Battle of the Pills: What Managing Chronic Lyme Disease Really Looks Like

I always said I’d do this one day. Post a picture of all the medicine I have, about a third of which I must take every day; a third of which are as-needed/to save me from worse things; and a third of which I take several times per week depending on symptoms. But I never did, and getting to the bottom of why is almost more of a journey than I’m prepared to write about. I still feel ashamed.

I feel ashamed that I need so many medications while the majority of people in my age bracket might take one or two, or maybe none at all.

I feel scared at the reality that if you were to take them all away from me, I would crumble, my body becoming a non-functioning mess, encompassed by disease before it slowly withered away; it’s painful to be reminded of how much I need them.

I feel resentment at myself, because a little part of me thinks that posting this only sends the message, Hey, look at all this medicine I take, I must be really bad off if I need all this medicine, doesn’t this make me seem attention-seeking, and that it will attract a more vicious crowd. Because that’s not what this is about and “sick” is not all that I am by a long-shot…

But it’s impossible to separate yourself from what is–a human being living with chronic disease–when every three hours you have to remember to pop one of these pills, “or else.”

I feel anger, and guilt, and any other number of emotions, after constantly being told, “You can’t possibly need that many pills. I don’t like taking pills because they have side effects and they might cause something else to happen; I just don’t know how you take all of that!”

Well, it must be nice to have that choice of whether or not you get to take something, because not everyone has that. I certainly don’t. Not if I want to function or be able to do anything at all, like breathe or eat or walk, on a good day; not if I want to give myself the best chance at having a “normal” life, one that will never, ever be normal anyway.

These are all of my current prescriptions. There are twenty-five of them here, that are still useful and/or necessary. These are excluding the ones I’ve taken in the past but no longer need, such as Nasonex, Ambien, Doxycycline, Sporanox, Nizoral, et cetera…

…and these are my prescriptions plus all necessary supplements and herbs that I have to buy myself. This doesn’t include the three from other rooms I wasn’t able to get, so the total comes to forty.

This, after years of dwindling them down to the ones that genuinely do something.

 

The main reason I remember wanting to do this, was specifically because I had a problem with it, and I don’t like anything holding power over me. I didn’t want to show anyone this post. Sure, when my family and friends visit, they see the eight or so bottles I have stacked on top of my bedside table. And they see me grab a bottle or two in the middle of our conversations, either because it’s time for another dose of something, or symptoms have arisen. But it’s easy to allow those very close to you to see what you go through. It’s something else entirely to disclose it to the world and expose yourself to scrutiny. But…

This is the pharmaceutical side of having myalgic encephalomyelitis, a disabling neuroimmune disease that has no cure, only symptom-based management.

This is what it’s really like having chronic, late stage Lyme disease, and bartonellosis, two potentially-fatal bacterial infections of the nervous system that may persist after months, or, in many cases, years of attempted treatment.

And this is the shame resulting from years of subtle and not-so-subtle messages from society, friends, even family members, that say, “Be quiet about your disease, lest you make the rest of us uncomfortable.”

People need to know all that these diseases can do, not just the side that makes the newspapers because someone “miraculously recovered.” Pardon me if I don’t want to be quiet about it anymore.

a rainbow at night

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6 thoughts on “Battle of the Pills: What Managing Chronic Lyme Disease Really Looks Like

  1. Hi Rainbow-
    I am a fellow ME patient, just found your blog and noticed this post. Unfortunately, I know EXACTLY how you feel! I have had ME for 20 years but was only diagnosed about a year and a half ago. I have had all kinds of concomitant diseases, infections, disorders, etc. etc. that the amount of treatments boggle the mind, and that was before I knew about ME! Now that there is finally a “unifying theory” of WTF is wrong with ME, (I am 34 and bedridden), of course the meds/supplements are ever increasing and are becoming more… interesting.
    My aunt has had chronic autoimmune diseases, etc. for as long as I have been alive, and she is always sick and has had umpteen surgeries, etc. etc. I remember as a kid watching her with all her handfulls of pills and sprays and inhalers, and thinking to myself “I NEVER want to be like that!!” And here I am. I’m working with the docs at Hunter-Hopkins and still waiting for my XMRV test from WPI, fingers crossed for ANSWERS! It is good to know that I am not alone, this disease is so incredibly isolating! I am mostly bedridden, and I used to be a competitive athlete! I have no close friends here as I moved and was leveled by a spinal injury (WTF, I was asleep in bed and turned my head and my neck broke- does the universe hate me??) so making friends is difficult when you are less active and able-bodied than a paramecium. Thank you so much for sharing your experiences! I have had my share of tick bites and tested negative for Lyme, but never was tested for any other of the many tick-borne infectious agents. Maybe I should put that on my to do list.
    Crashing now from the efforts of typing this… best wishes to you and to all of us debilitated by these unseen diseases!
    -Amy

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    1. Less active and able-bodied than a paramecium! Ahaha! That really made me laugh, thank you. ;)

      Hello Amy, I am sorry that you’ve also had to fight through these struggles. I’d like to think these things never happen without a reason, in my opinion to put us on a different path than the ones we thought we needed. I know I’ve become a completely different person through these illnesses, and though there has been a lot of bad, there’s also been a lot of good, that i have to admit, I would have never learnt any other way besides being stopped in my tracks.

      I hope you choose or have seen a LLMD, or Lyme Literate Medical Doctor, about the possibility of Lyme disease–I would suggest you click the links on the sidebar of my site and get real information about it. A negative test means absolutely nothing, I’m afraid. I tested negative at first, and still do every time a doctor tests me! Yet, I test positive through specialty labs. Lyme is a clinical diagnosis, which means NO doctor can say you don’t have it based solely on lab tests; you could be diagnosed based on the fact that you’ve had several tick bites followed by numerous symptoms. M.E. is disaster, but it was these infections–more specifically, the coinfections–that made me bedbound; I’d hate for you to leave that stone unturned when all it’d take is antibiotics to get some semblance of life back again.

      Thank you for using your valuable energy to share your thoughts with me. :)

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  2. Hello, Rainbow, it’s very nice to find your blog! I, too have CFS/FMS/chronic Lyme, etc. I’ve been “officially sick” since 1998.

    I’ve often thought about the pill issue, as well. I chose to have my youngest child, in 1994, at home, with a midwife, and when I had premature labor, we stopped it with herbs & whiskey. She came out just fine!

    But now I find myself taking so very many meds, and it sometimes seems like a dream, how I went from 100% natural to barely alive & taking so many pills.

    Periodically, we’ve gone through my list of meds and taken out everything possible, then waited for symptoms, and added them all back, one at a time. Like many with CFS, I am very reactive to meds, have side effects rarely seen, or can only tolerate a very small dose of something, so I wind up getting two small doses of similiar meds since I can’t take a normal dose of either.

    Thankfully, no more antibiotics. I did the chronic Lyme IV Rocephin for a year. It really wrecked my system, made my “leaky gut” worse, the candida worse, more time bedridden. I test negative for Lyme now, but don’t know that I trust that to always be the case.

    Anyway, just wanted to say you’re certainly not alone in taking dozens of meds, all for what seems like good reasons. But still a little part inside nagging away at me, urging me to quit whatever I can.

    Best of luck to you and heartfelt wishes for peace & acceptance.

    Ash

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    1. Hello Ash =)

      All completely understandable. I take anywhere from 1/2 to 1/16 the dose of medications because they just affect me so strongly; it’s strange how that works!

      That’s great that you got treatment! I went through the mill with antibiotics as well, but never did IV. I’m still in treatment now. I highly doubt I could ever get IV because I cannot manage to test blatantly positive. I can test positive enough and have enough symptoms for a skilled doctor to know I need treatment, but try convincing the insurance companies that…! (I can barely tolerate oral antibiotics, though, so parental therapy might do me in anyway!)

      A negative Lyme test means nothing, unfortunately. Treat until the symptoms are gone. And someone with Lyme will almost always have coinfections (ehrlichiosis, bartonellois, babesiosis, mycoplasma, etc.) that, if you ask me, are worse than the Lyme itself, not only because of what they do but because they’re so hard to show on testing. :\

      Aha, that still goes through my mind every day… And I’m still guilty of stopping a supplement here and there and then paying the consequences for it.

      Thank you for the lovely comment, hope to see you around =)

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  3. Excellent post! I don’t like the pills, either, but like you, have no choice if I want to function on some (any) level.

    I hate needing them, I hate needing a doctor, and I hate the fear that comes with the knowledge of my dependency on both.

    Periodically I get on a rant and vow that I’m just not going to take any prescriptions anymore, period. Yeah, it never takes very long to remember exactly why I’m on them ;)

    Thank you for the courage to post your experiences. Thank you for making it visual. Thank you for bringing up a topic that, as you so rightly point out, is never talked about.

    Peace.

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    1. Definitely, definitely, and.. definitely. Ha, I used to talk like that as well, but more often than not lately, I’ve been forced to stopped them because of random incidents. Both teach me very quickly just how much all those prescriptions and things need to be there. It’s bittersweet, to know that something does make a difference, but to know that you depend on it so heavily. If anything, I’d have to say I’m glad after all this time, I’ve found things that work, and no longer have to run in circles with the whole ‘I guess [insert medicine here] is helping, maybe…’

      Thank you for your thoughts. :)

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