Wednesday, December 21, 2011

So, How Am I Feeling Now? An Update

Here we are, approaching the "one-year in treatment" mark, and I think an update is overdue—especially since my recent posts have focused more on Lyme issues at large than on my symptoms and recovery process.

Firstly, you may recall that I've been seeing two Lyme-literate MDs, alternating checkups between the two and incorporating both of their protocols. Well, one of them recently left the practice to move back to his hometown, so I'll be seeing his replacement in about one week. I've heard that she's both holistic and naturopathic, in addition to being an MD who knows Lyme, so I'm cautiously optimistic about her. 

At my appointment with her next week, I'll get the blood test results for my one-year follow-up. This test is the big daddy, the one where they run blood tests for everything from your head to your toe and compare it to the last (which was at the six-month point). So, I'll update my blog again next week with those results.

I do anticipate that my levels of thyroid, magnesium, iron, white blood cells, vitamin D, serotonin and other bodily necessities that were far below the normal range might have reached a more normal range, since I've been on supplements for all of them for nearly a year. But like I said, I'll have those results next week....eeeeeee! Can't wait.

Generally speaking, in terms of an overall update, I can't say I'm actually feeling healthier yet. There have been a few false alarms, times when I feel completely "normal" for a few days, but they never last. It's still ups and downs, with more time comprising severe fatigue than "normalcy". This, I've been told by many a source, is normal considering my experience. I was born with Lyme and I've been very sick for thirty years. There is no fast cure. There is only persistence and patience, and the body may take several years to both kill off the offenders and heal itself.

So in that sense, I can't say I feel better yet. But here's the key—feeling better isn't always synonymous with being healthier. 
The body may be producing more of a much-needed hormone, or regulating/detoxing itself better, while still a person feels ill. Here's why:

Simply put, the "correction" process is hard on the body. Resetting channels and signals and pathways in the body varies from exhausting to excruciating. The body is so used to its malfunctions that it suffers from its transitions. So, achieving health can actually make you feel worse, which I believe is what's been going on with me (especially since I'm resetting signals specifically in my brain). But it's all necessary, because the day will come, months or years down the road, when the body is done resetting and correcting itself and the person actually feels healthy.

I know a lot of people are hoping to hear that I'm close to recovered by now. I almost feel like I'm sort of disappointing them to say I'm not. But, I'm not disappointed. 
My journey hasn't been void of transition and growth. 

For instance, even without seeing the lab results yet, I know my body is healing in at least one way: I tolerate the B12 & glutatione injections much better now. While earlier this year the injections would render me so weak, foggy and debilitated, similar to being anesthetized, and  had to nap immediately upon receiving one, they now energize me! I've been told that this was because the shots mobilized so many built-up toxins (including metals) that my methylation (detox) pathways would become bombarded with toxins. But with all this repairing of my blood and methylation pathways over time, my body now reacts the way it's supposed to react to the B12 and glutathione.

Granted, the now-pleasant effects are temporary, and I only get the shot once or twice a month because it's ridiculously expensive, but I fully enjoy the feeling of happiness, calmness, clear-headedness and strength that they give me. To feel simultaneously calm and energetic has always seemed an oxymoron to me, until now. The injections are like an off switch for anxiety—that blend of nervous energy and fatigue—and an on switch for a peaceful, energetic strength.

I'm also finding myself generally better able to predict when a herxy day is coming. The pattern is usually as follows: immediately upon pulsing my ivermectin (
my main medication at the moment), and for up to twelve hours after taking it, I feel almost euphoric. Then, it seems, about twenty-four to thirty-six hours after taking ivermectin, I begin the downward decline that is my body killing microbes and parasites, which can last up to two days.

During this herxy period, I feel the bugs biting my skin from the inside as they struggle to die. Sometimes they so desperately seek refuge from the medication that they bite me so hard it feels like I'm being attacked by a swarm of red ants or mosquitoes. Also during this herxy period, as unrealistic as this sounds, I can see the microscopic borrelia swirling around inside my eyelids when I shut my eyes. Here are some pictures of the parasites and Lyme living inside me. (continued below photos)...


 Lyme (borrelia)


 Roundworm (egg)


As I start to herx (the bugs die), I feel incredibly toxic—weak, headachey, sore all over, tired, irritable—and have to do as much detoxing as possible to literally rid my body of dead bugs. (Sounds appetizing!) My main detox tools are at-home sauna therapy, epsom salt and baking soda baths, lots of oral binders including chlorella and charcoal, massage therapy and coffee enemas.

Experience has taught me that if I neglect to detox properly during the post-ivermectin herx, I end up bedridden and unable to perform simple tasks like talking on the phone or getting the mail. My body and brain both shut down. This also happens after I take too much cats claw or other anti-microbials. And this is one reason I still can't return to my career.

When I make plans, it's important to take this schedule into account. The worst time to make plans is approximately thirty-six hours after pulsing an anti-microbial or anti-parasitic. I'm still making mistakes and learning from them, like how I keep making plans in San Francisco in spite of better judgment. Driving from Palo Alto (where I live) to San Francisco and back can take up to two hours, not including time spent in the city. It always ends in a complete bodily shut-down, so I'm learning to just say no and stay local.

On another note, I've got a roommate now! She's another Lymie, around my age, who was living in Los Angeles and traveling north to see her Bay Area LLMD every couple of months. After a series of events in her life rendered her without a place to live, she moved into the guest room in my house. I have to say, after living alone for ten years, it's surprisingly not so difficult to have a roommate again, probably because we understand each other so well. But.....

Shortly after she moved in earlier this month, two discs in her back slipped out of place (not uncommon for Lymies, since Lyme degenerates the spine) and we ended up checking her into the ER at Stanford Hospital. She's been hospitalized in severe pain for a four days with a pinched sciatic nerve and a numb left leg, and in spite of two MRIs of her upper and lower back,
 multiple doctors are still baffled and unsure of how to proceed. Hopefully she'll be home (i.e. my home!) for Christmas, but we don't know yet.

Well, that's pretty much all the updating I've got. New blood tests on the way. New doctor. New roommate. Better understanding of the workings of my body. Making progress.

Merry Christmas and Happy Hanukkah and merry solstice and joyful love to everybody!

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