h1

Scattered

Monday, June 8, 2015

I’ve been having my ups and downs for the past few weeks. It’s only this past weekend that I’ve started to feel normal again, and yet today, I’ve been fighting brain fog. After a few hours on the couch doing nothing, I remembered that I wrote notes about what needs to go in the next blog post and decided to try writing. So here goes.

Over the past few weeks, I’ve had a long series of migraines. Each migraine is fairly short, generally less than a day long. But before they begin, I get really spaced out. So time has flown with me not able to do what I planned for the day, mostly because I’m fighting with myself to focus on anything.

It turns out that knitting is one of the things I can do that requires minimal concentration and makes me feel like I’m not wasting time. In fact, I make beautiful things. It cheers me up to see the toys take shape (which is what I’ve been working on lately, but the same is true with hats, blankets, sweaters, etc.). It also cheers me up to see the reactions of the people (mostly children) when they see the magical creature I made for them.

A frog sitting outside my house

A frog sitting outside my house

When I’m operating this slowly, is that I see things near my home that I want to photograph. I saw a house finch feeding from one of the plants in the backyard. I took a picture from inside the kitchen so as not to scare it away. Another day, I saw a frog when I was taking out the trash. It didn’t hop away before I had time to go inside and grab my camera.

House Finch eating from a plant in my backyard.

House Finch eating from a plant in my backyard.

Anyway, I have a few things of note from these past two and a half weeks. One is the migraines, another is a Lyme flare that was over in only 3 days, and finally, or maybe firstly, in the midst of these migraines and symptoms, a distinct sense of well-being I experienced on night last week.

Well-being

Let’s start with the good stuff. One week ago on Monday night (6/1/15), I woke up around 2am. Joe and I had gone out for a late dinner at a very tasty Indian restaurant. The food was fabulous, but I didn’t wait long enough before going to bed, so I had reflux…enough to wake me up. On top of that, I had a full bladder, which is enough to wake me up, then when I got to the toilet, I had that recurrent issue of bladder hesitation, which is when I need to pee but can’t get started. Finally, the thing that actually woke me up was my cat, in desperate need of a middle-of-the-night petting session, preferably on the rug in front of the toilet. So I wasn’t physically  comfortable, and I was in a less-than-thrilled mood.

So sitting on the toilet, I was surprised to find myself overcome with an almost-physical sensation of well-being. The idea popped into my head, as if my body was telling me, that the infections no longer control my body. The hijacking is over. When I woke up in the morning, the sensation was still with me. Within a half hour, the physicality of it was over, but the idea stuck with me.

I wish this meant that I was done with these infections. But I don’t think that was what my body was telling me. I still have the infections, as well as all the symptoms that accompany them. I still need to coil, to rest enough, to work on rebuilding my stamina. This fight is far from over.

However, what I think all this means is that I’ve coiled enough and healed enough to reach the elusive turning point in my health. My body has been fighting these infections for years and years. Since 2007, or maybe sometime in the year before, my body’s functions have been hijacked, first to fight off the infections, then when that didn’t work, to serve the infections. Everything inside me continued to fight while at the same time losing against these microbial architects who remodeled my immune system, my metabolism, and many other systems. Even with all the antibiotic treatment, all the supplements, and all the coiling, my body has been on high alert, diverting all resources to survival. I believe this is why I get so tired when I try to do almost anything else that requires energy. The fight isn’t over. I still need to prioritize the things I do consciously to battle the infections (coiling consistently, rest, exercise, nutrition and detoxification). But somehow, there seems some possibility, that I might actually win.

Three Days of Lyme

The week before the feeling of well-being snuck up on me, on Tuesday (5/26/15), I got hit with a strong Lyme flare. The symptoms were pain in my joints (hips, knees, elbows, shoulders and ribs), fatigue and a feeling of impatience. The impatience was like a toned-down irritability, which got worse as the day progressed. I wasn’t sure if something I ate was contaminated with egg, or if starting to walk again after a few weeks of letting my plantar fascia recover, had triggered the flare. Sometimes there’s no way to know for sure.

Nevertheless, I got up the next day feeling worse for the wear and decided I should coil for Lyme right away. I coiled my full body protocol for Lyme, 3 minutes on most body parts, 5 minutes in a few key areas, all at 432Hz. I didn’t feel better right away. But I had a long sleep that night and was incredibly groggy the next morning. I rested some as the herx worked its way out of my body. By Thursday night, my joint pain was minimal and I could tell I was headed back to normal. Friday morning, I woke up with only Bartonella symptoms.

The Bartonella symptoms gave me one more idea about what might be the trigger for a Lyme flare. As I cut down on the Bartonella load, I think my immune system is readjusting, especially since the Bartonella and the herxes that come from treating have such a strong effect on my central nervous system. I’m mentally preparing myself for future Lyme flares. Frankly, it’s comforting to know how quickly I can treat them and get over them.

I’m continuing to coil for Lyme weekly or slightly more often to prevent it from flaring and possibly get rid of whatever active infection is floating around.

Migrating Migraines

Last week, on the same week with my wonderful sense of well-being, I had another series of migraines: Sunday, Tuesday, Wednesday, Thursday and Friday. (The Saturday before all this started, I had a tension headache.) Needless to say, I’d like to be done with the whole headache craze as soon as possible.

Cuttlefish I recently knitted.

Cuttlefish I recently knitted.

The migraines are changing. The auras are getting shorter. Instead of visual disturbances that last a minute or longer, usually bright spots in my vision, I’m getting a flash of bright spots that lasts less than 10 seconds or even down to the length of a lightening strike. The headaches have mostly started in the late afternoons. They are shorter than the ones I used to get between 2007 and 20014. The head pain used to go on for days. Now, it lasts until I go to bed, often I go to sleep with a headache. The ones on Sunday and Tuesday, I woke up the following morning with a shadow of pain in the same place where the headache was. I could feel the pain, but it was mild, then went away completely within an hour of waking up. The rest of the week, the pain was gone in the morning.

What is much harder than the pain, which lets me at least feel like there is a reason that I’m not getting much done and having a hard time concentrating, is the hours between the aura and the onset of the headache. I have a kind of brain fog, for lack of a better term. All I want to do is sit on the floor and do nothing. I can’t concentrate enough to read or listen to the radio. In fact, I want nothing to do with media. Sometimes, one of my cats will notice that I’m being still and sit with me. Other times, I fight the malaise and take myself for a slow walk. Or I knit, which makes me feel like I’m doing something, but requires little concentration as my hands know what to do.

Toys I made while bumbling through a series of migraines,

Toys I made while bumbling through a series of migraines

This turtle appears when the egg is turned inside out.

This turtle appears when the egg is turned inside out.

I’m not sure if fighting the migraines has been a bad idea. I wonder if they are coming serially because I don’t rest during each one, so I trigger another. The one on Friday started in the morning, an hour or two after I woke up. I finally broke down and drank a bottle of Coca-cola, hoping the caffeine would stem the tide. My headache went away about an hour later. I didn’t get another migraine until this evening as I’m finishing writing after taking several breaks.

I’ve been trying to figure out what is triggering these migraines. One idea is that I ate something contaminated with egg when I was at the Artichoke Festival in Monterey on the Sunday that these headaches started. Although I always ask, sometimes eating food from vendors means exposing myself to contamination. Another possibility for the migraines from Tuesday onward is the spice food I ate on Monday night. Finally, the one idea that I keep coming back to is that this is the next phase in coiling for Bartonella, and it will stop at some point as mysteriously as it started.

While I’m discussing Bartonella, I feel like I have entered a different phase. I’m still having symptoms, but the constellation and intensity seems different. These are the current symptoms that I’ve been having, though not necessarily all of them every day:

  • still losing hair, but not as much as a month ago
  • reappearance of acne on face and buttocks
  • mild to moderate kidney pain
  • bladder hesitation
  • hand pain, especially in knuckles flares for a day or two at a time
  • leg, foot and hand pain upon waking
  • left shoulder making crunching noises and very tense
  • odd nerve sensations that are localized and short-lived, in arms, legs, feet and back
  • eye pain
  • low energy

It isn’t pleasant, but other than the migraines, this stuff seems livable. I’m feeling very hopeful that I’m making progress. Even feeling hopeful seems an improvement.

Disclaimer

4 comments

  1. I have been experiencing that same feeling – the turning point you describe. It has given me some gusto to keep on my treatment path that I am on.

    I enjoy your posts very much!


    • Thank you. Good luck in your own recovery!


  2. I like to knit too. I’m not nearly as talented as you though : )


    • It took me 20 years of practice to knit the way I do now. My skills increase dramatically when I started making things from Hansi Singh’s Amigurumi Knits. Good luck with your knitting and your recovery.



Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: