Treatment Recap: Month 14

Second verse, same as the first. Not much has changed in month 14. In fact, I still have the same two symptoms on my list as I’ve had since month 12:

  • MAJOR muscle issues including spasm, knots and pain
  • Ringing in ears

You read that right. The change from Amoxicillin and Zithromax to Biaxin and Plaquenil did nothing to help the muscles that came on so suddenly in May/June. The muscle pain is still debilitating. It travels around and changes intensity each day. But it’s always there. At this point, it is very difficult for me to spend any time at all sitting. My butt, hips, and low back just SCREAM in agony even minutes into being seated. 99% of my time is spent laying down or standing. I feel the best when I’m up and walking around. Of course given that I have a desk job and also that I’m a human who sometimes gets tired, constant movement isn’t an option. So I’m frequently in pretty excruciating pain.

I’m working with a few types of body workers, most notably a couple of chiropractors who do deep muscle work. They are releasing my muscles every few weeks, which provides relief for a few days. And they have me doing exercises at home to stretch my hips and strengthen my glutes, but so far nothing is helping.

My Lyme doctor insists this is a problem with toxins. As such, she has me starting Cholestyramine this month which is a toxin binder. Taken away from all my meds, this is supposed to remove any toxins that my body is having a hard time flushing on its own. Bob Miller, my genetics doc, is also starting to open up my methylation pathways with a product called Methylation Assist Liquescence. Once I’m on that for a few weeks, I’ll started methylated folate, which HOPEFULLY will help this MTHFR-positive Lymie more readily get rid of some of this junk in my system.

If it’s not a detox issue, I think it may be an imbalance or nutritional deficiency of some other kind. Electrolyte imbalances, notably, are associated with muscle pain and cramping.  And long term antibiotic use can indeed impact electrolytes. I learned this when I did an internet search to find out why my legs shake SO violently after stretching (honestly it’s a little embarrassing). I have long been supplementing with Nuun tablets, but will be adding in an oral pill supplement as well.

It could also be that I have some viruses causing trouble for me. After all, Lyme and zoster viruses (like herpes viruses or Epstein Barr Virus) especially tend to egg each other on. The one I most heavily suspect is EBV. I had a very intense case of mono as a teen, and I was exposed to my nephew’s mono the week before I fell very ill with a vestibular disorder. I’d been blaming the whole thing on Lyme, but it may very well have been a combination. EBV is known for causing facial pain, hearing loss, ringing in ears and middle ear balance disorders like I suffered in fall of 2014. It’s also known for causing tight, aching and spastic muscles, which I had then AND have again now. Anyway. Ramping up viral treatment can’t hurt. So on my own, I’m adding L-Lysine and multi-mineral supplements too.

In total, that means the additions for month 15 are:

  • Cholestyramine
  • Methylation Assist Liquescence then Methylated Folate
  • Additional electrolytes
  • L-lysine
  • Multi-mineral w/ zinc

Fingers crossed something starts to work. Being in chronic pain that I don’t seem to have any control over is VERY demoralizing. It’s hard for me to keep good moods and kindness in my heart. And I feel very tired of this fight. I can’t imagine how people endure this for years at a time. I pray I won’t have to.

Some of the things that I’m doing to help the muscle pain include:

  • Hip flexor stretches (couch stretch)
  • Hamstring stretches
  • Buttock stretches
  • Buttock strengthening exercises (no relief yet, but my chiro insists I keep going)
  • Foam rolling my buttocks and erector spinases with an Orb ball
  • TENs unit and lacrosse ball on my traps or mid back if needed (but most pain has been in hips and butt this month)

Wish me luck as I head into month 15. If one of these changes cracks the nut, I’ll be on the road to being symptom free. And honestly, I really need a break from this acute suffering. I do.

Wishing everyone out there lots of health and healing!

-Karla

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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, biofilm busters, supplements and sometimes herbals. To treat Lyme and bartonella, my best meds have been doxy, cefdinir and bactrim.
  2. 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.
  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/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.
  5. 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 me or my healing, and making a strong investment in a positive social network (online and off).
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Trauma: A deeply distressing or disturbing experience

Anyone who’s ever experience one with me always said that I’m good in an emergency. I’m the first to organize, make a plan and execute. No time is wasted on freak outs or fear. And I agree, I enjoy being on my own team any time the shit hits the fan. But I’ll tell you what. This kind of survival spirit, it comes at a cost. And that cost is delayed emotional processing.

You see, I find myself in the early months of year 2 of late stage Lyme disease treatment and I am just now starting to feel the full impact of what’s happened to me. Of what I’ve lost.

I think at all points up until now, I was just enduring. I was living through it. Between the hearing loss, the vestibular challenges, the panic disorder, the weeks without sleeping, the mysterious traveling pain, the hundreds of doctor’s appointments, the conflicting information, finally the diagnosis, figuring out treatment, selling my home, changing my diet, learning about “herxing” and trying to understand how to keep myself at all functional… there was never room to think about what was lost, about what it all meant to my heart, to my soul.

My therapist and I did an exercise recently where he had me describe an illogical thought by saying what it was (“I am not safe”) and naming where it came from. Without even thinking, I blurted “from direct mother fucking trauma”.

Lyme disease has been nothing short of that: direct mother fucking trauma.

I’m not even sure I can quantify it now. Not yet. The best I can describe so far, my life… even the very heart of who I am… was torn down to rafter through this. I mean, 2 years ago I was doing crossfit 5x a week, I was working 60 hour weeks, I was going out with friends every single weekend, I was vivacious and witty and fun. And then suddenly there I am… homebound, dependent, terrified and very very isolated. FOR A YEAR. At the beginning of this, I was practicing walking a few yards at a time with my hiking sticks. I was missing cognitive function enough that I would get lost in my own neighborhood, and I faked my way through most conversations. I was truly sub-human. I understood, for the first time, how someone would really truly just want to die. At times, I would have accepted it without challenge.

Coming back to life after nearly a year of that… it’s… an unexplainable surreal experience. When you’ve lived through week long periods where you simply struggled to keep your last breath in your chest, your whole span of reality shifts.

Last night, I went to an old friend’s birthday party. About 20 or so of us met up at a Mexican restaurant and sang karaoke. True to form, the evening was raucous, loud, quick paced and booze fueled. This used to be my everyday life. And while I abstained from any alcohol, and was the only one performing “soberoke”… for just a few hours I felt like my old self again. I laughed. I joked. I kept up with stories. I sang several songs. I danced. I hugged the people who’d only ever known me as that girl. I stayed up late… I didn’t think about Lyme disease. And it didn’t hit me until I got home, until the man next to me was asleep and I was alone with reflection… how incredibly HEARTBROKEN I am that that isn’t my life anymore.

The tears just streamed.

They still are.

I’ll never get to go back to that life. Functionally, I’ll probably never get to go back to multiple whiskies, or late night junk food, to yelling across bars, to staying till close, to being part of every fun adventure my friends have. No, to stay in remission (when I get there) will take a lot of healthy habits. And that alone is enough to grieve. But what gets me the most is that I’ll never get to feel that INVINCIBLE ever again.  I’ll never feel completely safe, okay and full of possibility.

What Lyme brought into my life is close up knowledge of the kinds of horrors that are potentially – at any moment – just minutes away. Horrors of your betraying body. Horrors of your unsound mind. Horrors of so many friendships lost. Horrors of great loves that leave you. Horrors of baby carrying dreams that’ll now never be. Horrors of standing abandoned by modern medicine. Horrors of going bankrupt for treatment. Horrors of being misunderstood, isolated and alone.

No. I will never feel safe or okay again. At least not in the naive way that I used to. And this is right. This is good. This is enlightenment. This is the TRUTH. But damn if it doesn’t feel heavy on my shoulders right now.

I know this is a sign of healing. The emergency is ending. And so the feelings hit.

I know someday I probably will be okay again. I’ll be happy. I’ll develop a sense of trust. I’ll rewrite myself, my soul, and my heart. And I have no doubt, I will find happiness in this new life, this new me. Whatever and whoever that ends up being.

I guess the first step is to feel the pain of the loss.

And feeling it I am.

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