I've been reflecting a lot this Christmas season on the idea of Hope. As I sat in a Christmas Eve service this year, it occurred to me that this is really what the true gift of Christmas is all about. Humankind was lost in darkness, striving after a better life--a life with purpose and fulfillment--and the God of Hope who was ready for this all along sent His Son to the earth to make this kind of life possible. He restored the hope of the world by giving us the only thing that could restore us and bring us all out of death in to Life.
I love Christmas. I love the lights and the music; I love the food and the fellowship; and, I love the presents, both given and received. But this year I received possibly the best gift of all: the gift of Hope--the gift of an answer. One week before Christmas I had a doctor's appointment and, much to my own surprise, I walked out of that appointment with a diagnosis. I have Chronic Lyme Disease.
Technically speaking, this diagnosis is still tentative. There are other tests I can run (and probably will--if I can justify the cost just for the sake of more certainty) but they may or may not provide any more conclusive answers than what we already have. Based on the muscle tests I took at my appointment, I tested highly positive for all the treatment options that are most commonly used to treat Lyme and, based on those test results, my doctor determined that the diagnosis of Lyme is at least 60% certain. He also said he anticipates at least an 80% likelihood that the treatment regime he prescribed will be successful. Those seem like pretty good odds!
So, until I decide whether it's worth another few hundred dollars to try for a more definitive answer, I am perfectly comfortable saying that this is the answer I've been looking for. I have Chronic Lyme Disease. More importantly, I have hope of recovery again. I'd like to think that deep down I never really doubted that someday we would find an answer and maybe I could get my life back again, but the experience of actually seeing that light at the end of the tunnel ahead is a completely different feeling. Now I can be sure of what I hope for, certain of what I do not yet see. I know that there is something to hope for instead of just hoping for a better future.
In a nutshell, what Chronic Lyme Disease means is that I have an infection present in my body that is wreaking havoc on my whole system. Primarily, it suppresses my immune system, clearing the way for untold other viruses, bacteria, and fungi to come in and set up camp. The Lyme infection also releases a variety of toxins into my body, as a type of self-protection/self-preservation. These toxins also attack my immune system and adrenals (which regulate my energy, sleep patterns, stress levels, hormones, etc) as well as many of the neurotransmitters that are responsible for my mental functions, including concentration, short term and long term memory, reaction time, ability to make connections, mental stamina, and many others. This type of infection can explain basically all of the symptoms I've been experiencing in one way or another.
My doctor said it could take between 6 months and 2 years before I am fully recovered. There will be many different stages of the process, each with their own new challenges and possible side effects. The first step is to prepare for the metaphorical "battle" I am about to fight with my own body. The only way to fight an infection of this magnitude is with several rounds of different antibiotics. However, that process will cause more toxins and fungi to be released as the virus tries to fight back, so before jumping into that attack we are trying to make my body more prepared to handle the fallout. I am now on my second week of a wide variety of new supplements to serve this purpose. I am on very strong probiotics, antioxidant boosters, and something called BH4, to minimize the effects of the antibiotics on my system. I am taking a heavy-duty detox treatment which not only helps release and process the toxins in my body but also prevents them from being re-absorbed in the digestive tract (as they are with many detox therapies). This treatment also works to dissolve the "biofilm" which is a protective film bubble an infection creates to prevent antibiotics from being able to reach it. I am taking large amounts of Vitamin C, Vitamin, D, DHEA, and adrenal support to help boost my immune system so that my body can help the antibiotics fight of the intruder. Next week, I will be starting anti-fungals, Garlic (which is a natural antibiotic, antioxidant, antiviral, antibacterial, and anti-fungal), in addition to the antibiotic Doxycyclene.
In order to avoid many of the ill-effects antibiotics can cause, we are treating with a "pulse therapy" approach--which basically means we will alternate between different types of antibiotics every 6 weeks or so. This also helps prevent against building up an immunity to the medication. I am already getting a bit overwhelmed with the sheer number of new pills I am trying to keep track of (not an easy task when short-term memory is such a struggle already!) but I can already tell they are definitely making a difference. It will probably be several months at least before I start experiencing significant positive changes, and the whole process will come with many dips and bumps before a solid upward progression begins. However, after hearing from many sources that so often chronic fatigue issues are life-long, un-treatable issues, I am thrilled just to have the hope that a few years from now I may be back to relatively normal!
Before I wrap up, I want to take a minute to thank you all, my friends and family, for being so supportive and encouraging through this whole process. Your comments, notes, and especially your prayers have done so very much to keep me positive and get me to this point. I need you now more than ever, as I begin the real journey to recovery. May you all find encouragement in the God who offers His people a future and a hope (Jeremiah 29:11)!
Thursday, December 29, 2011
Friday, December 9, 2011
Entering phase... wait, what number are we on now?
Blah. I've had such a hard time motivating myself to get this post written and I'm not entirely sure why. Part of it, I'm sure, is how crappy I have felt of late. After a wonderful vacation week over Thanksgiving with remarkably little incident, I returned home and promptly found myself in a puddle on the floor all over again. Mostly I just feel so disoriented all the time. I can't hardly figure out where I am or what I am supposed to be doing. The good news (rather, great news!) is that my sleep schedule has improved dramatically since Thanksgiving break. I have to assume that this has something to do with some of the new supplements I am on because, even though it also required an enormous amount of discipline, willpower, crappy moods, and sleeping pills to start forcing myself to sleep at "normal" times and wake up feeling mostly rested, I know there have also been numerous times when I invested all those things in trying to re-set my internal clock and accomplished nothing. For those who don't know, over the last several months I have struggled immensely with various hormone imbalances that affected my ability to sleep. It got to the point where "normal" for me meant falling asleep sometime between 6-8am and waking up around 3-4pm. I would lie in bed for hours, too tired to think straight and yet something in my body was convinced it was time to be awake. If I ever did manage to fall asleep early (meaning 1-2am usually) I would wake up the next day feeling like I hadn't slept at all, despite having gotten 10 hours of sleep. All that to say, being able to be asleep by midnight most nights now and waking up by 10 or 11 feeling rested feels like nothing short of a miracle. Unfortunately, last night was the first night in a couple weeks that broke this cycle--I had my old insomnia until about 3:30 this morning and couldn't get out of bed until 1pm--but I am hoping this is just a fluke incident brought on by stress or something.
But I didn't meant to start ranting about sleep. I am determined to finally explain the results of my last doctors appointment. I think I mentioned that we were reviewing some blood test results and that, for the first time in years, they actually contained some semi-definitive results! Some context: we are searching for what kind of underlying cause is preventing me from being able to get better, and what may have started the chain reaction of problems in the first place. The last set of tests we ran tested for some rare genetic disorders and 2 of them came back positive--however they don't fully explain my symptoms and, frankly, I don't think one of them fits at all. If it weren't for the bloodwork clearly showing otherwise, I would be certain we were wrong, and I hope to discuss the possibility of a mistake more with my doctor soon. I have been treating these two conditions for the last 8 weeks and, though I have seen certain small improvements (such as in my sleep patterns) very little has changed.
The new tests we ran were testing for certain markers of a "biotoxin"--something in my body or blood that doesn't belong and is invisibly attacking my system. This could be anything from a fungal infection to a parasite to a viral infection. One of the tests (the Fibrinogen) came back normal, but the other two (MMP9 and MSH) were both radically high, clearly indicating that I DO have some sort of biotoxic infection! I'm sure I have never been so happy to learn that I am infected with some mysterious disease before as I am now. We are still a long way from a technical diagnosis, but at least now we know we are in the right ballpark. This fits very elegantly into my medical history as well, since all this started with an unknown viral infection (remember the "mono-like virus" I contracted in Jan 07?) and Epstein Barr (the mono virus) is commonly known to sometimes remain in the body and continue attacking, causing Chronic Fatigue.
So here's the bad news. #1: It is incredibly difficult to test beyond this point. There are some blood panels we can run for some of the more common viral infections--such as Epstein Barr or Lyme disease--but they are very expensive and usually inconclusive. From what I am learning, latent infections like this are just beginning to be identified by the scientific community. Not long ago, all that existed were tests that test for antibodies in the system; however these tests can only determine if the person has ever had the virus, not whether or not it is still present. There are tests starting to be developed, my doctor called them "PCR tests," which test for the genetic presence of a virus, but they are not well known and can only test for certain viruses. With so many different possible infections, each with unique strains and mutations, many of which may still be undiscovered much less measurable, it is an impossible task to try and test for them all. According to my doctor, testing in this way is basically stabbing in the dark hoping to hit the right one, and only gets a definitive answer about 20-30% of the time. Bad news #2 is that in most cases like mine, because the initial virus so severely weakens the immune system, it is very likely that there is more than one infection present in the system. We can guess that it started with some mutation of Epstein Barr, but given how many years have passed since then with a practically non-existent immune system, who knows what else I may have contracted. So, even if we did stab in the dark and happen to hit something, we couldn't be certain whether or not that is all there is.
So what now? While we make a decision about how much testing we want to, and can afford to, do right now, my doctor's office has a unique alternative method of diagnosis and treatment. Another reason I've had a hard time motivating myself to write this post is because I don't feel confident that I can explain how this works very well yet, so I will probably postpone many of the details until after I learn more. One week from today I am going in to try these "muscle tests" that my doctor believes is likely to be a more effective way to determine how to treat me. It may or may not explain exactly what kind of infection I have, but it sounds like it will help narrow down the range and hopefully provide information on what kinds of treatments will be effective. I know it has something to do with testing my muscle strength during exposure to certain compounds or medications to learn what my body "likes" or "dislikes," as it were. Hopefully I will know more after next week. I am (obviously) a little unsure about this process, but my doctor seems confident and optimistic about it and I am very excited to see what kind of results it produces.
Sorry this was so long. I am wrestling to find the balance between enough detail to be interesting but not so much that it becomes tedious. If anyone has questions or wants to hear more, please ask!
But I didn't meant to start ranting about sleep. I am determined to finally explain the results of my last doctors appointment. I think I mentioned that we were reviewing some blood test results and that, for the first time in years, they actually contained some semi-definitive results! Some context: we are searching for what kind of underlying cause is preventing me from being able to get better, and what may have started the chain reaction of problems in the first place. The last set of tests we ran tested for some rare genetic disorders and 2 of them came back positive--however they don't fully explain my symptoms and, frankly, I don't think one of them fits at all. If it weren't for the bloodwork clearly showing otherwise, I would be certain we were wrong, and I hope to discuss the possibility of a mistake more with my doctor soon. I have been treating these two conditions for the last 8 weeks and, though I have seen certain small improvements (such as in my sleep patterns) very little has changed.
The new tests we ran were testing for certain markers of a "biotoxin"--something in my body or blood that doesn't belong and is invisibly attacking my system. This could be anything from a fungal infection to a parasite to a viral infection. One of the tests (the Fibrinogen) came back normal, but the other two (MMP9 and MSH) were both radically high, clearly indicating that I DO have some sort of biotoxic infection! I'm sure I have never been so happy to learn that I am infected with some mysterious disease before as I am now. We are still a long way from a technical diagnosis, but at least now we know we are in the right ballpark. This fits very elegantly into my medical history as well, since all this started with an unknown viral infection (remember the "mono-like virus" I contracted in Jan 07?) and Epstein Barr (the mono virus) is commonly known to sometimes remain in the body and continue attacking, causing Chronic Fatigue.
So here's the bad news. #1: It is incredibly difficult to test beyond this point. There are some blood panels we can run for some of the more common viral infections--such as Epstein Barr or Lyme disease--but they are very expensive and usually inconclusive. From what I am learning, latent infections like this are just beginning to be identified by the scientific community. Not long ago, all that existed were tests that test for antibodies in the system; however these tests can only determine if the person has ever had the virus, not whether or not it is still present. There are tests starting to be developed, my doctor called them "PCR tests," which test for the genetic presence of a virus, but they are not well known and can only test for certain viruses. With so many different possible infections, each with unique strains and mutations, many of which may still be undiscovered much less measurable, it is an impossible task to try and test for them all. According to my doctor, testing in this way is basically stabbing in the dark hoping to hit the right one, and only gets a definitive answer about 20-30% of the time. Bad news #2 is that in most cases like mine, because the initial virus so severely weakens the immune system, it is very likely that there is more than one infection present in the system. We can guess that it started with some mutation of Epstein Barr, but given how many years have passed since then with a practically non-existent immune system, who knows what else I may have contracted. So, even if we did stab in the dark and happen to hit something, we couldn't be certain whether or not that is all there is.
So what now? While we make a decision about how much testing we want to, and can afford to, do right now, my doctor's office has a unique alternative method of diagnosis and treatment. Another reason I've had a hard time motivating myself to write this post is because I don't feel confident that I can explain how this works very well yet, so I will probably postpone many of the details until after I learn more. One week from today I am going in to try these "muscle tests" that my doctor believes is likely to be a more effective way to determine how to treat me. It may or may not explain exactly what kind of infection I have, but it sounds like it will help narrow down the range and hopefully provide information on what kinds of treatments will be effective. I know it has something to do with testing my muscle strength during exposure to certain compounds or medications to learn what my body "likes" or "dislikes," as it were. Hopefully I will know more after next week. I am (obviously) a little unsure about this process, but my doctor seems confident and optimistic about it and I am very excited to see what kind of results it produces.
Sorry this was so long. I am wrestling to find the balance between enough detail to be interesting but not so much that it becomes tedious. If anyone has questions or wants to hear more, please ask!
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