Treatment Recap: Month 5 – Something is STILL working

I’m counting my lucky stars, big time. My good health that began in month 4 has continued through month 5! I can hardly believe it. Although, it makes sense. My doctor and I didn’t change much in my protocol this month, only increased the dosage of the last antibiotic I was able to increase (I’m now double strength on Bactrim).

Overall, I feel really great. I mean, for a healthy regular non-Lyme human being I probably feel “pretty good”, but for someone treating late-stage Lyme, I feel like a relative Olympic qualifier!

I mean really: I sleep pretty peacefully for 6 or 7 hours in a row usually. And with the exception of the full moon, I was without any nightmares or night terrors this month. I am able to work 10, 11, even 12 hours days without any increase in my symptoms! (Now, take this with a grain of salt. I’m a weirdo – I’ve been measuring my moods on my new Spire and I only ever experience “calm” and “focus” in the office, never “tension”; so I think my ability to tolerate work is really down to the fact that this is a really emotionally enjoyable experience for me, I’m not white knuckling through anything here.) And my very favorite gain of all has been that I am now able to walk much further distances with relative ease. Every morning I walk about 1.5 miles to work, and every night I make the same trek  home – up steep steep city hills. In fact, I’m averaging 9-10k steps a day measured on my Spire! And I still have energy after work and my foot commute to stroll around with each of my dogs and make a simple dinner. WOW!! I think I may even be doing more than some healthy people are these days.

I wasn’t without reminders that I’m still sick though, that’s for sure. The first was my 10-day break from doxycycline. I experienced an increase of some symptoms while off meds, and I herxed a bit for sure getting back on. That lets me know there’s plenty of bugs still being killed. The second reminder was when I tried to reduce my dependence on a muscle relaxer I’ve been taking since before my Lyme diagnosis. I dropped the Bacofen from 10mg 2x a day to just 1x a day and in crept my jaw pain, neck stiffness and muscle knots in my back. Bummer! The pain from those muscle contractions was just really super distracting and misery inducing, so I went back up to my previous dose and the symptoms are well managed again. The third reminder was during our our recent full moon,  I had some increase in brain fog / word confusion symptoms as well as nightmares and fight/flight for about 18 hours – such a strange connection there. And lastly, I struggled with my health as I went through a period of kind of extreme stress. The following was ALL crammed into a single week: 1) a trip home from Mexico that was more challenging than expected (think border delays, missed flights and flight hopping home on standby)  2) my disaster of a birthday complete with emotional breakdown, 3) a couple days herxing while I got back on meds post vacation, 4) a full week’s work crammed into two 12-hour work days and 5) helping my boyfriend through his rather invasive and difficult hip surgery. Makes me tired just reading that list. I definitely saw an increase in my symptoms – particularly in pain symptoms – as I flirted with my absolute stress load breaking point. BUT each of these reminders were fairly transient states that moved along quickly, and as a whole they felt like very minor exceptions to a month that was filled almost exclusively with feeling just like my self.

I really think the only thing I’m missing from my old life at this point is the ability to exercise vigorously like I used to. I still miss weight lifting. So far my doctors have made me promise I wouldn’t even try to exercise yet, and I’ve kept my word. But I am walking just a ton, and I am hoping to try a “gentle yoga” class in December and see how that goes. This is already miles and miles and miles better than I was just a few months ago.

For completeness sake, let’s do the list I type up for every treatment recap post! I feel like it’s getting real small now.

Things I struggle with lately include:

  • Poor vision – but most days I’m about 80% with my glasses on and have felt comfortable driving at night even (I’m using a Taurine supplement, 1000mg 2x a day)
  • Ringing ears – nothing has dented this yet
  • I still feel a little too hyper mentally most of the time; I wake up early and with a racing mind. It can be hard to get back to sleep.
  • I still have a very low body temp and cold hands (noticing it more now that winter weather is here)
  • NEW: I notice my lymph nodes are swollen and sore… collecting dead bug bodies?

Things I noticed less of this month:

  • Stiff neck
  • Numbness in my hands
  • Nightmares and night terrors
  • Foot pain (Bactrim is killing that Bartonella!)
  • Joint pain
  • Dizziness / feeling “off” when out and about

Not much changed in my treatment protocol this month, just more of the same. For those looking to compare notes, here’s a list of the things I believe are most therapeutic for me:

  • I am treating Lyme and Bartonella directly with antibiotics and supplements (current abx = Bactrim, cefdinir, doxy)
  • I also completed LymeStop 9 weeks ago
  • I have balanced my thyroid hormones using T3 only
  • I am eating a Paleo-ish diet, high alkaline, low glycemic
  • I *never* ever eat dairy, eggs, gluten or sugar
  • I drink ~32oz of fresh organic green vegetable juice a day
  • I drink probably 1/2 cup of apple cider vinegar every day mixed in water and my veggie juice
  • I take detox baths ~4x per week and drink lemon water daily
  • I keep VERY well hydrated and supplement my electrolytes with Nuun tablets
  • I’m building up my emotional health in 3 ways:
    1. I’m using schema therapy to change my thought patterns around self sacrifice (people pleasing)
    2. I am working on expressing repressed and previously unrecognized emotions
    3. I’m learning to recognize and articulate my own personal boundaries
  • I meditate and deliberately cultivate gratitude and calm (Spire is a new part of this for me – fun tool!)

Even the aesthetic side of Lyme things are improving. I got some new jeans that fit my new, slimmer frame (that was a HUGE confidence boost). My hair is growing back and so far it doesn’t have any bald patches or broken thin bits. I’ve been breakout free and, thanks to investment in a Clarisonic Mia 2 cleanser brush, I’ve not struggled nearly as much with dryness or scaling on my face. Heck, it’s even pretty dark out here in our Seattle winters, so I don’t have to don any dorky sunshade hats or gloves!

IMG_6473 (1)

I just feel like I’ve gotten my groove back. I hope to continue to make some improvement as I treat Lyme & Co, but really, if I had to stay right here at this level for the rest of my life, I’d be very very pleased. You know… if it eventually could cost less than $2,000 a month to maintain…. 🙂

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10 thoughts on “Treatment Recap: Month 5 – Something is STILL working

  1. Glad to hear this! Do you mind me asking you how you were first diagnosed? I am currently not well and usually I am super healthy. I’ll try to give a short version of the story. I’m a teacher and November 11 as I taught there were bugs. One was on my arm yet I didn’t know what they were until later. Turns out they were German roaches ( may just be a coincidence) I moved all of my classes for the rest of the day and later that afternoon I started to get a horrible pain on left side of my body , joint pains and chills down my back like I had he flu. since I had just found out that I was pregnant, I went to the doctor who sent me to the ER. Turns out I would have a chemical pregnancy two days later. I was sent back to the ER three days later bc the joint pain and chills just got worse. After a ton of blood work and X-rays on my back, the only thing that came back irregular was my crp protein level was elevated so it will be rechecked in a week. Since then, my jaw and throat are so tighter and hurt. An ent told me it is tmj from anxiety and stress. But I feel like it’s more. I have random joint pain and chills still although not all the time. My vision gets blurry and I feel disorientated. Last night I woke up in the middle of the night feeling like my throat was closing. I get itchy everywhere but no rash. I’m always tired. I was tested two weeks ago twice for lyme as every doctor first says that. They were negative. I reached out to my doctor bc my throat burns sometimes. I am thinking I need to see a rheumatologist, maybe throat X-ray or cat scan ? Maybe retest for lyme ? I know you aren’t a doctor but I guess I wanted to know how you found out – thanks again ! Sorry for the long post and I wish you the best of luck and health.

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    • Oh man, I can certainly see why they’re suspecting Lyme. Those are classic symptoms. I’m so glad you’re still looking into it, most standard Lyme tests are only about 40% sensitivity. It’s important to see a doctor known to be “lyme literate” and get a more sensitive test. Lyme can even be diagnosed without a positive result just on symptoms alone… some people are so afflicted by it that their immune systems can’t even make the antibodies (which is what the tests check for). Check out this blog I wrote about how to get diagnosed and where to get info: https://karlafightslyme.wordpress.com/2015/10/16/think-you-might-have-lyme/. As for me, my story is very similar to yours… developed gradually a bunch of symptoms that were diagnosed as many different things (TMJD was one of them) and i just didn’t take no for an answer. Finally I read a blog and left a comment just like yours, I learned about the igenex test and asked my doctor about that… and I lit it up like a Christmas tree. Now I’m treating and doing better. My whole story is here: https://karlafightslyme.wordpress.com/2015/10/16/think-you-might-have-lyme/. Feel free to stay in touch!! I’d be happy to help however I can.

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      • Thank you so much for this! Although some people think I’m “crazy” I can’t take no for an answer. If indeed it is lyme, I really want to get it under control sooner than later as I hope to have more children. I’m going to ask my doctor about that test. Thank you so much and I will check out more of your blog when my son naps later. ( I currently have been given the following diagnosis from different doctors: miscarriage side effects(hormonal) , tmj, anxiety, and today pharyngitis…

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      • Of course, I am happy to help. A blog saved me and it’s the sole reason I keep this one updated. Lyme is definitely known to impact hormones… even cause miscarriages.It definitely causes TMJD, anxiety (especially panic, or what I call fight / flight attacks). I’m not familiar with Pharyngitis but I had a tightness and burning in my throat, and difficulty swallowing at my worst. My blogs are long, apologies 🙂 Tough to squeeze in as much as I want to share. But this is a quick list of the symptoms I experienced at first: https://karlafightslyme.wordpress.com/2015/06/19/my-big-long-list-of-symptoms-2/. I think you’ll relate to much there. Sending you all the luck. Let me know how it goes.

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  2. Karla,

    So glad to here that the improvement is ongoing! That’s fantastic and you’re progress is so uplifting to those of us sharing the struggle.

    I’m wondering two things, have you been continuing the Dynamic Health protocol and who have you been using as your Lyme literate doc in Seattle?

    My son has decided to go back on antibiotics despite the fact that it reeked havoc on his gut a while back. The new doc we just visited wants him to take even more supplements on top of his Tony Smith supplements…it can get so overwhelming. Oh well….

    Keep up the the fight. We’re all rooting for you!

    Megan

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    • Thanks Megan. I’m actually having a bit of a downturn at the moment. Of course right after I post this 🙂
      I ended up not using any of the LymeStop supplements. Frankly, the ingredients of Many of them scared me. My GABA support, for example, had lethal doses of manganese in it. I asked the doc and he said my “body wanted it”. I realized that while I trust muscle testing for diagnosis and even supplement necessity to a certain extent, I didn’t trust it for dosage or specific combination ingredients. The few I did try I didn’t respond well too. So all that combined with how difficult it was to manage the number of things I was on, I quit almost right away.
      I believe it’s possible LymeStop helped, but I don’t believe it enough to forgo other treatment. So I understand completely wanting to get your son back on antibiotics. Wishing you all the luck for a healthy gut this time!

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