The Choice of Someone With Progressive Disease to Stop Treatment, Part 1 of 2: Wrestling With the Universe

[ estimated reading time: 4 mins 20 secs ]
I did not arrive at my decision lightly. I experienced… Ah, I experienced a lot. The Caring Connections organization put together a great example list of the emotions involved in living with serious illness:

Emotional changes that you may experience include:

  • Fear – about what will happen as your illness progresses, or about the future for your loved ones
  • Anger – about past treatment choices, about the change in diagnosis
  • Grief – about the losses that you have had and those to come
  • Anxiety – about making new decisions and facing new realities
  • Disbelief – about the changes that will be taking place
  • Relief – about ending difficult treatments and setting new goals for care”

They also have a list of various myths, truths, and things to remember, such as:

Myth: Accepting that this illness cannot be cured means that “nothing more can be done.”
Truth: When the focus shifts from cure to care, a great deal can be done to relieve physical pain and emotional suffering, and to ensure a good quality of life.
Remember: Have conversations with your loved ones about what you do and do not want. Designate a healthcare agent to speak for you in the event that you can no longer speak for yourself.”

I can talk about this more clearly and rationally now, after several weeks of living with my decision, but like I wrote earlier: It was anything but easy. (This entire post is quite embarrassing to write, actually.) I experienced extreme guilt for not wanting to get treatment.

Since I don’t believe in coincidence, it was difficult to figure out whether I’d learnt of the MTHFR gene mutation to get it treated so I could get back on Lyme treatment (but I thought of this more out of habit than any true desire or intuition), or to just be more aware of how I could help my body… I was living too much in the trying to find the Lesson and not enough in the living the Experience (which ultimately gives you the lesson). I heard something like that during Oprah’s Super Soul Sunday several weeks ago.

I knew I’d lose my mind if I tried to do “the Lyme fight” again.

I’m 99% sure I’d lose my mind if I fought my own body at all, at this point, to be honest.

So I didn’t know what I was “supposed” to do. I knew what I wanted, but I felt guilty for wanting it. Probably as a remnant from my more religious upbringing, I actually felt like God would be angry with me for my decision. I automatically felt like choosing to live without fighting disease, would be choosing to die, so how could The Universe possibly support me in that? I felt like I couldn’t trust myself anymore.

But that same day, the guest on Super Soul Sunday started talking about God’s Love, and it really brought me back to my core beliefs… The Universe bringing me back to Itself, surely.

It reminded me that I am not being judged. That God–whether a He, She, It, The Universe, whatever that Source may be–does NOT hold anger or negativity toward me for my decisions, that those feelings come from my interpretation and not reality. It reminded me that I could NEVER be a disappointment, and the most important of all: That there is nothing but Love and Acceptance for me; Love and Acceptance for What Is; Love and Acceptance for what I decide…

As a recovering codependent, I had to realize The God Force I believe in is not like so many humans I have known, who bestow their version of love based upon how much what I do agrees with their opinion.

Probably the craziest part of it, was that in my darkest, anxiety-ridden moment, I felt like if I made the “wrong” decision then all my suffering would be my fault and I would deserve to be punished and abandoned, for not being in alignment with “God’s will.”

Oh, thank you, gene abnormality, for helping me bring all of this to the surface and release it. Those old brainwashed ways of thinking are NOT who I am!

I was so focused on What if I make the wrong decision? that I wasn’t able to stop panicking long enough to figure out from where my suffering was arising. And I was so absorbed in assuming my thoughts were a form of escapism–I must be running from my fear of going to a new doctor, I must be terrified of the new treatments not working, I must be running from the reality of another health problem…right?–that I completely neglected the idea that turned out to be the real problem:

I was actually running from the fear of not treating, and what would happen when I did that.

Treating felt too wrong to possibly be right. But choosing to forego it is something I’ve never done. I can see now, in hindsight, this discovery WAS the lesson in itself. It wasn’t a lesson in what to do. It was a lesson in how to Not do, something I’ve never known how to.. well, do.

I had no idea how much courage it takes to let go. To be continued…

a rainbow at night


Alright, I caved.

I couldn’t take it anymore and started my Zoloft…even though it interacts with two things I take. I opted to just take it as far away from those as possible, and since I’m only on 12.5mg, it couldn’t be that bad, right?

Best decision I ever made.

And something interesting to share about my fatigue: It’s incredibly reduced! My wonky brain chemistry must have been contributing heavily to it, because after about five days I noticed I had a lot more energy. Antidepressants are actually recommended for “chronic fatigue,” and now I understand why! I thought fatigue was only a symptom of depression-related brain chemistry, but it would seem it’s just a symptom of off-kilter serotonin levels in general. I’m pretty sure I learned that in my degree somewhere, but had forgotten.

My OCD is a lot better. The incessant thoughts are easing, and I no longer need to keep hand lotion around from my constant soap use.

I take Flagyl Thursday thru Sunday, and usually by Saturday I am exhausted. This Saturday? I exercised. And by exercise I mean my usual stretching routine that I used to do for Fibromyalgia treatment. I got through it all! And the next day I stretched again, but at a reduced level. Today I took a break from it. I’ll see how I feel tomorrow. But I’m in shock that I was able to do that! It’s a very good sign. I’m elated that after five months in Lyme/Mycoplasma treatment, I am starting to get back to things I used to be able to do. I’ve been incredibly blessed to have my family’s support, emotionally and financially, but all I want is to be able to take care of myself again. At the rate I’m going, I think that will happen.

Neurologically, I’ve had a lot more numbness in my limbs. This is healing, right? I get the “hot foot” sensations daily, my feet itch like mad (neuropathy), and.. I remember an instance last week where a sharp, stabbing sensation went through my right leg to the bottom of my foot, and my leg immediately went numb. When the neuropathy was progressing, things got worse, and in new places; this is more akin to old problems flaring up with their last dying effort, so again, here’s hoping this is part of the healing process.

Headache wise, I’ve had what acts like a tension headache for about four days, now. It makes my teeth hurt. I say “acts like” because I never get tension headaches, and I’m not entirely sure if this is one, but based upon descriptions I’ve read… Then again I’ve also heard people describe Lyme headaches like this, so who knows. It could even be the Zoloft or it may be as simple as ibuprofen withdrawal after taking it for several months. Whatever the cause, hopefully it’ll go away, soon. It’s the least of my concerns!

a rainbow at night

Long overdue update, oops!

I want to say to my future self, when I look back at my health blog and notice this huge gap of no symptom charting: I AM SO SORRY. But I will do my best to recap the most important parts!

The last real post I made was of my new accomplishment of cooking myself breakfast, and taking a bath in the middle of the day. While I haven’t been cooking completely on my own, I have been helping with all my meal preparations. I have also taken a few half-baths during the day (and by that I mean, I often split it up into parts, since a full bath is too much expensure at once).

When I made that post, I made note to mention my improvement was mostly medication-induced, as I was nursing a headache… Little did I know I was in the beginnings of another one of those “two weeks of headaches” spells. It was exhausting having to be so medicated just to be able to tolerate the pain, but I had my last one a week ago, and haven’t had one since. There were all sorts of them! Some felt like slight migraines but they weren’t, it was just.. nerve irritation, much like what was happening to me before I ended up in the hospital in February, with all sorts of cranial nerve involvement.

On July 2nd (Saturday), I made a very brief private entry describring having a bad day:

Today has been a bad day. i’ve had momens where I thought I might just pass out while laying down. It started yesterday I guess, when I had one of those “episodes” …

During the two-week-headache-spell I had a lot of nerve inflammation. All neuropathies were flaring terribly, and I even had one “episode” so bad that I once again started shaking, which also hadn’t happened since back in February. I lived off of ibuprofen. It was a truly rough two weeks, which should explain my lack of updates! Simultaneously (and perhaps the cause), my so-called “vanishing” Lyme flare decided to show up for a rude visit (I jokingly say it was making up for June’s middle-of-the-month flare being so mild). The headache was included, yes, but with it I also had worse dystonia, nerve pain that (as I think I’ve been mentioning for several flares now) affected mostly my arms, more numbness in my face and on top of my head, and very much increased weakness. Of particular note is that the numbness that’s been happening with them feels more like a pinched nerve, but doesn’t actually appear to be one. Late night on June 29th, I privately wrote, “Nothing too significant to report, but for the past hour or so I’ve had increasing numbness in my left arm.” And then it began…

Well my Lyme flare seems to have started again, similarly, with more feelings of a pinched nerve in my arms. I am also experiencing leg weakness, facial grimacing, and dystonia. I haven’t walked for two days due to some combination of muscle pain and shin pain, in combination with the weakness. I’m continuously told the shin pain is bartonella, but is it?

Back in the same note I wrote on the 2nd (Saturday), I also mentioned that the muscles in my right leg were hurting… And I can’t help but realize that the same thing has been happening to me, again, for the past two days. I’ve noticed a strange pattern where every Friday and Saturday are bad days for me, for probably the past five weeks. This weekend wasn’t any exception…except for that I precipitated it and therefore took to rest, which definitely helped me get through it easier, lest I wouldn’t be typing right now! I’m not positive, but I think this weekly pattern might be bartonella related… I recently found out I most likely have two strains of bartonella, and possible ehrlichiosis or rickettsia, but more on that later.

On the 14th, I wrote of having a very unstable gait (the last day I walked, as of right now) and coughing, with several moments of spontaneous exhaustion. I also mentioned my arms getting weaker (a lot in part with me overdoing it on Wednesday, though), and that’s when the pinched nerve feeling began. I’ve also been very thirsty again, something akin to what happened to me back here; I also had the leg pain with that Lyme flare, so maybe it’s just a strange new Lyme symptom?

Soon, I’d like to make a post–perhaps a sticky post to tag to the top of my blog–as a reference for all information related to human bartonellosis. I think 75% of my search referrals are from people searching for information about this infection and its chronic symptoms. And having personal experience with it, I may as well compile what I know about it, for those who need it.

Next I shall write about the exciting results I got from my IGeneX testing!
a rainbow at night

Lyme Flare Recap and a Small Rant About Diseases “Existing”

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise, I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!

Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

Anxiety at night: Herxing with Rifampin and Zithro

Well. I have to start taking my Topamax before my night dose of Rifampin, now. For the past two months I’ve taken it two hours after the Rifampin, before I go to bed. It helps me relax in addition to keeping away Migraines, so it seemed like a win-win. But (and this is nothing new) the anxiety I get at night, about an hour or two after the Rifampin, is getting unbearable! Several times I’ve been too scared to take the Topamax, for any number of illogical and plainly dumb reasons. One night I took it anyway just to prove to my brain that nothing was going to happen, which was fine. But I can’t go through that stress every single night!

I wasn’t sure why the night dose affects me this way while the day dose doesn’t, but after some thought I figure it must be because I take the first dose in the morning, after 12 hours of nothing. The night dose I take five hours after the Zithromax, so the potent combination must be what’s causing the worse herxing at night. I also have dystonia at night, worse than the day; it’s usually brief, but it almost always happens.

Today, and starting last night, I’ve had the left foot heat sensations. I’ve had no appetite and been experiencing stabbing pains in my torso–chest, stomach, intestines, just everywhere. Ibuprofen was a huge help so I can only assume inflammation, as per usual. Also, the left side of my face is exhibiting worser symptoms (esp. the muscles of my left eye), and I made a note yesterday that for the past three-to-four days, I’ve had worser numbness. I’m unsure if I mentioned it yesterday…

Despite this, I did have a few good moments today. I danced a little after the ibuprofen went to work. I took a bath and washed my own hair, even used the hairdryer. And finally by tonight, I’ve gained an appetite back. I’m still feverless, exhibiting that strange “stuck at 98.9” thing that happened a couple of.. months?.. ago.

This is off topic, but since I mentioned mycoplasma in my last entry… I’m pretty sure Rifampin also treats that? I know it treats c. pneumoniae, and some forms of the mycoplasma group, so I hope that it treats M. pneumoniae as well! That would be great, since Zithro definitely treats myco; I’m on possibly the most perfect combination of antibiotics for my infections–lyme disease, bartonella, mycoplasma–that there is. I have such a wonderful LLMD, and thank God for helping me get this far.

a rainbow at night