/22/13) when my coiling break began. Since then it has died down, except now that I’m typing, my hands and wrists are starting to hurt again.
My abdomen remains swollen. Sometimes, I think I’ve gained weight and the swelling will never go away. But then I see that my hands and wrists are still bony and my spine is still visible on my back. (It doesn’t stick out like it did a year ago, but it is visible, even when I’m standing up straight.) For as long as I was coiling, the constipation was consistent. I did my best to eat lots of veggies to keep things moving. To give you an idea of what I mean by lots of veggies, I ate a whole butternut squash in one day. On another day, I ate a whole head of cauliflower. And still, my feces were hard, small and dry, and difficult to get rid of. Since I stopped coiling last Wednesday (5/22/13), my abdomen has stayed swollen, though slightly less so, and it has gotten easier to defecate. My hypothesis is that the constipation is part of the Bartonella herx. I think I may have gotten the infection down to a place where it won’t cause constipation, without treatment, at least for a while, but the herxes still do.
Nausea has become a daily problem again. In some ways, it is my worst symptom. The last week of coiling, I couldn’t do anything after breakfast for about an hour and a half. I sat and read or listened to the radio to wait it out. Then I could get on with my day. But it is the symptom that makes me feel like I will never get better. It has a strong emotional charge. Since I stopped coiling, the symptom has gone down to about 15 minutes after breakfast and sometimes after other meals. As long as I sit a little, I can still hang out with my nephew and play.
I’ve had a lot of headaches. Many of them are short-lived, an hour or so, and not painful enough to stop me from my activities. They are a distraction rather than a cause for stopping everything. On the other hand, I’ve had a few really bad headaches, the kind that do stop my activities. They’ve all come in the evening or night. I am able to sleep them off. I assume they are from coiling…except that I’ve definitely had at least one that was triggered by eating a small amount of cabbage (because it was in food that I bought to eat on the plane). It is possible that some of the other headaches were triggered by food sensitivities because I ate small amounts of such foods when I went out to eat.
I’ve been experiencing frequent tingling sensations in my arms and legs. It happens any time, day or night, and every day. It has continued, though with diminished intensity, even after I stopped coiling. The same is true of the pain in my joints and the pain in the bones of my feet. My joints, especially have been bothering me, especially my knuckles and wrists. The pain in the bones of my feet come and go.
The night sweats were happening intermittently, a few days in a row then they stopped for a few days. They came back for two days when I began my coiling break. Now they seem to be gone. However, as I’ve been taking my temperature every morning, I’ve discovered that some mornings since my coiling break began my temperature is much too high for a basal body temperature, and even goes down after a few more hours. I’ve read that Bartonella can cause low grade fevers in the morning. My temps have been lower than fevers but signal that something is going on.
I’ve had a few bouts of low blood pressure, racing heart (especially after climbing the stairs) and chest pressure. I’m not sure if it the accumulated effects of Bartonella coiling or Lyme coiling. It was about every other day the last week that I coiled.
Finally, with all these symptoms coming on as I continue Bartonella, I’ve had some emotional upset. I want so badly to just feel better after I coil. I’m tired of having herxes. This translates into a certain amount of moodiness and irritability. Then on top of that, I think the Bartonella triggers emotional responses that are out of proportion to what is happening around me.
More About Hormones
I went back to the book store to look through the book, The Hormone Cure by Sara Gottfried, again. This time I read the chapter about cortisol. I knew from way back in 2008 that I had adrenal problems that resulted in cortisol dysregulation. I took eleuthero (aka Siberian ginseng) for several months, and it helped a lot with fatigue. Then I stopped taking it because when my body got a little better because it suddenly gave me insomnia (back when I used to sleep 14 hours a day, insomnia was a shock). I never went back to it, although after reading the book, I wonder if I should have tried it again when the severe fatigue returned.
Anyway, to paraphrase and oversimplify what I learned, when a person is under stress for extended periods of time (on the order of years) from work, family life or physical problems like chronic or recurrent infections, first the adrenal glands start producing too much cortisol, then they overcompensate and the body absorbs it too quickly leading to low cortisol. The adrenals overcompensate, producing too much cortisol again, partly from the dip and partly from the chronic stress. This process leads to adrenal fatigue from the daily overproduction. After a while, the adrenals begin producing less and less cortisol.
Often with adrenal fatigue, the body stops producing sufficient quantities of cholesterol and pregnenolone, both of which are needed to synthesize sex hormones. Then the rest of the sex hormones get out of balance, and might all be on the low side. These can affect the thyroid hormones as well. Supplementing with synthetic hormones masks the problem rather than addresses its causes. Some of what needs to be done is to reduce the stressors (like getting rid of the infections), but that isn’t enough. Changes in diet, exercise, sleep habits and some supplements can help heal the body and give the hormones a nudge in the right direction. These are the things I’m considering now, and I wish I had known this before.
For myself, I think things are moving in the right direction. But as I read the book, I learned some things that applied directly to me. The most striking is that night sweats can be caused by low estrogen. It’s funny because it looks like the PCOS that I have is similar to estrogen dominance. But I also learned that estrogen dominance can happen with low estrogen if the progesterone production is also too low. I wouldn’t be surprised to learn that I am still in a place where my body can’t regulate my sex hormones properly, even as it feels like something is moving. This may be another area affected by the Bartonella infection (and the other ones as well) that will cause more symptoms before they go away.
I started Vitex on May 12 at the beginning of my last menstrual cycle. I’m hope-hope-hoping that it reduces the two weeks of PMS to something less extreme. Just in case, I have acupressure seeds to put in my ears on the Shen Men points if the symptoms get bad.
Meanwhile, I read about a test of metformin on C. elegans, a worm that is used for basic research. The thing they learned is that metformin “helps” with insulin resistance by changing how E. coli metabolize food for the worm to absorb. Specifically, it reduces the amount of folate and methionine that the host body can absorb. It is similar to calorie restriction, sort of. Anyway, I’d been thinking I wanted to stop taking metformin as soon as possible to let my body relearn to regulate itself, especially now that I seem to have better intestinal absorption (not so emaciated). If I’m okay without it, I think I’ll be setting things up better for my body to heal itself.