Treatment Recap: Month 19

Month 19 is a wrap! It was kind of a mixed bag, this one. But overall, a win. I am happy to report that month 19 got me back into a solid routine. With the exception of a couch I’m still waiting for, things are nicely set up at my new, low mold apartment. I have a functional kitchen so I can meal prep again. I’m walking to and from work again, which does wonders for my body and my mind. And, frankly, having a normal routine is making it far easier to stick to my treatment protocol. (It’s the herbs! I always forget to do the herbs…)

Most days this month, I felt like my Lyme-normal self. But I definitely had some spikes of symptoms here and there. Most were, unfortunately, related to increases in muscle pain. On a couple of days, I woke with horrible wrist and ankle discomfort, only to realize that muscle tightness in my forearms and calves were causing it. And on one occasion, I woke with my trapezius muscles on both sides in full spasm and, for the first time in months, had to spend days working at it with the lacrosse ball and cane tool. In the end, I had to run off to an expensive massage appointment, which I haven’t had to do in so long. I got back to functional within about 5 days, but that knot is still there darn it.  This is really disappointing to me because, as I reported last month, I thought I’d finally kicked these muscle issues.

Incidentally, this return of these symptoms makes me question what REALLY has been helping me in recent months. You see, I was sure that my doctor putting me on this Core supplement was what fixed it. But, at the same time, my doctor had also insisted I go full dose on Boluoke because my platelet count was SUPER high and she was worried about me having a stroke or throwing a clot – yikes. Well, I ran out of Boluoke a few weeks ago and I didn’t buy more (it’s so pricey!). Sooooo I have a theory that maybe THAT was what was helping with my muscle pain, knots and spasm. I mean, Boluoke helps with blood flow by breaking down biofilm and improving free flowing circulation. The more easily your blood can move through your muscles, the more easily it can flush toxins. And if it’s not flushing and toxins build up, I’ve been told that can cause muscle knots, trigger point pain and spasm. **shrug** Just a theory. But I’m starting back up on Boluoke right away to see if I can get this back under control. And also because my platelet count was again way out of range this month and I really don’t need to have a stroke mmmmkay? Going forward, I’ll be doing 2 pills twice a day because this supplement is SO expensive! (Full dose is 3 pills twice a day.) I’ll keep you posted!

Ok, so let’s do the official month 19 symptom list:

  • Ringing ears as always (but a little quieter lately, thank goodness)
  • Wrist and ankle pain, and low-on-the-skull headaches that seems directly related to muscle tightness
  • One episode of a locked up upper back with muscle spasm and knots

Things I’ve had less of in month 19:

  • Plugged ears
  • Dizziness
  • Bad dreams

I fully believe the symptoms that went away this month are directly due to me getting out of mold. My most recent bloodwork shows:

  • This January, 2017 my TGFB-1 score is down to 3,191 from 6,013 in October 2016
  • My CD57 score is back up to 38 from 22 in the same timeframe

This all goes to show, I am on the right path. Life supports that idea too. I mean, this month I was able to ride my bike 20 miles and go bouldering in the same weekend! I went to a hip hop show and danced all night (even had a couple whiskeys). I’ve been managing a big workload at Microsoft with ease. I’ve been going out to dinners and concerts and friends’ birthdays. I’ve even managed a little dating. Oh and I spent an epic day marching in the women’s march the day after Trump’s inauguration. Amazing change from my old life, really, all this activity.

I feel at this stage like I am definitely in my second half of treatment. Probably even my last year. I’m starting to think about strategies to get myself the rest of the way to remission, and I’m making lists of herbs and supplements I’ll continue once I get there. It’s so exciting to even think about that!! I’M ALMOST THERE, GUYS!

For month 20 of treatment, I’ve signed up for a med change. I was motivated to request this for a couple of reasons. One, is I feel like I’ve been plateaued for a while. Secondly, I’ve been on my current combo of meds (Zithromax, doxycycline and Bactrim DS + rotating herbs) for moooooonths. And although I’ve been mixing up the pulsing schedule to keep them on their toes, I have started to fear that the bacteria will adapt to this combo. I don’t ever want to lose this combo, so it’s time to switch off it for a bit. Lastly, I want to deal a serious one / two punch to Bartonella, which has always been a big challenge for me. With that in mind, my doctor has agreed to switch me to a combination of Minocycline and Rifampin. Eep!

I am very nervous about this because both of these meds have been very difficult for me in the past. In fact, they were some of my first meds I was ever on. On Minocycline, I had the worst herx of my life on day 3 of treatment. Pretty standard stuff for your first Lyme drug, but it sure scared me! However, after 19 months of treatment and very little herxing these days, I don’t expect this to happen again. What scares me even now, though, is that I had pretty severe intracranial hypertension that resulted in REALLY blurry vision the whole time I was on minocycline. My doctor always insisted that this was a herxheimer reaction, but it always seemed like a side effect to me, since it never got better even after the rate of bacteria die off should’ve leveled out. If it happens again this far into recovery, I am pretty sure we’ll know it’s a side effect. But gosh I hope she’s right that it was a herx, because that would mean I’ll fare much better this time around with so far fewer bugs left to kill!

When I started rifampin in month 2, I experienced herxing with bartonella-specific symptoms. Makes sense, it was so early in treatment. Even if this happens again, I know it’ll pass. Herxes mean bugs are dying! So as long as they aren’t too severe, I am DOWN for a good herx. What troubles me more about rifampin is that when I was on it again in month 8, I felt very depressed and fatigued, which I suspected was caused by rifampin-induced hypothyroidism (the med disrupts the speed at which my thyroid meds are absorbed, making it tough to stay in normal ranges). I also remember having my period almost constantly on rifampin, since it screws up my birth control, and I am always more symptomatic when I’m on my period. Plus it just stinks to always be bleeding, right?? And I fully expect that those things will happen again this time around.

So yeah. Lots of reasons to be nervous. But I just keep reminding myself that I am sooooo much stronger now than I was a year and a half or even a year ago. And even if I only stay on these meds a short while, it’s likely to do me some good. I’ve got my detox supplies ready. I am starting both drugs at pediatric doses and working my way up slow.  Fingers crossed, I’m ready! And I’m hopeful these big guns will give me a BIG step toward a very real and lasting remission. Onward!

Happy healing everyone.

-k

How am I treating? It takes whole-body healing. Here are my areas of focus:

  1. For a second month now, I have been using 1 scoop of Cholestyramine twice a day to deal with mold exposure from my ill-fated home purchase in October.
  2. Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Barton Ella. (In month 18, my meds were: doxycycline, Zithromax, Bactrim pulsed every other day + a-bart and a-Tula herbs daily.)
  3. I follow a dairy/egg/gluten/sugar/alcohol-free diet. I eat paleo type meals for my “core” meals, but I do also eat things like rice, beans, tortilla chips, tacos, thai food and the occasional vegan / gluten free pizza when I’m dining out with friends.
  4. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, I let go of a romantic partnership that wasn’t supporting my healing, and I made a strong investment in a positive social network (online and off).
  5. In month 3, I did LymeStop in Idaho in addition to my antibiotic therapy. while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later. I did not take any of the LymeStop supplements.
  6. In January 2016, I had my 23andMe results analyzed by Bob Miller. And although  I discontinued his supplements recently, I had been on them for the entire year of 2016.
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Lyme, Love and Loss: Shifting Tides with Self Prioritization

NOTE: This was written in November, 2015. I’ve found it now, January 2017 in the drafts folder and reading it tugged at my heartstrings. Fighting Lyme was at one point, SO HARD and took so much WORK. My heart was SO broken when my actions of self care were interpreted negatively. The man I’d loved intensely for over 5 years left me over his interpretation of the change in my diet, routines and needs (but “not because of Lyme disease” he swore).

I saw him recently at a hip hop show. With him several paces behind me, I danced all night, I sang my heart out, I drank whiskey even. And I wonder if seeing me in a very different health state than he’d left me in, if he regretted at all the package he’d wrapped me up in back then. If maybe he reconsidered those permanent labels he affixed to my temporary status, for I am without a doubt leading a different life today.

In the end, it doesn’t really matter. My life is beautiful, and healthy, and wellness is FAR less work than it used to be. And the right kind of partner will find himself at home, regardless of my health status, in my heart of hearts… the one my previous partner just couldn’t see.

Regaining your health when you have Lyme disease is hard. And not just financially, emotionally and physically hard (though, those are very true, and all too heavy), for the purposes of this chat, I mostly mean that day to day, the pursuit of wellness is a lot of work.

I prepare all my meals with healthy foods from scratch.

I juice vegetables fresh daily.

I take walks to keep my lymphatic system moving.

I make deliberate time for meditation and cultivation of calm.

I don’t sleep well. So I try to sleep more.

I devote more time to winding down at the end of the day.

I take detox baths.

I sort pills. I sort pills. And I sort more pills.

I visit the pharmacy. Often.

I carve out deliberate “do nothing” hours or even days for restoration after long work days, big events, evenings out or taxing travel.

I arrange my schedule and space things out so as not to “over do it”.

I go to my Lyme doctor appointments.

I go to my primary care doctor appointments.

I go to cognitive behavioral therapy appointments.

I go to couples therapy appointments.

I go to lymphatic drainage appointments.

I even go to chiropractic and PT appointments.

This list is a LOT of work. When I was first diagnosed, and getting used to this new routine, it felt like a full time job. I mourned the losses brought on by all this additional responsibility and heavy necessity. Even still, sometimes, this load can feel downright oppressive. That’s a fair and very real reaction to my daily life with Lyme.

But most of the time, these days, I view these as necessary investments in my wellness. These are gifts I am giving to myself, to my body, to my mind, my spirit and my immune system. And they’re working. I can feel the results of these activities and I’m getting healthier month after month. Importantly too, I can feel the results of skimping on them whenever I don’t make these pursuits a priority.

Making this much space for me in my own life… it’s not easy. Mostly what’s hard about it is that it means saying no a lot more than I used to. No, I can’t go to the holiday Christmas party after working a 10-hour day. No, I can’t make it to that meeting across town at 7am after I worked till 6 the previous evening. No, I can’t go to that birthday party AND my family’s Christmas party all in the same day. No, I’m not strong enough to withstand a day of international travel, a day of birthday celebrations, two 12-hour work days and then still have the bandwidth to be a graceful, capable full time caregiver to a loved one in need for the next several days.

And that SUCKS. It feels awful. In my worst moments, I feel like I’m failing all of the time at everything. But in my better, truer moments, I know I’m doing my very best. And it’s good enough. It has to be good enough… because it’s all I have. I’m giving everything I have. A lot of that goes to myself, because it has to for now. A lot of it goes to my job, because it’s funding the whole treatment effort (not to mention my life). And, with as much as I have leftover, I still give to those close to me.

I know that what I have leftover to give to others… it’s not always enough for them. And that’s ok for them to believe, to say (with kindness), even for them to be upset about. I’m limited and I know that. I can’t meet everyone’s needs as a daughter… as a friend… as a partner. Not all of the time. And as hard as that fact is to accept, I do accept it.

What’s painful for me is the interpretation some people make of my inability to meet their needs. For the first time in my 32 years, as I set these important routines and self-care goals in place, I’ve heard accusations of being “selfish” and “controlling”. Those words are shocking. Those words break my heart. They break my heart because those words describe actions of ill intent and ugliness. They accuse me of demeaning the other… of not seeing their value and their worth. Those words accuse me of just not wanting to give them everything they need and desire. No. That is not what is happening in me. I don’t relate to those words at all. And, honestly, I find it so sad and disappointing, even wounding, that anyone who knows me well could interpret my limitations… my diligence in this quest to get well… in such a dark light.

In those moments, I remind myself that what someone else thinks of me is, at the end of the day, none of my business. If they’ve been given ample opportunity to see the heart of me, and instead see only their interpretation of my intent, that’s their choice to make. I have to respect that that’s their choice.

opinion

I am really pretty fortunate. The majority of people in my life have responded to my struggle positively, with curiosity and with empathy. I’ve formed some really strong friendships with the people who’ve made those efforts. And frankly, the people who went the other way… well I guess I’m probably better off without them. Or, I will be as soon as I get over my broken heart.