Friday, August 30, 2013

A Whole Lot of Unclear Answers

It's been awhile since my last entry, mostly due to an indecisiveness over what to write about—"should I discuss my new antibiotic, my new chirpractor, or more personal matters?" I've had trouble deciding, so I'll just include it all. Warning: this entry is gonna be a long one!

Life - Personal Matters

The perplexing thing about my experience this summer is that it's been so marked by contradiction. Concurrent with so much excitement and adventure have been the yo-yoing emotions of high highs and low lows. Achieving a sense of balance or stability has been a challenge, but I guess a certain level of that is to be expected the first few months in a new city by myself.

Also, ever since Tiggy died in July, I've been in a funk. Something hasn't been right with me on a biochemical level, so I just haven't been motivated to blog. The crisis in Syria isn't helping, since I've got scores of family members living in and around Damascus. We're all on the edge of our seats day in and day out.

And the excitement over moving into my new home has been marred by an unaccounted for delay by my movers in delivering my belongings. For six weeks, Liberty Relocation (whom I hired, who subsequently brokered out my move to Virgin Van Lines) has falsely claimed, each week, that my goods will be delivered "within three days". After expecting the delivery to arrive every week for six weeks, it became clear they were pathologically lying to me—and unable to provide any reason for the absurd delay. So I consulted with a lawyer who sent them a "warning" letter eight days ago which has gone ignored. Also being ignored are phone calls, so now I may have no option but to file suit.

The last thing my low-tolerance-for-stress self needs right now is to deal with a lawsuit. I just need my stuff. I've had to go out and buy a whole bunch of basic necessities that I otherwise already own. All things I have stored in boxes. With the movers. Yeah. I'm reeling.

But on the bright side, I have a quaint new home! And I'm back on long-term antibiotics for Lyme, for the first time in about a year (more on that in a sec). Also encouraging is that I'm getting out and making new friends, and I go for a brisk walk through the Green Belt about four days a week. I still love Knoxville and still feel like this move was the right choice—which is more important than anything. Everything else will fall into place with time.

So I'm just trying to be patient.

Lyme Stuff

I still feel the same as always. I have some great days, some awful days, and a majority of days that fall somewhere in between. 

As most of you know, I stopped treating the Lyme infection last year and opted instead to focus on a more gentle approach—some Cowden herbs, probiotics, and behavioral practices that are proven to boost health: meditation, stretching, staying hydrated, eating more greens and nutritious foods, moving my lymph, sleeping enough, and avoiding stress (easier said than done!).

I'd been down the hardcore treatment route a couple years ago and it had taken my life away from me. I knew that now wasn't the time for that—driving across country and buying a house. I needed all my physiological functions in tact. So I put off an intensive treatment for now, with the anticipation that I'd go down that road again in the future.

So, I wasn't actively pursuing a new antibiotic-based regimen for Lyme until I ended up in urgent care with strep throat about a month ago. The doctor prescribed a new-to-me antibiotic called Cefdinir (a.k.a Omnicef) to treat the strep infection.

Two days into the Cefdinir, I could feel something starting to shift in my brain. By the third or fourth day, I was feeling healthier than I had in months and possibly even years. It was one of the best reactions I've ever had to a medication, as virtually all my Lyme symptoms went away. I had energy, mental clarity, an upbeat mood, no aches or pains, and an overall sense that this is what a normal, healthy person feels like.

Then my supply ran out. The strep throat was long gone, so I couldn't get the doctor to refill it. So I consulted with my old LLMD (Lyme doctor) about my experience, and she confirmed that she regularly prescribes Cefdinir to her Lyme patients, as it kills borrelia. Aha! She felt it would be a good idea for me to continue it, so I've got a three-month (and possibly much longer) prescription for it now.

But here's the thing. When I started taking it the second time (after a week-long hiatus), it just didn't have the same effect on me. In fact, it's been making me herx this time around. The more I take it, the more brain fog I have. 

It's frustrating, but not altogether surprising. I can count on my fingers and toes the number of medications I've taken in the past that had the "Holy Shit, I feel AMAZING!" initial reaction, only to be proceeded by the "I've done a 180 and now I make you super TOXIC" reaction. That pattern should be expected now, I suppose.

Damn medications. They're just like my exes. Ha ha. 

Now I'm facing a familiar conundrum: Do I continue with something that interferes with my life in the short-term in hopes that it will benefit me in the long run, or do I make present functionality my top priority? It's such a tough call, especially since I'm entirely self-sufficient.

It's scary when I have one of my "episodes" where I'm on the floor in a fetal position and can't even make it to the toilet. I still have days like that sometimes. A couple weeks ago I had a night where I crawled into the bathtub and brushed my teeth on my knees because of a toxin-induced migraine that had spread to my nervous system. I know that a more intense protocol integrating methylation supplements and heavy metal chelation and candida cleansing (all things I need!) will render me helpless. I've been down that road before. And then who will feed me and my cats? Who will do my laundry and dishes? Who will clean the litter box?

I'm stuck in this seemingly never-ending battle to fight for my health yet live my life. I don't know what to do other than what I've been doing: continue with small doses of supplements that I can (mostly) tolerate. It's not the holy grail; it's not ideal, but it's getting enough of the job done.

A very common symptom of neurological Lyme disease (almost every late-stage Lymie I've met has it) is depersonalization/desensitization. I suffer from it so badly that I find myself seeking out adrenaline rushes just to feel something. This can be a dangerous behavior. I try to keep myself from doing anything too risky or downright foolish, but without excess adrenal stimulation, I feel like I'm going through life with some very numbed senses—I'm just a big walking blur, a cloud, fog.

Thankfully, every now and then, a day comes along where it feels like someone turned on the light switch to my senses, and I come alive. I don't know if medical science can ever permanently restore this function for me, so I just embrace it when it happens.

Thyroid Stuff 

Also issues (or I should say, "battles") as of late have been my thyroid and my scoliosis. First, the thyroid. I feel like my quest to heal my Hashimoto's has just taken me in some pretty exhausting circles over the last couple of years. One minute I'm hypothyroid, the next minute I'm hyperthyroid. One day my thyroid medication is making me feel sick, and the next day I go through withdrawals if I back off it. 

I've been on Armour, Naturethroid, and Synthroid each at different times in two and a half years, and I react to each of them. Again, brain stuff—mostly inflammation and/or encephalitis about thirty minutes after taking the pill. 

Further complicating the issue is that I have yet to have a "normal" thyroid blood test result. Most aggravating is the fact that I will yield a hypothyroid (low thyroid) lab result while suffering from symptoms of hyperthyroidism (high thyroid), such as high anxiety, insomnia, and inexplicable weight loss. 

My most recent test earlier this month is an example of that. My labs indicated low thyroid, but I could barely sleep at night and I had lost 15 pounds since moving to Tennessee (in spite of consuming at least 1500-2000 calories daily). So I am dumbfounded. In two years I have seen four endocrinologists and none of them have been able to explain this phenomenon to me. 

The closest explanation I got from a friend was, "Some people's 'normal' level is different than the range on the paper." Okay, got it. But what does that mean as far as treatment? Last week, my endocrinologist told me I can self-medicate with my thyroid supplement as I feel I need it, by lowering the dosage if I start feeling too hyper, and increasing it if I get lethargic. Alrighty. Sounds like a plan. Actually, it sounds like Russian roulette, but I guess that still counts as a plan.

Chiropractic Stuff

Finally I have something to talk about that doesn't revolve around the theme, "I don't know what the heck I'm doing."

Lucky for me, I randomly stumbled upon a savvy chiropractor located just a couple miles down the road from me (and insurance covers it!).

A little background: A big problem of mine since I reached puberty has been my scoliosis (as well as my rotated hips). I'm constantly off balance—it doesn't matter if I'm sitting, standing, or laying down; I feel like my whole body is twisted to the left. Furthermore, my right shoulder and hip are higher than my left, creating the illusion that my left leg is longer than my right leg when in reality my right leg just ends before my left leg does.

It can be very uncomfortable, not just on my left leg, but especially behind my right scapula, located in my upper back—where there is almost constant pain. I also cannot stand without spreading my legs wide and cannot sit on backless stools/chairs.

According to my x-rays, I lean approximately 32% to the left:



 


My new chiropractor is confident he can not only relieve my symptoms but also provide preventative care so that I don't end up a twisted up, hunched-back old lady with degenerated discs stacked atop each other like wrecked cars.

I admit, it's a scary thought that my condition has the ability to worsen over time. Where will that leave me in twenty years?

I sincerely, deeply hope that the adjustments (cracking of my back), exercises (meant to build muscle and strength where I'm weak), and massage/inversion tables will be effective.

Thanks for following my blog! Until next time...

3 comments:

  1. Thyroid Stuff is very bad. In it body are get swell. Pain is regular in you body.It is just because of irregular diet.

    Aaron |
    Mobile Massage

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    Replies
    1. Symptoms of hyperthyroid when you are actually low could be low iron, ferritin, too much RT3, and low adrenal function. Very frustrating I know as I have Hashis.

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  2. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

    ReplyDelete