doublechecking

I like to google the side effects of the drugs I take. I used to do this several times a day, mainly because I could never remember what they were from hour to hour. I do it a lot less now. A month ago, some not so good symptoms crept back (a whole other google rabbit hole). I went back to the doctor and I started taking liposomal artemisinin, a Chinese wormwood derivative that is effective against malaria, babesia, and Lyme (babesia is often a Lyme co-infection) The liposomal part is a fatty matrix that stabilizes the artemisinin part and helps the body absorb the artemisinin. I’m also taking a few more herbs. Cumanda, an anti-bacterial herb from the Campsiandra Angustifolia tree in the Amazon is one. Cumanda is for neuroborreliosis,  or “Lyme brain”. I’m also taking teasel root extract. That one is from Dypsacus Sylvestris, a biennial teasel plant. Teasel root extract is a cyst buster and biofilm remover. See why I had to google this shit several times a day?

I wondered which one of these herbs was causing my brain fog, liver pain, fatigue, itching, stomach problems and achy bones. As usual, there is no definitive answers. Could be the liposomal artemisinin. Some of the symptoms might be from teasel root. Others might be from cumanda. Why do I care? It doesn’t really matter, does it? Either way, I have to take them, or the alternatives, Flagyl or Mepron, or any of the pharmaceutical drugs I have also used. They have some of the same side effects, and some others that are worse.

One of the things I’ve noticed now that I am noticeably better is the herxes don’t get easier. They are not as bad as they were earlier, but again, does it matter? Sick is sick. These are mostly walking around doing things and crashing later in the day herxes, so shouldn’t I be thankful for that? I should be, but I’m not.

Oh, I forgot the last one I’m taking now, MC-Bar-2. That one is for bartonella and is a medley of herbs like Skullcap, Jamaican sarsaparilla, cordyceps, Pau d’Arco, White Willow and more. I started to read about each ingredient, but stopped after cordyceps, a fungi that the Chinese grow on caterpillars (and I’m drinking that shit? GROSS!). Also taking low-dose naloxone, the drug they use to reverse heroin overdoses. They caution me against taking any narcotic every time I refill that one, but I happily down the little white pill in hopes that it does, in fact, boost brain activity in inflamed brains like mine.

Sometimes I wonder why I keep taking all this stuff. Then Lyme comes creeping back. Once bugs get in your system, it’s hard to eradicate all of them. Once Lyme goes untreated for any length of time, no one knows if you are ever “cured”. Each bug has unique properties that make them hard to eradicate. Cysts, biofilms, protein-changing strategies, even immune modulators in tick saliva,  It’s as though the ticks and the pathogens they carry form an evil synergy  designed to fool the human immune system.

I am not making this stuff up. I wish I were sometimes. The Lyme community debates the validity of herbs vs pharmaceuticals, IV antibiotics, diet, and alternative therapies, like rifing (a highly controversial technique using electromagnetic waves, the patient holds a metal cylinder in each hand, rather like a jumpstart cable for car batteries). The herxes  I experience tell me that the herbs work, sometimes more effectively than the pharmaceuticals. Sometimes  I wonder if I’ll be on some form of maintenance herbs forever. That wouldn’t be too bad, except that the herbs taste foul. They have to be taken on an empty stomach, with a small amount of water. I look at the mixture as a tastebud wake-up call.

Why do I keep looking up both the disease and the cure? I think I have to double check to see if a) I have Lyme, and b) I am still sick with Lyme. There is a third option. I have the ridiculous theory that since I have Lyme, I will get no other diseases. The sheer lunacy of this insures that I double and triple check my symptoms, making sure that I only have Lyme. You can die from Lyme, but it is rare, if it is treated. I had to google Lyme fatality rates just now. They are low, but phrases like “drastically shortened lifespans” and “death from secondary infections” pop up too often for my taste.

There can be no other reasons than these. It’s fucked up that I still need affirmation that I do have Lyme. I don’t want it. Is that why I do it? Maybe this time I’ll see that all these symptoms are not Lyme! It’s something else, something easily cured with a few pills. And don’t you think I’d be okay with being sick by now? Apparently not. <sigh> Google will have to continue to be my support group, because I don’t particularly like support groups. It’s not that I don’t want to share information. It’s the few people who seem to use the forum as an opportunity to whine on and on about how sick they are.

Ooh, that was kind of mean. I’m sure they can’t help it, and really need the support. I like a different kind of support. I like it best when people treat me normally, teasing and harassing me as if everything is fine. It is, mostly. Except when it’s not. Then I google away, double and triple checking. Just in case.

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acceptance?

I fucking hate babesia. Babesia is one of my co-infections, a malaria-like parasite also called a “piroplasm”, whatever the fuck that is. It clouds my mind and saps my energy. I get angry and depressed for no reason. My eyes go wonky. All the normal boring crap, too, like fatigue and muscle aches and joint pain. For once, there is no anger at this flare-up. Am I being forced into accepting Lyme? Or am I worn down with fighting? I don’t think either is quite true. Acceptance, at least for me, smacks of giving up, worn down implies defeat. I’ll settle for the gentle euphemism of “learning to live” with Lyme.

My doctor shared his frustrations with his inability (another tricky word) to predict the outcomes of his Lyme patients. He felt I should be well by now. He wonders what factors we’re missing. So do I. We discuss my lifestyle. Am I drinking? Why, yes. I tried to drink twice in the last month. It didn’t work out too well the next few days. Alcohol is off the table once again. How about rest? My number one priority. I nap most days and get at least eight hours a night. I am like a four-year-old trying hard to give up naps but too sleepy to actually do it yet. What about stress? Yes, what about stress. Oh, you mean the stress of living? There is the stress of existing, which is essentially what I did for almost two years, and the stress of living. Existing is a sealed bubble of eating, sleeping, and being sick. Living is working, socializing, exercising, going out, traveling, and interacting with the world. YES IT IS STRESSFUL! I almost always feel behind the eight ball of my own life. Do one of the things and be sick. Do all of them and feel great. That uncertainty is stressful. So is deciding which one to prioritize on any given day.

I can accept that lifestyle choices and managing stress are all on me. My doctor accepts managing my protocol. What both of us struggle to accept is what we are missing. Was it the eleven surgeries I’ve had during my life? Perhaps all the antibiotics I took for acne in my late teens. The drugs I enthusiastically experimented with? Maybe something in the environment. It sure as hell isn’t my disposition. I’m fricking Pollyanna. We may never know for sure, and that in itself is a stressor.

Today marks the first day in weeks that my brain is working well. I had no idea how far down the slope I had gone. That’s the hallmark of Lyme brain (such a warm, fuzzy little description for losing your mind). It’s so subtle. I hope I can learn to recognize relapse symptoms more quickly. I don’t like the sensation of somnambulating through life. I may appear and act normal (well, as normal as normal is for me), but if you ask me to remember too much, or do something mentally challenging, like math, you’ll see the gaping holes in my speech, thought and memory.

I am ambivalent about this latest flare-up (relapse, setback, shitshow, whatever you want to call it). Overall, my symptoms are sputtering and losing steam. Either that or I am learning to live with my new normal. Is that acceptance, or is it defeat? I must confess I am satisfied with my current situation—lifeguarding, Airbnb, writing, exercising, and keeping the house together. I can control this amount of stress and chaos. I can adjust the intensity and frequency of all these activities when I need to, and I can push it, or I can take naps and rest. Of course this isn’t what I want. Like Veruca Salt I want it all and I want it now! I hate having limitations. Waaah! I know, cry me a river.

I guess acceptance means being content with the parameters of my illness. When I first typed this, I said “the illness”. I can scarcely admit even now, that it is MY illness, an illness that will be mine and belong to me until I die. This is just for now. I don’t want to be in this particular phase (which is basically the lifestyle of a five-year-old) forever. However, it is not merely existing anymore. It is a life, and not a bad one, either.

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fractious

I am scratchy and irritated these days. Is it the nature of healing? Is being constantly annoyed a sign that I’m getting better, and if so, why? You’d think I’d be all happy and excited, and I am, but I’m also fractious. I curse at all the drivers on the road, loudly and often. This isn’t new, anyone who has been in a car with me knows my predilection for cursing at other drivers. What’s new is the vehemence and frequency, the lack of control I have over my rage.

One of the symptoms of bartonella, the last co-infection to die, is irrational anger. I do have that, and I don’t like it. This fractiousness is more an angry restlessness at my life, what I’ve lost and how much farther I still have to go before I’m well. It’s also frustration at how hard it is to pick up your life again, especially when it dawns on you that you can’t go back to what isn’t anymore. So now I have to move forward, whether I want to or not. It’s scary, and I don’t like scary. The whole thing exhausts me!

It’s also getting harder to comply with the Lyme protocol. I don’t like answering questions about how I am. People look at you like your doctor is exploiting you, or he’s making up your treatment as you go along, because it’s always something. That’s Lyme disease. In a sense, he is making up my treatment as we go along. Every case is different, because every tick bite is made up of different bugs. We get misdiagnosed, under-treated (2 weeks of Doxycycline? Please, bitch!), and denied treatment by insurance companies who believe that anything over 30 days of treatment is uncalled for. No wonder I am fractious. It’s a miracle I’m not starkers. Wait…oh yeah, that symptom is mostly over.

In a way, I like the irrational anger. I am not prone to irrational anger. It’s almost fun to blow up, at least in private. I can now imagine what angry people feel all the time, the release of…what? I’m not sure I know what is being released, only that something loosens inside when venting, and the pressure backs off a little. To turn this rage on another person would be unthinkable to me, though. I contain myself to screaming at nothing. Once, however, I screamed at the dogs. I NEVER do that, even though I’d like to sometimes. That one scared me more than anything.

There is a lot of yelling going on in the world today. A lot of anger and distrust. I will not be a part of it. Listening to an angry person is a soul-sucking endeavor. A part of this fractiousness is an impatience with the world today. I don’t have the time or energy to put up with toxic people. At the same time, I have to participate in the world, such as it is today. I often wonder what we will call this new era. The Age of Hypocrisy? The Age of Rage? Whatever history dubs it, it won’t be flattering, that’s for sure. So my small part will be to keep my grumpiness to myself. It’ll be tough. Curse words will be used liberally while I talk to myself. Cleaning, music and hiking will be my anodynes. I hope. If any of you catch me bitching, slap me, please.

 

 

 

 

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lapses

Now that I am attempting to resume my interrupted life, I’m discovering a few things. Earlier in my life, I had many surgeries, mostly for having a reproductive system, but also cryosurgery to repair a torn retina and ACL replacement. After each of those surgeries, there was a period of time that I simply lost. Things were misplaced. Bills were not paid, or paid twice. Books were read and completely forgotten. Lyme brain fog is an entirely different animal. If I ever wanted to know what early Alzheimer’s, psychosis, deep depression or OCD were like, I’ve found out. Lyme mimicked all of those things at one time or another, sometimes at the same time. My brain was, quite literally, inflamed.

I’ve struggled to explain what an inflamed brain is like. At one point I felt as though I were on tranquilizers and paralytics while drunk. Other times I felt as though I were on a never ending acid trip while severely depressed. There were still other times that I felt like I was coming out from general anesthesia. None of it was pleasant. It also lasted for SEVEN MONTHS. Not every once in a while. Every. Single. Day. If you saw me during this time, count yourself as one of the few. I hid myself away as much as possible. I had hours of lucidity, the occasional rare day of partial sanity. That was almost worse, because I would realize what was happening.

These were the months of scribbling in my notebook, trying to keep track of what was happening to me. These were the months of letting Katie lead me around the grocery store, helping me make decisions and handling the payment and bags. These were the months of moving from my bed to the sofa back to bed, watching bad tv or listening to music or simply existing, like an eggplant or something.

I haven’t always lead with my brain. I don’t know why not, other than I took my brain for granted. I have never taken my looks for granted. Is there a difference in the way men and women are rewarded for having brains? Most certainly. Are some people threatened by other people’s intelligence? Definitely. What I didn’t realize is how much of my personal identity is tied up into being smart. It is probably the most valued asset I have (that, and my optimism). To lose what you perceive as your greatest strength is devastating. You can’t articulate what your fears are because your fears have come true: you’ve lost your marbles.

The nice thing about an inflamed brain is that you’re not quite aware how fried you really are. Things sort of melt away. Days drift along, one much like another, a wet, gray blanket of blankness. The minute you can think, depression and anxiety crowd out rational thought. For me, medical marijuana and bad television made the worst days if not tolerable, survivable.Schedules and goals, no matter how small, helped, too. Get up. MAKE THE BED. Make coffee (Decaf now <SIGH>). Eat something. CLEAN THE KITCHEN. Go back to bed. Sleep. Get up. Stare at the TV (it’s interesting that, like everything else from this time, I have the memory of watching but none of the details). Try to walk the dogs. I actually accomplished this almost every day, even if it was less than a quarter mile. The dogs have been stalwart companions through all of this, and  their companionship made my life immeasurably richer. Unconditional dog love is real, people!

My mental faculties are returning. I still have lapses. I talked to a patron at the pool this week. She asked me if I had read Eudora Welty. Of course I had, I knew this as a certainty. However, I could not recall one title, one plot line or character. Holes remain, and I don’t know if they will refill or simply disappear. Memory is a slippery creature at best, Most of us simply trust that what we remember is true, we don’t delve too deeply in the mechanics that make it so, nor do we give credit to memory as personality. After all, who are we if we don’t have memory and thought? I lost both temporarily, and it was like I had been erased.

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