Wednesday, May 30, 2012

Hypersensitivity

Ever since I was a small child, I've been sensitive—to criticism, facial expressions, moods, drugs, sugar, alcohol, chemicals, and just about everything else. People's unkind words have had such a powerful ability to penetrate me that I've harbored many-a-resentment deep within my core, allowing the emotional pain to fester and eat me alive with potential to cause as much harm as, well, a parasite.

Now that I'm older, the emotional sensitivity has waned a bit—I still feel strong emotional reactions, but I manage them a lot better—while the physical sensitivity has blown up. By "physical sensitivity", I refer to everything outside the realm of emotion: foods, chemicals, radiation and the such. 


Why has the severity of my physical sensitivity seemingly switched rank with my emotional sensitivity? Can my healthier grip on emotions simply be explained by maturity? Then, why is my body suddenly less tolerant to a host of things I used to tolerate just fine? Looking back at the timeline of my life, it seems as though a rather dramatic shift toward substance intolerance began early last year—right after I started my Lyme treatment, which begs the question: did starting treatment suddenly cause my body to reject such substances?


Now for some disturbing, pathetic yet sometimes funny examples. 


Candy and Wine


I used to be a wine drinker. Specifically, white wine—especially chardonnay and riesling. Only about two years ago (which seems like a whole lifetime ago), I was singlehandedly drinking at least one to two bottles of wine per week. Granted, that's not an alarming "alcoholics anonymous" amount, but it was definitely a necessary crutch to get me through some stressful times. Wine gave me a happy high, a blissful calm, a joyous washing away of tension. Oh wine, I miss you sometimes.


I was always a lightweight drinker. Just a few sips of a drink and the warm fuzzies would begin. Some people have said it's because I'm thin, but my slimness is an illusion. At 5'8" with slim arms and legs, but a curvy bust, hips and thighs, I've weighed a consistent 147 pounds for years. I think my lightweight drunkenness tendency has more to do with my liver's inability to detoxify toxins than anything about being slim.


Anyway, I had my last alcoholic drink at a raucous party on December 31, 2010. But last fall, I boldly dared to take one sip (okay, it may have been more of a gulp than a sip) of my father's chardonnay when he was in town visiting. At that point, I had been alcohol-free for 10 months, and hardly expected anything from that taste but a palette-pleasing moment of savoriness.


One or two minutes after swallowing, I became overwhelmed by a simultaneous headache and urge to vomit. It didn't take long for the headache developed into a migraine and extreme fatigue. I didn't vomit, but I was nauseous for more than a day.


I really can't explain why such a small amount of wine—certainly a small fraction of what I used to tolerate just fine—gave me such a horrendous reaction, especially since I've never had such a reaction from even half a bottle of wine at once. I also don't think I was taking any medications at the time that interacted with alcohol. Somehow my body had developed an intolerance that I would soon learn expanded far beyond beverages.


About six months ago, one night while a friend was staying with me, we were watching TV and a Skittles commercial came on. "I have a big craving for Skittles right now!" I exclaimed. The next day, while stopped at a gas station, my friend bought me a bag of Skittles. Although a voice in my head told me, "Leila, you can't eat those, they're loaded with myriad toxins and dyes," I opened the pack and picked out a few of my favorite colors: a few reds and a couple oranges and yellows. I can't remember the exact number, but it was maybe a total of six Skittles.


I had one of the worst reactions I've ever had from anything. After an hour or two, I was dizzy, I couldn't stand, I couldn't think clearly or open my eyes, and worst of all, I was overcome by an epic sense of depression and despair. I could have hurt myself. Thankfully, I didn't. It was such a frightening feeling, as though a monster or alien had possessed my thoughts.


All from a small handful of Skittles? So bizarre. I used to eat those as a kid. Why does my body reject things now that I used to tolerate just fine?


Cosmetics


For as long as I can remember, I've had a hard time tolerating hairdye, which is why I switched from dye to henna a few years ago (the henna nicely covers my greys). 


Several years ago, I was dying my hair fire-engine red in my then-boyfriend's bathroom with the door shut so his roommates wouldn't see me. As soon as I finished applying the dye and piled my gooey crimson hair on top of my head, I noticed how stuffy and warm it had gotten in the bathroom. Suddenly I thought I was going to vomit, and then I grew very weak. Next thing I knew, my boyfriend's voice was calling out my name. I couldn't understand why he was waking me up, since—in my mind—I was peacefully sleeping in my bed. It turned out, I had fainted and was lying on the bathroom floor in what looked like a pool of blood.


What's more, I had fallen against the wall, so the dye on my hair had left a permanent red streak straight down the wall. As you can imagine, it looked like a murder scene!


These days, not only must I avoid hairdyes, I also avoid hair salons and nail salons. The fumes cause my nervous system to flare.


More recently, I've tried more heavy-duty cosmetics thinking I would tolerate them since millions of other women do. Last Christmas, I received a free bottle of Latisse, a liquid you paint onto the roots of your eyelashes to stimulate growth, and another time I applied an at-home skin peel to my upper back to remove some acne hyperpigmentation. Both products have been used at-home by millions of women with little-to-no side effects.


Well, the Latisse got into my eye (which is kind of inevitable), where it travelled down my tear duct into my sinuses, from where it traveled into my cheek tissue, and my whole face swelled up like a balloon. Both my upper and lower eyelids, my entire left cheek, the tip of my nose and the left half of my upper lip swelled up, and my entire upper lip was numb as though it had been injected with novacaine. (This reaction, I was told by Latisse, is "extremely rare" and in fact I'm in the product's only documented case I've been able to find on the Internet.)

The chemical peel, when applied as directed to my upper back, gave me a systemic reaction including such symptoms as hot flashes, vertigo, nausea, and the following strange incident: twelve hours after its application, I awoke from sleep burning up, walked into the bathroom, felt a ringing in my ears, and lay on the bathroom floor in a stunned, almost paralyzed bout of stupor for about half an hour before I was able to stand again. The next day, the skin on my back was burnt like teriyaki chicken.


Below are photos of my results with Latisse (left) and the chemical peel (right). Note: The products were used several months apart.




Supplements & Medications

One of my biggest frustrations throughout this process has been my sensitivity to the very medications that are supposed to be making me better. To an extent, the medications are supposed to make me feel worse—this I know. (It's called the Herxheimer effect, or "herx" for short, and it happens when you kill off a lot of bugs at once and it can be very hard on the body, but is ultimately beneficial.) But it's a whole other story when I react almost instantaneously to my pills, either because I'm allergic to them, they tear up my stomach, they put me to sleep, or they make me go crazy.

Then there's the issue that, for me, a little bit of any drug or supplement goes a long way. I can almost always take 1/4 the "normal" adult dose of anything and strongly feel its effects. In fact, I'm on a low dose of virtually everything I take. For several of the pills, I have to break off corners and take those. Several others call for daily doses of up to 10 capsules (or in the case of chlorella, twenty at once, three times daily). Every time, without fail, that I take whatever dose is indicated on the label, I become awfully ill. If I take more than four chlorella at a time (much less twenty!), I get diarrhea.

The doctors and naturopaths treating me seem to think I need to work up to higher doses in order to reach remission/recovery, but rather than becoming able to build up my dosage of anything over the last 16 months of treatment, the opposite has rung true—I can tolerate even less of everything than I used to. For instance, I used to tolerate two AdrenoMend capsules and one CORE capsule all at once, and now I can only tolerate one Adrenomend and half a CORE. I'm also starting to react poorly to sam-E, zinc, and some herbs that I always tolerated just fine.

This is infinitely frustrating. I don't see how I'll ever be able to defeat my ailments if I can't even manage the dose necessary for that defeat.

And it's not as simple as replacing my oral medications with intravenous ones. I actually tolerate my oral antibiotic (minocycline) fine; it's mostly the herbal, immune modulating, anti-inflammatory, and nutritional supplements that bother me.

Maybe it's a good thing that a little of everything goes a long way. Maybe everything (corners of pills included) is in fact working, and I just don't need much of it. If that's the case, I certainly save money this way!

Electromagnetic Fields and Radiation

Lately I've been having an especially difficult time handling radiation and man-made energetic frequencies (as opposed to earthly and human energetic vibrations). When I walk into a building with a lot of artificial light and wireless internet and whatever other frequencies they might use—like the lobby of a hospital, or Walmart, or CVS—again, I get a neurological reaction. My eyes hurt, I have a hard time standing (so I have to find a place to sit), and I get brain fog and irritability.

Cell phones are a huge source of aggravation for me. I can no longer hold a cell phone to my head without developing a stinging, buzzing headache on the side of my head where the phone is. Whenever I can't use speakerphone, or I forget my headset, and I'm forced to hold the phone to my head, I alternate from one side of my head to the other for as long as I can tolerate the headache on each side. What's interesting about this phenomenon is how we've all heard reports about the potential of cell phones to cause brain tumors, but most people don't actually feel anything from talking on their cell phone. So maybe, in this regard, my curse is actually a blessing in disguise: the stinging pain is my body's way of telling me, "This radiation is very bad for your brain, and in fact alters your DNA and promotes the growth of cancer cells."

I recently had to fight with Pacific Gas & Electric to remove the smart meters they had installed on the side of my house. It took a few months, and I had to pay an extra fee, but I won. They're gone.

It's so important to me that I limit all the radiation and electromagnetic fields to which I'm exposed, because they zap my energy.

Bottom Line

Kermit famously said, "It ain't easy being green." Well, green is the symbolic color of Lyme disease. And it just ain't easy living in a world where I'm bombarded by toxins everywhere I go. Sure, I can avoid cosmetics that contain chemicals, I can choose not to paint my fingernails or drink an alcoholic beverage. I can eat a clean diet, get plenty of sleep, and take small doses of my supplements. I can do as much as I can, as often as I can, to live my life in the way that best suits me.

But there are times when I have to be a normal member of society, especially because I have nobody to help me. There are big box stores and pharmacies and wireless networks and many other triggers I didn't even get around to in this entry, (like molds and loud noises, for example), which I just can't avoid. I can do my best, but my best sometimes feels like a sole soldier fighting a whole army.

Perhaps the biggest challenge of all is dealing with the judgments cast by other people. They don't understand why I react so strongly to all of the above, and quite frankly, neither do I. "Lyme disease" isn't an adequate answer. Besides, I've learned enough throughout this journey to know it's far more than just Lyme disease—but a host of cofactors including genetic predispositions—that account for my symptoms. So I never know how to explain it.

If only I could better understand what makes me so multi-facetedly sensitive, maybe I'd know what I could do to change it.

6 comments:

  1. You are right that it doesn't necessarily require the "standard" dose of something to be effective. I killed my Lyme with a rife machine, and had to start on the lowest power setting at the shortest time bc I had so violent a reaction to it. I gradually went up in both time and power over the course of three months, and by the time I hit full power and full time, I was done- the Lyme was all dead.
    In terms of environmental sensitivities, my recent carbon monoxide poisoning has made me very sensitive to florescent lights, especially in stores. I get panicky, short of breath, and very irritable. My mom suggested wearing sunglasses inside, and that has actually helped a lot.
    While these things are FAR from a good time, rest assured that when you are doing the most of what your body can handle for treatment, you are, indeed, treating your ailments fully.
    <3

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  2. You are my hero ... can't believe how parallel our experiences are and I commend you for being able to put them into words. I have the hardest time writing these emotions down and portraying how I am feeling in regards to this whole experience and you have been able to tell it just like it is! You are AMAZING! I thank you for sharing your story including your strengths, weaknesses, and the reality of this illness. I wish you nothing but the best. Thank You Leila. (<3 Holly)

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  3. wow! not to sound at all like i think you're making any of this up, i have plenty of the same issues that you have, but sometimes fearing something you think will give you a reaction, will actually make the reaction happen. like the skittles, you were already nervous about eating them.....mind/body stuff. I've read a lot about it. I'm very sensitive also. especially to noise. i have ears like a dog :) i also get queasy when I'm around a man or woman with too much perfume on. stay strong girl! you seem very strong :)

    Sipora

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  4. Hi Leila, At almost twice your age, this could be my story... so well written. May I share this link on my blog http://lymediseaseinsouthafrica.blogspot.com
    Thanks, Pam Thomson

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  5. Thanks for sharing all this. I have plenty of what you are describing, including the electrosensitivity. I am glad you are striving to become healthy. This encourages me to keep on. I am 58 years old. I never imagined I would be this ill by this age. I am very fortunate I can live with my sister. Our living expenses are low, so I can spend more on recovery. I am trying to get with it on the methylation repair. I get a blistering headache from the methylfolate and B-12. I do not have a doctor to guide me, so it is hard. I will keep on. I look to Dr. Benjamin Lynch's site for advice:) Take care:)

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