Dear online dater reading my blog…

14359009_554460964737455_2791363468186751450_nHi! Hi there. I see you. Welcome to my blog. I’m actually glad you’re here. And don’t worry, I probably searched your name too by now. Think I got anything juicy?? You certainly did. You see… I’ve been on this CRAZY health journey the last couple of years, and this blog has all the dirty details.

Some of them might be a bit scary to you. That’s ok. They freaked me out too at first! Some may even be deal breakers for you, and that’s alright as well. I can’t change most of what’s difficult about life with Lyme. I have to accept it. But you don’t! And that’s totally fair.

What I CAN tell you is this… the person you’re thinking about going on this date with? She’s a waaaaaaaaaay better human than you’d have found a couple of years ago, pre-illness. It turns out there’s some nice perks that come with a life that includes periods of disability, like:

  • An intense appreciation for pretty much everything
  • Big smiles, excited applause kind of reactions to all things good
  • An eager appetite for adventure
  • A greater ability to let the small stuff go
  • A complete willingness to look like a dork
  • A tendency to laugh through even the shittiest, most painful moments of life because the gift of being human is abundantly clear to me even when being human is pretty much the worst
  • Hippie remedies for all your colds, aches and pains
  • A lot of self-awareness and a practiced ability to communicate even through difficult things
  • Emotional openness
  • Vulnerability
  • A dedication to self-work and an ability to see feedback as an opportunity to grow
  • Practiced good mental health habits
  • Tips on which dairy/gluten/egg/refined sugar free foods are actually totally edible

As you read through the details (as many as you like), please know that I share these entries mostly so that I can help other patients get as well as I have. Lyme is tricky business, and it takes a village to effectively treat. This is my contribution to other patients. But, by being so public, it also means fellas like you have this information waaay before I’d ordinarily disclose it. It’s a tradeoff I’m willing to make.

But reading this blog, you’re going to learn about some of the drawbacks of dating me probably before you’ve ever even dated me! How weird is that?? I will say you’re coming at a good time. I’m about 90% well right now. You never know what the future holds, but I’m hopeful the worst days are over. That said, even when I am doing well, my life isn’t exactly “normal”. A few things about me that have been issues for fellows in the past include:

  • I don’t drink. (This may change to moderate drinking someday.)
  • I don’t feel I can safely have biological kids. I’d be a great step mom, adoptive mom or doggy mom though.
  • I prioritize a clean diet, my pill schedule, my doc appointments and rest.
  • I have to stay out of moldy buildings and away from objects that’ve been stored inside them.
  • I practice only safe sex to protect us both from sharing infections (let’s talk about the risks).
  • If you start showing signs of Lyme disease, I will bug you to get tested.

I think that’s it! Obviously there’s a ton about me that has nothing to do with Lyme disease. If we do end up hanging out, I’ll chat your ear off about art, music, fun fitness pursuits, bicycling, travel, politics, feminism, Christmas, my dogs… tacos… the like. I don’t know.  They say that fortune favors the bold, and while I wouldn’t have chosen this path for myself, fortune has certainly met me here anyway. I think the same will be true for anyone who chooses to walk this path alongside me. But hey. Let’s have a date first, huh??

Cheers,

Karla

Treatment Recap: Months 20 and 21

Time is FLYING! I guess I forgot to do a treatment recap for month 20?? Let’s start there.

As you can see by the indulgent emotional post, I had a bit of a hard time in month 20 in two very specific ways. You see, my doc had me start a new drug regimen including minocycline and rifampin.

Minocycline has, in the past, caused me pretty bad intracranial hypertension. And it did indeed cause that again, but to a much lesser degree than it did before. I experienced a much higher frequency of plugged ears is all. On the one hand, this is kind of amazing because in my 2nd month of treatment, only 50mg of minocycline 2x a day sent me reeling with this symptom. And now, I am tolerating 150mg 2x a day just fine. HOWEVER (and it’s a big however) I am only taking meds 3x a week. So the jury is still out for me on whether this is a herx reaction caused by die off of bacteria in my brain, or just a nasty side effect of this medication. Overall, this was very tolerable and not a big deal. It just made it a little hard for me to tell when I am around mold, since plugged ears is my usual tell.

What was harder was being on rifampin. Within just a few days of starting up a pretty low dose, I became extremely tired and SAD. And I stayed that way pretty much the whole month. I thought for sure this must be some kind of bartonella herx, but my bloodwork revealed that it was actually my liver having a hard time processing this medication. So when I went in for my appointment, my Lyme doc had me stop that one right away. No more rifampin or rifabutin for me. My body just can’t metabolize them.

Official symptom list for month 20:

  • Fatigue
  • Depression
  • Plugged ears (on mino days)
  • Ringing ears (no change there)

One thing that got much better in month 20 was my muscle spasms and pain. I fully attribute this to going back on 4 pills a day of boluoke, just as I’d suspected in my month 19 recap. If you’re experiencing muscle pain and spasm, I fully endorse this as a good option for relief.

As I started month 21 of treatment, I was feeling pretty good. My doctor had me discontinue to rifampin, continue on minocycline, and add in Zithromax and Bactrim single strength. Continuing to take those meds only twice a day 3x a week, and using some herbs continuously, I felt pretty good in month 21.

Just as I’d done in month 20, I was riding my bike 25-30 miles every weekend. I also started up a boot camp class about 3x a week. And I up my diet a little more. It felt VERY good to be getting back to myself. And being in the boot camp class, especially, meant everything to me.

But the month wasn’t without a little struggle. On my first night of boot camp, I experienced an ocular migraine about an hour after class. Strangely, I had another one a week later that happened nowhere near exercise. I suspect they had something to do with blood sugar dips, as that’s what the two incidences had in common. Strange to me that the long-distance cycling hadn’t triggered anything similar though.

In month 21, I also experienced a couple kind of stabbing headaches on the left side of my head. They felt VERY muscular, and came on and went away very quickly. I suspect by feel of hand that I have a cervical disc out of place and am awaiting an adjustment from my chiropractor. We’ll see if he agrees!

When I initially went into see my doc, I reported being almost symptom free. The headaches and my forever ringing ears were the only thing left on my list, and the headaches seemed circumstantial to me. (Of course, in addition to the plugged ears which I still believe is simply a side effect of minocycline.) I left her office making claims of being near remission with a plan to start cyst busters as my last stage of treatment.

Well, unfortunately, just a couple of days later – before I’d even sorted out my first week of month 22 meds – I started to have pain in the bottom of my left foot again. And in my left knee. And transient pain in my wrists. It seems that perhaps my two months of 3 day a week, small dose medication regimen has left me prone to a bit of a relapse.

I alerted my doctor today and she called a bit of an audible. Instead of the word “remission” our new R word is “relapse” and cyst busting is going on hold. Instead, my 3-day a week regimen of small dose meds will become a 7 day a week regimen. And we’ll try to get everything back in check.

This is frustrating and scary and I hate even writing these words. But I suppose this is just the way of things.

The official symptom list of month 21 is:

  • Plugged ears (on mino days)
  • Ringing ears
  • Two ocular migraines
  • A couple left sided, short-burst headaches that seem muscular in nature
  • Left sided foot pain
  • Knee and ankle pain, especially left knee
  • Some transient wrist pain

I am nervous to begin month 22’s treatment plan. I am especially nervous to go on minocycline 7 days a week. I am nervous that the intracranial hypertension will get worse, that my ears will be plugged on an ongoing basis and that maybe even some of that scary bad vision from the pressure of my swelling brain on my optic nerves will return. I get scared of reporting adverse reactions like that to my doctor, for fear that I’ll be told it’s a herx when I really think it’s a side effect. Le sigh. BUT. This will all be whatever it will be.

I will step back a bit onto more treatment, and hope for the best. One day at a time, as they say. Wish me luck, and swift passage through this little downturn.

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Bartonella Herx


I don’t know if it is reality that struck me so much as Rifampin. This drug just makes my little heart so saaaaaad. Which, is such a strange place for me to dwell because I DON’T LIVE HERE. I don’t even vacation in this emotion. But here it is just sitting on my chest every day, pushing perfectly sweet air out of my lungs and leaving me gasping for what I just expelled. 

“Reality is no different”, I keep telling myself. Everything is just as great and just as hard as it was 2 weeks ago. The only thing that’s shifted is my brain chemicals. And they’ll shift back when this drug is through. And I will be ok. I AM ok. Even if it doesn’t feel like it right now.

Wishes for my post-Lyme Life

Well, I don’t want to jinx anything, but my ramp into the new/old treatment protocol I mentioned in my last blog is going very well so far. I have successfully worked up to 100mg of Minocycline twice a day, which is double the dose I was on in the summer of 2015… and WHAT a difference!

You see, back then, on just 50mg twice a day, I had experienced such bad brain swelling that I could hardly move and my vision was so blurry from the pressure on my optic nerves that I could barely see. Back then I would just lay in bed with Ace and cryyyyyy. After just a few weeks of constantly feeling like I needed to make a run for the hospital, my doc took me off of this drug and I switched to doxycycline earlier than I’d planned. At the time, I was convinced I experiencing normal human side effects and that I’d never be able to take those drugs. But alas, my doc was right… it seems this was just a really bad herx.

You see, this time around, a year and a half of treatment later, I’m back on minocycline with a little brain swelling (I can feel it in my ears and bridge of my nose), but no impact to vision, no headache, totally normal mobility, etc. I am just a little more tired and slow is all. Looking at me, no one would even know anything is going on.

It’s never been clearer to me: LYME TREATMENT WORKS. I clearly have FAR less bacteria dying off this go around. I am SO much closer to remission!

On my Facebook post this morning, my friend Leigh Ann reported a similar experience she’s having and we each started waxing poetic about what life is going to be like in remission… what we’re going to do when we reach that hard-fought stage of life. What a fun exercise in daydreaming.

A few of the things on my list…

  1. Reduce my ~$2,000 a month budget for Lyme treatment to about $500 for supplements and herbs I’ll keep taking to stay well.
  2. Use $500 a month of that $1500 savings to contribute to my ROTH IRA again. (I know this is a dumb thing to dream about, but this IS me HERE…ha… I dream about this stuff.)
  3. Use the other $1,000 a month to TRAVEL!!!!! Destinations I most deeply desire include:
    • Iceland for northern lights
    • Thailand for beaches, monasteries and amazing food
    • Venice – my lifelong dream
    • Paris to visit my tattoo artist and finish my leg piece
    • Hawaii for ALL the snorkeling
  4.  Fall desperately in love with the partner of my dreams. Build a home together. Adopt some little beings to shepherd through life. Humans? Squeeeee!!! I’d love that! If not, maybe a bunch of dogs. Or a parrot?! 
  5. Start to pursue fitness again! I want to ride my bike long distances, I want to lift some smallish weights, I want to jump rope… I don’t really care WHAT I’m doing, I just know I want to sweat more days than I don’t.
  6. Drink coffee with abandon… even if it’s still decaf.
  7. Eat FRUIT. ALL THE FRUIT I WANT.
  8. Live a small, low stress life with presence, mindfulness and gratitude. After being through what I’ve been through, simple, consistent and full of comfortable love sounds DREAMY to me.

Ahhhhhhhhhh…… it feels good just imagining it!! I’ve got a little work to do yet. Tomorrow I start rifampin at 150mg twice a day. 3 days after that, I bump minocycline up to 150mg twice a day. Then I’ll cruise there the rest of the month. Fingers crossed the rest goes as smoothly as transition so far has.

Cheers to everyone out there fighting. We got this!

-kar

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.

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.

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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.

Treatment Recap: Month 18

ONE AND A HALF YEARS OF TREATMENT DOWN!! Given that my initial estimate timeframe for treating was 3-5 years, this could mean I’m halfway there folks!

Physically, I’ve been holding up pretty well considering how crazy life has been since the whole mold debacle at my brand new house. (More on that later.) Honestly, with the fact that for most of month 18 I was working more than full time at Microsoft, fielding calls from contracts/mortgage brokers/real estate agents/ extra doctors, switching homes every few days or weeks, eating fast and packaged food exclusively, living out of a suitcase and facing serious uncertainty in my home situation, things could’ve gone a lot worse.

Many of the unusual symptoms I experienced in month 18 were a direct result of mold exposure, and only happened when I was around my home or near belongings taken from my home. Let’s do the list!

Month 18 symptoms:

  • Ringing in ears as always (no more variation in tone or volume though –  I believe this was related to a dosage increase in Zithromax which can be ototoxic)
  • Plugged ears, especially when inside my moldy house or near items taken from that house
  • Mild dizziness / brain fog when inside my moldy house or near items taken from that house
  • Bad dreams or vivid dreams, especially during this month’s super moon
  • Tightness and pain in wrists and ankle joints that seems directly related to muscle tightness, including one day of acute onset carpal tunnel that left my left hand numb and weak until chiropractic treatment

Things I’ve had less of in month 18:

  • Intermittent hearing loss and variations in volume and tone of tinnitus
  • Tremor in my right hand
  • More frequent heart palpitations, especially at night
  • Early waking
  • Muscle pain, especially in butt and back – core supplements (2 pills 2x a day with food) is the thing that finally cracked this nut!

For month 19, treatment tweaks I’m making include:

  • Doing one scoop of Cholestyramine 2x per day to bind to any mold toxins
  • Switching from a 4 on / 3 off antibiotic pulsing schedule to every other day (still taking doxy, Zithromax and Bactrim DS)
  • Using A-Bart and A-Tula herbs 2x a day every day
  • Adding selenium and chelated Zinc supplements
  • Adding a LOT of anti-inflammatory supplements from my doctor; quercertin, turmeric and nettles are all major players
  • I have run out of my Bob Miller supplements, and I’m going to see how I do without them (since none created earth shattering improvement upon starting)

Fingers crossed these changes promote further healing. Perhaps what will be most healing of all, though, is that the worst of my housing situation is over. At this point, I’ve decided to abandon my moldy house and all my belongings. I know. Crazy, right?? Unfortunately it felt like my only choice. Three factors went into me making this decision:

  1. Cost to repair was still very high: $40-50k to fix just the sub-roof and attic space
  2. The home is still attached to 4 other homes with the EXACT same problem, so likelihood of recurrence seemed, to me, to be quite high
  3. This was the kicker: I realized after taking some of my clothes from my house to the condo I was staying in, that the mycotoxins from the mold had seeped into all surfaces of the home. Just being around a couple bags of clothes made me very ill. This suggest that I could fix that attic all I want, but all items, all other surfaces, all drywall and wood and everything, would also have to be replaced for that to be a safe home for me. And I’m sure that cost would be more like $150k.
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Goodbye, house. Goodbye, stuff.

With one of the toughest decisions of my life solidly made, I set out to find myself a new home. Naturally, I started searching again in my beloved Capitol Hill neighborhood, where all my friends live and where I can walk to work. I looked at a couple of vintage units since they’re so affordable, but my ears plugged up immediately (deal breaker). I looked at a modern unit that seemed fine but was just too tiny. And I looked at a larger vintage spot where, kind of miraculously, my ears didn’t plug up at all. I was still skeptical, but some angel must have been looking at for me, because the leasing agent agreed to let me run a mold test and actually took the apartment off the market for almost a week while I waited for results. WHO DOES THAT?! Thank goodness she did. It ended up being one of the best ERMI results I had ever seen (2.99 ERMI score, 29 when you add Group 1 and Group 2 molds together and a 4 on the HERTSMI calculation). YAY! I decided to move in.

On the day I was going to sign the lease at my new apartment, I discarded all the clothes I’d had with me “on the road” since I’d washed them all with my moldy clothes when I was attempting to save them. I had only the outfit I was wearing, which was also contaminated. Just before arriving to signing the lease and get the keys, I went down to Pacific Place and purchased a pair of sweat pants, a tank top, a bra, underwear and a hoodie plus a pair of Uggs. When I got to the apartment, I stripped off my last set of contaminated clothes, double bagged them and stashed them in a corner of a closet I am not using. I showered, I changed into my clean clothes and I started my new life.

The most common question I’m getting at this time is “Did you really leave all your stuff behind?” The answer is yes, yes I did. I did try to save my clothes. I washed everything in hot water and borax, but kept reacting to them, so I gave up. I did move 6 paintings, 10 of my most favorite articles of clothing and my blue acoustic Washburn guitar into storage. I am hoping that once my body calms down, I can visit those things and see if I react to them. If I don’t, great! I’ll try them in my new, clean home. But if I do, I’ll either need to find a better way to clean them or just let them go.

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The 10 I’m trying to save…

So far NOTHING from my old house (except for me and the dogs) has come into the new place. I washed the dogs, I washed myself, and I even had the car that transported so many of these items cleaned and shampooed. As best I can manage, I have truly started over. I moved in with a sleeping bag, a Christmas tree and hope.

What happens next? Well, I foreclose on my home. I lose the $20,000 I spent buying it and I’ll have ruined credit for 7 years. And I’ll spend a lot of money purchasing new non-contaminated belongings of course (guessing $15-20k all said and done). But I’ll have my health, and my dogs’ health. And this endeavor will still be FAR less expensive than it would’ve been to try to save my house, especially if I hadn’t been successful. And really, what kind of price can you put on wellness?

The boys and I will be cruising into Christmas with a week plus off work, and nothing on our agendas except a whole lot of rest, relaxation and recuperation. To say life has been stressful since October is the biggest understatement ever (especially considering that September was home buying, travel and moving the FIRST time too). But the worst is over, we’re going to do a little reset, and I am SO grateful for this blank slate, for relative good health and for the gift of new beginnings.

Cheers to 2017. Wishing you all happy healing!

-k

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On the first night, we had snow. ❤

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

  1. Under the care of an ILADS Lyme-literate doctor, I am following the Horowitz protocol using antibiotics, biofilm busters, supplements and herbals to treat Lyme and bartonella. In month 17, my meds were: doxycycline, Zithromax, Bactrim, a-bart and a-L complex.
  2. Under the care of a Klinghardt/Shoemaker trained doctor, I am also doing some light mold treatment (cholestyramine) and nutritional deficiency work (B12, zinc, and other minerals).
  3. 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.
  4. I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
  5. I follow a no dairy/egg/gluten/sugar/alcohol 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. I eat lots of veggies and drink a lot of lemon water to stay alkaline.
  6. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, letting go of a romantic partnership that wasn’t supporting my healing, and making a strong investment in a positive social network (online and off).

Treatment Recap: Month 17

Oops! I skipped Month 16 – sorry folks. It’s been really hard to keep up with everything while living “on the road”. It’s been a pretty crazy 5 weeks, really, since I fled home. I’ve been changing locations every few days, living out of my suitcase and my car, keeping the doggies with me all the time, and of course managing an ongoing would-be remediation and rebuild project at my house (soooo many contractors, so many decisions).

5 weeks away from home and we’re still scoping the work that needs to be done to remove the mold and rearchitect / rebuild the design elements that allowed it to grow in the first place. It’s been a real emotional rollercoaster. Initial bids came in at $55k+ to do the work, and for a moment I thought for sure I’d have to abandon my home ($55k costs about $200k to borrow as a personal loan and – on top of being unable to afford a $1000/mo payment for 7 years – I’m also just not down with spending another $200k to save a house that cost $300k). So I started researching foreclosure consequences and shopping for apartments. THEN I learned about 401k loans, and discovered I am able to borrow $40k at a lower interest rate with payments more like $700/mo for 5 years. Still a major stretch, but kind of doable if nothing else catastrophic happens in that period at least AND all the money is being repaid to myself, so I feel less crappy about investing in the payments. SOOOO Now I am waiting for my contractors to tell me if they can build a plan for under $40k that would save my home. It’s emptied and ready for work if they can manage it…

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I celebrated my 33rd birthday away from home, and I’m coming to grips with the fact that Thanksgiving, Christmas and maybe even New Year’s will all be celebrated away from home too. It’s so disappointing. I had all these grand ideas of hosting warm, bustling, food-filled festivities this year. Sigh. Hopefully something I can pick up on in 2017. My luck in 2017 HAS to be better, right??

One good thing through all of this is that my health has held pretty steady. Amazingly so, actually. One of my fears since beginning to get well from Lyme disease is that any crisis would throw me into overwhelming active infection all over again… I mean, you always hear people say that, that they were doing well until a big breakup or a death or a surgery or something. I mean, I know this from experience – I have ALWAYS had episodes of poor health (blamed on MS relapses) when my love life got rocky, and I fell sickest in 2014 just a couple of weeks after the then-love-of-my-life moved out of our home. Granted, this homelessness / mold fiasco isn’t as soul crushingly devastating as losing a big love was…. but I’m still really pleased I’m holding up ok through this.

That said, the whole scenario hasn’t been without consequences. I’ve been working with my klinghard doc who is also mold literate and works the Shoemaker protocols. Naturally, she’s done a bunch of mold testing on me.

Interestingly, we had done some baselines just a week or two before my ceiling came down and the whole mold fiasco started. In those baselines, we had found:

  • Shoemaker labs showed past mold exposure is DEFINITELY part of my illness, but with a pretty low TGFB-1 test, it was not current mold exposure (INTERESTING!)
  • My CD57 score (natural killer immune cell count) was 58, up from 29 when I first began treatment. Still lower than I’d like as over 100 is a “safe zone” often associated with Lyme remission, but way better than I had been at my sickest
  • Not mold related, but I had an unfavorable copper / zinc ratio often linked with muscle pain

Now, I was doing A-Okay in my house until the ceiling was removed and all the mold was exposed. After that I felt pretty sick inside the house – plugged ears, nausea, vertigo… hard to know how much of this is true physical reaction and how much is stress, but I never felt well when I went inside. When my doctor re-ran my labs, she found:

  • My TGFB-1 score (an inflammation marker) had nearly doubled
  • My CD57 score had dropped way down to pre-treatment days at 22

Now, I had also fallen down stairs and sprained my ankle pretty good… maybe even broke a couple little bones (cuz my luck is just that awesome right now). And I had also been EXTREMELY STRESSED OUT in the days that immediately followed fleeing my home. So… it’s hard to know what impacted what here. This bad bloodwork could all be the result of ankle swelling and stress. Or it could be mold. Or some combination of all the above. But bottom line is, in late October, these numbers were not looking good. I’ll run them again in late November / early December and get a better read on how I’m doing.

In the meantime, I am just trying to stay calm, to ride the waves and do the best that I can with all this uncertainty. And I can’t be too shocked or surprised that I do have some strange symptoms happening. Let’s do the list!

Month 17 symptoms:

  • Ringing in ears as always – but now with episodes of new tone and increased volume
  • Brief periods of hearing loss on either side that usually pass in 2 minutes or less – yikes
  • Plugged ears, especially when inside my house / around the mold
  • Continued tremor in my right hand which remains episodic and somehow related to food (gets better when I eat)
  • More frequent heart palpitations, especially at night
  • Episodes where I feel like I am ABOUT to have vertigo, but then I don’t – hard to explain, it feels woozy/spinny almost but then passes without actual instability
  • Bad dreams, trouble sleeping

Things I’ve had less of in month 17:

  • Muscle pain (YAAAAAAAAAAAAY!! This had been REALLY getting me down for like 4 months, but now I can sit at work, I don’t rush off to active release therapy or massage multiple times a week anymore, I can go to theaters!!)
  • Light headedness
  • Exhaustion
  • Eye pain and light sensitivity
  • Foot pain (except when my temp roomie made me jog… heh.)

So yeah, things are definitely a bit mixed up. But overall, I am extremely pleased with how my body is holding up. I am ESPECIALLY pleased that a lot of that chronic pain and muscle spasm I’d been experiencing has gotten better. I’m honestly not sure what finally cracked that nut. A few possibilities are:

  1. Dumb luck
  2. Dextrose shots (I did 3 sets of about 30 shots in my back and flanks)
  3. CORE brand supplements to address that negative copper / zinc ratio I mentioned earlier
  4. In month 16 I went back on Doxycycline which has stronger anti-inflammatory properties

** shrug** who knows!! But if you’re experiencing back pain and muscle spasms, maybe try a few of those things!

In more good news, I  had two neat FIRSTS this month in the name of my birthday. I had my FIRST tattoo since getting sick. Now, it’s a pretty little one, about 45 minutes of actual time under the needle, but it went really really well and I noticed no ill effects. YAY!!! AND later I had a birthday cocktail!! Well… more like I drank a quarter of 4 different cocktails so I could taste lots of my old favorites, hehe. But still! It was delicious, and amazing and I had absolutely no ill effects at all!! So I’m super happy about both of those developments. My birthday was silly, and raucous, and full of goofy, dancy, happy love. Needless to say, that was an INCREDIBLE treat during a really otherwise pretty shit period of my life. I’m so grateful.

I think that’s all the news from here. By my next Treatment Recap update, it will be a year and a half of treatment complete. Wow. What a gift this healing is. I hope I have some really good house and health news to share by then.

Until then, happy healing everyone.

-k

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

  1. Under the care of an ILADS Lyme-literate doctor, I am following the Horowitz protocol using antibiotics, biofilm busters, supplements and herbals to treat Lyme and bartonella. In month 17, my meds were: doxycycline, Zithromax, Bactrim, a-bart and a-L complex.
  2. Under the care of a Klinghardt/Shoemaker trained doctor, I am also doing some light mold treatment (cholestyramine) and nutritional deficiency work (B12, zinc, and other minerals).
  3. 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.
  4. I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
  5. I follow a no dairy/egg/gluten/sugar/alcohol 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. I eat lots of veggies and drink a lot of lemon water to stay alkaline.
  6. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, letting go of a romantic partnership that wasn’t supporting my healing, and making a strong investment in a positive social network (online and off).