Treatment Recap Month 10: Epic Winning Underway!

Month 10 has been my best treatment milestone yet. After having a really rough time in month 8 and 9 on Rifampin and Rifabutin (which I don’t metabolize well), I asked my doc to put me back on the wonder-team combo that afforded me so much healing in September-December: Doxycyline and Bactrim DS. She agreed, and paired it with a new guy, Zithromax. (Previously I’d been on Cefdinir as my third).

#ridebikesNo shocker, I did awesome on it. My symptom list is REALLY small. In month 10 I’ve lived an almost totally normal life including dating, house shopping and working way more than full time. I was able to start weaning off my muscle relaxers and I even got back on my bicycle this month!! In describing my success online, a few people even used the word “remission” with me! Now, I know that’s not the case. It’s not remission in my mind until I am completely symptom free and not requiring $2000 worth of meds every month. But I’ll agree, I am thinking of myself as a success story these days.

In addition to the antibiotic changes, this month I also added:

  • Biofilm busters
  • Cortisol maintenance supplements + ashwanga (stopped after 2 weeks because I was WAY too energetic)
  • Digestive Enzymes from Bob Miller: So rad to finally digest and get energy from my food. I didn’t realize I was hungry ALL THE TIME before because I wasn’t properly digesting. Game changer!

All the new meds came on board without any trouble. I did have a little Bartonella herx on day 3 or so of Bactrim DS. It consisted of mild fatigue, mild head pressure and some strange sharp pain sensations in my feet that passed within minutes each time. Overall that experience lasted less than a week, and it turned into a really a good month. Let’s do the full recap.

Things I have more of in Month 10:

  • The same eyes-not-focusing issue I mentioned in months 8 and 9; it’s like eye-specific fatigue
  • NEW: When eyes are really fatigued, and I look downward, they sort of cross as they track down. It hurts! And my vision shakes. I had this once YEARS ago (attributed to my MS) but it went away. Hoping it will do so again. Prism lenses still help.
  • Ringing ears – this remains constant, but a few louder days this month.
  • Some off / on trouble sleeping… as usual, I over index on energy.

THAT’S IT!! That’s all!! Things I have had recently but weren’t around this month were:

  • Depression
  • Fatigue
  • Pressure in right ear (maybe had once or twice, but barely noticeable; clicking and popping remained in ear when congested)
  • Jaw pain
  • Brain fog
  • Numbness and tingling
  • Joint pain

These symptom lists are getting shorter, I love that!

Perhaps the best news of all from this appointment with Dr. M was the results of my HLA genetics testing. I’d asked her to run the full panel to find out how concerned I should be about mold while I’m house shopping. (I am mold susceptible, so yup, I have to be careful… groooooaan.) BUT what was fascinating is that I do not have the HLA allels that would make me susceptible to chronic Lyme!! AMAZING! I have “mild susceptibility” to bio toxicity, which of course everyone has. Basically, this means I got Lyme circumstantially, and Lyme is a real chore to get rid of for anyone, but my genetics are the best possible combination for leaving Lyme in the dust. My doc and I marveled. Surely this must explain why I did so well with “MS” for the last almost 11 years, and why I’ve responded to Lyme treatment at lightening speed. (Well… Lyme lightening speed anyway… who knew recovery in terms of years would ever sound fast to me?!)

My treatment timeline came up in our conversation; I lamented to her that it’s proving really difficult for me to find a mold-free home at my price range because my finances are so limited by the expense of Lyme care. I explained that I was trying to find an affordable place because I have to be prepared to pay for Lyme care for 4 or 5 more years (3-5 being her original estimate for my 23 year infection). She smiled and said, “Karla, this isn’t going to take you 5 years. Look at you! You’re 90% of the way there in less than one.” I could’ve cried. We can’t know the future, obviously. But the odds are in my favor big time for a faster and more robust recovery than I originally expected, and it’s proving out in my progress for sure.

I often stop to appreciate that these days Lyme can sometimes be an afterthought for me. I popped into Metropolitan Market the other day, for example, and grabbed a yummy cous cous salad. On the first bite I was like, “omggggg this is so good, why haven’t I eaten this in so lo…. OH SHIT, GLUTEN!” Ha!!  And although, I’ve been alcohol free for about a year now (since I started treatment), I’m finding I have to actively remind myself to NOT order a beer on the porch at Linda’s on these warm nights we’re having. Last summer alcohol wasn’t even a thought on my mind, I felt so shitty I’d have never even have considered a drink. It’s like Lyme disease is actually living mostly in the back of my mind these days. What a GIFT!! (I do still enjoy the warm evening patios… but with a soda and lime instead.)

Speaking of sunshine… summer seems to be arriving early in Seattle this year. I had a quick chat with my doc about what treatment is going to look like when the sun really comes out. You see, I’ve been on doxycycline since August of 2015, which means I haven’t been able to expose my skin to sun in 9 months! It’s been all long sleeves, sun-brellas and strategic street crossing in search of shade for me, and it’ll continue for May. BUT as of June, I will be switching to amoxicillin, tindamax and Bactrim DS which means I can go in the sun again! You guys… I CAN’T WAIT. I can’t wait to stand at Sounders game and not keep my hands in my pockets. I can’t wait to NOT cross the street into the shade. I can’t wait to never feel embarrassed about using an umbrella on a sunny day. I can’t wait to wear a bikini and lay on the beach. I can’t wait to ride my bike in SHORTS like a proper human!!  YES!!! It’s going to be amazing. Just 4 more weeks to get through. I am SO excited. Summer 2016… I am coming for you.

Alright. Those are all the updates from month 10. Onward to Month 11 we go! No real change to the plan… I’m increasing my Zithromax dosage from 250mg 2x a day to 600 1x a day. I expect nothing but continued progress.

Wishing you all lots of love and healing.

-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: antibiotics, supplements and some herbals. My best meds have been doxy, cefdinir and bactrim (for bartonella, my only known co-infection).
  2. In month 3 or 4, I did LymeStop in Idaho, and while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later and I did not take his supplements.
  3. I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
  4. I follow a strict no dairy/egg/wheat/sugar/alcohol/caffeine diet (I am sensitive to eggs). 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.
  5. I promote detoxification with Epsom salt / baking soda baths, exercise to keep that lymph moving, lemon water every day and a diet that skews alkaline.
  6. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, removing myself from a relationship that wasn’t supporting me or my healing, and making a strong investment in a positive social network.
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A Lymie Goes House Shopping: A BASIC Guide to Mold Testing

Nothing is ever simple with Lyme, is it?! I am in the market to purchase a home, and it turns out, even this is impacted by Lyme. You see, I’ve come to learn that getting well from Lyme is nearly impossible if the patient is living or working in moldy environments. There are types of mold, you see, that release myotoxins into the air that actually suppress your immune system. Obviously this is bad for everyone, but it’s especially bad for those of us fighting infection.

To my knowledge, mold has not been a part of my Lyme illness to date. And I am by no means a mold expert. But I knew enough to be cautious about moving anywhere that would make it more difficult for me to get well, so I brushed up on some basics of mold testing. I thought I’d share what I’ve been doing to measure safety of prospective homes.

SELECTING YOUR TEST

Testing for mold is simpler than I thought. I am loving the dust tests from Mycometrics. You have two options:

  • The ERMI test is the most comprehensive option, and profiles molds of all types. This test was designed to be used when you’re analyzing a building for the first time.
  • The HERTSMI test looks only for certain types of mold MOST associated with water damage (NOTE: does not include humidity grown molds). This test was designed to be used to assess the completeness of a remediation project and should not be used when profiling a house for the first time.

UPDATE: Don’t make the same mistake I made. When I was house shopping, I began to run HERTSMIs to save money. My HERTSMI on a new construction home was very good, with a score of 4. I bought it feeling safe. But within 2.5 weeks of living there, I discovered the entire attic to be full of mold. I lost that home, all the money I put into it and literally all my belongings. I was homeless for 2 months and will have bad credit for 7 years. It was a $40,000 mistake I made trying to save a couple hundred bucks.

DO YOURSELF A FAVOR: RUN THE ERMI.

PREPARING YOUR TEST KIT

You can, of course, order the tests from Mycometrics. Or you could save yourself $50 by putting together your own kit. All you need is:

Once you have all the supplies, put on a pair of the latex gloves, and open both your boxes of Swiffer sheets and ziplock bags. Being careful not to contaminate your Swiffer cloth by letting it touch any surfaces, place one Swiffer cloth into one ziplock. I knew I’d be testing multiple homes, so I made 5 or 6 kits to start. Print off one chain of custody form and one credit card payment form to go with each bagged kit. You’re ready to head to your property!

COLLECTING YOUR SAMPLE

When you reach your property, get ready to play detective. First step, is to put on a fresh pair of latex gloves. Then, remove your Swiffer cloth from its baggie and search for dust. I like to take a little from each room of the property. You’re looking for OLD dust if you can find it. Trust me, it’s there. Run the cloth along tops of door jams, tops of picture frames, on top of water heaters, inside cabinets, behind the fridge, behind the stove… anywhere you can find it. Each time you take a good swipe of dust, move to a different section of the cloth. Once you’ve collected a good bunch of samples from each room, return the Swiffer cloth to the ziplock, press out the air and seal.

For each baggie, use a sharpie to write the following information directly on the bag:

  • Address of location sample was taken
  • Your name
  • Your phone number
  • Your email address

When you get home, fill out your chain of custody form and credit card payment forms and you’re all set!

Logistics: If you’re purchasing a home, timing is everything. I like to collect my dust sample as early as possible. Most agents were fine with me collecting dust during open houses. I’d simply say “Wow, this is a beautiful home, I’m very seriously considering an offer. I do have a mold sensitivity, do you mind if I collect a little dust to sample?” EASY!

It’s $44 to overnight the completed kit to Mycometrics. If it arrives by 10:30am ET, they can do a same day turnaround. 3-day and 2-day options are also available. Standard is 5-7 business days. So long as you get results within your inspection contingency window, you’re all good. I even had a property where I  mold testing before making an offer.

INTERPRETING YOUR RESULTS

Depending on how fast you asked to receive results, you should receive an email from Mycometrics within a few days. Take a deep breath, it’s time to interpret your results. It’s good to know ahead of time that all dwellings contain mold, so presence of mold is NOT a deal breaker. What you’re looking for is how MUCH mold is there, and what strains are highest?

The ERMI test comes in a nice little report that will give you an overall score on the relative moldiness of your tested area. Scroll down to the bottom of your PDF, and look for the row labeled “ERMI (Group I – Group II)”. This is the magic number – it’s on a scale of -10 to 20. Dr. Shoemaker of SurvingMold.com encourages Lymies to live in places with a score below 2.0. Additionally, you should look to be sure your molds in group 1, and group 2, when combined is a score of less than 30.

Whether I got the ERMI or the HERTSMI test, I also like to do the HERTSMI scoring, which assesses the relative risk associated with the dangerous strains of mold that are present in your sample. Here’s how to do it: On your ERMI PDF, locate each of the lines associated with a particularly dangerous strain of mold. If you did the HERTSMI test, this is easy, as those are the only ones listed. Next to the name of each strain, look to see how many spores were found, and give yourself a certain number of points for each of the following:

HERTSMI SCORING

According to Dr. Shoemaker, who developed this scoring model, your overall score falls into these categories:

<11      Statistically safe for re-entry for those with CIRS (chronic inflammatory response syndrome)
11-15   Borderline; clean first and re-test before re-entry
>15      Dangerous for those with CIRS. Do not enter.

Even though I don’t have CIRS, I was aiming for a HERTSMI score of less than 11. I figure, if it’s safe for CIRS folks, it’s safe for Lymies. But use your judgement here and talk to your doctor!

DECIDING WHAT TO DO

Deciding what to do with your results, is of course the hard part. Like anything Lyme related, it’s complex and ultimately a very personal decision.

The first place I went into had a low HERTSMI score, but a high ERMI (over 4.0). So it was overly moldy, but not especially dangerous. I thought about buying it anyway, but I had a Lyme friend who is mold sensitive peek her head in and she reacted… that was enough reason for me to back out.

The second place I tested was very high ERMI and very high HERSMI, especially in Stachybotrys chartarum which is the dreaded toxic black mold. I read later in the HOA meeting notes that the whole floor had flooded so badly some of the units had to be rebuilt… a fact that was left out of the disclosure document. Thank GOODNESS I tested!

The third property I tested was a more modern building (the previous two had been vintage) and it has almost no detectable mold. DREAM COME TRUE. Only I didn’t win the bid, darn it.

I’m currently mold testing on my 4th property. Fingers crossed! But overall, I feel like these tools are helping me make better decisions about where to live next, ensuring it’ll be a good move for my wellness.

I hope the info helps you in your own testing! Best of luck out there!

For the Lymie Who Feels Like a Burden

I found this post by Lindsay B. really moving.

When I really stop to consider it, I’m surprised at how many times a day I feel like a burden.

  • Every time I order a water from a busy bartender.
  • Every time I bust out a baggie of pills at a group dinner and worry someone else will judge my friends and me for it.
  • Every time I open my stupid sun-brella on a busy sidewalk.
  • Every time I say “I can’t make it,” or “I just don’t have the energy”.
  • Every time I duck out of work for a blood draw, for an appointment, or to pick up a prescription.
  • Every time I have to ask my friends to sit in the shade.
  • Every time I ask a server “does that have dairy/eggs/gluten in it?”
  • Every time I am the slow one walking up the hill.
  • Every time I say, “I’m not quite well enough for that, yet.”
  • Every time I think I might let someone love me… let them attach to this sometimes difficult life… let them watch me sometimes struggle… let them hurt too.

The list goes on. I feel this multiple times a day, every day… I do. And health wise, I am in the “olympic athlete” category of Lyme recovery. I’m well. I’m independent. I’m financially secure. These are not words usually used to describe someone treating Lyme. I’m PRIVLEDGED.

And if I am struggling with this, as functional as I am, you can imagine how other Lymies must fare. My brothers and sisters in this battle are fighting these thoughts on SOOO many more occasions than I am. When they can’t work. When they have to do fundraisers. When they have to ask for rides places. When they spend 95% of the time at home….. when they NEED help.

Chronic illness is SO tough. It’s no wonder isolation and depression are common for all of us. Lymies, read Lindsay’s blog and remember YOU ARE NOT A BURDEN. Healthy people, read Lindsay’s blog and find words to remind us actively… that you love us just as we are.

Edit: I want to add that NOBODY IN YOUR LIFE should be reinforcing these thoughts. We should challenge these thoughts and our loved ones should help us challenge these thoughts. Nobody should be agreeing with them. If someone in your life is characterizing you, or your illness as a burden… please find the strength to show them the door. Trust me on this one, you’ll be 1000x better off for it in every way, including your capacity for healing.

Happy Muscles, Happy Karla

So, anyone following me on this path with Lyme is probably aware that one of my most prevalent challenges with the illness has been with my muscles. A cruel twist of irony, really, given that USING my muscles for weight lifting and other adventures has been a major and defining passion of mine. But, nobody ever said this whole human existence thing was meant to be fair, right?!

Anyway, I want to share a symptom specific progress report on this one. The news is good.

rhomboidsThe first muscle challenges I had crept up in 2011. Out of nowhere, I got this gnarly muscle strain in my right rhomboid. I couldn’t stand up straight or lift anything for nearly 2 weeks. Acupuncture and active release therapy helped me out that round. But I went on to get this very same injury several more times over the coming years, and always on the right side. And always, seemingly, without provocation.

In 2011-2012, I also started to develop a lot of tightness in my trapezius muscles. I didn’t think much of it… I was a bit overweight had just started crossfit as a means of getting fitter. I had never lifted weights before and figured that, on me, those muscles just wanted to get tight FAST. I know now, this is a super classic symptom of Lyme disease.

Erector_SpinaeAs you all know, Lyme disease and bartonella (my only known coinfection), didn’t impact me in a full-body way until the great collapse of 2014. And even then, my muscles were pretty well behaved at first, actually. It wasn’t until early 2015 when things got ugly – fast. The tightness in my traps grew, and spread all the way up my neck where pain radiated from the base of my skull. I had horrendous facial pain that spread out like a spider web from my right jaw (everything, always on the right side). My erector spinae muscles, the long stabilizing ones that run on either side of your spine, were way too tight, weak and would seize up at the slightest provocation. Standing, bending and any mount of balancing became extremely difficult for me. When putting away dishes, for example, I had to hold onto the counter while I lifted a bowl from the lower rack of the dishwasher. Hiking, biking, even just standing at a Sounders game became pretty impossible for me at this point. And to make matters worse, I began experiencing myoclonic seizures. Not nearly as scary as it sounds, I’d have these when I laid down and the muscles in my back would begin to release. Rather than unwind slowly over time, they did so in short, kind of violent bursts, I’d have full body shakes for 10-15 minutes each night after I got into bed. Not a physically horrible experience, but sort of emotionally traumatizing.

ANYWAY. Somewhere around May 2015, my neurologist who treats my MS put me on Baclofen, which was a godsend. It’s a muscle relaxer that works in the nerves to prevent muscle spasticity. Very commonly used for muscle seizures in those with spinal cord injuries, it’s a pretty safe drug to be on. Plus, it doesn’t make you loopy or weird or anything, which I appreciated. For the last year, I have been on 10mg 2x a day and that helped IMMENSELY. The symptoms weren’t at all gone, but they became minimal enough that I could mostly function with a little caution.

Fast forward to my actual diagnosis of Lyme and Bartonella in June 2015, I began treatment of the actual problem: infection. It’s been slow, but I’m very happy to report that these symptoms have all gotten SO much better. I kept progress videos, which I’m now very grateful for. Recovery is so impressive when you can see it with your own two eyes! I mean… check this out:

June 30, 2015: This represents the way I’d been for most of 2015.

August 3, 2015: This is around the time I started seeing my first improvements on the Horowitz protocol. This video was taken on a really good day for the time, but this wasn’t a sustained increase in function yet.

October 2, 2015: Having done LymeStop and several months of Horowitz protocol, this is when I started to make my biggest improvements. Doxy, cefdinir and Bactrim were my magic combo. But, this was really hard for me – you can see the red face. And I was pretty fatigued after. I remember trying to reduce my baclofen dose to 10mg 1x a day at this point and having an incredible rebound of muscle tightness. I stayed on 10mg 2x a day.

April 16, 2016: While I haven’t yet attempted heavy lifting or hiking, but I no longer worry at all about my muscles’ reaction to normal everyday activities. I move incredibly well, I have minimal pain, I can stand, balance, and I even went on a pretty decent bike ride yesterday. In short, these symptoms don’t even enter my mind unless I’m considering a more extreme activity. And, as of this week, I am down to 10mg of baclofen 1x a day; transition went well, only very minimal rebound muscle tightness which faded swiftly. At this point, I think I’ll soon be ready for some very very light weight lifting and easy hiking. I don’t think it’ll be long at all before I’m off the supportive meds altogether.

LIFTOverall, this is thrilling for me. I posted in July of last year about how badly I’d love to be back under a barbell. It seemed like such a distant impossibility at the time. I can’t help but wonder… by July 2016, will it happen?!

A girl can dream.

Becoming a Success Story

IMG_3362I just posted my story in the Lyme Success Stories group on Facebook. This is a group wherein the only people allowed to post are those “in or close to being in remission”.

I’m sitting here staring at my screen letting that sink in a little. I… me… Karla Margeson… I am close to remission. My eyes tear up at the concept even entering my mind.

I know Lyme treatment is different for everyone, but when I started, I set some rough estimations for my timeline. I said, “I hope I begin to see improvements after a year,” and “I hope I’m in remission within 3-5”. And maybe true remission (the kind where I don’t need 95 pills a day and $2000 a month to hold onto it) will take that long. But I sure as shit didn’t expect to be feeling so close to normal 10 months in.

The word “grateful” doesn’t even begin to cover it.

Anyway. I wanted to share this update here as well, and hopefully send hope back down the path to those in the thick of fighting. Hang in there.

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I want to tell you about my last couple weeks of life. I am working 40-50 hours a week at Microsoft (high stress, high fun). I am house shopping during evenings and weekends which means lots of walking around, doing inspections, filing paperwork, thinking hard (and clearly). I am DATING!! I am telling suitors that I have Lyme disease and getting pretty decent responses for the most part. I am vising friends on top of this 3-4x a week. I am even babysitting my friends cats, walking a mile uphill to see them each night and then back home. I am walking 10,000 steps a day easily. I am making PLANS without hesitation. I am investing in the experiences around me. I am present in my life and not (too) distracted by my experience in my body. I am at least thinking about going to the gym… which is more than I’ve done in well over a year!

In short: I am pretty easily living a VERY NORMAL LIFE. Not to say Lyme is completely not on my mind. I have constant ringing in my ears. My body temp fluctuates way more than it should… my hands are always freezing. My muscles still get mad if I over do it (not back to weight lifting yet). My eyes are “lazy” and don’t like to focus without my prism lenses. But this is so so so minor compared to a year ago.

How bad was I, you ask?  Well, I’ve been infected since 1992 (age 9). I had migraines, a year of asthma and arthritis as a pre-teen. “Carpal tunnel” for a year or two in my late teens. I got MS when I was 21 and averaged 3-4 neurological relapses a year for most that time with white matter brain lesions on MRI… that’s when I stopped thinking of myself as healthy, but I still did very well and was “normal” between relapses and I didn’t have any other health problems aside from MS. Then, in my late 20s I got plantar fasciitis and started having terrible muscle tension with many trigger points… this is when I started to lose some of my favorite activities. Finally, in “the great collapse of 2014” (age 31) I really fell apart: Hearing loss, vestibular disorder, TMJD, chronic fatigue, fibromyalgia, Hashimoto’s, panic disorder, anxiety, insomnia, heart palpitations, numbness and tingling, horrible facial pain, pressure headaches, blurry vision, night terrors, hand tremors, mania, unexplained weight loss, acne, hair loss… you name it. I was homebound for months. I measured life in seconds. Every day was an emergency. My poor sister Christy must have fielded 3-4 anxious phone calls from me each day. FINALLY someone told me I should get tested for Lyme disease, I got diagnosed properly, I got onto treatment and (after an initial rough couple months) I’ve done nothing but improve.

How am I treating?

  • Under the care of an ILADS Lyme-literate doctor, I am 10 months into the Horowitz protocol: antibiotics, supplements and some herbals. My best meds have been doxy, cefdinir and bactrim (for bartonella, my only known co-infection).
  • In month 3 or 4, I did LymeStop in Idaho, and while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit and I did not take his supplements.
  • I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
  • I follow a strict no dairy/egg/wheat/sugar/alcohol/caffeine diet (I am sensitive to eggs). I eat paleo type meals for my “core” meals, but I do also eat rice, beans, tortilla chips, tacos and sometimes Thai food when I’m dining out with friends.
  • I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, removing myself from a relationship that wasn’t supporting me or my healing, and making a strong investment in a positive social network.

I am blogging everything at karlafightslyme.wordpress.com.

I just wanted to share this LONG update because as I get better, I find myself visiting the groups less and less. It’s because I’m LIVING LIFE. But when I was at my worst, I was DYING for messages like these, so it’s important to me to send this back down the path. Healing is possible. Sending everyone so much love.

Want to learn more about late stage Lyme disease? Here are two of my favorite documentaries:

  1. Under Our Skin – free on Veoh
  2. Under Our Skin 2: Emergence – rentable on YouTube
    (look how much those patients healed!)