sequestered

There’s a difference between quarantined and sequestered. Quarantined means YOU have the illness. Sequestered means I DON’T WANT THE ILLNESS. I’m back to where I was three years ago: stuck at home being sick. Bartonella, one of my co-infections, is the bane of my existence. Borrelia burdorferi and babesia have been contained (not eradicated, contained). Not Bartonella. It continues to rage inside of me, hiding and dodging despite our best efforts. So I’ve started a new medication, Rifabutin, a powerful antibiotic used in AIDS patients as a prophylactic against mycobacterium avium complex (whatever that is, it’s probably deadly if you have AIDS). In Lyme patients with Bartonella, Rifabutin has proven useful in recalcitrant patients like myself. The bacteria hides in white blood cells, where other medications can’t reach. Rifampin kills the bacteria, and also the host white blood cells. This means that my WBC count is going to drop. A lot.

Because I’ve taken quite a few drugs with nasty side effects (mainly related to the liver), I wasn’t worried at first. I texted Katie and bitched about the cost ($484!). When I got home, Katie read the drug warnings on the package. She didn’t like the sound of this one. If I get sick, I could get very, very sick, and if the illness is serious enough, possibly die. My doctor warned me of these things, but I glossed over the warnings, because what choice do I have, really? I can feel shitty most of the time or I can take another shot at feeling better most of the time.

In my last blog I wrote about Bartonella’s nasty symptoms, and they have not improved. I feel disconnected from my own reality, as if I am watching myself exist. Panna Naturopatich describes chronic Bartonella very well (http://www.pannaturopathic.com/bartonella-treatment), along with treatment options. Feeling disconnected from one’s own life is a strange, disturbing feeling, and I want it gone. That’s why I’m willing to take Rifabutin. That’s why I’m sequestering myself at home for the next 4-6 weeks. I cannot risk getting sick.

Katie strongly urged (okay, insisted) that I sequester myself at home until we know just how low my WBC will drop. She’s right, as are the two medical professionals I know who also advised me to be very careful when I explained my situation. I’ll get a blood test two weeks after starting Rifabutin. I’m a little over one week in. Friday was my last day of work for a month, and I’ve stocked up on groceries.

I like the word ‘sequester’ as opposed to cloister, cut off, insulate, withdraw, close off, or segregate. I don’t really mind hide, or the more philosophical enisle, or island. Secrete just sounds wrong, and draw back is too close to the truth. I have drawn back, for both my mental and physical health. I’m cocooning, without the promise of emerging better and more beautiful, or the coziness and growth cocooning implies.

What will I do with myself? I guess it depends on how bad I feel. The first week was rough, as it often is when I start a new medication. My body is worn out from fighting recurring flareups and die-offs. If earlier herxes are my guide, there will be many days where I won’t feel like doing much more than playing games on my phone and lying in bed. When I feel okay,  I’ve got yard work, reading, writing, binge-watching TV, cooking, and cleaning. I can walk the dogs in the park if I stay away from people. I just can’t go to public places where lots of people congregate. That means no Rec center,  no movies, no going out to eat, no library, no grocery store, no writing classes, and no volunteering. I’m sure some people would shudder at the thought of not being able to go out. I’m not one of them. I’ve long joked I would make a great astronaut, because I have no problem being confined to small spaces for a long time, as long as I have things to do.

This is one of those times where I have to view Lyme as a full time job. I am making the transition into accepting that Lyme is my full time job now, its shitty, erratic hours and insane demands on my life crowding out everything else. Once I look at my voluntary sequestration that way, things become much, much easier. This is not, once again, a ‘poor me’ post. This is a reckoning with a new drug and the possibility that Lyme might be with me forever. I am learning to deal with it, in much the same way I deal with any setback; imperfectly and less than enthusiastically, I will inch forward until it’s over.

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mental

I’ve been thinking about suicide a lot lately. Wait, don’t panic! Not in a real way, but in a Lyme way. There is a difference, and it is significant. Psychiatric problems from Lyme are well-documented and common. After all, there are, quite literally, bugs in your brain, wreaking havoc. So when I say I think about suicide, there is a layer once removed from actual thought of suicide. My recent psych problems dovetailed with an article I recently read about a family who has five sons suffering from Lyme. One took his own life. He was twenty-four. https://www.lymedisease.org/touched-by-lyme-when-the-perfect-storm-is-too-much-to-bear/

For me, the jags of crying, depression, anxiety and suicidal thoughts are  unwanted  surges in an unwell brain. The trick is to hold on and wait until the storm subsides. You might ask how I know this to be true. I’m not sure why. It could be a product of age and a lifetime of introspection. If I were much younger, or not used to examining my thoughts, I might think this was a real crisis. I’m not saying I haven’t felt depression and anxiety as true emotions. I have. The nature of Lyme neurological problems gives these feelings a different flavor.

When the surge subsides, it is though it never happened. There is no residual fallout, nor is there guilt, or lingering thoughts, another reason I know they’re not real. The inflammation Lyme causes acts as an electrical probe that homes in on the parts of my brain where emotion lives. It is more annoying than anything. A thought will pop up, unwanted and unconnected to much of anything (unless I’ve been on Twitter reading about the GOP and Trump), and lodge itself in the forefront of my brain for a few hours or a few days. I will cry at nothing. I might watch a cheesy movie, or watch videos like people reuniting with their dogs to help release the tears. It is a physical, not emotional reaction when Lyme is the cause, and I feel relief after crying. The depression/anxiety part is exceptionally frustrating. In the past, pre-Lyme, I sometimes got mildly depressed, and very, very occasionally experienced anxiety (like before my graduate school lecture, duh) but never in an irrational way. If you suffer from either of these regularly, wow. You have my deepest sympathies. My anxieties drift into obsessions, like buying lottery tickets or never leaving the kitchen dirty overnight. They don’t make sense, but it’s easy enough to pick up tickets or clean up.

I have never, not once in my life, thought seriously about suicide. I would go so far as to say I didn’t understand why anyone would want to take their life, until one cold February day two years ago when I was extremely sick, and had been for over a year. I realized I could easily reach a point where I wouldn’t want to go on if I knew I would never feel better than I did that day. This newer phase of neurological problems is more abstract, less direct and real. I’m not explaining myself well here. All I can say is that the flashes come and go quickly, and they don’t touch me deep inside. I’ve moved from being upset about them to being intrigued. What is happening in my Lyme brain? I’d love to have an MRI while I’m in the grip of what I call my Lyme neuroses/psychoses.

This is NOT a cry for help or a ‘poor me’ moment. It is an attempt to explain one of the more bizarre Lyme disease symptoms. I’m not embarrassed to talk about this the way I would be if I didn’t have Lyme (and that’s a whole other topic, why most of us would rather talk about our sex lives or money than admit to suicidal thoughts, anxiety and depression). It’s one of the dozens of strange things that Lyme does to my body, like my aching teeth and liver today. I didn’t recognize what was happening at first. Once I did, he imagery that came to my mind is from an old Star Trek movie, the one where Khan puts a worm in Chekhov’s ear. https://youtu.be/3i42Smtbmeg

Each reaction in my body becomes something I deal with. My coping skills have moved into gold-medal territory by now, honed by injuries, endometriosis, surgeries, and now Lyme. As for these particular symptoms? Marijuana blunts them, housework makes them bearable, and sleep removes them entirely. I cook, or watch stupid TV, or rage against Trump and the GOP on Twitter. I drag myself to work and forget about Lyme for a short while. I go out with friends if I can, and listen to their lives. I walk the dogs. I write obsessively and badly. One day I’ll wake up and my brain will have regained its’ equilibrium and clarity and I’ll get back to fully living for a while until the next cycle comes. Then I will go back to my mad coping skills until the storm passes once again.

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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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symptoms

I don’t write much about the symptoms of Lyme. For one, it’s a rather long list. For another, who really cares, except for me, who experiences them? But I’ve been thinking about symptoms lately, because now that I’m getting out more, people ask me what my symptoms were. I kind of hem and haw and tell a light anecdote to give them the picture. Here’s the big problem: there are over one hundred symptoms for Lyme (http://www.anapsid.org/lyme/symptoms/ , http://www.lymenet.org/BurrGuide200810.pdf). Lyme mimics fibromyalgia, MS, ALS, Parkinson’s, Alzheimer’s and up to 350 more diseases. To try and standardize the list for all patients is impossible. I never had much problem with arthritis-like swelling and pain, where others are wheelchair bound. Every Lyme patient has their own peculiar set of symptoms.

Taken one by one, most of the symptoms aren’t that bad. Combined, though, and suffered day after day after day, they wear on you. The final insult comes when you start treatment. You get sicker! Woo-hoo! Nothing like endotoxins and side effects to ice the cake on sickness. I’m not sharing this for pity. I don’t want to hear “I’m so sorry you’ve been so sick”. Well, maybe I do, sometimes. What I want is to help anyone avoid Lyme in the first place. I want people to understand what Lyme disease can become if not caught early. The physical, emotional and financial toll is too high stand by idly.

I keep journals. I have kept them off and on for the past twenty years, but I’ve been fairly consistent post-divorce. There is a row of notebooks in my office, each one filled out from the top of the first page to the bottom of the last page, front and back, no paragraphs or indents. Just words. The ones from living with Lyme this past fifteen months give me a glimpse into my sickness, in case I want to forget.

Okay, here is one from  December 8. It was crisp outside and my one goal for the day was to walk the dogs. I had returned from New York where I was diagnosed with mid-stage Lyme disease: borrelia burgdorferi, babesia , and bartonella. I had fifty-six symptoms checked off. One of the worst was an abnormally slow heart rate. That morning I shuffled one quarter-mile. I have a pulse rate app. I did it three times during the walk. 42. 88. 44. I talked to myself, told myself I could do this. Every bone and muscle in my body ached, I had foggy spots in the middle of each eye. My teeth hurt, as did my head. I had to stop twice because of dizziness. I made that damn walk. I went to bed and slept. I woke up and took my meds (I’ll write a blog about that soon…it’ll blow your mind). I watched the Hallmark Channel (still trying to figure that one out!). Cried. Ate. Went back to bed. And that was all the entry said for that day. I’ve paraphrased here, because much of my journal writing is a stream-of-consciousness blast of cheerleading and venting.

You get the picture. Telling this out loud, in public, is almost as terrifying as taking off all my clothes in public. Why do I balk at talking about this? Was it my parents’ no nonsense midwestern sensibility? My own bias towards sickness and sick people? What? I can’t figure this one out. Maybe it has to do with whining? I am NOT a whiner (I’m a bitcher, but that is a whole different skill set). Or the ‘poor me’ syndrome. Awful. This brings me to play time. Now that I’m getting better, I am eager to date, to play pickleball, see friends, get out and do something. Well, what should happen but guilt. Big chunks of shoulds and have tos weighed me down. I should be working if I feel better. I have to get this yard in shape and take care of business. I bitched about this problem (curse words were involved…see the difference from whining?)  to my therapist. I’m pretty sure he answered with a question. “Why should you feel bad? Don’t you deserve to have some fun?” W.T.F. Have fun? Was he mad?

I felt a tremendous sense of guilt about being sick for so long. After all, if you are sick, you are not being productive. And not being productive is a sin. A mother’s definition, America’s definition, and mine, apparently. So. I am working on this notion that it is okay to have happiness after a long illness. I don’t have to plunge into everything, all at once. I played pickleball this morning. It made me happy. I saw old friends and felt the heady rush of playing a game. The rest of the day has been better. I’m actually working harder in between bouts of playing. It could be that play is vitally important to recovering health. Play gives me a truer taste of life as it was. Life has been lots and lots of watery gruel the past sixteen months. I’m ready for spice and comfort food.

 

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