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).

Some big fears, coming true: Mold

Well, if ever there was a case study that you can do everything right and still end up screwed, this is that case study.

As most of you know, I sold my big Issaquah home in 2010 to free up income for Lyme treatment. I moved into an apartment in Capitol Hill for 1.5 years only to find that our city’s housing shortage and escalating rent soon made it just as expense as the Issaquah home had been. In what was supposed to be a final move toward long term affordability and ongoing peaceful healing, I purchased a small, more affordable townhouse in South Park. It was a very happy time…

However, it didn’t last. Not even 3 weeks after moving in (during Seattle’s kind if underwhelming “record breaking” storm), my skylight leaked. I hired professionals to come dry it out and when they removed the drywall, we found the ENTIRE SUBROOF to be covered in mold. All 491 square feet of it.


My physical reaction was immediate upon the opening of the ceiling as I experienced plugging ears, vertigo, wooziness and nausea. Bloodwork supported that this was indeed a physical reaction to the mold. I experienced a huge decline in my immune cell count (CD57 that was 58 went down to 29 – normal is over 100) and I had an enormous spike in inflammation markers (TGFB1 that was 3541 went to 6013 in just a few days, with normal being under 4625).

Cladosporium is known to cause asthma, allergies, airway infections, lung remodeling and lung tissue damage in healthy people. In Lyme patients, the damage can obviously be far more devastating. In short, this is not something anybody should have in their home, most especially someone like me.

The dogs and I packed up our tiny car and have been trying to enjoy “life on the road” while we sort out this big repair project.


I have hope that once this home is restored, it will become a safe place for the dogs and me to live long term.  And at some point in the not so distant future, I will have a more full blog post on everything I’ve learned about mold. (It’s A LOT!)

My one take away so far is this: When you’re house shopping according to my guide, RUN THE ERMI. Not the HERTSMI!

Now, I’ve had a LOT of folks asking me how they can help. You see, as is the case for most people who JUST bought a new house, funds for me to cover repairs out of pocket are quite low.  And because much of the issue appears to be builder error, insurance coverage is VERY limited at just $1,600 total. I am still awaiting final bids for the work. But all signs point to an expensive project. For those who want to donate, I have provided 3 ways to do so:

  1. GoFundMe (charges 7.9%)
  2. PayPal: ksmargeson@hotmail.com
  3. Cash App: $KarlaMargeson

I will update the GoFundMe with an exact amount for our goal and more plans as we move forward. To get started, any bit helps.

Funds will go toward (in priority order):

  • Removal of the mold
  • Treatment of all attic wood to prevent future growth
  • Rebuilding the ceiling and/or roof, with improvements to prevent regrowth
  • Improvements to attic, crawlspace and rest of home to improve air flow and reduce humidity
  • Cleaning supplies and services to decontaminate
    belongings in the home
  • Testing and mold inspection services to ensure safety of the home
  • Perhaps, with what is left over, contribution to Karla and the pups’ food and housing and sanity whilst work is underway

Thank you to EVERYONE who is sharing support in whatever way they care to. It means more than you know.

Happy healing.

-K