Look, I don't have a lot of credibility as a Star Wars fan, simply because my familiarity is reduced to the films. I never read the books, I have no knowledge of literary backstories that may or may not accompany the films, and my only preconceptions of what might unfold in The Last Jedi arose from Episodes I - VII. I will say, however, that this "lack" of context for the larger Star Wars Universe might make my feelings about the film all that more objective.
Firstly, I will acknowledge that the Rose thing was really disappointing for several reasons. It's my only gripe about the film, but it's a big one. Let's put aside the horrible casting/overacting and terrible dialogue that plagued her whole character, and just focus on her plotline. I'm not of the camp that her entire journey was without a payoff; in fact, the accidental discovery and involvement of Benicio Del Toro's character is precisely what most of this post will reference. (Additionally... the small boy at the end of the film, already harvesting those seeds of liberation and resistance as he looks at the sky, is crucial to any future for the small Resistance that remains, and further reinforces the significance of Rey's humble beginnings - but I'll get to that later.) Even though the whole scene fits right into the film's didactic, anti-capitalist vibe (and no, I will NOT say agenda, because we're all aware of the intentional fallacy, right?) - it fell flat for me. As an animal rights activist I cried to watch those creatures released from their hellish realities, but there was just something about that whole thing that didn't quite fit into the rest of the film. Was it just a lack of continuity that bothered me? Perhaps it was too on-the-nose, and perhaps I was displeased with the involvement of Finn's character there, and the implications of his burgeoning friendship with Rose that seem to detract from his dedication to Rey. But if I've learned anything from Rian Johnson, it's that my own expectations mean nothing.
All that Rose stuff aside, though (eyeroll as I envision her cringe-worthy kiss), this film climbed its way into my very soul and became the best movie I've ever seen. I know how subjective that is, but I'd still like to say it. Let's start with Rey and Kylo. I'll be honest; I never, EVER thought I'd want to see Rey connect with anyone besides Finn. Their bond was the most brilliant thing about The Force Awakens aside from Rey's actual awakening. But the transmuted consciousness that played out between Rey and Kylo during their telepathic connections was so seductive in its simplicity - in its most minute, sensory details - that the power of the force was palpable... just DRIPPING off the screen. Long gone are the days of dramatically - timed facial expressions to soundtracks; the strange duality of the human condition, illustrated through these two curious, powerful beings, was simply displayed in all its stream-of-consciousness glory; I can't think of a better way to describe it than a colloquialism with which I hope you're familiar - "You already know." Isolation and connection - no man is an island... I could go on. But I'd like to move on to the throne room.
Yes, I've heard from die-hard fans that the coolest part was watching the red dudes finally fight. I've also heard that Snoke's lack of a backstory is one of the main reasons fans are literally petitioning to have the movie stricken from the record. Did it ever occur to anyone that his lack of a backstory is its own story? That the clear, resonant message there might be the fact that it doesn't matter? That one's origins have no bearing on the present? (If that's not painfully clear when Rey, seeking her own origins, sees her reflection and finds comfort in it instead of crippling anxiety, I don't know what to tell you.) It's clear that in the Star Wars universe, entirely contrary to what we've all been conditioned to expect, fate doesn't exist; reality is comprised of the individual choices of all who remain present, and is subject to change course at any moment. Snoke's rise to power is of no importance. Whatever that plotline would entail, it would not be original or extraordinary. It would be the same as any other evil world-leader, both on- and off-screen; a purely sinister control-freak, either borne of childhood trauma or just plain greed, seeks to manipulate the galaxy for his own gain. How is that different than other world leaders who've instigated conflict in their favor? It's not important, because we already know. Snoke chose the dark side. There's your story.
Anyway, I digress. The throne room. Yes, the visuals were crazy. Yes, the sound of the heat combusting in each stroke of a light saber was full of sheer magnetism, and raised every hair on my body. But the fight... my GOD the fight... that moment when Rey and Kylo stand back-to-back, wielding the force... I have goosebumps writing about it just now. But even in that moment, Johnson maintained what is undoubtedly my favorite part about Rey and Kylo; they are STILL the couple on the Grecian Urn. If you're not familiar with Keats' well-known "Ode to a Grecian Urn," here's its premise in a nutshell. There are two lovers painted on this urn, and for all their intricacy and beauty, they will never be able to touch. They are forever glazed in that moment JUST before embrace; that tension that draws two lovers together, that quivers lips and legs - it is forever preserved on that urn. And we are not to feel sorry for them; we are to envy them, because once they touch - once that moment is over - it can never be returned. That tension is preserved, even in the throne room, even in that climactic orgy of emotion that ruled the scene from the locked-eyes as Kylo moves the saber to the battle itself. I'm still not yet sure if I want their connection to be a romantic one, but their connection is undeniable. I do think the film preys on Rey's naivety in a way that rings true to the Star Wars we've all come to know, and I don't think that's a bad thing.
Rey's training was refreshing, simply because in those moments, the film finally held out some small amount of predictability for us. But COME ON... Yoda? The burning of the temple?! The symbolic nod to entropy? The doing away with cumbersome and futile tradition? HOW IS ANYONE UPSET ABOUT THIS? DJ may be the most powerful character in the ENTIRE franchise. His exposure of the long-standing war - the very thing around which this franchise has been built - is a mind-blowing one that approaches the fourth wall. I half-expected Del Toro to look straight at the camera when he addresses that fact that one day, it's the First Order blowing dudes up, and the next day... it's the Resistance. They're buying the same weapons. They're trapped - ALL of them - in the same exact system that demands blood and is driven by commodity, even if that commodity is something as intangible as mind control. But the whole thing reminded me of Baudrillard's theories about reality and the aesthetics of war; it addresses the fact that our reality is one in which even war is commercialized and turned into art (*cough* the entire saga *cough*). The irony is that there will never be anything more aesthetic in film (for me) than those silent ten seconds in which Admiral Holdo makes the ultimate sacrifice, lighting up the screen in the most brilliant display of visual effects I've ever witnessed. There were people in the audience LITERALLY gasping for air. Victory, carnage, loss, the culmination of suffering... all of it was captured in ten seconds and explains, without word or sound, why humanity finds a sad aesthetic in the very nature of war. (If you'd like to read more about Baudrillard's work, peep this article. It's a great comprehensive overview: https://ceasefiremagazine.co.uk/in-theory-baudrillard-9/)
Long story short, when Johnson calls all of us out for romanticizing war in the same way we have for millennia - from richly-painted portraits of the crusades to the American revolution to modern-day films like Zero Dark Thirty, I wanted to cry out. We are ALL the bad guys, right? The casualties that ensue.... and yet here we are, in real life, capitalizing on conflicts that inevitably stem from the competition for capitalization of whatever resource (or, in the case of some extremists, the fight against this way of life). The aesthetics of war, beautifully portrayed AND criticized in one amazing film. I also think that his unspoken criticism of the midi-chlorian thing and its implications for enabling racism to have a foothold in the universe is equally powerful.
I don't know if Kylo is lying. None of us do. I think we all wanted Rey to have some crazy backstory... and the fallout from her truth (if it is truth) is likely the most enraging part of this film for all of the fans who are going mad, even if they claim it's the plot-holes with Snoke or the space-bombs or the floating Leia. But it's SO strong. Johnson thwarts the myth that the Force is only accessible to those genetically pre-disposed to its power, and among the ashes in this complete destruction of old-school ways of viewing power and ingenuity and strength emerges this character who came from nothing. (Yet another near-broach of the fourth wall is Kylo's speech about how she "isn't part of this story.") But she can feel it; the Force is in every living thing, surrounds every living thing, and connects every living thing - and it does not "belong" to the Jedi or the Empire. The force is the ONE thing that can never be a commodity; it breaks every rule and crosses every boundary. That's the best part of this whole film - the acknowledgement that despite all this senseless violence surrounding us, all this blood shed over territory or intellectual property or whatever the newest commodity is - there is one thing that ties us all together, and it cannot be bought or sold. It compels us to speak for those creatures who cannot have a voice (ahem, the beasts in captivity) and it has the power to release us from our material reality and into one with real meaning. And although the effects were incredible and BB8 was the best thing ever and the salt-planet was cool and Luke's Astral projection was a badass way to go (yeah yeah, I know everyone hated it... I'm entitled to my opinion), this truth - that we are ALL Rey - is the most powerful thing I've ever seen on the screen.
Judge me.
Tuesday, December 26, 2017
Friday, May 29, 2015
Bartonella and C-Diff (Or, "Where is Dr. House when you need him?!")
For those of you who haven't read my previous blog post, I am currently in my second year of overall treatment (I was on abx for a little over a year, took six months off as symptoms had subsided, and then began antibiotic treatment again in January after symptoms had come back and I tested positive for Bartonella).
At first, my LLMD put me on Doxy, Rifampin, Azythromycin, and Mepron. After he took some follow-up bloodwork several weeks later and found that my liver enzymes were elevated, he switched me to Clindamycin, Tindazole, and Malarone. He also added Cymbalta (40 mg/day) to my regimen as the panic attacks had become frequent and I was tired of spot-treating them with Xanax. Although I had (and still have tremendous reservations) about taking something preventative like Cymbalta, I will say it has completely eliminated my panic attacks.
Around March of this year, I began to have acute upper-abdominal pain. Knowing that my liver enzymes were high, I feared gall bladder complications from all the meds, and so immediately stopped taking the abx and saw my PCP. She scheduled abdominal and pelvic utlrasounds and sent me for bloodwork. By this time, because the liver has so many self-healing properties, my enzymes had returned to normal (confirming the abx treatment as the cause) and, thankfully, the ultrasounds showed no abnormalities. Fearing the Bartonella running rampant in my brain, I began the abx once again for a few weeks. The acute pain became worse and spread throughout my abdomen, so I (again) stopped taking them, and have not been on them since.
I HAVE been taking - and this is super important to note for anyone looking for immune support - 10,000 ius of Vitamin D a day, as well as Phytosterol, Skullcap, and S.A.T. I see Dr. Petrowski in Timonium, MD. She is a biotixin specialist who does lots of testing and is incredibly helpful in dealing with the natural/immunity side of things. I initially started seeing her after I had been exposed to black toxic mold so I could get some help processing all the neurotoxins, but she frequently treats patients with infectious diseases so that she can support our bodies as we endure the toxins released during the die-off process. After extensive testing, she showed me the bloodwork that let her know that my hypothalamus is pretty much non-functioning after all of the toxins in my body have had a chance to run wild. For the last several weeks, other than the abdominal pain, I had been feeling like SUPERWOMAN. My strength was back, I had mental clarity, I was working out again, and felt like 100% was just around the corner if I could get myself off of Cymbalta. But last Thursday, things took a sour turn.
I woke up sick to my stomach and had diarrhea for the next five days. I was in South Carolina for a friend's wedding and so decided just to tough it out with Immodium and stay hydrated until I got home. This Sunday I went to Patient First where they clinically diagnosed me with C-Diff and sent a stool sample out for confirmation (it was confirmed a couple days later). I was taking Flagyl for the bacteria and Bentyl (an anti-spasmodic, I think?) for the pain, but four days later, my arm broke out in hives, so I stopped taking both. The next day, before I'd had a chance to call the doctor to let them know, my throat closed up for a moment after eating lunch. It was very brief; I couldn't breathe in or swallow for a few seconds, and then it opened again and I could breathe just fine. And then my throat and tongue became extraordinarily dry and irritated.
Let me first say that I don't have any known food allergies (only lactose intolerance and a mild gluten intolerance). Also, I have a hiatal hernia for which I take Prilosec OTC 2x a day (diagnosed years before the Lyme), and I believe I've been having esophageal spasms for the last six months. Feels like your heart is fluttering, or a fish is stuck in your chest. But because I had had a reaction to the abx the day before, I became concerned about anaphylaxis, and asked our school nurse for some advice (I teach at a small school). The nurse informed me that people can have latent reactions (although I found out later that it's extremely unlikely to have an anaphylactic reaction that much later) and she wanted to administer epinephrine. I was like... um... no thanks, I'll just go to the E.R. They didn't perceive me to be in any immediate danger, but gave me steroids and Benadryl just in case, and kept me to monitor me and administer fluids. A chest X-ray revealed nothing abnormal (what were they looking for, anyway?). They also gave me an Epi-pen script, which I am very grateful for, because later that evening after eating dinner, I had a very similar reaction. I didn't have to use it, but I'm suspicious of having developed a food allergy, and will now be eating saltines until I can see an allergist. Did anyone else read those studies of people becoming allergic to red meat after being infected with Lyme?
I think the steroids may have been a huge setback for the Bartonella as well, because for hours last night and into today, I was experiencing extreme numbness in my face and eyes, hands, legs, and feet. It was awful. I've had it before but it was never that bad. I was terrified of sleeping last night and kept thinking I was going to wake up paralyzed or blind. It's so hard not to let fear take control after you've essentially had your life taken away, and I'm so grateful that I've gotten it back (for the most part) and am really scared to have it taken again.
Today I'm meeting with me LLMD to discuss a picc line. For those of you who haven't had to go to such extremes, a picc line delivers the abx straight into your bloodstream and bypasses the gut. While it's risky in terms of what it can do to your organs and risky because of potential blood clots, I don't see another way to treat the Bartonella while I have C-diff. The diarrhea is pretty much gone (although I do still have intermittent abdominal pain, and I did have what appeared to be blood in my stool when they took the sample), but I know C-diff can be deadly and can last for months and even years, so I'm thinking it's time for a line.
Did everyone see that Hopkins is opening a research center for Lyme? On the one hand I'm concerned, given that some of these doctors are the ones who staunchly believe Lyme cannot be a long-term condition. On the other hand, a thousand times hooray for research.
As always, please feel free to comment if you're new to Lyme and you'd like to speak with me personally about any questions or fears your might have. I know sometimes it's good just to be able to talk to someone with a shared experience. Off to see my LLMD!
At first, my LLMD put me on Doxy, Rifampin, Azythromycin, and Mepron. After he took some follow-up bloodwork several weeks later and found that my liver enzymes were elevated, he switched me to Clindamycin, Tindazole, and Malarone. He also added Cymbalta (40 mg/day) to my regimen as the panic attacks had become frequent and I was tired of spot-treating them with Xanax. Although I had (and still have tremendous reservations) about taking something preventative like Cymbalta, I will say it has completely eliminated my panic attacks.
Around March of this year, I began to have acute upper-abdominal pain. Knowing that my liver enzymes were high, I feared gall bladder complications from all the meds, and so immediately stopped taking the abx and saw my PCP. She scheduled abdominal and pelvic utlrasounds and sent me for bloodwork. By this time, because the liver has so many self-healing properties, my enzymes had returned to normal (confirming the abx treatment as the cause) and, thankfully, the ultrasounds showed no abnormalities. Fearing the Bartonella running rampant in my brain, I began the abx once again for a few weeks. The acute pain became worse and spread throughout my abdomen, so I (again) stopped taking them, and have not been on them since.
I HAVE been taking - and this is super important to note for anyone looking for immune support - 10,000 ius of Vitamin D a day, as well as Phytosterol, Skullcap, and S.A.T. I see Dr. Petrowski in Timonium, MD. She is a biotixin specialist who does lots of testing and is incredibly helpful in dealing with the natural/immunity side of things. I initially started seeing her after I had been exposed to black toxic mold so I could get some help processing all the neurotoxins, but she frequently treats patients with infectious diseases so that she can support our bodies as we endure the toxins released during the die-off process. After extensive testing, she showed me the bloodwork that let her know that my hypothalamus is pretty much non-functioning after all of the toxins in my body have had a chance to run wild. For the last several weeks, other than the abdominal pain, I had been feeling like SUPERWOMAN. My strength was back, I had mental clarity, I was working out again, and felt like 100% was just around the corner if I could get myself off of Cymbalta. But last Thursday, things took a sour turn.
I woke up sick to my stomach and had diarrhea for the next five days. I was in South Carolina for a friend's wedding and so decided just to tough it out with Immodium and stay hydrated until I got home. This Sunday I went to Patient First where they clinically diagnosed me with C-Diff and sent a stool sample out for confirmation (it was confirmed a couple days later). I was taking Flagyl for the bacteria and Bentyl (an anti-spasmodic, I think?) for the pain, but four days later, my arm broke out in hives, so I stopped taking both. The next day, before I'd had a chance to call the doctor to let them know, my throat closed up for a moment after eating lunch. It was very brief; I couldn't breathe in or swallow for a few seconds, and then it opened again and I could breathe just fine. And then my throat and tongue became extraordinarily dry and irritated.
Let me first say that I don't have any known food allergies (only lactose intolerance and a mild gluten intolerance). Also, I have a hiatal hernia for which I take Prilosec OTC 2x a day (diagnosed years before the Lyme), and I believe I've been having esophageal spasms for the last six months. Feels like your heart is fluttering, or a fish is stuck in your chest. But because I had had a reaction to the abx the day before, I became concerned about anaphylaxis, and asked our school nurse for some advice (I teach at a small school). The nurse informed me that people can have latent reactions (although I found out later that it's extremely unlikely to have an anaphylactic reaction that much later) and she wanted to administer epinephrine. I was like... um... no thanks, I'll just go to the E.R. They didn't perceive me to be in any immediate danger, but gave me steroids and Benadryl just in case, and kept me to monitor me and administer fluids. A chest X-ray revealed nothing abnormal (what were they looking for, anyway?). They also gave me an Epi-pen script, which I am very grateful for, because later that evening after eating dinner, I had a very similar reaction. I didn't have to use it, but I'm suspicious of having developed a food allergy, and will now be eating saltines until I can see an allergist. Did anyone else read those studies of people becoming allergic to red meat after being infected with Lyme?
I think the steroids may have been a huge setback for the Bartonella as well, because for hours last night and into today, I was experiencing extreme numbness in my face and eyes, hands, legs, and feet. It was awful. I've had it before but it was never that bad. I was terrified of sleeping last night and kept thinking I was going to wake up paralyzed or blind. It's so hard not to let fear take control after you've essentially had your life taken away, and I'm so grateful that I've gotten it back (for the most part) and am really scared to have it taken again.
Today I'm meeting with me LLMD to discuss a picc line. For those of you who haven't had to go to such extremes, a picc line delivers the abx straight into your bloodstream and bypasses the gut. While it's risky in terms of what it can do to your organs and risky because of potential blood clots, I don't see another way to treat the Bartonella while I have C-diff. The diarrhea is pretty much gone (although I do still have intermittent abdominal pain, and I did have what appeared to be blood in my stool when they took the sample), but I know C-diff can be deadly and can last for months and even years, so I'm thinking it's time for a line.
Did everyone see that Hopkins is opening a research center for Lyme? On the one hand I'm concerned, given that some of these doctors are the ones who staunchly believe Lyme cannot be a long-term condition. On the other hand, a thousand times hooray for research.
As always, please feel free to comment if you're new to Lyme and you'd like to speak with me personally about any questions or fears your might have. I know sometimes it's good just to be able to talk to someone with a shared experience. Off to see my LLMD!
Monday, May 25, 2015
Because Being Informed is Important
Wow. I haven't written in this half-assed "blog" for a long time, but I have some things to share regarding my plea last week to watch "Under Our Skin" - I believe it's On Demand and on Netflix, and the full-length YouTube version is here:
https://www.youtube.com/watch?v=2JgR_Jfbhv8
First, an explanation of why I'm asking everyone to watch this documentary:
I don't want anyone - not even my worst enemy - to experience what I went through. I'll try to condense this story as much as possible.
In the fall of 2011, I went on one of two camping trips with my students that year and became very very ill on the second day. Severe, flu-like symptoms and intense inner-ear and neck pain. I recall asking my boyfriend to check the base of my head for ticks, but he didn't find any. I took a bunch of Vitamin D and green tea and went back for the second camping trip a couple days later. By this time, the flu-like symptoms had subsided, but the ear pain had progressed to my head and neck.
Severe cold symptoms followed every month after, as well as pain and fatigue. My PCP prescribed steroids several times. I saw specialist after specialist after specialist. I saw three different ENTs. Was it the cyst in my sinus cavity? No, said my ENTs. Too small to be responsible for pain. Occipital neuralgia? The pain had become near-debilitating, and a pain management specialist had declared I needed a steroid shot in my neck (thank goodness I accidentally missed that appointment). Months later, my symptoms had spread to the nervous system; I had numbness in random places as well as sharp, shooting pains all throughout my body that would come and go. I had been dealing with what I thought was an ankle injury - was going through PT, trying to help the swelling and pain, etc. He finally sent me to an ankle specialist at University of MD, who had the sense to test me for Lyme, but it came back negative.
FACT: The blood test for Lyme is extremely inaccurate. MANY people infected with Lyme disease will NEVER test positive for Lyme, but will respond to treatment. Last year, the state of Virginia passed a law requiring doctors to inform patients of this inaccuracy.
I proceeded to more specialists; the pain had become so disruptive that I was missing a lot of work. I began to experience cognitive symptoms - dizziness, confusion, memory loss, panic attacks... One specialist was considering MS as a diagnosis. This went on for two years until the substitute who'd taken over my class at work suggested I see a Lyme specialist, who sent my bloodwork out to a specialized lab that runs a test called the "Western Blot" (a more accurate test for Lyme). She'd had the same symptoms I had, and had been diagnosed and treated for Lyme. Turns out I had it as well; the first test was a false negative, and so for two years the corkscrew-shaped bacteria, which is able to cross the blood-brain barrier with far more ease than other menacing organisms, had been reproducing and taking over my entire body.
FACT: Lyme can CHANGE ITS OWN DNA. National Geographic published a study several months ago that highlighted this feature of the bacteria, citing this unique ability as one of the many difficulties in treating the disease. Lyme can learn the antibiotics you're fighting it with and then manipulate its actual DNA to more effectively combat and resist the medication.
I was on antibiotic treatment for a little over a year before I felt normal. I went from being unable to work, drive, get out of bed or make myself food, solve a simple math problem, or remember the names of my family members to being completely functional again. Dr. Daniel Jaller in Rockville, MD, was a PCP who'd seen so many patients with Lyme that he decided to devote his entire practice to Lyme disease. His blog, where he details his research, can be found here: http://lymemd.blogspot.com/
I've met people who've been blinded, paralyzed, even misdiagnosed with auto-immune illnesses and LOU GEHRIG'S DISEASE who have undergone treatment for Lyme and improved 100 percent. They are now healthy and living normal lives. Dr. Jaller provides care to hundreds of us (maybe even thousands) who are suffering from this disease and, like many other Lyme specialists, is under investigation by the state medical board because "chronic" Lyme is not recognized as a condition. He has recently been charged by the medical board for treating chronic Lyme. Here's what happens:
Patients like me, infected with the bacteria for years without knowing, need much longer than the eight weeks someone with acute Lyme disease requires. Often, if you see the tick or the bite and get two months of Doxy, you'll be ok (although many patients experience random symptoms later in life without knowing why). For people like me, it takes months, and sometimes years. Insurance companies look at a patient's bill for all those antibiotics over the course of several months and say hey, wait a second - this is only an eight-week treatment thing, we don't wanna pay any more than that for this person's medications. And so they complain to the medical board (and by complain, I probably mean bribe), and then people like me suffer because Lyme specialists lose their licenses - even though there is now MEDICAL EVIDENCE that proves that Lyme can be a chronic issue that takes a long time to treat. So because the government/CDC, etc. say I'm not sick, then I'm not sick, my doctor is crazy, and now I won't have treatment options.
I was off of the meds for about six months, but then a co-infection called bartonella surfaced, and so I underwent more treatment this past January. I had to discontinue the antibiotics for now due to some GI issues (yes, there are absolutely risks associated with long-term antibiotic treatment, but as I've learned, the risk is most definitely worth the reward - I'd rather have GI issues than be paralyzed or cognitively dysfunctional) but I am fighting for Dr. Jaller's practice and for all of the people out there who are suffering and continually turned away from doctor after doctor because no one knows what's wrong. This Lyme documentary will not only inform you about Lyme (even congenital Lyme - it's so sad to see these babies born with Lyme passed through the placenta because the mother was asymptomatic or had a false negative test - their health deteriorates to the point of no return and they're nonverbal and unable to walk, etc.), but it will inform you about the politics behind why my condition is so hush-hush and how the medical board is full of dirty, dishonest individuals who have no interest whatsoever in your medical care. I am working on putting my story together for a local news station and have been harassing the Attorney General's office with my concern over these charges brought against my doctor, but I honestly feel like the only thing that will ever make any difference is for people to KNOW. BE INFORMED. Have an understanding of the disease that's now been called the "next epidemic" by three separate publications, including Jared Diamond's Guns, Germs and Steel. Know about your medical board and how they can affect the care you receive at the request of an insurance company. Just watch. And share. Please.
https://www.youtube.com/watch?v=2JgR_Jfbhv8
First, an explanation of why I'm asking everyone to watch this documentary:
I don't want anyone - not even my worst enemy - to experience what I went through. I'll try to condense this story as much as possible.
In the fall of 2011, I went on one of two camping trips with my students that year and became very very ill on the second day. Severe, flu-like symptoms and intense inner-ear and neck pain. I recall asking my boyfriend to check the base of my head for ticks, but he didn't find any. I took a bunch of Vitamin D and green tea and went back for the second camping trip a couple days later. By this time, the flu-like symptoms had subsided, but the ear pain had progressed to my head and neck.
Severe cold symptoms followed every month after, as well as pain and fatigue. My PCP prescribed steroids several times. I saw specialist after specialist after specialist. I saw three different ENTs. Was it the cyst in my sinus cavity? No, said my ENTs. Too small to be responsible for pain. Occipital neuralgia? The pain had become near-debilitating, and a pain management specialist had declared I needed a steroid shot in my neck (thank goodness I accidentally missed that appointment). Months later, my symptoms had spread to the nervous system; I had numbness in random places as well as sharp, shooting pains all throughout my body that would come and go. I had been dealing with what I thought was an ankle injury - was going through PT, trying to help the swelling and pain, etc. He finally sent me to an ankle specialist at University of MD, who had the sense to test me for Lyme, but it came back negative.
FACT: The blood test for Lyme is extremely inaccurate. MANY people infected with Lyme disease will NEVER test positive for Lyme, but will respond to treatment. Last year, the state of Virginia passed a law requiring doctors to inform patients of this inaccuracy.
I proceeded to more specialists; the pain had become so disruptive that I was missing a lot of work. I began to experience cognitive symptoms - dizziness, confusion, memory loss, panic attacks... One specialist was considering MS as a diagnosis. This went on for two years until the substitute who'd taken over my class at work suggested I see a Lyme specialist, who sent my bloodwork out to a specialized lab that runs a test called the "Western Blot" (a more accurate test for Lyme). She'd had the same symptoms I had, and had been diagnosed and treated for Lyme. Turns out I had it as well; the first test was a false negative, and so for two years the corkscrew-shaped bacteria, which is able to cross the blood-brain barrier with far more ease than other menacing organisms, had been reproducing and taking over my entire body.
FACT: Lyme can CHANGE ITS OWN DNA. National Geographic published a study several months ago that highlighted this feature of the bacteria, citing this unique ability as one of the many difficulties in treating the disease. Lyme can learn the antibiotics you're fighting it with and then manipulate its actual DNA to more effectively combat and resist the medication.
I was on antibiotic treatment for a little over a year before I felt normal. I went from being unable to work, drive, get out of bed or make myself food, solve a simple math problem, or remember the names of my family members to being completely functional again. Dr. Daniel Jaller in Rockville, MD, was a PCP who'd seen so many patients with Lyme that he decided to devote his entire practice to Lyme disease. His blog, where he details his research, can be found here: http://lymemd.blogspot.com/
I've met people who've been blinded, paralyzed, even misdiagnosed with auto-immune illnesses and LOU GEHRIG'S DISEASE who have undergone treatment for Lyme and improved 100 percent. They are now healthy and living normal lives. Dr. Jaller provides care to hundreds of us (maybe even thousands) who are suffering from this disease and, like many other Lyme specialists, is under investigation by the state medical board because "chronic" Lyme is not recognized as a condition. He has recently been charged by the medical board for treating chronic Lyme. Here's what happens:
Patients like me, infected with the bacteria for years without knowing, need much longer than the eight weeks someone with acute Lyme disease requires. Often, if you see the tick or the bite and get two months of Doxy, you'll be ok (although many patients experience random symptoms later in life without knowing why). For people like me, it takes months, and sometimes years. Insurance companies look at a patient's bill for all those antibiotics over the course of several months and say hey, wait a second - this is only an eight-week treatment thing, we don't wanna pay any more than that for this person's medications. And so they complain to the medical board (and by complain, I probably mean bribe), and then people like me suffer because Lyme specialists lose their licenses - even though there is now MEDICAL EVIDENCE that proves that Lyme can be a chronic issue that takes a long time to treat. So because the government/CDC, etc. say I'm not sick, then I'm not sick, my doctor is crazy, and now I won't have treatment options.
I was off of the meds for about six months, but then a co-infection called bartonella surfaced, and so I underwent more treatment this past January. I had to discontinue the antibiotics for now due to some GI issues (yes, there are absolutely risks associated with long-term antibiotic treatment, but as I've learned, the risk is most definitely worth the reward - I'd rather have GI issues than be paralyzed or cognitively dysfunctional) but I am fighting for Dr. Jaller's practice and for all of the people out there who are suffering and continually turned away from doctor after doctor because no one knows what's wrong. This Lyme documentary will not only inform you about Lyme (even congenital Lyme - it's so sad to see these babies born with Lyme passed through the placenta because the mother was asymptomatic or had a false negative test - their health deteriorates to the point of no return and they're nonverbal and unable to walk, etc.), but it will inform you about the politics behind why my condition is so hush-hush and how the medical board is full of dirty, dishonest individuals who have no interest whatsoever in your medical care. I am working on putting my story together for a local news station and have been harassing the Attorney General's office with my concern over these charges brought against my doctor, but I honestly feel like the only thing that will ever make any difference is for people to KNOW. BE INFORMED. Have an understanding of the disease that's now been called the "next epidemic" by three separate publications, including Jared Diamond's Guns, Germs and Steel. Know about your medical board and how they can affect the care you receive at the request of an insurance company. Just watch. And share. Please.
Thursday, September 12, 2013
Once upon a time...
...there lived a vagabond, right on the fringe of a sacred wood. She was alone, but not lonely; she'd never, ever needed anyone her whole life. She knew herself well, and no one could tell her anything different (although, according to the great wizard, everyone knew that the thing she prized most was someone really, truly knowing her). But someone she had crossed paths with had made her, for a fleeting moment, question her own worth. Question her place in the kingdom. And so she wandered, aimlessly. She wasn't looking for anything - just trying to mend whatever had been torn between her and the universe. All on her own.
Along came a hunter. He was highly skilled and she wanted to learn from him - wanted to know how to survive, wanted to be taught how to conquer all of the things she'd never faced. His enchantment made her realize that maybe, just maybe, although she didn't need someone - she could want someone. And that feeling was so foreign and so frightening and so terribly wondrous that she was overwhelmed. So she followed him.
While following the hunter, the vagabond, in her ever-curious way, noticed all the things moving throughout the trees - the dryads were thick and the air was sweet. Dewy grass and packed leaves should have cooled her. But there was heat there, making its way through the forest, the way a storm on Jupiter warms a foreign atmosphere. She could feel it coming.
And then she saw the wolf.
He was quiet; she could feel his steel resolve, waiting patiently in the dark. The vagabond looked for him at every turn. A chance to touch him, a chance to see his eyes glow... everywhere she went, she tracked him. She called for him, even while she was close to the hunter. Lingering behind an oak, she would catch glimpses of his strength and his solitude. She could feel him everywhere. He was already around her, through her, inside of her.
And then, one night while the stars were making time travel possible, showing her a sky that was older than anything she'd ever seen, she looked into his eyes and saw herself. She saw everything he knew. Everything he'd seen when he'd been to the future, where she would rest her head on his strong body and drift to sleep. She knew then that if she hunted him, she would find him. That she would be unable to escape his strength; that she would be willing to feed his appetite. Would be wanting to stay in the woods with him. Wanting him to want to know her. Wanting him to memorize her, ask her questions, find out who she was. Wanting to quell his anger after a long day of the kind of work one must put in when living in the forest. Wanting to lay with him in the moonlight and feel the rhythm of his breathing.
And so the vagabond went out on her own. No hunter. No guide. No weapons or defense. She found him and ran her trembling fingers through his fur... felt his strong shoulders... felt his everything. And she wanted nothing else in the world.
Nothing was spoken. Neither could speak the right language. But there was no need for words, no need for questions. She was close and unafraid.
His eyes said, "Stay."
And she did. Forever.
Along came a hunter. He was highly skilled and she wanted to learn from him - wanted to know how to survive, wanted to be taught how to conquer all of the things she'd never faced. His enchantment made her realize that maybe, just maybe, although she didn't need someone - she could want someone. And that feeling was so foreign and so frightening and so terribly wondrous that she was overwhelmed. So she followed him.
While following the hunter, the vagabond, in her ever-curious way, noticed all the things moving throughout the trees - the dryads were thick and the air was sweet. Dewy grass and packed leaves should have cooled her. But there was heat there, making its way through the forest, the way a storm on Jupiter warms a foreign atmosphere. She could feel it coming.
And then she saw the wolf.
He was quiet; she could feel his steel resolve, waiting patiently in the dark. The vagabond looked for him at every turn. A chance to touch him, a chance to see his eyes glow... everywhere she went, she tracked him. She called for him, even while she was close to the hunter. Lingering behind an oak, she would catch glimpses of his strength and his solitude. She could feel him everywhere. He was already around her, through her, inside of her.
And then, one night while the stars were making time travel possible, showing her a sky that was older than anything she'd ever seen, she looked into his eyes and saw herself. She saw everything he knew. Everything he'd seen when he'd been to the future, where she would rest her head on his strong body and drift to sleep. She knew then that if she hunted him, she would find him. That she would be unable to escape his strength; that she would be willing to feed his appetite. Would be wanting to stay in the woods with him. Wanting him to want to know her. Wanting him to memorize her, ask her questions, find out who she was. Wanting to quell his anger after a long day of the kind of work one must put in when living in the forest. Wanting to lay with him in the moonlight and feel the rhythm of his breathing.
And so the vagabond went out on her own. No hunter. No guide. No weapons or defense. She found him and ran her trembling fingers through his fur... felt his strong shoulders... felt his everything. And she wanted nothing else in the world.
Nothing was spoken. Neither could speak the right language. But there was no need for words, no need for questions. She was close and unafraid.
His eyes said, "Stay."
And she did. Forever.
Sunday, April 21, 2013
The Science of Being Sick
It's been exactly one month since I began treatment for Lyme. Although my "herx" reaction has calmed a bit in the fatigue department, my cognitive symptoms remain and, in my opinion, have become worse.
It is literally the absolute WORST feeling in the world to have a panic attack. Suddenly things are sideways, I don't know where I am, I don't know what to do, I'm nauseous, my heart is beating out of my chest... I fight this feeling constantly. Every two hours I'd say. I guess that's what the Xanax is for.
In addition to the antibiotics I'm taking (now three different meds - we've added Cipro in case I have bartonella, a coinfection common to Lyme that can cause these awful weird brain things that are going on), I saw a neurotoxin specialist a few weeks ago, just to make sure I haven't been exposed to toxic mold, as it can cause similar symptoms to Lyme and I had spotted a teeny bit of mold in my closet at my house.
Sure enough, bloodwork revealed that I've been exposed. She also did extensive testing on my immune system to figure out what I'm fighting this stuff with.
It turns out that, even though I'm on medication to fight the Lyme's disease (which assaults the bacteria itself), the process of that battle and/or the bacteria itself can cause toxins to be present in my brain. Same thing with the mold exposure; even if I took an anti-fungal, my immune system is my only real defense against the toxins that are released as a result of the fungus or bacteria. Some people have immune systems that can naturally rid the body of toxins that arise from bacteria; others have immune systems that can effectively fight toxins from certain fungi; others have immune systems that can do both.
Mine can do neither.
So, as my immune system is faced with a "double whammy" (Lyme AND mold exposure) there's basically nothing it can do for itself. I am now on four additional supplements that are supposed to help me fight these toxins. I am PRAYING that they work, since the toxins may very likely be what's responsible for what's happening inside my brain.
I just wanted to share this for anyone out there who's fighting a serious infection. I had no idea that you can fight the infection itself and still be extremely sick from the toxins that are released via said infection if you don't have a natural immunity to them.
In other news, I have had to move out of my house to get away from any mold that may be present. One of the most heartbreaking things I've gone through. I love that house to bits and I am so, SO sad to leave. :(
It is literally the absolute WORST feeling in the world to have a panic attack. Suddenly things are sideways, I don't know where I am, I don't know what to do, I'm nauseous, my heart is beating out of my chest... I fight this feeling constantly. Every two hours I'd say. I guess that's what the Xanax is for.
In addition to the antibiotics I'm taking (now three different meds - we've added Cipro in case I have bartonella, a coinfection common to Lyme that can cause these awful weird brain things that are going on), I saw a neurotoxin specialist a few weeks ago, just to make sure I haven't been exposed to toxic mold, as it can cause similar symptoms to Lyme and I had spotted a teeny bit of mold in my closet at my house.
Sure enough, bloodwork revealed that I've been exposed. She also did extensive testing on my immune system to figure out what I'm fighting this stuff with.
It turns out that, even though I'm on medication to fight the Lyme's disease (which assaults the bacteria itself), the process of that battle and/or the bacteria itself can cause toxins to be present in my brain. Same thing with the mold exposure; even if I took an anti-fungal, my immune system is my only real defense against the toxins that are released as a result of the fungus or bacteria. Some people have immune systems that can naturally rid the body of toxins that arise from bacteria; others have immune systems that can effectively fight toxins from certain fungi; others have immune systems that can do both.
Mine can do neither.
So, as my immune system is faced with a "double whammy" (Lyme AND mold exposure) there's basically nothing it can do for itself. I am now on four additional supplements that are supposed to help me fight these toxins. I am PRAYING that they work, since the toxins may very likely be what's responsible for what's happening inside my brain.
I just wanted to share this for anyone out there who's fighting a serious infection. I had no idea that you can fight the infection itself and still be extremely sick from the toxins that are released via said infection if you don't have a natural immunity to them.
In other news, I have had to move out of my house to get away from any mold that may be present. One of the most heartbreaking things I've gone through. I love that house to bits and I am so, SO sad to leave. :(
Monday, March 25, 2013
What your doctor won't tell you and what you DEFINITELY NEED TO KNOW before it's too late (especially if you have chronic, unexplained pain or illness)
Before I start - I don't have the energy to retrace my research and provide you with links, but please be aware that as an English major, I always, ALWAYS double-check my sources. Take it upon yourself to do the research.
It started last April with the most horrendous earache I've ever experienced. I'd never had an ear infection, so I assumed it was the start of one. Unfortunately I had no time to see the doctor before the camping trip I was leaving for that very afternoon.
Over the course of the trip I became very ill. The ear pain was still heinous, but a severe upper respiratory infection had begun. This was no head cold. It spread into my chest within a matter of two days.
I immediately saw a doctor, who prescribed Biaxin and steroids (as my breathing was labored at this point). I began to feel better within about a week; the ear pain, although unexplained as there was no infection, had subsided; the respiratory infection was coming to an end; all was right with the world.
Or so I thought.
Over the course of the next few months, my ear pain returned. Sinus infections returned. I saw two different ENTs. CT scans revealed that the pain that was now radiating from the base of by skull and ear down my neck and shoulder may have been related to a completely blocked right sinus (although I felt that was unlikely, since I've had sinus issues since I can remember). I had a sinuplasty (ouch!). The pain was still awful. Over the course of trying to figure things out I was prescribed several rounds of steroids - each round making me feel a little better for a short period of time. It would return full blast (and then some), however, and depression was setting in. (I have never, EVER been a depressed person.) Another CT scan revealed a cyst in my right sinus, but my ENT said it was too small to be causing all of the issues I was having. She referred me to a pain management doctor, who spent about three minutes speaking with me and then declared that I had occipital neuralgia. His suggestion was a steroid shot in the occipital nerve. It was scheduled, but then I missed the appointment (thank goodness. More on that later.)
I was at my wit's end when a massage calmed the pain at the back of my neck (apparently, not occipital neuralgia, and probably muscular???). Later that night (literally within hours of experiencing a little relief) I began to experience shooting pains all over my entire body. They were so intense that I asked my boyfriend to take me to the emergency room. The nerves in my eyelids were going insane - it felt like my eyelids were on fire. The pain shot through my face, arms, chest, legs, even my tongue. My bottom lip was numb and my legs were tingling. With a 6.5 hour wait at the emergency room, however (yes. yes, I did just say "6.5 hour wait"), I stuck it out and waited until the nerve pains had calmed, then headed home to rest.
Over the next few days I experienced these shooting pains several times. I started taking a vitamin B complex and they weren't as severe, but they were still there. I then began to experience dizzy spells. Not the room-is-spinning kind. It's hard to explain. When it happens it feels like things are a little sideways. My head feels really funny and it feels like everything I'm seeing is fake. I get disoriented. Which then causes panic attacks, respiratory distress, and basically the scariest thing I've ever experienced in my life.
Now, I need to devote a bit of info to my ankle problem here. Two years ago, my right ankle began to hurt out of nowhere. No injury, strain, anything. After physical therapy, MRIs, etc. - no one could explain the pain, so I went to see one of the top foot/ankle specialists in Maryland. Even he was puzzled. He therefore took some blood and tested me for rheumatoid arthritis, Lyme disease, and some other stuff I can't remember right now.
Everything came back negative.
Anyway, back to the present. Dizzy spells are occurring multiple times daily. I feel like I have the flu. Nerve pains are raging. I am now experiencing heavy, aching pains all over my body as well. At this point there was talk of possible MS, toxic mold poisoning, Lupus... the list went on and on. Symptoms were getting worse. I was getting really, really scared. And then - by an act of God (no, I am not saying that ironically. I know beyond a shadow of a doubt God put this woman in my path) - I had a conversation with a woman that most likely prevented me from being in a wheelchair.
I had missed a couple of weeks of work because of the pain I was in, and the woman who subbed for me, while looking for one of the pages I had sent in my sub plans, just so happened to come across a web page I had viewed on my work computer months prior for about ten seconds back when my ankle specialist had tested me for Lyme. No big thing. I returned to work and didn't see her for a while as she hadn't been in to sub for anyone else.
Then one day she was filling in for a fellow teacher. I thanked her for subbing for me while I was out for so long and she asked me how I was doing. I explained to her that I wasn't doing so great, and gave her a short rundown of my ailments. She then explained that she had seen the Lyme webpage and asked if I had been thinking I had Lyme. I then told her about my negative Lyme test, at which point she began to tell me about her battle with Lyme.
How did it start for her? Intense, unexplained pain in the inner ear. Pain in her ankle. Pain in her head. Pain that moved all over her body (similar, much?). She had been to see multiple doctors and specialists, none of whom could figure out why she was ill. She began to feel, much like I did, that she was crazy. She, too, had been tested for Lyme, but the test had come back negative. So she did some research. And then some more research. She began learning about the way the medical industry treats Lyme disease.
Most doctors won't even look for Lyme. But the ones that do? Well, they'll send a blood test off to LabCorp, and if that test comes back negative, Lyme as a diagnosis will be taken out of the picture. So then they'll start to look for other things, such as MS, chronic fatigue syndrome, various auto immune diseases... the list goes on and on. Here's the thing, though:
Only a SMALL PERCENTAGE OF PATIENTS WITH LYME DISEASE WILL HAVE A POSITIVE LYME TEST.
Yep. In fact, the state of Virginia just passed a law which states that diagnostic labs must inform patients that Lyme tests aren't reliable. Funny how doctors in Maryland (no lie, it's like a conspiracy around here) will tell you that "if it's unreliable, it's because of too many false positives." --- Ummm, seriously?
Second thing you need to know about Lyme: Less than half of those bitten ever experience a rash or bullseye. Our area is one of the most Lyme-infested places on the planet (the DMV and Northeast) - and deer ticks are so tiny that by the time they've gorged themselves on your blood and their little teeny legs come out of your body and they fall off (you're welcome for that disgusting visual), you'd never know. Especially if they're in your hair.
She read about how more and more people are being MISDIAGNOSED WITH MS, LUPUS, ETC., only to find out, after they're in a wheelchair and the effects are irreversible, that they have Lyme Disease. This is not a joke. This is not people on message boards all over the internet overreacting and assuming they were misdiagnosed.
This is completely legit. It's like an epidemic, particularly in our area. She then found one of the most educated people on Lyme - Dr. Jaller in Germantown, MD - and set up a visit, just to see if maybe that was her problem.
It was. He sent out a different blood test to confirm (one that only two labs in the entire country, from what I understand, will run). Sure enough, her Lyme levels were OFF the charts. She also had four co-infections that are common to Lyme.
It took two years of treatment, various rounds of antibiotics, etc. for her to shake it completely and become symptom-free.
As for me, I saw the same doctor last Monday. After listening to my symptoms, he is almost certain that that's what I have. I receive the official test results tomorrow, which STILL may not be conclusive. There are some patients who never have a positive test, but respond to treatment. There are other patients who won't have a positive test until they're ON treatment, and the bacteria has been shaken up by the meds. I just learned yesterday of a doctor who was diagnosed with ALS (Lou Gehrig's), and was told, as there really isn't anything you can do about ALS, that he didn't have very long. He was prepared for the worst. But having seen the research on Lyme and understanding that the disease likes to hide itself and masquerade as a number of other untreatable diseases, he thought... what the heck? And began to treat himself for Lyme. He never had a positive blood test either; but, on treatment, he found the bacteria of Lyme DNA in his urine. Oh, yeah. And totally cured himself and got better.
Dude definitely didn't have ALS.
But he certainly could've been paralyzed for life and could've even died if the Lyme was allowed to go on.
Because of the strange/scary neurological and cognitive issues I'm having I saw a neurologist, who took a look at the MRI of my brain and said she couldn't see anything that indicated MS - and she confirmed that my symptoms can be explained by Lyme. She also said that I didn't have neuralgia (thank God that I confused that appointment date for my nerve block shot, as the heavy amount of steroids would've made my immune system even weaker). I could write ten thousand posts about morons like the "pain management" doctor I saw who are paid to spend less than five minutes with you and then just treat your symptoms until your bank account is depleted... but that's a rant for another day. I am now on two different meds for Lyme (we started treatment before the results because he's that certain that I have it). Doxycycline and Tindamax. Unfortunately (and I was warned of this, both by my friend and work and the doctor) my symptoms have become much worse. The fatigue is so bad that I can barely write this post. At times I cannot walk down my stairs or get out of bed because my legs feel like they're filled with lead. My cognitive symptoms are much worse; the weird, dizzy/disoriented feeling is awful and I am now on Xanax (apparently, even panic attacks are a very common symptom of Lyme - ???). Although I certainly hope this isn't the case, it could take years for me to get rid of this since I had it for a year (and possibly longer) without knowing. I am grateful that God put the woman at work in my path and am even more grateful for His unfailing love, as well as the awesome family and friends He's given me who are all helping me get through this. In the meantime, though, it's really, really hard. I wouldn't wish this on my worst enemy. So please, PLEASE - if you read this and you know someone with chronic illness or pain - please share this with them. Especially if their illness is unexplained or their diagnosis wasn't based on anything conclusive. Have them look into the symptoms. There are about a billion, but it's worth looking into if you can't figure out what's going on. Even if this post helps ONE person who doesn't know he or she has Lyme Disease, it will be worth the three seconds it takes to share this post.
PLEASE SHARE!!!!!
It started last April with the most horrendous earache I've ever experienced. I'd never had an ear infection, so I assumed it was the start of one. Unfortunately I had no time to see the doctor before the camping trip I was leaving for that very afternoon.
Over the course of the trip I became very ill. The ear pain was still heinous, but a severe upper respiratory infection had begun. This was no head cold. It spread into my chest within a matter of two days.
I immediately saw a doctor, who prescribed Biaxin and steroids (as my breathing was labored at this point). I began to feel better within about a week; the ear pain, although unexplained as there was no infection, had subsided; the respiratory infection was coming to an end; all was right with the world.
Or so I thought.
Over the course of the next few months, my ear pain returned. Sinus infections returned. I saw two different ENTs. CT scans revealed that the pain that was now radiating from the base of by skull and ear down my neck and shoulder may have been related to a completely blocked right sinus (although I felt that was unlikely, since I've had sinus issues since I can remember). I had a sinuplasty (ouch!). The pain was still awful. Over the course of trying to figure things out I was prescribed several rounds of steroids - each round making me feel a little better for a short period of time. It would return full blast (and then some), however, and depression was setting in. (I have never, EVER been a depressed person.) Another CT scan revealed a cyst in my right sinus, but my ENT said it was too small to be causing all of the issues I was having. She referred me to a pain management doctor, who spent about three minutes speaking with me and then declared that I had occipital neuralgia. His suggestion was a steroid shot in the occipital nerve. It was scheduled, but then I missed the appointment (thank goodness. More on that later.)
I was at my wit's end when a massage calmed the pain at the back of my neck (apparently, not occipital neuralgia, and probably muscular???). Later that night (literally within hours of experiencing a little relief) I began to experience shooting pains all over my entire body. They were so intense that I asked my boyfriend to take me to the emergency room. The nerves in my eyelids were going insane - it felt like my eyelids were on fire. The pain shot through my face, arms, chest, legs, even my tongue. My bottom lip was numb and my legs were tingling. With a 6.5 hour wait at the emergency room, however (yes. yes, I did just say "6.5 hour wait"), I stuck it out and waited until the nerve pains had calmed, then headed home to rest.
Over the next few days I experienced these shooting pains several times. I started taking a vitamin B complex and they weren't as severe, but they were still there. I then began to experience dizzy spells. Not the room-is-spinning kind. It's hard to explain. When it happens it feels like things are a little sideways. My head feels really funny and it feels like everything I'm seeing is fake. I get disoriented. Which then causes panic attacks, respiratory distress, and basically the scariest thing I've ever experienced in my life.
Now, I need to devote a bit of info to my ankle problem here. Two years ago, my right ankle began to hurt out of nowhere. No injury, strain, anything. After physical therapy, MRIs, etc. - no one could explain the pain, so I went to see one of the top foot/ankle specialists in Maryland. Even he was puzzled. He therefore took some blood and tested me for rheumatoid arthritis, Lyme disease, and some other stuff I can't remember right now.
Everything came back negative.
Anyway, back to the present. Dizzy spells are occurring multiple times daily. I feel like I have the flu. Nerve pains are raging. I am now experiencing heavy, aching pains all over my body as well. At this point there was talk of possible MS, toxic mold poisoning, Lupus... the list went on and on. Symptoms were getting worse. I was getting really, really scared. And then - by an act of God (no, I am not saying that ironically. I know beyond a shadow of a doubt God put this woman in my path) - I had a conversation with a woman that most likely prevented me from being in a wheelchair.
I had missed a couple of weeks of work because of the pain I was in, and the woman who subbed for me, while looking for one of the pages I had sent in my sub plans, just so happened to come across a web page I had viewed on my work computer months prior for about ten seconds back when my ankle specialist had tested me for Lyme. No big thing. I returned to work and didn't see her for a while as she hadn't been in to sub for anyone else.
Then one day she was filling in for a fellow teacher. I thanked her for subbing for me while I was out for so long and she asked me how I was doing. I explained to her that I wasn't doing so great, and gave her a short rundown of my ailments. She then explained that she had seen the Lyme webpage and asked if I had been thinking I had Lyme. I then told her about my negative Lyme test, at which point she began to tell me about her battle with Lyme.
How did it start for her? Intense, unexplained pain in the inner ear. Pain in her ankle. Pain in her head. Pain that moved all over her body (similar, much?). She had been to see multiple doctors and specialists, none of whom could figure out why she was ill. She began to feel, much like I did, that she was crazy. She, too, had been tested for Lyme, but the test had come back negative. So she did some research. And then some more research. She began learning about the way the medical industry treats Lyme disease.
Most doctors won't even look for Lyme. But the ones that do? Well, they'll send a blood test off to LabCorp, and if that test comes back negative, Lyme as a diagnosis will be taken out of the picture. So then they'll start to look for other things, such as MS, chronic fatigue syndrome, various auto immune diseases... the list goes on and on. Here's the thing, though:
Only a SMALL PERCENTAGE OF PATIENTS WITH LYME DISEASE WILL HAVE A POSITIVE LYME TEST.
Yep. In fact, the state of Virginia just passed a law which states that diagnostic labs must inform patients that Lyme tests aren't reliable. Funny how doctors in Maryland (no lie, it's like a conspiracy around here) will tell you that "if it's unreliable, it's because of too many false positives." --- Ummm, seriously?
Second thing you need to know about Lyme: Less than half of those bitten ever experience a rash or bullseye. Our area is one of the most Lyme-infested places on the planet (the DMV and Northeast) - and deer ticks are so tiny that by the time they've gorged themselves on your blood and their little teeny legs come out of your body and they fall off (you're welcome for that disgusting visual), you'd never know. Especially if they're in your hair.
She read about how more and more people are being MISDIAGNOSED WITH MS, LUPUS, ETC., only to find out, after they're in a wheelchair and the effects are irreversible, that they have Lyme Disease. This is not a joke. This is not people on message boards all over the internet overreacting and assuming they were misdiagnosed.
This is completely legit. It's like an epidemic, particularly in our area. She then found one of the most educated people on Lyme - Dr. Jaller in Germantown, MD - and set up a visit, just to see if maybe that was her problem.
It was. He sent out a different blood test to confirm (one that only two labs in the entire country, from what I understand, will run). Sure enough, her Lyme levels were OFF the charts. She also had four co-infections that are common to Lyme.
It took two years of treatment, various rounds of antibiotics, etc. for her to shake it completely and become symptom-free.
As for me, I saw the same doctor last Monday. After listening to my symptoms, he is almost certain that that's what I have. I receive the official test results tomorrow, which STILL may not be conclusive. There are some patients who never have a positive test, but respond to treatment. There are other patients who won't have a positive test until they're ON treatment, and the bacteria has been shaken up by the meds. I just learned yesterday of a doctor who was diagnosed with ALS (Lou Gehrig's), and was told, as there really isn't anything you can do about ALS, that he didn't have very long. He was prepared for the worst. But having seen the research on Lyme and understanding that the disease likes to hide itself and masquerade as a number of other untreatable diseases, he thought... what the heck? And began to treat himself for Lyme. He never had a positive blood test either; but, on treatment, he found the bacteria of Lyme DNA in his urine. Oh, yeah. And totally cured himself and got better.
Dude definitely didn't have ALS.
But he certainly could've been paralyzed for life and could've even died if the Lyme was allowed to go on.
Because of the strange/scary neurological and cognitive issues I'm having I saw a neurologist, who took a look at the MRI of my brain and said she couldn't see anything that indicated MS - and she confirmed that my symptoms can be explained by Lyme. She also said that I didn't have neuralgia (thank God that I confused that appointment date for my nerve block shot, as the heavy amount of steroids would've made my immune system even weaker). I could write ten thousand posts about morons like the "pain management" doctor I saw who are paid to spend less than five minutes with you and then just treat your symptoms until your bank account is depleted... but that's a rant for another day. I am now on two different meds for Lyme (we started treatment before the results because he's that certain that I have it). Doxycycline and Tindamax. Unfortunately (and I was warned of this, both by my friend and work and the doctor) my symptoms have become much worse. The fatigue is so bad that I can barely write this post. At times I cannot walk down my stairs or get out of bed because my legs feel like they're filled with lead. My cognitive symptoms are much worse; the weird, dizzy/disoriented feeling is awful and I am now on Xanax (apparently, even panic attacks are a very common symptom of Lyme - ???). Although I certainly hope this isn't the case, it could take years for me to get rid of this since I had it for a year (and possibly longer) without knowing. I am grateful that God put the woman at work in my path and am even more grateful for His unfailing love, as well as the awesome family and friends He's given me who are all helping me get through this. In the meantime, though, it's really, really hard. I wouldn't wish this on my worst enemy. So please, PLEASE - if you read this and you know someone with chronic illness or pain - please share this with them. Especially if their illness is unexplained or their diagnosis wasn't based on anything conclusive. Have them look into the symptoms. There are about a billion, but it's worth looking into if you can't figure out what's going on. Even if this post helps ONE person who doesn't know he or she has Lyme Disease, it will be worth the three seconds it takes to share this post.
PLEASE SHARE!!!!!
Sunday, December 30, 2012
travel review of a fancy-schmancy place from a very normal girl
So my gift from Tad this year was dinner & a stay at The Inn @ Little Washington (Washington, VA). About three hours from home, this hidden gem is at the top of so many amazing lists I was in disbelief at the chance to be there. Just a select few of the many accolades:
Awarded a prestigious 5 stars by Forbes for both accommodations (1 of 57 hotels in the nation) and 5 stars for dining - 1 of 25 restaurants in the nation and the only restaurant in the DC metro area to be awarded so
AAA 5-diamond award for both accommodations and dining
Named one of the top 10 restaurants in the world by The International Herald Tribune...
It goes on and on. The reason, no doubt, is Patrick O'Connell - chef and proprietor (called the "Pope of American cuisine" by Robert Mondavi).
Okay, okay. So it's kind of fussy and a bit extravagant. How was it, actually? For two very normal people - foodies, sure, but not the Anthony Bourdain/Geoffrey Zakarian type, not the ultra-refined, caviar-for-breakfast type - amazing.
Truly.
I'll start with in Inn. Pieced together by a set designer from Europe (whose original design sketches for each room are artfully displayed throughout - a gorgeous, imaginative touch), there is a flair of the theatrical. Billowing fabric canopies, velvet couches, printed wallpaper... a carnival of textures and colors that I completely fell in love with. The two-level suite was amazing. From a simple, fresh basket of delicious fruit to the luxurious bathrobes, every detail was exquisite.
The service was REMARKABLE. We were greeted by a positively delicious pair of welcome cocktails and several friendly faces. Our welcome tour was helpful and inviting. We were assured multiple times that we needn't lift a finger while there, unless to summon one of the staff to serve us something delightful. :) And, just to make sure that my coverage of dinner can stay focused solely on the food, service at dinner was outstanding, as expected. We were visited by at least 9 different staff - each of them pleasant, polite, and extremely helpful with recommendations.
Now... onto the food. The fresh, local ingredients were stunning. (And so were the grounds themselves - the sheep, the chicken, the garden... I mean, seriously. Wow.) I'm not ashamed to admit that there were multiple things on that menu I'd never heard of before, despite being somewhat fluent in French.
Afternoon tea:
The tea room itself was one of my favorite parts of our stay. I love the rich colors and flavors, and that distinctive "travel to the orient" vibe that was present throughout the decor and the offerings. The soft Christmas music and lush Victorian garland everywhere were perfect. So many delicious tea blends to choose from - I selected a pot of hot African Rooibos and Tad chose something a bit cleaner with more citrus. Both were excellent. I declined the savory in favor of sweet (although I regret not giving the smoked-salmon cucumber sandwich a go). So very seasonal. Maple-pecan biscuits, mini pumpkin-cream pie... needless to say, tea left us much anticipation for dinner.
Dinner:
I'm going to try not to write three novels about this and stick to simple descriptions of our courses. Unfortunately I only have a few low-quality cell photos from Tad's phone (definitely not the kind of place where you whip out a camera and flash away). The bread was warm and satisfying, the butter was fresh and creamy (yes, I totally gave into dairy on this trip), and the wine was perfectly paired. We were delightfully surprised with our first amuse-bouche - a tasting portion of seared pork belly (I, of course, gave mine to Tad) and the Inn's playful take on "chips and dip" - a thin, toasted "chip" filled with cream, chives, and topped with caviar. We were doubly surprised with a second - a beautiful pairing of an apple-rutabaga soup with maple (so, so, so, so, SO ridiculously tasty... so creamy...) and a cheese-puff pastry made with Parmesan and some fancy cheeses I'm not fancy enough to remember. :)
Course 1:
I chose a beet trio which included a beet sorbet, some of the best chevre I've ever had, and orange essence. Tad enjoyed herb-crusted Caraccio with Caesar salad ice cream. Minds blown.
Course 2:
I had sauteed Nantucket scallops with curried cauliflower, sultanas, and garlic chips. Even more delicious than the first course. Tad loved his grilled pigeon breast with blueberry vinaigrette and zucchini crepe.
Course 3:
My mouth is watering just thinking about it. I had breast of roast pheasant with blackened black truffle shavings served over savoy cabbage.
Rich but balanced. Bursting with flavor. Perfectly cooked. Impressively tender. I want more. Right now.
Tad chose blackened beef tenderloin with bone marrow custard, caramelized fennel and fennel puree. As I loathe fennel and don't eat beef, I had to take his word for it - but he was very impressed.
Course 4:
I had the local gala apple tart. It was very good, but after the pheasant, nothing would have wowed me. I wanted more pheasant.
Tad was kind enough to share bits of his "Seven Deadly Sins" - a tasting-portion menagerie of deliciously creative desserts:
Meyer lemon confit, mini apple tart, limoncello pudding cake, chocolate bread pudding, mint ice cream with chocolate, something I can't remember, and a dark-chocolate cherry bomb (my favorite). That mint ice cream was seriously mint - it tasted like someone plucked a fresh mint leaf out of the garden and, with the wave of a culinary wand, turned it into something creamy and frozen.
While I am proudly a chicken and biscuits girl at heart, this was by far the most impressive meal I've ever had. To my delight (and surprise), Tad had arranged a private tour of the kitchen (there was a beautiful chef's table, I'm sure they were enjoying the Gastronaut's Menu!) and we got to see one of their wine cellars.
If given the opportunity, the Inn at Little Washington is absolutely not to be missed. Even if you choose the simple "continental" breakfast (included with your stay, as opposed to the hot breakfast offerings), you will enjoy four different exotic juice tastings (watermelon-mint was amazing!), house-made granola with almond, fresh yogurt and seasonal berries, delicious scones, sweetbreads, muffins, and 6 or 7 different accompaniments to choose from (we opted for creme fraiche, lemon curd, raspberry jam and apple butter). Even the coffee was delish. :)
I think that pretty much sums it up. Check it out sometime. You won't be disappointed.
Cheese puff & apple-rutabaga soup
Herb-crusted Carpaccio with Caesar salad ice cream
Piegon breast, blueberry vinaigrette
Beef tenderloin, bone marrow custard, fennel...
Pheasant breast w/black truffles and savoy cabbage
7 Deadly Sins
Local Gala apple tart w/vanilla bean ice cream
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