I saw my Lyme doctor a couple days ago after a two-month hiatus--during which time I underwent Stage One of treatment. About three weeks ago, he sent me into the lab to get more bloodwork done.
"How've you been feeling?" he asks right away.
"Pretty bad." He asks me to elaborate. "Well," I say, "Lots of brain fog, fatigue, weakness, irritability..." I go into more detail as he jots notes onto his college-ruled scholarly pad.
"I'm dying of anticipation here!" I finally exclaim, cracking a smile. "Can you just tell me if I have babesia or other co-infections? Look... I'm trembling!" My heart races as I nervously laugh and try to maintain my act of sanity.
It's the moment of truth.
"It looks like you were negative for babesia, negative for bartonella, and negative for ehrlechia," he slowly announces while eyeing his folder with doctorly caution.
"Negative for all? I'm surprised," I say as I try to process what this means.
Then he explains that the tests aren't accurate. These tick-borne parasites don't always show up in the blood test, especially because they go through life cycles. If you test during a lull in their cycle, you might not get any parasites in the blood sample they take.
My sister tested positive for babesia, and she and I were bitten by the same colony of ticks in the same 10' x 10' area of the forest, so this leads me to believe I probably do have babesia. But since it hasn't been confirmed with any certainty that I do or don't have parasites, we're going to shelf that issue for the time being. I decide I'm not going to put much thought into it for now.
There are more pressing things of concern that turn up in my blood, anyway. For instance, my Natural Killer Cells are dangerously low. With a "normal" range of 8-170 (with higher numbers indicating better health, as I understand it), my Natural Killer Cell count comprises a measly 6. Yes, one digit--six.
A fantasy bubble pops out of my head like you see in cartoons. In it, I'm in grade school again. We have to share with the class our level of Natural Killer Cells, only they're determined on a healthy scale of 1-10 (a more standard scale). Other kids are boasting that theirs are 8s and 9s. One sickly child coughs and sputters, "Mine are a 3."
Now it's my turn and I have to tell the class I don't fall within the range of 1-10. For a second, they wonder if I somehow garnered bonus points that pushed me over, into an envious 11. But the look on my face gives it away.
"You're a NEGATIVE number!" belts one particularly cruel classmate, and the room fills with laughter. I bow my head in shame..... they're right, I'm a negative number.
My fantasy bubble bursts as my doctor starts to explain the function of Natural Killer Cells. He says something about "cell-mediated immunity" and uses the word "intra-cellular" which means living within cells. As he starts to ramble about most bacterial infections living outside our cells, I gather that Lyme disease gets inside our cells.
Here's something the famed Lyme doctor Ken Singleton (not my doctor) writes about Natural Killer (NK) cells:
"NK cells are perhaps the most lethal weapon in our innate system’s arsenal against Lyme disease and related co-infections. NK cells are able to identify foreigners that are 'not-self ' and instantly destroy them on contact in defense of 'self.' The foreign invaders could be infectious in nature or malignant tumors. The NK cells in our bodies are absolutely critical to our survival upon exposure to any of these invaders. Because of this fact, we should be doing all that we can to support these immune system 'warriors.' ... Many Lyme-aware doctors believe that the NK cell is the major key to a successful outcome with Lyme treatment."
Thanks, Ken. Now I kind of understand.
My doctor then suggests I get a gamma globulin shot to boost my NK cells. He also prescribes something called Fibronex to help break up my "hyper-coagulable state" to allow my medications to better access the infections that are hiding under a sheath in my blood. This is all Lyme-speak that's over my artistic head.
He suggests that I keep taking my minocycline antibiotic, the cumanda and samento anti-virals, and the other immune-boosting supplements I've been taking. But before I leave, he adds Ferretin to the mix (a component of iron for which I tested low) and increases my Armour thyroid.
Minutes after I receive the gamma globin shot, I'm sitting in my car and feel a rush of endorphins akin to when I drink a latte. I'm energized and feel giddy--so giddy, in fact, that I'm smiling and laughing for no reason. But the feeling doesn't last long. For the remainder of the day, I have heartburn and mild nausea. That night, I don't sleep well because I'm edgy and anxious, again like I'd had a latte, and I'm also sneezing an abnormal amount.
But by the time I wake up, I'm feeling better than I have in days. Maybe it's the gamma globulin shot taking effect, or maybe it's psychosomatic, but for the last two days I've felt a marked improvement in my mood and my brain's clarity. It's like I've really turned a corner.
It's a ray of sunshine in what's been an otherwise dismal phase.
Saturday, March 26, 2011
Monday, March 21, 2011
Anti-Social, But Not Bored
My world has become very small, and I like it that way.
But nobody needs to be concerned about me going off the deep end right now. Really, I'm fine. I've been feeling awful physically due to treatment, but I'm not going to go off the deep end--that is, unless another person tries to tell me what I should or shouldn't be doing. In that case, I may just turn off my phone and computer and become even more reclusive than I already am :)
It's been a rough last couple of weeks, with my bad moments far outnumbering my good ones. Luckily, I have the luxury of sleeping whenever I choose. (Well, I can't always fall asleep when I choose, but I can at least lay in bed with my kitties and listen to what's become a non-stop torrent of rain, while attempting to reach a state of unconsciousness.)
I think I'm about six weeks into treatment (although things like counting and keeping track of dates can be a challenge). The side effects just keep getting worse with time. Nobody told me when I started this process, "Each week will get progressively worse until you reach week __ at which point you'll start to feel relief." Well, fill in that blank with at least a number six, and hopefully not much higher of a number, because this is pretty rough right now.
I've attempted very few social outings recently, with good reason. Socializing is incredibly difficult for me right now. Both my brain and body are as weak as ever, but my brain is suffering the majority of the ill effects. With heavy brain fog, new dyslexic tendencies, difficulty speaking aloud, chronic headaches, heightened anxiety, and inability to focus on topics (such as conversation), I wouldn't exactly say I'm in prime shape for social fraternization. So I limit it to texting, short phone calls, and laid back, less frequent outings.
As I've been telling people of these struggles recently, I've raised a few eyebrows: "You write fine, though. We can't tell you're struggling with communication." I don't know how else to explain it than to tell them that writing is an entirely different feat than talking.
For one, I can pause as often as I want when I type. (Imagine me pausing a lot in speech. It's awkward.) Also, when I type the incorrect word, as I often do, the backspace key is available.
Then there's the whole physical act of speech. Anyone who's remotely familiar with speech pathology will tell you that verbalizing a thought is a different physiological act than writing a thought. Since I'm not a speech expert, I can't get into the technical explanation of why typing certain words is far easier than saying them aloud, but there's an absolute physical mechanism that drives the distinction of these varying forces.
We can take the speech issue even further by dividing it between talking on the phone and talking in person. Talking on the phone is easier because I don't have to look someone in the eye or make facial expressions to communicate. Those two things are challenging right now because the parts of my brain that mobilize communication nuances (eyesight, facial expression) are under attack, big-time.
Normally vivacious, outgoing, and socially unabashed, you can imagine that if I were to face a social task as trying as a job interview while in my current state, I would come across as none of those things. I'd be disconnected, awkward, unavailable and aloof. Yes, it's a really rough week. I hope this passes soon.
Yesterday I attempted a few hours with my closest girlfriend. Since she knows me better than most of my friends--not to mention is naturally gifted with a talent of keen intuition and sensitivity--she was able to note within minutes that I was far from my normal self. She said I seemed nervous, that I talked differently, and even that I "look[ed] like a different person."
Yeah. There's a war going on in my body. It's taken over Leila, and Leila is temporarily missing.
Another friend expressed her concern that, since I'm not employed, I will become depressed. Her implication is that I have too little to do, and this lack of "work" will affect my mood. While I appreciate her clear concern and care, I know she can't begin to understand where I'm coming from. I wish there was a way I could make her understand that I have far more work than I can handle right now, and even though I'm supposed to be destressing, I'm still overwhelmed and stressed more than she could know.
I can't imagine actually working right now, because my attention span is so short, and I feel random bouts of unpredictable illness that render me dysfunctional. But, I still stay busy in many ways:
Any housewife can tell you there's always laundry to be done, dishes in the sink, floors to be swept, and surfaces to scrub. And any pet owner will tell you there are always hungry mouths to be fed, litter boxes to scoop, pet hair to get off furniture, and messes to be cleaned up. These daily tasks honestly take a lot of my time and energy (but, of course, not all of it).
I've also been dealing with my insurance company, filing claims and paying numerous bills that relate to my Lyme disease tests. As a homeowner without roommates, it seems like I'm always doing something relating to home ownership as well, whether related to the financial aspect or the labor of upkeeps themselves.
On the fun side, I've put countless hours into my back yard, landscaping it and planting new flowers and trees. And I'm still practicing music with my band mates a few times a month. That gets me out of the house and requires me to focus, and singing is therapeutic.
And I've been cooking, which requires grocery shopping, meal planning, and lots of labor and clean-up. Three meals a day, and snacks to eat with my pills so I've never got an empty stomach.
And I still have boxes from my move (last October) that require finding places for the useless crap I've accumulated over the years (half of it is going to charity), but the organizational process is exhausting nonetheless.
And I contacted a cat rescue and had them pick up a stray living in my yard (she went to a great home).
And I'm trying to get out for walks when it's not raining.
And to keep updating my Facebook page (one of the few places where I "socialize" with friends and acquaintances).
And I'm making trips to the post office.
And taxes had to get done.
And at the end of the day, I may or may not lay on the couch and watch a TV show. Or read a book.
And spend hours trying to fall asleep.
So, dear friends, do not worry that I will become depressed out of not working enough. My To-Do list is full and has overflowed onto the back side of the page.
If there's any reason I'd become depressed, it's if this misery drags on for so long that I forget what it's like to feel any semblance of health.
Indeed, I'm keeping my circle of friends smaller these days. I'm a far cry from the social butterfly I was in my early twenties. It's much easier to stay close to the few that understand why I won't be drinking a beer or a glass of wine, or attending parties, or going on trips with them to Tahoe or Vegas, or following up on job leads they're emailing me. I appreciate that all these things come from good places and kind hearts, but none of it is possible right now. Nope, not even a glass of wine.
My house, my cats and my yard make me feel relaxed and safe, and that's all I need right now. I just need to get through this phase.
But nobody needs to be concerned about me going off the deep end right now. Really, I'm fine. I've been feeling awful physically due to treatment, but I'm not going to go off the deep end--that is, unless another person tries to tell me what I should or shouldn't be doing. In that case, I may just turn off my phone and computer and become even more reclusive than I already am :)
It's been a rough last couple of weeks, with my bad moments far outnumbering my good ones. Luckily, I have the luxury of sleeping whenever I choose. (Well, I can't always fall asleep when I choose, but I can at least lay in bed with my kitties and listen to what's become a non-stop torrent of rain, while attempting to reach a state of unconsciousness.)
I think I'm about six weeks into treatment (although things like counting and keeping track of dates can be a challenge). The side effects just keep getting worse with time. Nobody told me when I started this process, "Each week will get progressively worse until you reach week __ at which point you'll start to feel relief." Well, fill in that blank with at least a number six, and hopefully not much higher of a number, because this is pretty rough right now.
I've attempted very few social outings recently, with good reason. Socializing is incredibly difficult for me right now. Both my brain and body are as weak as ever, but my brain is suffering the majority of the ill effects. With heavy brain fog, new dyslexic tendencies, difficulty speaking aloud, chronic headaches, heightened anxiety, and inability to focus on topics (such as conversation), I wouldn't exactly say I'm in prime shape for social fraternization. So I limit it to texting, short phone calls, and laid back, less frequent outings.
As I've been telling people of these struggles recently, I've raised a few eyebrows: "You write fine, though. We can't tell you're struggling with communication." I don't know how else to explain it than to tell them that writing is an entirely different feat than talking.
For one, I can pause as often as I want when I type. (Imagine me pausing a lot in speech. It's awkward.) Also, when I type the incorrect word, as I often do, the backspace key is available.
Then there's the whole physical act of speech. Anyone who's remotely familiar with speech pathology will tell you that verbalizing a thought is a different physiological act than writing a thought. Since I'm not a speech expert, I can't get into the technical explanation of why typing certain words is far easier than saying them aloud, but there's an absolute physical mechanism that drives the distinction of these varying forces.
We can take the speech issue even further by dividing it between talking on the phone and talking in person. Talking on the phone is easier because I don't have to look someone in the eye or make facial expressions to communicate. Those two things are challenging right now because the parts of my brain that mobilize communication nuances (eyesight, facial expression) are under attack, big-time.
Normally vivacious, outgoing, and socially unabashed, you can imagine that if I were to face a social task as trying as a job interview while in my current state, I would come across as none of those things. I'd be disconnected, awkward, unavailable and aloof. Yes, it's a really rough week. I hope this passes soon.
Yesterday I attempted a few hours with my closest girlfriend. Since she knows me better than most of my friends--not to mention is naturally gifted with a talent of keen intuition and sensitivity--she was able to note within minutes that I was far from my normal self. She said I seemed nervous, that I talked differently, and even that I "look[ed] like a different person."
Yeah. There's a war going on in my body. It's taken over Leila, and Leila is temporarily missing.
Another friend expressed her concern that, since I'm not employed, I will become depressed. Her implication is that I have too little to do, and this lack of "work" will affect my mood. While I appreciate her clear concern and care, I know she can't begin to understand where I'm coming from. I wish there was a way I could make her understand that I have far more work than I can handle right now, and even though I'm supposed to be destressing, I'm still overwhelmed and stressed more than she could know.
I can't imagine actually working right now, because my attention span is so short, and I feel random bouts of unpredictable illness that render me dysfunctional. But, I still stay busy in many ways:
Any housewife can tell you there's always laundry to be done, dishes in the sink, floors to be swept, and surfaces to scrub. And any pet owner will tell you there are always hungry mouths to be fed, litter boxes to scoop, pet hair to get off furniture, and messes to be cleaned up. These daily tasks honestly take a lot of my time and energy (but, of course, not all of it).
I've also been dealing with my insurance company, filing claims and paying numerous bills that relate to my Lyme disease tests. As a homeowner without roommates, it seems like I'm always doing something relating to home ownership as well, whether related to the financial aspect or the labor of upkeeps themselves.
On the fun side, I've put countless hours into my back yard, landscaping it and planting new flowers and trees. And I'm still practicing music with my band mates a few times a month. That gets me out of the house and requires me to focus, and singing is therapeutic.
And I've been cooking, which requires grocery shopping, meal planning, and lots of labor and clean-up. Three meals a day, and snacks to eat with my pills so I've never got an empty stomach.
And I still have boxes from my move (last October) that require finding places for the useless crap I've accumulated over the years (half of it is going to charity), but the organizational process is exhausting nonetheless.
And I contacted a cat rescue and had them pick up a stray living in my yard (she went to a great home).
And I'm trying to get out for walks when it's not raining.
And to keep updating my Facebook page (one of the few places where I "socialize" with friends and acquaintances).
And I'm making trips to the post office.
And taxes had to get done.
And at the end of the day, I may or may not lay on the couch and watch a TV show. Or read a book.
And spend hours trying to fall asleep.
So, dear friends, do not worry that I will become depressed out of not working enough. My To-Do list is full and has overflowed onto the back side of the page.
If there's any reason I'd become depressed, it's if this misery drags on for so long that I forget what it's like to feel any semblance of health.
Indeed, I'm keeping my circle of friends smaller these days. I'm a far cry from the social butterfly I was in my early twenties. It's much easier to stay close to the few that understand why I won't be drinking a beer or a glass of wine, or attending parties, or going on trips with them to Tahoe or Vegas, or following up on job leads they're emailing me. I appreciate that all these things come from good places and kind hearts, but none of it is possible right now. Nope, not even a glass of wine.
My house, my cats and my yard make me feel relaxed and safe, and that's all I need right now. I just need to get through this phase.
Friday, March 11, 2011
Three Great Lyme Videos & One Link
And a page with a video that I can't embed into my blog. This woman's story is amazing:
My Natural Recovery from Lyme & Vaccine Damage - NaturalNews.tv
Thursday, March 10, 2011
My Twenties
On January 25, 2011, I wrote a blog entry entitled Historical Timeline of Symptoms, which described in great detail the various chronic illnesses and symptoms I've endured in my life, ever since I was infected with Lyme disease as a young child. However, I stopped short of detailing what my adult years have been like. Thus I've been inspired to write a similar, highly-detailed entry on my 20s. Incidentally the timing couldn't be better, as my twenties come to a close later this year. (Hopefully, then, I can say my health turned around dramatically by the start of my thirties!)
Before you start reading this post, I'd encourage you to read the one I link to above. It will help set the scene on what's ailed me, not to mention leads into my twenties in chronological order.
At twenty-one, fresh out of college with a bachelor's degree in journalism, I desired an adventure bigger than what my life could give me in Texas. Filled with bad memories, that state was only a constant reminder of ex-boyfriends I'd yet to get over, and my parents, who at that time were starting the divorce process. At that time, I was chronically ill with nasal "allergies" and "sinusitis", a sensitive stomach that caused bouts of nausea, and anxiety disorder that induced panic attacks. Furthermore, I was dizzy and light-headed on a regular basis, and frequently felt overly cold or overly hot (never a comfortable temperature).
Still, my health was stable, and doctors deemed me as "perfectly healthy", so I didn't let my malaise stop me from doing what I'd dreamt of doing: moving to California.
On February 7th, 2003, I pulled out of my parents' driveway in Dallas, my Toyota Camry filled to the brim with clothing, music, books, decor, and the most valuable of all: my two cats. For the next three days, I trekked directly west, then sharply north, until I arrived in the Bay Area. The drive was liberating, to say the least. Crossing state lines brought about a jubilant sense of excitement--I felt like I was Lewis and Clark, or an 1850 gold-rush miner, seeing brand new places and filling empty pages in my book of life!!
As is still the case, whenever I'm overly excited, flooding my brain with endorphins, adrenaline, dopamine and serotonin--yes, all of the above together like a stew--well, my chronic symptoms take a back seat. Perhaps that's why I consider myself such an adrenaline junkie. For those moments, I don't notice that I'm sick.
New chronic illnesses, some of which may sound laughable, started to creep up in my twenties. For one, I started to catch myself breathing very shallowly--quick, shallow breaths became my standard mode of breathing, with heavy sighs mixed in. In 2004, I saw a doctor about it. She told me it was just anxiety. (I've since learned that many of us Lymies share that common, bizarre manner of breathing).
I also started to notice, in my 20s, that my skin color gradually turned a slight hue of greenish gray, almost like a sage green, with undereye circles so dark that if I left the apartment without concealer under my eyes, people actually mistook the circles for bruises or black eyes. (Concealer became an absolute-must). Also related to my skin color, and in my opinion the most fascinating of all, my skin stopped having the ability to tan. Whereas I'd been capable of turning very, very dark bronze from childhood through my teen years, I found that in my 20s, no matter how much sun exposure I got--on trips to Mexico, Texas, or the Middle East--I couldn't achieve even half of the tan of the past. Nobody has been able to explain this one to me, so if anyone has an explanation, I'd love to know it. (I'm aware that our skin contains melanin which produces pigment, so perhaps a melanin deficiency is related to this?) Oh, and the sun also started making me incredibly weak. It got to the point a few times that I think I actually suffered sunstroke from minimal exposure to the sun. I'd also like to understand why that started to happen. I'm sure it's related to the Lyme.
Then other weird things started happening.... I started getting food poisoning unlike anything I'd ever had before. Up until my 20s, I'd vomited a number of times, all of the episodes being over soon after they started. But in my 20s, I've had a handful of episodes of vomiting that have lasted 8 hours or more and ended with me in the emergency room requiring i.v. fluids.
Then there were the bladder and cervical abnormalities. For several years, I suffered from non-bacterial interstitial cystitis, which means a whole lot of nothing really: the same symptoms of a bladder infection, but with no known cause. At times, the doctors found bacteria in my urine samples, but more and more often, they ceased to identify any bacteria. At 25, I had to get my urethra dilated because its narrowness was said to be causing the symptoms. It wasn't. And the urethra dilation didn't help. My pap smears also started showing up as "abnormal" due to unknown causes when I was about 25. Imagine hearing your ob/gyn tell you that your pap showed cellular abnormalities that, over and over, couldn't be determined upon further testing. It wasn't cancer, AIDS or STDs... just "abnormal" with no further info. Awesome.
Oh, 25 must have been the magic age for me! Because the single worst illness of my life happened at--you guessed it--age 25. I'm talking about mono. This one was the bin Laden of attackers.
When I say that mono nearly killed me, I'm not joking. It was unlike any flu or tonsil infection of my life. For three weeks, I was bed-ridden with tonsils the size of golf balls. The pain of swallowing was indescribable, and consuming food or beverages was a feat of Olympic proportions. I also felt a sharp pain in my arms and legs that I'd never felt before in my life. My eyelids and liver were among the array of body parts that swelled up with fluid, so I couldn't open my eyes all the way. Walking was out of the question--I had to crawl on the ground. My fever got so high I almost sweated through every layer of my mattress. I'd never felt so sick, or even half as sick, in my life.
A year later, when I had to get my wisdom teeth removed due to their impacting my molars, the gums absolutely would not heal. I developed what's termed as "dry sockets", a painful infection that exposes nerve endings in your unclosed gums where your wisdom teeth had once been.
As I write out all of this, I can't help but laugh. Maybe I'm the only one who's finding these bouts of this-and-the-other to be a hilarious testament to my body's inability to heal in a quiet, simple, intended manner, instead opting for the long and tumultuous road every time.
And every doctor I expressed my concerns to said, "You're a hypochondriac. Look at you, you're young, you're thin, you look fine. Stop obsessing." So, going off that logic, only old and fat people who don't look "fine" on the outside are sick?? Hahahaha. Yes indeed, all of this is making me laugh!!
Another thing is that my back constantly hurts, more muscularly than skeletally. Every time I'm on the receiving end of a massage, without fail, I hear, "Wow, you have a lot of knots in your back!"
The rest of my twenties were plagued with colds that would evolve into infections every time. Unlike normal people, my colds didn't just go away after about a week. They turned into bronchitis, pneumonia, laryngitis, and sinusitis, leaving me with several months of symptoms. And when I don't get at least eight hours of sleep a night? I inevitably catch a cold, which starts the cycle...
As for my energy? It's dimished a tad more with every passing year. I now desire little outside of the pleasures of staying in bed in my free time. Walking up a flight of stairs isn't easy.
A few years ago, before I found out I had chronic Lyme, I said to a friend, "Why do I feel like an old lady already? I'm always out of breath, always hacking and sniffling." I started joking to friends that I wouldn't live past 40.
Last year, a close friend told me, "Leila, I think you have fibromyalgia." A doctor echoed her sentiments. So I started telling people, "I have fibromyalgia." A young person such as myself gets embarrassed when I can't function like everyone else, so it was a relief to say I was diagnosed with fibromyalgia. (People then acknowledge that something is, in fact, wrong with you, and you're not just sleeping your day away from depression or laziness). Still, fibromyalgia is a symptomatic label, not a disease, virus or bacteria of known origin. When they found borrelia spirochetes in my blood this year, I finally could pinpoint the origin. In fact, many Lyme researchers claim that the majority of people with fibromyalgia actually have undiagnosed Lyme.
I've also noticed that in my twenties I started to despise big cities like San Francisco, with their crowds of pedestrians, traffic, hills (oh boy, walking up those hills!), and other distractions. The more "busy" my surrounding environment, the more likely my brain will stress out, then poop out and become fatigued. Well, I recently learned that there's a neuro-Lyme explanation for this that applies to most Lyme patients. Here's the best way I can explain it (sorry, I'm not good at technical explanations)--every bit of "noise" in your environment is a bit of stimuli that your brain has to process. Lyme brains and the central nervous system, by nature of the borrelia infection, are only able to process so much stimuli before becoming fatigued. And, when the brain becomes fatigued, all its other processes slow down. Imagine how many processes the brain is responsible for, and now imagine the havoc their fatigue can wreak on a body.
I wasn't wrong when I said that certain environments made me physically ill. It's not just a matter of taste anymore! I now have a scientific explanation for why I prefer tranquil settings like the countryside, and can only tolerate so much music or television, panic in crowds, and absolutely must live without roommates.
People can be some of the worst "noise", or stimuli, for me. Just being in the presence of another person stresses me out. It's almost like their energy field--the molecular energy their body comprises--swallows all my own energy. (There must a better explanation for this). As I've aged, I've become more and more of a loner. I prefer being anti-social, actually. Taking care of my garden, spending time with my cats, and surfing the web are all one-man activities that I thoroughly enjoy. As much as I love my friends (bless their hearts), I can only be around them very sparingly. Big house parties full of loud yelling, smoking people, bathroom lines, no parking spots, etc.? Forget about it. I'd rather pull hair out of my head. I cannot fathom what kind of joy people get out of those environments.
Anyway, sorry about that huge tangent I just went on. The point of this whole entry has been to say that my twenties have had many challenges, but now that I understand their cause, I'm starting to learn ways to better manage myself.
Before you start reading this post, I'd encourage you to read the one I link to above. It will help set the scene on what's ailed me, not to mention leads into my twenties in chronological order.
At twenty-one, fresh out of college with a bachelor's degree in journalism, I desired an adventure bigger than what my life could give me in Texas. Filled with bad memories, that state was only a constant reminder of ex-boyfriends I'd yet to get over, and my parents, who at that time were starting the divorce process. At that time, I was chronically ill with nasal "allergies" and "sinusitis", a sensitive stomach that caused bouts of nausea, and anxiety disorder that induced panic attacks. Furthermore, I was dizzy and light-headed on a regular basis, and frequently felt overly cold or overly hot (never a comfortable temperature).
Still, my health was stable, and doctors deemed me as "perfectly healthy", so I didn't let my malaise stop me from doing what I'd dreamt of doing: moving to California.
On February 7th, 2003, I pulled out of my parents' driveway in Dallas, my Toyota Camry filled to the brim with clothing, music, books, decor, and the most valuable of all: my two cats. For the next three days, I trekked directly west, then sharply north, until I arrived in the Bay Area. The drive was liberating, to say the least. Crossing state lines brought about a jubilant sense of excitement--I felt like I was Lewis and Clark, or an 1850 gold-rush miner, seeing brand new places and filling empty pages in my book of life!!
As is still the case, whenever I'm overly excited, flooding my brain with endorphins, adrenaline, dopamine and serotonin--yes, all of the above together like a stew--well, my chronic symptoms take a back seat. Perhaps that's why I consider myself such an adrenaline junkie. For those moments, I don't notice that I'm sick.
New chronic illnesses, some of which may sound laughable, started to creep up in my twenties. For one, I started to catch myself breathing very shallowly--quick, shallow breaths became my standard mode of breathing, with heavy sighs mixed in. In 2004, I saw a doctor about it. She told me it was just anxiety. (I've since learned that many of us Lymies share that common, bizarre manner of breathing).
I also started to notice, in my 20s, that my skin color gradually turned a slight hue of greenish gray, almost like a sage green, with undereye circles so dark that if I left the apartment without concealer under my eyes, people actually mistook the circles for bruises or black eyes. (Concealer became an absolute-must). Also related to my skin color, and in my opinion the most fascinating of all, my skin stopped having the ability to tan. Whereas I'd been capable of turning very, very dark bronze from childhood through my teen years, I found that in my 20s, no matter how much sun exposure I got--on trips to Mexico, Texas, or the Middle East--I couldn't achieve even half of the tan of the past. Nobody has been able to explain this one to me, so if anyone has an explanation, I'd love to know it. (I'm aware that our skin contains melanin which produces pigment, so perhaps a melanin deficiency is related to this?) Oh, and the sun also started making me incredibly weak. It got to the point a few times that I think I actually suffered sunstroke from minimal exposure to the sun. I'd also like to understand why that started to happen. I'm sure it's related to the Lyme.
Then other weird things started happening.... I started getting food poisoning unlike anything I'd ever had before. Up until my 20s, I'd vomited a number of times, all of the episodes being over soon after they started. But in my 20s, I've had a handful of episodes of vomiting that have lasted 8 hours or more and ended with me in the emergency room requiring i.v. fluids.
Then there were the bladder and cervical abnormalities. For several years, I suffered from non-bacterial interstitial cystitis, which means a whole lot of nothing really: the same symptoms of a bladder infection, but with no known cause. At times, the doctors found bacteria in my urine samples, but more and more often, they ceased to identify any bacteria. At 25, I had to get my urethra dilated because its narrowness was said to be causing the symptoms. It wasn't. And the urethra dilation didn't help. My pap smears also started showing up as "abnormal" due to unknown causes when I was about 25. Imagine hearing your ob/gyn tell you that your pap showed cellular abnormalities that, over and over, couldn't be determined upon further testing. It wasn't cancer, AIDS or STDs... just "abnormal" with no further info. Awesome.
Oh, 25 must have been the magic age for me! Because the single worst illness of my life happened at--you guessed it--age 25. I'm talking about mono. This one was the bin Laden of attackers.
When I say that mono nearly killed me, I'm not joking. It was unlike any flu or tonsil infection of my life. For three weeks, I was bed-ridden with tonsils the size of golf balls. The pain of swallowing was indescribable, and consuming food or beverages was a feat of Olympic proportions. I also felt a sharp pain in my arms and legs that I'd never felt before in my life. My eyelids and liver were among the array of body parts that swelled up with fluid, so I couldn't open my eyes all the way. Walking was out of the question--I had to crawl on the ground. My fever got so high I almost sweated through every layer of my mattress. I'd never felt so sick, or even half as sick, in my life.
A year later, when I had to get my wisdom teeth removed due to their impacting my molars, the gums absolutely would not heal. I developed what's termed as "dry sockets", a painful infection that exposes nerve endings in your unclosed gums where your wisdom teeth had once been.
As I write out all of this, I can't help but laugh. Maybe I'm the only one who's finding these bouts of this-and-the-other to be a hilarious testament to my body's inability to heal in a quiet, simple, intended manner, instead opting for the long and tumultuous road every time.
And every doctor I expressed my concerns to said, "You're a hypochondriac. Look at you, you're young, you're thin, you look fine. Stop obsessing." So, going off that logic, only old and fat people who don't look "fine" on the outside are sick?? Hahahaha. Yes indeed, all of this is making me laugh!!
Another thing is that my back constantly hurts, more muscularly than skeletally. Every time I'm on the receiving end of a massage, without fail, I hear, "Wow, you have a lot of knots in your back!"
The rest of my twenties were plagued with colds that would evolve into infections every time. Unlike normal people, my colds didn't just go away after about a week. They turned into bronchitis, pneumonia, laryngitis, and sinusitis, leaving me with several months of symptoms. And when I don't get at least eight hours of sleep a night? I inevitably catch a cold, which starts the cycle...
As for my energy? It's dimished a tad more with every passing year. I now desire little outside of the pleasures of staying in bed in my free time. Walking up a flight of stairs isn't easy.
A few years ago, before I found out I had chronic Lyme, I said to a friend, "Why do I feel like an old lady already? I'm always out of breath, always hacking and sniffling." I started joking to friends that I wouldn't live past 40.
Last year, a close friend told me, "Leila, I think you have fibromyalgia." A doctor echoed her sentiments. So I started telling people, "I have fibromyalgia." A young person such as myself gets embarrassed when I can't function like everyone else, so it was a relief to say I was diagnosed with fibromyalgia. (People then acknowledge that something is, in fact, wrong with you, and you're not just sleeping your day away from depression or laziness). Still, fibromyalgia is a symptomatic label, not a disease, virus or bacteria of known origin. When they found borrelia spirochetes in my blood this year, I finally could pinpoint the origin. In fact, many Lyme researchers claim that the majority of people with fibromyalgia actually have undiagnosed Lyme.
I've also noticed that in my twenties I started to despise big cities like San Francisco, with their crowds of pedestrians, traffic, hills (oh boy, walking up those hills!), and other distractions. The more "busy" my surrounding environment, the more likely my brain will stress out, then poop out and become fatigued. Well, I recently learned that there's a neuro-Lyme explanation for this that applies to most Lyme patients. Here's the best way I can explain it (sorry, I'm not good at technical explanations)--every bit of "noise" in your environment is a bit of stimuli that your brain has to process. Lyme brains and the central nervous system, by nature of the borrelia infection, are only able to process so much stimuli before becoming fatigued. And, when the brain becomes fatigued, all its other processes slow down. Imagine how many processes the brain is responsible for, and now imagine the havoc their fatigue can wreak on a body.
I wasn't wrong when I said that certain environments made me physically ill. It's not just a matter of taste anymore! I now have a scientific explanation for why I prefer tranquil settings like the countryside, and can only tolerate so much music or television, panic in crowds, and absolutely must live without roommates.
People can be some of the worst "noise", or stimuli, for me. Just being in the presence of another person stresses me out. It's almost like their energy field--the molecular energy their body comprises--swallows all my own energy. (There must a better explanation for this). As I've aged, I've become more and more of a loner. I prefer being anti-social, actually. Taking care of my garden, spending time with my cats, and surfing the web are all one-man activities that I thoroughly enjoy. As much as I love my friends (bless their hearts), I can only be around them very sparingly. Big house parties full of loud yelling, smoking people, bathroom lines, no parking spots, etc.? Forget about it. I'd rather pull hair out of my head. I cannot fathom what kind of joy people get out of those environments.
Anyway, sorry about that huge tangent I just went on. The point of this whole entry has been to say that my twenties have had many challenges, but now that I understand their cause, I'm starting to learn ways to better manage myself.
Saturday, March 5, 2011
One Month Into Treatment!
Hi everyone!
So it's been a month now that I've been treating my chronic Lyme disease, Hashimoto's disease and chronic Epstein Barr virus.
The herxing has evolved from an initial week of heavy sweating to a more recent bout of bug-bite like zaps in my skin, both of which are signs of die-off (the latter is more specific to parasites, which I'll get into in detail in one sec). In between the sweating and the itching skin, I've experienced profound fatigue and brain fog consistently.
Last week, I had some follow-up blood tests performed at Quest Diagnostics and iGenex. Since we already know I have the three diseases mentioned above, we tested for Lyme co-infections, i.e. common bacteria/parasites that Lyme patients acquire from ticks that carry Lyme. (We didn't test me for these the first time around, since we still didn't know if I had Lyme yet). This time, we also did a candida panel, iron panel, blood cell panel, and I believe a thyroid update. There was something else, too, but I can't remember. Anyway, in three weeks I see my doctor for the results, and you can bet I'll update you all on this blog! ;-)
In the literature I've been reading, I keep coming across the same fact: the majority of Lyme patients have parasites (sorry, too much brain fog to cite my sources). This is a well-documented fact. Last week, I started feeling like bugs were biting my skin, throughout my dermis from head to toe. At its highest frequency, every minute or two, I'd feel the zap of a bite on my face, neck, stomach, legs, armpits, elbows, scalp, you name it. It called for scratching, of course, to relieve the sudden itch.
Ever inquisitive as I am, I took to Google and the Lyme community to research this, and learned it is indeed a common sign of parasitic activity as they start to reactivate and re-energize themselves in response to the treatment. The good news is, it may mean they're dying off. (I'm not on any specific parasitic treatment at the moment, but a lot of what I'm taking detoxifies the body and can kill parasites too. However, if we get confirmation from the lab tests that I have parasites, I'll be adding a new drug to my protocol.)
Let's see, what other updates do I have for you..........
I'm in the process of applying for short-term disability. I am clearly in no condition to be working, and since I've paid into SSDI over the years, I'm hoping I can get a little bit of compensation back for the time I'm unable to work. However, it's such a burdensome process. First, I had to pay a $75 standard fee just to have my doctor sign off on my application. Then I got a notification in the mail that, according to EDD, I haven't been employed since 2009. This is because I haven't filed my taxes yet for 2010, and as a full-time consultant for all of 2010, no deductions were taken out of my paychecks. So I hurriedly did my taxes this weekend and have a fat check to send off to our government. Once I pay my owed taxes, I *may* be eligible for disability, but it will be a few weeks until I find out. (I'll keep you posted).
Anyway, now that I'm a month into my treatment, I'd like to inquire with the Lyme community about what you all take and what you'd recommend that I add. There are a few things I'm very interested in trying! (I'll get to them in a minute). Note that I see my doctor in three weeks for my follow-up blood test results, and I'll ask him about any recommendations you all make, and hopefully get his approval for the new things I want to try.
As a refresher, here's what I currently take (the list has somewhat changed since the last time I shared it)~
For the Lyme, I take minocycline (an antibiotic) twice daily, in addition to samento (cat's claw) drops.
For the Hashimoto's, I take Armour thyroid once daily, and iodine tablets once daily.
For the Epstein Barr, I take drops of cumanda and samento, which have anti-viral properties.
For anxiety disorder (which is actually neurological Lyme), I've added 5-HTP, B vitamin complex and cod liver oil to my Cymbalta prescription.
For a healthy gut and candida prevention, I take a probiotic called Symbion twice daily. I had to discontinue the Diflucan for candida, due to its side effects.
For my unbalanced hormones, I use bio-identical Progesterone cream on my stomach at bedtime.
For Vitamin D deficiency, I take Free D3 capsules daily.
Lastly, I take Vitamin C in addition to a Calcium & Magnesium supplement, which I interchange with a food-source based multivitamin every other day.
From everything I read and hear from others, the above list just barely scratches the surface. I'm very interested in trying some new things that specifically work on the Lyme. So please let me know if you have any experience with any of the following, or any thoughts about any of them in general:
Thank you. I will be in touch again soon with blog entries about famed Dr. Montoya's lecture on Chronic Fatigue Syndrome, controversial exercise limitations, and of course, updates on my blood test results and my disability applicaion!
So it's been a month now that I've been treating my chronic Lyme disease, Hashimoto's disease and chronic Epstein Barr virus.
The herxing has evolved from an initial week of heavy sweating to a more recent bout of bug-bite like zaps in my skin, both of which are signs of die-off (the latter is more specific to parasites, which I'll get into in detail in one sec). In between the sweating and the itching skin, I've experienced profound fatigue and brain fog consistently.
Last week, I had some follow-up blood tests performed at Quest Diagnostics and iGenex. Since we already know I have the three diseases mentioned above, we tested for Lyme co-infections, i.e. common bacteria/parasites that Lyme patients acquire from ticks that carry Lyme. (We didn't test me for these the first time around, since we still didn't know if I had Lyme yet). This time, we also did a candida panel, iron panel, blood cell panel, and I believe a thyroid update. There was something else, too, but I can't remember. Anyway, in three weeks I see my doctor for the results, and you can bet I'll update you all on this blog! ;-)
In the literature I've been reading, I keep coming across the same fact: the majority of Lyme patients have parasites (sorry, too much brain fog to cite my sources). This is a well-documented fact. Last week, I started feeling like bugs were biting my skin, throughout my dermis from head to toe. At its highest frequency, every minute or two, I'd feel the zap of a bite on my face, neck, stomach, legs, armpits, elbows, scalp, you name it. It called for scratching, of course, to relieve the sudden itch.
Ever inquisitive as I am, I took to Google and the Lyme community to research this, and learned it is indeed a common sign of parasitic activity as they start to reactivate and re-energize themselves in response to the treatment. The good news is, it may mean they're dying off. (I'm not on any specific parasitic treatment at the moment, but a lot of what I'm taking detoxifies the body and can kill parasites too. However, if we get confirmation from the lab tests that I have parasites, I'll be adding a new drug to my protocol.)
Let's see, what other updates do I have for you..........
I'm in the process of applying for short-term disability. I am clearly in no condition to be working, and since I've paid into SSDI over the years, I'm hoping I can get a little bit of compensation back for the time I'm unable to work. However, it's such a burdensome process. First, I had to pay a $75 standard fee just to have my doctor sign off on my application. Then I got a notification in the mail that, according to EDD, I haven't been employed since 2009. This is because I haven't filed my taxes yet for 2010, and as a full-time consultant for all of 2010, no deductions were taken out of my paychecks. So I hurriedly did my taxes this weekend and have a fat check to send off to our government. Once I pay my owed taxes, I *may* be eligible for disability, but it will be a few weeks until I find out. (I'll keep you posted).
Anyway, now that I'm a month into my treatment, I'd like to inquire with the Lyme community about what you all take and what you'd recommend that I add. There are a few things I'm very interested in trying! (I'll get to them in a minute). Note that I see my doctor in three weeks for my follow-up blood test results, and I'll ask him about any recommendations you all make, and hopefully get his approval for the new things I want to try.
As a refresher, here's what I currently take (the list has somewhat changed since the last time I shared it)~
For the Lyme, I take minocycline (an antibiotic) twice daily, in addition to samento (cat's claw) drops.
For the Hashimoto's, I take Armour thyroid once daily, and iodine tablets once daily.
For the Epstein Barr, I take drops of cumanda and samento, which have anti-viral properties.
For anxiety disorder (which is actually neurological Lyme), I've added 5-HTP, B vitamin complex and cod liver oil to my Cymbalta prescription.
For a healthy gut and candida prevention, I take a probiotic called Symbion twice daily. I had to discontinue the Diflucan for candida, due to its side effects.
For my unbalanced hormones, I use bio-identical Progesterone cream on my stomach at bedtime.
For Vitamin D deficiency, I take Free D3 capsules daily.
Lastly, I take Vitamin C in addition to a Calcium & Magnesium supplement, which I interchange with a food-source based multivitamin every other day.
From everything I read and hear from others, the above list just barely scratches the surface. I'm very interested in trying some new things that specifically work on the Lyme. So please let me know if you have any experience with any of the following, or any thoughts about any of them in general:
- People with Lyme are very metal toxic, because we accumulate metals in a way that non-Lyme people don't. I've read about chlorella, clay and charcoal, among other treatments, to break up and shed the metals, and would love your experiences with either (or something else that does it, too).
- Many Lymies are raving about the coffee enema, claiming it detoxifies the liver and gallbladder, both of which by default become toxic when a person has Lyme. I'd love your experiences on the coffee enema, specifically how your body reacts to it.
- I've read that GABA helps with anxiety and insomnia and would love any feedback.
- I already read about oregano oil and cellulase for candida/yeast and am interested if any of you have tried either.
- My lymph nodes are always swollen, due to my chronic Epstein-Barr virus and chronic bacterial pneumonia (both of which have caused what myriad doctors only termed "allergies" and "sinusitis" over the years). I'd been hearing about remedies that help drain the Lymph nodes, such as lymphatic massage and herbs, and would love any input on this.
- Any other feedback on herbs for Lyme or parasitic co-infections would be much appreciated!
Thank you. I will be in touch again soon with blog entries about famed Dr. Montoya's lecture on Chronic Fatigue Syndrome, controversial exercise limitations, and of course, updates on my blood test results and my disability applicaion!
Subscribe to:
Posts (Atom)